ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: MaryBKAriz on May 20, 2008, 01:05:34 pm
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Hi,
It seems so many are leaving a lot of details as they go through surgery. I have found it very interesting and feel a part of their cheering squad. There are SUCH great people on this site!!
I haven't seen as many things about CK. Sooooo, I am going to send you information as I go through this journey.
I was diagnosed late March, did a LOT of research, talked to numerous specialists in ANs and have decided to go with Dr. Daspit and Dr. Kresl at Barrow Neurological Institute. My team has done HUNDREDS of these with great success. I like both Drs. very much. Dr. Daspit I saw first and he laid out all my options. I could watch and wait, I could have GK, I could have CK, or any of the three types of microsurgery. He explained all of them the benefits, side effects, procedure processes, etc. I REALLY appreciated the respect he gave me by not pushing me one way or the other Dr. Daspit is a long time AN doctor (and said I needed to get on this site by the way) He is out of House. Of this stage, I need to say at first this can be quite overwhelming. I suggest strongly to do research, get the booklets from the ANA ask questions, stay in touch with the good people here. I avoided googling hits that came up with things like on Billy Bob's AN experience. I did look at the Mayo site, different hospital sites, etc. There is NO HURRY! I wanted to feel comfortable that I made the right decision for me..
Dr. Kresl is the CK radiosurgeon who will treat me. I didn't see him until few weeks later. In the meantime I had talked to another specialist here in town who only does one type of AN treatment and only one ind of surgery, and guess what, that is waht he recommended. He is NOT wih Barrow. I had talked to the Barrow Neurological surgeon who would do microsurgery, if I chose it (who recommended radiosurgery, by the way!) By the time I did see DR. Kresl, I was leaning towards CK, but didn'y let him know that. He did come back with that recommendation. He does BOTH GK and CK.
Once I decided on a treatment, a couple of weeks ago, I was scheduled for my CK about 4 weeks later. Last week I had a blood test for the MRI to make sure I could get the contrast. (if I understood that correctly).
So today I go in to get my mask made. The mask will hold my head steady during the 3 consecutive days I will have the radiosurgery. (June 2, 3, and 4th) Each time it will take up to about an hour. It is fractionated as opposed to the GK one day process. There are no devises screwed to the head. I will get a CT scan also today with my mask on and then I will go get a specialized MRI. I have worried about claustrophobia, as many on this site know. I have been given lorazapam for anxiety so I feel I will sail happily ala pirate fashion (If you have no idea what I am talking about go to the "Good Morning" thread under AN Community on this site). I feel a little nervous about today, but not too bad. It is an adventure in my life for sure and my dear husband has been at my side through out.
I will let you know how it goes. Have a great day, dear people.
Mary 8)
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Mary
FYI... see link :)
http://anausa.org/forum/index.php?topic=3929.0
Congrats Mary on rockin' and rollin'! sounds like things are all set and I know you are in fab hands at Barrows! I am SO cheering you on and sending those wellness hugglez to you! You're gonna do great! :) Plus, "happy pills" help the cause! ;)
xo
Phyl
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Hi Phyl,
That is a GREAT thread!
I DID forget to say I accessed the CK support site, also. WOW, it is great! I asked questions of the physicians there and they were answered so quickly! I do not know how those doctors do it. I also asked DR. Chang of Stanford questions in emails and he answered them all for me. One thing I HAVE to say is the AN support is terrific!
Phyl, I am so glad you are cheering me on. I send many hugs to you in appreciation. :) You are a dear person!
Take care,
Mary
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naw, I'm just being me.... glad the thread helped! Hoping you will add to the thread once your CK is done! :)
xo
Phyl
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Mary -
thanks for starting this subject. I don't know much about CK and am very interested in learning more. I'll have to make sure to follow your posts.
Jan
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Mary,
We'll be with you every step of the way.
I'm feeling guilty, when I went to that thread Phyl posted, I noticed that I posted several times before treatment, and not once since. :-[
I should probably add my own account - maybe I can post my cyber-man pictures again.
Best wishes,
Steve
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Pls do! :) That's why I started that thread! :) The more experiences noted there, the more folks have for their research efforts.
Phyl
Mary,
We'll be with you every step of the way.
I'm feeling guilty, when I went to that thread Phyl posted, I noticed that I posted several times before treatment, and not once since. :-[
I should probably add my own account - maybe I can post my cyber-man pictures again.
Best wishes,
Steve
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Best wishes, and I hope the happy pills do their job!
Tamara
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Hi,
I REALLY appreciate the well wishes. I find this site so reassuring!!!!
I got through yesterday with flying colors, may I say! Everything was either on time or early. It ran like clockwork. There is no doubt they know what they are doing and everyone was kind and very informative! My husband and I arrived mid afternoon, parked in their special convenient password-only parking lot. That i a first very nice touch. The parking garage is FAR away!
I first went to the CT scan room. There on the table was a mask already made and my perfectly flat mask. The one that was to be done for me by the technicians. She put hers on for me to show me what it looks like. It was firm and you could see the face imprint on top. Then she showed me my mask telling me it would be soaked in very warm water making it malable. I was to lay on the table and had a special CK "pillow" that held me head in place. She put in an IV which is always an issue with y non-existant veins, but I am so used to that I had no trouble with that.
On the table were attachment places beside it for the mask. I was to close my eyes as she stretched it over my head. (It was hot like towels in a spa, but the texture was more like stretchy tight fish net stockings....very strange but not unpleasant at all.) I could see through it fine once it was on, although most of the time I shut my eyes. A nice touch also, they had a photograph of sky and clouds backlit on the ceiling. Quite peaceful looking.
As I said the mask started out flat - looking something like a disposable vacuum bag before use. After she stretched it over my head she attached it and sent me through the CT scanner as it was drying (and tightening). By the time the scan was done, it had solidified into the imprint of my head and looked from the side like a new version of the old movie, "Alien". OOOO how proud I am! ;D Being claustrophobic, I was worried ahead about being "stuck" in the tight mask. I had a moment at the beginning I had a moment of panic that I was able to short circuit by overloading my brain (I did not notice any effect of the "happy" medicine after I took it). After I kept my mind going in more positive direction this part was not too slow, so I managed quite well. She then called MRI and they got me in earlier than the appointed time. She escorted us over there and got us started on that process.
I do NOT like MRI's. I was determined I would get through this. This is a specialized MRI just for the head. It is the small tunnel quite snug. The good news and I was pleasantly surprised, the lighting inside it was just right, the soft breeze was calming AND it had a window to see out. It really was mirrors, but I could see the technician throughout the procedure. Ib the long run it was easier for me than the open MRI with no way to look out. She also took me out between scans when I asked as opposed to the guy who argued with me at the last one. This one had padding on each side of my head and held it gently plus there was a helmet placed over my head. The helmet is very close to the head, but you can see through it fine.
The scan was only done on the tumor area of my brain so it was about 15 minutes total of scanning. I asked for earplugs because I was told this is particularily loud. I found not only did it help with the noise level but it also felt comforting like swimming underwater sound. This is what I did to keep me calmer. First, during the long 10 minute scan I counted slowly to 600 (I was only off by a couple of seconds when it ended). If my mind started wandering at the same time i was counting, I'd look out the window or close my eyes. In addition I tried to think what the sound reminded me of. DON'T LAUGH....with the earplugs, the machine sounded like a huge cat purring. I said DON'T laugh. No it was not the happy pill, either. It didn't seem to do anything. I just like to have my imagination tapped into and combining that with my counting kept me from staying in a panicky feeling when they did strike.
So we were finished after that and we went out and had a nice dinner, just the 2 of us. Nothing like a romantic evening to the BNI and dinner.
I wanted to take photos, but the technician didn't know if it was allowed, so instead I wrote in details. Sorry about the length, but those wanting details, I hope it helps. Next week I go see Dr. Daspit for pre-treatment appointment. I can ask my last minute questions, if you have any suggestions let me know.
Proud Mary keeps on..... ;)
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Congratulations on your trip,
I have no knowledge on CK, but that was interesting what you experience. Thank you for the detail journey.
What is the mask for? You said the mask will hold your head steady during the 3 consecutive days you will have the radio surgery.
I just hard to picture, I am visual person.
eve
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Hi eve,
this is what my CK mask looked like on... just disregard the face behind the mask.
Phyl
(http://image1.frappr.com/pix1/i/20060405/f/5/a/f5aedd300bd19a7ead5bc58fd29e0be80_medium.jpg)
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thank you for the fast response.
wow!
and are you awake through the process?
eve
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eve, just call me "Quick Draw McPearl...." (ok, you older folks, think back on that one!) :)
Yes, wide awake. I was on Ativan to "curb the edge" but actually, I napped through it. I sleep through MRI's, dentist's drills and I napped through the CK treatment.
Phyl
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Hi Mary,
Glad to hear things are moving right along for you. I've 4 months out from CK and doing fine. When I went through it, I kept my eyes closed most of the time. Didn't require any meds but just focused on the music playing in the background. By the end of each session, if they had kept it up a little longer I would have been fast asleep. Out of curiosity, I opened my eyes twice which was a mistake for me. The eye was right over my head and for some reason, it got to me briefly but actually just enough to get tickled at myself for my reaction. It looks odd staring right at your head. So just relax and dream about lying at the beach soaking up the sun and you'll be fine.
Good luck!
Sandra
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Hi Phyl!
This is Annette, I'm Mary's fellow AN'er from Arizona. We've become really good friends and have been supporting each other through this AN journey. I'm having CK also and I've got a question for you. I see in your pic that you have long hair. Did you have long hair when you had the CK performed? If you did, what did you do with it on treatment days? I have long hair and when I went to get fitted for the mask, the tech tucked my hair into my blouse. That was okay for 5 minutes but I know I will not be able to stand that for anytime more than that. I'm seriously considering having my hair cut as I go in for a dye job tomorrow. Oh, and is it okay to dry my hair so close to CK treatment (starting next Wed.)
Thank You!
Annette
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Mary, my dear friend!!
You did well. I knew you would. ;D Thanks so much for being my support. My family is there for me, of course, but they do not understand what I am experiencing, like you do. I'm glad the balance exercises are helping you and that you've been feeling better of late. Keep up the good work pretty lady!!
Talk to you soon, next week is a BIG week :o
Annette
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Oh I am so glad to hear from all....Thank you!
Yes, I am thrilled I have been given the gift of a new friend because of this diagnosis. Good things come from every experience!!! Annette has been a true gift in my life! THANK you Annette. She is forging my path AND at the same place with the same doctors. Thanks Phyl for posting your mask photo. I love that picture.
Annette, I am cheering you on, as you know. Remember if you need anything...call me. I feel so great having you here.
I don't know about the hair. I got mine cut just recently so it was not an issue. Can you wear 2 layers, tucking your hair between the layers, then look down, giving it a little slack before the mask is put on???? By the way I love the color of your hair.
Thank you, also, Steve, Jan, Sandra, Tamara & Eve - It helps!
Mary
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First I have to say, you go girl to AJ!!!!! It is her first CK day. Sounds like she is preparing for tomorrow.!
I need to tell you today started worse than most. I am dizzier today and my tinnitus is really acting up, but we saw my lead Dr. today, Dr. Daspit. It is my pre-zap appointment. I am so glad I have such a good team. I needed to sign some papers, I asked some questions and he asked some questions. I told him my balance was getting to be more of a problem. We discussed that and some post treatment options. Then he asked if I thought my hearing had gotten worse. I have thought the first test his office had done was better than I expected, anyway. When I told him I thought it was worse, he did another test and after it was finished he informed me my hearing was no longer worth saving in that ear.
Next thing, BOOM, he was suggesting I switch from Cyber Knife to Gamma Knife. The reason for fractionating it in 3 dosages over 3 days was for saving hearing. That reason is gone. Gamma has been around longer, so it statistically is more conservative route. Now, we have the mask, the appointment, the mindset one way and WHOOSH it is changing in front of me. After many questions, answers, thinking by all 3 of us what was finally decided was to do Cyber knife after all but only ONE stronger treatment, so it is similar to GK in its dosage. So Monday is my ONLY day. I think by the end we all felt this is the right way to go.
Now back to my hearing and balance. Earlier he had given me a prescription for vestibular therapy. That was before the hearing test. then after treatment, we will re-assess but he was talking about destroying my cochlea so it would hasten my balance issues to a head and I can start recuperating some alternative balance techniques. I of course will have absolutely no hearing if this is done, so if this all happens I may have the BAHA implant to send sounds on my right side to my good left side. He only touched on that but because of this AN site I knew what he was talking about. ;D
I will get Mary back, in the meantime, like. Like Arnold says, "I'll be back". There is too much mischief to be attended to.
Happy sailing
Mary
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Gee, Mary, you are just full of surprises, aren't you ;) Talk about changing gears!
I don't know much about GK vs CK, but from what you explained in your post, I think you made the right choice.
Good luck on Monday. Don't worry about the SSD - as you know, lots of us here have that issue - and the vestibular therapy will help with your balance.
Best of luck to you, too, AJ. Let us know how things go :)
Jan
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Mary,
Sorry to hear about the hearing. I can't remember where it was before. Is it really too far gone to save? ???
I have seen several times on the CK forum Dr. Medbery indicate that if the hearing can't be saved, GK and CK are the same, and either one will work fine. I have also seen reports of people getting CK in a single shot, in situations where hearing preservation is not in the cards. So it all sounds reasonable to me.
It is the case that half a balance nerve is worse than none at all. The scrambled signals just make matters worse for the brain to try and sort out. With one side completely gone, the brain can retrain and do pretty well. You weren't planning on joining the circus, were you? Just read Water for Elephants instead. :)
Daisy Mazey was very pleased with herself when she re-learned not only to ride a bike (even Jan has done that ;D ), but went free-hand down a stretch through an orchard. She posted a picture to prove it. So you will recover some pretty good balance, and lose the dizziness as well. Hopefully by September. ;)
Best wishes, we'll be watching for your one day report next Monday.
Steve
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Steve and Jan,
Thank your replies, it always help to know people who understand are our there a mouse click away.
I woke up feeling better this morning - YEA! So I cleaned the refrigerator. Maybe I don't feel as good now. :D
Steve, I have done some experimenting with my ear. I do have some hearing BUT I only understand at best 2 in 10 words. I don't have a clue where sounds are coming from. It is too weird. I listened to canned telephone message the other day while I was on hold. My good ear, it sounded perfect, the other ear it was faint but so distorted it sounded like static. This was the first time I noticed faintness in the sound. Last year at this time I had 100% word recognition in both ears! The change has been interesting to adjust to, but if the loss in that one ear is the worst of my problems after the dust settles, it won't slow me down much. I havr too many role models here forging the trail! A bicycle is some challenge. :o
It also good to know that DR. Medbury is saying the same thing. My hubby, Weldon, was very listening to the tech talk better than I was, I was still in emotional "whoa" mode! ;) But we do feel good about it and the doctor explains and answering questions well. I really feel I am in great hands. Hooray! ;D
Jan, you get your processor next week. I will be thinking about you.
Take care!
Mary
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Hi, Mary
Lurker elliemae here....I've been eagerly following your story as I try to decide about which treatment I want. I am interested that your Dr now suggests GK instead of CK when only one dose is needed. I had a CK consult a few weeks ago, and since I have no hearing in the AN ear, was told that a one-shot CK would work for me. (This center does not do GK). However, after the fact, I started to wonder if the 3-shot CK would be less damaging to other areas, and called back with the question. Dr's answer was "possibly", but the difference was not really measurable; he said if I decide on CK, we can talk about options.
So, I'm still wondering about that and I look forward to hearing the rest of your story!
Wishing you good luck on Monday!
Elaine
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Wow, Mary, the time is here! In case I don't get a chance over the weekend, I wanted to wish you the best. Will be looking for your updates after the procedure. I'm really getting jealous of all of you brave souls that have made treatment decisions and are forging ahead with those chosen treatments. Way to go!
Thinking positive thoughts for you,
Cindy
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Now that the dust has settled from the last appointment, I am doing better. Since Wednesday when I had the surprise revised 1 day CK or 1 day GK option my head is swimming but that is same-o, same-o with my "wonky" head. :D
I think the Doctor would have gone GK if I had presented with the hearing loss at the beginning. I would guess saves the CK robot to attend to other patients, since it treats more than head maladies. The first time he saw me on one of my best days. At very best now I would guess I have 67% loss. Since I would have to start all over and reschedule the WAIT again it seemed best all the way around to stick with CK but go to 1 day.
WEIRD OCCURENCE 9,987 - For some tome, I seem to fatigue all of a sudden. So I laid down on the couch on my good ear to just relax a bit. News was on TV and my good ear was on the pillow. FOR SOME reason I could understand most of what was being said. I know my hearing vacillates, but it seems to do that between bad and down right totally dysfunctional. I started questioning my decision. It lasted like that until the commercial. I couldn't understand ANy of the commercial and when the news came back on it was back to very bad. I have never noticed it changing that fast before. I know these AN's are little rascals, but my AN, "Goldie", seems to really get mischievous. Anyone else having this happen? ???
Cindy and Elaine. I am cheering you on, also. Making the decision has to be the hardest part. I have felt quite a bit of relief since scheduling this.
Annette, Hope your last CK treatment went well today. I have been really thinking about you! :)
Take care everyone,
Mary
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Hi everyone,
Day after tomorrow and i have the CK. Time did pass quickly, and I am glad! ;D Today instead of my occasional twitches (often in lip and eye on AN sight) I am having eye spasms? I guess that is what I would call it. My eye closes about half way for a few seconds. Last couple of days have been weird symptom days. Perhaps because of the adreline, knowing the CK is soon?
Hope all is well for everyone today.
Mary
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Hi Mary,
What the heck is "Goldie" doing to you lately? I'm sorry to hear what it's been putting you through.
I'm sure you are anxious and excited about Monday's appointment. I mentioned your name to Amanda and told her how we met. You'll do fine Mary. Just remember to take deep breaths and relax. Take time getting comfortable in that mask. Make sure your nose and chin are in there correctly. First day, the tip of my nose was turned up a bit, second day my chin wasn't in the mask all the way. If you get a headache afterward, take ibuprofen, Amanda said it works better than acetemetophin because of it's anti-inflamation properties.
Please know you'll be in my thoughts. And I'll pray Dr. Kresl zaps the heck out of Goldie. She needs to go away and leave you alone now. I'll be in touch!
Annette
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Mary~
Peaceful thoughts to you & Weldon in the next few hours and days...I will be saying special prayers for you both! ;)
K
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Hi everyone,
Thank you for the support! I know it helps. Time is passing faster and it will be Monday morning soon. For those others who are going through surgery/treatment - I wish you best of luck this coming week, too!
Annette.......you are a POSTIE!!!!!!!!!!!!!! Congratulations for getting the CK behind you. I knew you would fly through with flying colors. I am glad you have had some time to rest and are taking care of yourself. You are a superb lady and I am so blessed to have you as a friend. Like my "kids" say, "you rock"!
Kay, I really appreciate you. Maybe I should say you "Round Rock"! (for those of you who say, "huh" - we both had lived in Round Rock, TX.
Hugs,
Mary :)
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Mary~
I like the Round Rock except that I have tried really hard the last few months to get rid of my "roundness"!!
K
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Hi Kay,
I wanna get rid of roundness....how are you doing it?? You are something else, girl! :)
Your admirer!
Mary
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Mary,
You didn't think I'd miss this, didcha? :)
Sending MAJOR wellness wishes for tomorrow! I know you are in fabulous hands tomorrow.... hang tough... know I am cheering you on..... you are going to do fab. Deep breaths and as you go through it... .just think of Matthew McConnehay (sp?) drizzled in Hershey's syrup as noted in the "Good Morning" thread! Works like a charm! :)
Onward and upward, Mary!!!!!!!!!!!!!!!!!!!!!!!!!!! Will check on you later!
xoxoxo
Phyl
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...Matthew M dripping in chocolate?!?! What have I been missing in that "Good Morning" thread? Guess I'm going to have to wonder over there and see what's going on...
But, Mary, that definitely sounds like quite a visual to help you get through your treatment. Again, good thoughts going your way!
cindy
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Mary -
just wanted to say, once again, good luck tomorrow!
I'll be thinking good thoughts on your behalf! I hope everything goes well.
Annette - congratulations on being a postie ;D
Jan
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Go, Mary, we are rooting for you, it will be fine, best wishes, all that stuff!
Steve
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Hi Mary,
I'm new here. Been following your posts and they're very informational. You'll be in my thoughts and prayers tomorrow.
Mona
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Hi, ;D
I am now a postie......YEA! It went well, I am just TIRED so I wioll write tomorrow. I wore my pirate socks and they helped me sail on through. I will write more tomorrow, but wanted to say a HUGE thank you to all how sent prayers, best wishes, positive thoughts etc. It helped more than even imaginable. Till tomorrow....
Take care,
Mary 8)
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Mary~
Thoughtabout you all day -- glad it is all over for you!! Get some rest...
K
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I also thought about you all day.
I'm so glad everything went well.
Congratulations, postie ;)
Jan
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Post-Toastie Mary. Has a nice ring!
See you later, get some sleep.
Steve
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Alright, Mary!!! Hope you were able to rest last night - will be looking for your updates...
Cindy
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Hello dear friends! :)
Thank you for all your support and encouragement and congrats!
Today I feel Mahvelous, as Billy Crystal would say. I am a little dizzy, but I was dizzy before CK. I have no headache or any other symptom I didn't have before the CK. I slept like a rock last night.I am hoping I am inserting a photo here. If there is gibberish, I goofed and will need help from someone to tell me how to do it. If it worked, YEA!(http://anausa.org/Users/maryknape/Desktop/CK Photos/Pirate 3a.jpg)
So I woke up EARLY yesterday, like Santa was coming or something. I wanted to get it over and I was ready and felt very comfortable with my decision. My sweet husband, Weldon, and I left very EARLY because the Hospital is 25-35 miles away into the downtown area of Phoenix. We got there EARLY. Yep, gotta EARLY theme goin' on here. Than we had to wait needless to say. They weren't as excited about this event, like I was. ;D When Amanda called me back, we went straight to the CK room, going through the control center for the CK. That was interesting with all the monitors and equipment. One of my doctors was already there. So Weldon took a picture of the 2 of us. Amanda explained what was going to happen with whurs clicks and chunk sounds that "Cybie" would make while zapping my AN, "Goldie". She showed me how the mask is connected to the table. It is not screwed on like I imagined it has clips that twirl into place (like the back of a photograph) and voila - it is attached. We took p[ictures as I was attached, unfortunately they turned out fuzzy. I will post a couple of the better of them.
I asked how I can get released if I needed it after we started. She said she had a monitor just for her, where she will be attending to my needs. As you might remember, I am claustrophobic and this mask intimidated me. I did take happy pills, although I did notice just a small difference and no such "happy". :D I wore my pirate socks! I am a loyal wench! (For those of your reading this saying, huh??? Go to the "Good Morning" thread under AN Community and read first 10 -pages or so of that thread.) I had made my own eclectic CD with sentimental music, classics, calming music of different styles, and some upbeat fun music. Amanda had some trouble with her CD player, but she didn't give up. She found a boom box and put my CD in there. Talk about customer service! It was great to hear that special music.
So after the explanations, questions, etc. I was TIGHTLY affixed to the table. TIGHTLY! This was the part I had dreaded, but I soon adjusted to it, staying as still as possible, it became less and less of an issue. I opened my eyes a couple of times to see my new friend diligently doing his job, somehow that was calming to me. My job was to stay still, his was to zap "Goldie". If I started feeling panicky I would think about how good I feel about my decision, how good it will be to be a toastie, where we will go to lunch, ANYTHING that kept my mind busy. For those of you that are claustrophobic, If I got through it, you can too. It is painless, I felt great afterwards and The happy pills worked.
Before I knew it 50 minutes had passed and Amanda said cheerfully, "You're done!" I will see Dr Daspit in 6 months and have a follow up MRI to compare the tumor. If I have ANY questions, they want me to call. The nurse will call me today to see how I am doing.
Anyway, time went surprizingly fast. We took the mask (great for Halloween). When we went outside, I posed in my whole pirate outfit and the mask, the photo above, if I did it right. If that photo works, I will post more photos.
Take care all,
Happy Post Toastie Mary in Arizona
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Can someone tell me how to post photos?
Thanks,
Mary
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Mary~
I sure don't know about pictures (did you change your aviator picture too b/c now it isn't showing anything). I am so glad it is over for you! WOW!! That sure sounds like the way to go! Aren't you glad you just have to do it once?
Congradulations!!
K
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Mary,
I knew your claustrophobia was going to be difficult..... but..... do you know just how dang proud of you I am? :-*
Ok, pic in post... make sure you posted your pic online (ie: Photogallery, frappr, etc). Once posted there, hold the mouse over the pic and right-click the mouse. Pop up window opens. Scroll down to "Properties". Once Properties opens, there is a URL address there for the pic. Highlight it and "copy" (cntrl-C)
then, come here to post. In choosing "reply", click the picture Icon above noted as "Insert image". You will see brackets with the letter I in them (2 of them). In the middle of the 2 sets of bracketed-I, do a "Paste" (contrl-V) and you will see the URL you copied inserted. Hope that helps.
Postie-Toasty-Mary... I truly am proud of you! You've done good! :)
Phyl
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Thank you!
Phyl, Okay, I will try to retrieve the picture off my family blog. I am so happy I go only one day. I did get adjusted to the mask so I think each day would be easier, but no more days! The nurse at the hospital has already called to check on me. I really think I am doing great. You have been such support to me, you will never know and I GREATLY appreciate all your kind words during your hiatus.
Kay, Is my avatar back??? I didn't do anything with it. "Here Avatar", "Sit!", "Stay". Well, it usually works with the dogs. It shows on my 'puter so if it is still gone, please let me know. I am glad it is over and feel thankful and blessed. Now all I do is monitor for unwanted changes. Hopefully, today's condition is a good omen.
Lots of hugs to you both!
Mary
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Here is the first photo, hope it goes through - Photo of "Cybie".
(http://bp0.blogger.com/_pH5fcEIUsbM/SEVrL8aiIOI/AAAAAAAAACY/wHoiHTuOg0I/S240/Cybie+the+CK.jpg)
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Photo of Post Toastie Wench in Mask(http://bp0.blogger.com/_pH5fcEIUsbM/SEVsw8aiIPI/AAAAAAAAACg/QGtIP54eQvc/S240/Pirate+3a.jpg)
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I am attached to the table by Amanda.
(http://bp0.blogger.com/_pH5fcEIUsbM/SEVtO8aiIQI/AAAAAAAAACo/B-_hvCbq5N0/S240/Attaching+Mask.jpg)
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Mary~
the aviator is back!
ohhhh, now pictures...
k
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Postie-Toasty-Wenchy-Mary,
what the heck do I say? :) LOVE the Piratitude!!!!!!!!!!!!!!! Great pics hun! you did it.. .you posted the piccies... you got through the treatment.... onward and upward! :)
Great job!
Ok, logging off.
Phyl
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Mary -
thanks for the play by play. It sounds like you did mahvelously yesterday ;)
Very cool pictures 8) but I have to ask. How many strange looks did you get from passersby while you were posing for the camera?
When I exited the hospital after my BAHA surgery with my wonderful "hat" I got the strangest looks :D
Oh, and did you thank Amanda for going with the color scheme? Her red scrubs fit the theme quite well.
Jan
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How is this Bonnet for the Bonnet competition??? :D
(http://bp0.blogger.com/_pH5fcEIUsbM/SEWaJ8aiIXI/AAAAAAAAADg/9lb3oH933jc/S240/Pirate+wrench+portrait.jpg)
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Jan, Phyl and Kay.... Thank you for the comments. I DID get some looks. My poor husband and what I put him through!!!!! He would never have chosen to do the pirate picture on a busy intersection in downtown Phoenix. However, we have been together 40 years so he is used to my antics. I felt like having some fun. After having CK, nothing could phase me!
Big hugs,
Mary
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Postie-Toasty-Wenchy-Mary,
My bosses currently have no clue why I am giggling my butt off right now! and they think I'm doing rep commission calculations!
That is TOO darn funny! :)
Ok, I'm outta here... truly.
xoxo
Phyl
How is this Bonnet for the Bonnet competition??? :D
(http://bp0.blogger.com/_pH5fcEIUsbM/SEWaJ8aiIXI/AAAAAAAAADg/9lb3oH933jc/S240/Pirate+wrench+portrait.jpg)
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LOVE IT, Mary! And you sound like you're doing great! So glad!
Boy, if and when I finally treat my AN, I will really be under pressure to come up w/ a great bonnet...
cindy
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Thank you, Cindy!
If you have any questions about my experience with cyberknife, let me know. I do have a serious side, too. :D
Best luck in your decision whether it be watch and wait or one of the treatments. I will cheer you on with any choice you make.
Big hug to you!
Mary
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Mary -
You're making this bonnet competition really hard - so many great entries to choose from :D
I just love your sense of humor and the fact that Weldon went along with you. If you don't have humor, what do you have?
Jan
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Boy, I agree with that statement!!!!!!
Humor has been a mainstay for us in our most difficult times.
I am 3/4 through with the book we are reading in the AN book club, so I have something to keep me out of too much trouble. DARN, no antics today. ;D
Mary
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Mary -
aren't you just loving the book? I had the unexpected opportunity to find time to finish it this weekend - the kids found a way to entertain themselves for a little while :)
I found the end very, very interesting. Can't wait for the discussion to start.
Jan
Okay, I'm done "hijacking" this thread ;)
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As they say at Staples, "That was easy."
I like the bonnet shot, but I really like the full regalia pirate shot in front of the building. The socks are especially delightful. Are those official pirate shoes? ;D
Congratulations on getting it done, I am glad it went so well, and I am very happy for you.
Steve
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:D :D :D :D
Thanks Steve.
This Mornings Update:
I think I am having some side effects kick up, but it went well and I am sooooooo happy to have it over.
I guess I am having some side effects kick up. ??? I do have escalated dizziness issues. This brings on some occasional nausea. My hearing is not as good, I can hardly hear a thing, but it was terrible to begin with. I am not sure if it is connected, but I have pain in the bones of my face mostly around my eye - on my AN side. There is no pain that I can detect where the tumor is.
At the same time I am doing a happy dance to be a postie. The dance is a little weird, trying to hold on to anything to keep the dance steady.
Take care all,
Mary 8)
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Hey Mary,
Hope you're feeling better this afternoon...
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Mary,
It sounds like you are having a little swelling. Try some Ibuprofen. If you continue to feel poorly, ask your doctor if you should try a short course of a steroid.
Hope you feel better soon.
Steve
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Mary -
hope Steve's recommendation works for you.
Please let us know how you feel tomorrow.
Hoping it's a lot better :)
Jan
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Good morning,
Can you have swelling this soon after CK? I thought it was 3 - 8 months. I am taking naprosyn for an unrelated issue. It is an anti-inflammatory, so I don't think I can ibuprofen. Thank you Steve for the recommendation. I am still real dizzy. I was dizzy going into this so I don't know if that is just worsening. My hearing was already shot, but it has worsened, since I did the 1 day CK, we weren't trying for hearing preservation. I also have the ache around my eye. Seems like my eye is playing funny tricks, too. Focusing is a little challenging. Seeing some movements on TV make me want to go cross eyed. I feel great, just these little annoyances. Dizziness is my biggest complaint. I will call today and ask the wonderful nurse there.
I want to get out and swim but the pool is too cool. Phoenix area is having a cooler spring than normal. I love it but I think the exercise will be good for me and I don't want to turn into a popsicle to get my muscles a work out. Somehow I feel like I will feel better if I can do that. I do have the energy.
Thank you all for your support and encouragement. It is really hard to express how much it helps me. :)
Take care! 8)
Mary
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Hi Mary,
I think it is normal for GK patients, and sometimes CK, to get a little swelling reaction right after the radiation. This is not the "death to ANs" swelling that will occur later, around 3-8 months. It is an immediate reaction to the radiation, and usually wears off in a week or so. I would think any anti-inflammatory would help, and it is probably not a good idea to mix and match, so stick with your naprosyn and/or call that nurse. Hope you feel better soon.
Swimming. Now there is an idea I remember from last year, but it sure hasn't come up yet this year. Where is summer? ???
Steve
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Thank you, again, Steve! :)
Here is the UPDATE:
Since I changed from 3 to only 1 CK treatment, I think you had a great point. It would be like having GK then. I did call the hospital and talked to the CK nurse. She had me call my Dr. I left a message and he called back quickly. Hooray! I told hi briefly my symptoms since about 24 hours after CK. I was quite dizzy before but now I have extreme dizziness worsening at night. I am using a cane or my husband to get around. I have the headache (faceache?) around my right eye. My bad hearing is worse as is my tinnitus. Othwerwise, I am fine. He asked numerous questions and said I needed to start steroids today and he would call them in right away. You have to love it when the system works this easily!
On a side note, my doctor mentioned he had read my post on this site. He is obviously dedicated to his work. He had told me about this site the first time I saw him. I am sooooo lucky! It is always good when you make a decision, that you are pleased. I never expected treatment to be without some issues somewhere. It is how the issues are handled when they arrive.
I have taken my first dose of steroids and expect to feel better before long. I call him when I have finished all the medication.
Thank you again, Steve! (By the way do I get a hat??? ;D If so I want a red one, but if it is green, that is my husbands favorite color :D :D :D)
Take care!
Mary
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Mary -
I'm sorry you still aren't feeling well, but I'm very glad you called the doctor's office and that your doctor is taking care of things. I'm hoping you'll be feeling much better soon.
Doctors on the forum?!! Sam Rush was the only one I was personally aware of and he doesn't treat ANs - but he did diagnose one recently (Yeah, Sam) :) Is your doc a lurker or is he a registered user? It doesn't really matter, I'm just curious. Either way, I say good for him; it's very impressive that he cares enough to take the time (and I'm not just kissing up because there is a chance he might be reading this) :D
I tell my doc every chance I get what a great resource the ANA has been for me and how helpful I have found this forum - he probably thinks I sound like a broken record. Is that an outdated term? Do people even know what a record is these days ??? I know my kids don't. Guess my age is showing ::)
As for the hat - Steve is going to have to start knitting 24/7 in order to keep up with the high demand. Tip to Steve - just purchase some hats to pass out at the symposium and say you knitted them. They'll never know - and I'll never tell ;)
Jan
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Hi everyone,
Today has started better. I the the steroids have begun to help. I am feeling peppy ( :D - steroid high) and even went for an early morning walk. The pool was only 77°, so still no luck getting in a swim. I am still a little dizzy but with a cane on one side, and Weldon on the other I managed a nice stroll. The real test is later today to see if symptoms worsen like they usually do through out the day. At least this time they are starting at a more manageble level. My headache is mild and has moved to the back of my head.
My only new issue is my right eye. I woke up and I thought my glasses were badly smudged. I took them off and realized it is my eye. It had a bad haze. I put in eye drops and an hour later, it was still there. I posted a query on the CK site to see if it had any connection. It does seem to be clearing up now. Maybe just a strange anomoly? Any one else had this?
Have a great day all!
Mary
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Hi, Mary
I've been remiss in cking in on the forum and up on you! I hope the steroids help you with these side effects - and you can get off them soon! (Are they the "deca-crap" as I've seen Phyl call them??)
You definitely seem to be in good hands all around!
Elaine
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Hi Elaine,
I was spared the deca-crap and have been put on prednisone. I don't know what the difference is, but I do know I am feeling PEPPY today ;D.
Take care,
Mary
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Glad to hear it, Mary!
I took prednisone for another ailment...I don't remember those peppy feelings, though!!!
I'll have to remember to request that, if I EVER make up my mind to do the radiation!!
Elaine
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Tip to Steve - just purchase some hats to pass out at the symposium and say you knitted them. They'll never know - and I'll never tell ;)
Except you just did, Jan. Thanks a lot. >:( ;D
Mary, it sounds like you like the prednisone. Just don't get too into it, remember you will have to taper off and stop at some point. ;)
Steve
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Mary,
If you are on the 'roids, I need my house cleaned!!!!!!!!!!!!!!!!!! :D
"Day by day, inch by inch"..... I know you have educated yourself on things that could/could not (not "would/would not" but could/could not) crop up... and tickled you are on top of it and that the team at Barrows is right there with you (I would expect nothing less than that from them!). Steve is on the money and I'm sending the hugglez to you......... hang tough.... and now time for that sucker to die its fugly death.....
{{{{{HUGGLEZZZZ}}}}
Guess who? :)
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House cleaning? - mine could use it too! So, if you're in my neighborhood, please stop by ;)
Hope you're feeling much better, Mary. And here's hoping that "Goldie" dies very soon.
Jan
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Hello out there in AN world. It is a different world we live in when symptomatic. I had a roller coaster weekend, but it was a kiddie roller coaster. Saturday was the best day I had in months, and on prednisone - whoa! :o
I DID overdo it that night. Our family was invited to a 3 year old's birthday party at Peter Piper Pizza! He had 2 long table dedicated to him in a sea of 3 - 6 year olds also having birthday parties. Colorful lights, colorful character balloons, kids running and screaming, me trying to socialize with the really neat adults I don't know well. There was a din of off key "Happy Birthday!'s" being sung. Pizza was slung, BBQ spicy wings flew, cake and ice cream were plentiful. The room is multiple colors and shapes. Everything s packed in pretty tight and the stable visual stimulus I need so badly for balance just was not there. Instead I looked at chaos and tried to find stablility on the waves of dizziness. :-\
Then the sounds above were unreal - I did sit near the end of the table near the edge of the room, but I was on the WRONG side. My bad almost useless ear faced the noise. I couldn't hear anything anyone said behind me. The sounds I heard in that ear were like New Years Eve noise makers being shaken, rattled and whistled in that ear...loud! I finally switched sides and could again hear with my good ear and somewhat protect my bad ear from the interference. I plan to take ear plugs for that ear so that surrounding noise doesn't distort into confusion in my head. We drove an hour each way to get there through town and an 2 hours at the party. During the drive on the way home, the long shadows on the road, the cars whizzing this way and that all became an amplified mess to my dizziness.
Soooo Sunday, I imitated a drunken slug and took it easy in our quiet restful home. I did get in some laps in the pool at last and I realize that I feel perfectly NORMAL there. I am not afraid of being dizzy, I can't fall. The water supports me beautifully.
Yesterday I stayed home and I did okay. Then we had one outing and until it got worse later I was fine. It didn't pay the toll The birthday party did and I am feeling good again today.
I was dizzy before my CK. I think it measured about 26% on that side. When the swelling hit, it worsened. After being on the prednisone it is back to the level of before. I start vestibular therapy this week, so we shall see. Most likel :-\y I will have my cochlea destroyed and use a Baha. My functional hearing is 20% and that part is hardly functional in my mind. If that is destroyed, I will have a set point to get used to the balance loss at a set point. Right now it vascilates and when I adjust to one level through exercises, it changes, just to do it again. This has been going on the last 2 months.
The other thing I notice is pain most likely where the AN is. It isn't intolerable at all, a couple of tylenol takes care of it. I do feel a little more tired, but it was only one week ago yesterday that the CK was done. I suppose if I had stayed with the 3 doses, it might have been gentler on my system, but I had no more hearing to save and wanted it over. I won't second guess that because I am functioning. I am not my old self, but I haven't been the same since the AN symptoms started about a year ago. I am still so glad I chose this way.
Take care all! You are important in my life. You do not know how very much the support helps. This is so weird to the non-AN world and it is great to have others to talk to.
Hugs!
Mary
And BIG HUGZZZZZZZZZZZ to you, Guess Who ;)
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Hi everyone,
Today has started better. I the the steroids have begun to help. I am feeling peppy ( :D - steroid high) and even went for an early morning walk. The pool was only 77°, so still no luck getting in a swim. I am still a little dizzy but with a cane on one side, and Weldon on the other I managed a nice stroll. The real test is later today to see if symptoms worsen like they usually do through out the day. At least this time they are starting at a more manageble level. My headache is mild and has moved to the back of my head.
My only new issue is my right eye. I woke up and I thought my glasses were badly smudged. I took them off and realized it is my eye. It had a bad haze. I put in eye drops and an hour later, it was still there. I posted a query on the CK site to see if it had any connection. It does seem to be clearing up now. Maybe just a strange anomoly? Any one else had this?
Have a great day all!
Mary
Hello Mary,
I am on Prednisone right now, not for my AN as I am watch and wait, but for a horrible allergy/type rash. The rash is now cleared, and I am at the one week more lowered dose and then done with the prednisone. I know the peppy feeling you are experiencing, but I also know a very tense uptight-grit-your-teeth feeling, and I don't like it at all! My husband also had been on Prednisone for a month and found that his eyesight improved 10-fold to the point he could see better without his glasses! my sense of smell has been tremendously enhanced. So it is a weird drug, they call it a miracle drug of sorts, but it's a nasty one too! I will be glad to be done with it again, as this is one of many times I have been on it over the last 25 years! Good luck to you in your journey. Make sure you rest when you can!
Jackie
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Hi Jackie,
Yes, prednisone is a miracle drug andat the same time has many, many terrible long term effects. My mom was on it years and it saved her life, but it was at a cost. Luckily, we are only on it for a short spurt post CK. I have taken it on and off through the years (for other issues) but never long term nor more than once or twice a year at most.
Today I started dosing down. The "high" disappeared a couple of days ago. It is such a weird feeling, peppy yes, but not a healthy peppy! :) I understand the grit teeth thing. There is an uneasy undercurrent. I should be done taking them Saturday and call my Dr. on Monday to give him an update. I hope that will be the end for now and I can just get back to tumor death.
Have a good day!
Mary 8)
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Mary -
I'm glad you are doing better. I don't envy you the party at Peter Piper's ;)
Don't sweat the hearing, if you do end up with a BAHA, you know where to come for support.
Jan
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Hey Mary,
That party would have put any adult over the edge, I think, much less one in your situation...
Glad you were able to swim - sounds like the perfect therapy for you. Have you felt up to reading any of the book (Thirteenth Tale)?
Cindy
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Hi Mary-
First of all, a belated - but big - thanks for posting such a detailed report on your CK. I found it fascinating and really loved reading every bit of your account.
I can't imagine the pizza party - just the tought of it makes me feel panicky. Big kudos to you for sticking it out! You're my new hero.
I wasn't taking Prednisone, but some other steroid after surgery - I can relate to all the comments about feeling hyper, and not necessarily in a good way. I was very happy to "step down" from them.
Mary, I hope your recovery continues to go well - and thanks again for sharing your journey.
Debbi
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Hi,
You all are great and I DO feel better with a lesser dose of the 'stoids! I also made an appointment today for a conference with the surgeon about a labyrinthectomy and Baha! Big step for me! I re-addressed my record of balance testing that the doctor ordered before CK and then looked up things like "spontaneous nystagmus" - the involuntary eye movements that enhance my vertigo and "oscillopsia" the amplification of movement I seen when riding in a car or really any other movement including Peter Piper Pizza parties! It seems like destroying the cochlea really is successful in ridding these miserable symptoms I have had since before CK. My hearing would then be 100% gone, but at this point, I think that would be better than the warped sounds I hear now. I am too often not functioning. I seem to get on top of it only to backslide.
By the way, I don't think I mentioned this before. The testing at a balance center in Phoenix was such a riot! My doctor has all his AN patients go through the testing pre-treatment. I imagine post-treatment, too at some point. I really needed someone to video this testing. It was a sick amusement park. For those of you who haven't done them, they were extensive and took about an hour.
First they attached me to a harness like on a parachute, put me in a booth a little larger than a phone booth. The booth was painted in bold colors and irregular patterns like an abstracted landscape. I stood on a platform similar to a large flat scale that senses your movements. Everything is connected to the computer. The technician held onto a strap on my back and the harness is attached to the ceiling. Then the walls move different directions and different walls walls at different speeds. Eventually more are added and things speed up. Whoa! There were a series of those.
Then I was put in a round room about 8 - 10 ft across max. I sat on a rotating chair in the middle. I wore goggles as these stripes rotated around me. He told me to COUNT them.......right! They went to fast to count! He said I didn't have orders to do the testing with the chair rotating. Thank goodness. I flunked the first royally already!
Last he had me on a table with goggles and lights to follow. Then there was cold water squirted with some force in each ear and then warm water. Like I said everything is attached to computers. He had me looking different directions as he did it. VERY bizarre? Same guy who invented this invented the mammography, I am sure.
I never got sick, miraculously, through any of these but I did get a little green around the gills! I thought I would because so often lately I feel like I did when I had morning sickness. Remind me and I I will invest in soda crackers!
DEBBI, I have followed your account since your surgery. It is your account is that inspired me to do a more detailed account of my journey. I found yours interesting and you MOST inspirational. You are MY hero!!!! I am cheering for you every step of the way. I also think your photo is very good. you look terrific!!! My daughter (30 yr-old) plays Pogo games on line (me, too....confession time) You have a little mini you post with your membership. It is kinda like paper dolls. :D Anyway, you can choose the background, outfit, goodies and even the face. She purposely chose a face with a crooked smile. It is enchanting. I wish I could send you a picture, but it is not transferable.
CINDY, I did finish "Thirteenth Tale" I started before CK and finished it afterwards. Now that is going to give it a weird perspective from my vantage point. Did you read it? :D
Take care,
Mary
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Mary -
the testing at the balance center sounds surreal. I've never heard of such a thing, but then again, I don't get around much ;)
As Debbi mentioned it was wonderful that you posted so extensively about your CK experience. I don't know a lot about CK - or radiation in general - so it was definitely an education for me.
Thanks,
Jan
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I did not have the astronaut tests you described, but I did have the goggles and water in the ear test. The cool thing is that the goggles are making a video of your eye movements during the test. When they played it back for me, the display removed my nose, placing the two eyes closer together. Very bizarre to see my two eyes flickering around together, unattached to a face or head. ::)
Steve
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Mary -
forgot to ask. Are you going to discuss Thirteenth Tale with us? Discussion starts on the 13th.
Jan
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Yes, Mary, I did finish the Thirteenth Tale - see you over on the book club thread on the 13th to discuss it, I guess. I really did enjoy it!
I do NOT know how you got through that balance carnival - I really could barely stand to read about it - my head is still spinning just thinking about them. Really, I'm sure I would not have made it.
Thanks for keeping us up to date on your progress - it's good to see all these details about treatment recovery. All of you recently treated guys/girls have done a great job, despite what must be some very rough days of recovery. Thanks to all of you!
cindy
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Thank you, Cindy!! :)
I am sending you big HUGS for making my day.
Mary
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Biggo HUG to my friend Mary!!! :D Have you been feeling any better? Mary, I can't believe you went to Peter Piper Pizza! Ahhh :o That place is too busy and too loud, I avoid it as much as I can. You probably felt there, the same way I felt when I went to the Diamondbacks game. I'm trying to avoid noisy places, except for restaurants of course ;) One of my favorite things to do is eat out!!!
Keep us posted and I'll be chatting with you soon.
Hugzzz,
Annette
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Hi dear friend, Annette! :)
How are you feeling since your CK? Still doing well?
I am having a better day today. Maybe we can get together again and catch up. Peter Piper, ah yes....my daughter owes me BIG time. Yes, I think it was like the Diamondback game for you. VERY disorienting. Weldon got me earplugs. I am now going to have them with me everywhere and when it is too loud, I will put it in the AN ear. Might help?? I will let you know. We live and learn, right? LOL
Big Hugzzzz back!
Mary
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Mary~
Lost your picture again! ???
K
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HMMMMMMMM....I guess I am playing hide and seek but don't know how???? Any ideas?
How are things for you, Kay? I hope you are doing better and better.
Take care,
Mary
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Why does that picture losing thing happen? I've "lost" both Mary's and AJ's pictures. I thought it was just on my home computer, but it's also on my work computer and my laptop.
What's the deal ???
Just wondering,
Jan
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It seems to be Mary the most - must be her special smile and sweet spirit!
I am doing really well. I have just been SUPER busy trying to do all the "finishing touches" of trying to get Addi packed for camp. We finally have EVERYTHING done and are leaving this afternoon for Oklahoma City (I still need to throw me some clothes in a bag for tomorrow!) - but I have her done! We even stuck her sleeping bag in a space bag and vaccuumed and it is in her trunk - we were so proud of ourselves!! ::) I don't know what I will do with only 2 girlies for 2 weeks - it will be strange!!
Better run!
K
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Hi,
Tell Addi to have a great time at camp for ALL of us and you and your 2 curly girlies, don't get into too much mischief!
I found out what is happening with the picture. The web designers for hubby's biz are working on the site. There is an invisible page there where we have the photo posted. It is at my end. They have been working on the site a lot this last month and you would thin I could realize that is the problem sooner but I swear my brain is slower than it used to be.
Mary :)
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Mary,
I'm doing well! I hardly get headaches anymore. I just seem to be getting that heavy head or fullness of the head feeling and that is mostly in the mornings. On most days, it subsides as the day goes on.
I took a little trip to Sierra Vista (south of Tucson) this past weekend. I did fine, but did feel a little tired. The weekend of June 21st is my 22nd wedding anniversary and the hubbie is taking me to San Francisco. We are flying there, so I'm a bit anxious about my hearing and balance in regard to the flight. Wish me luck.
We most definitely have to get together again. I'd love that.
Chat with you soon!
Annette
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Hi Annette......Yea!!!!!!!! You have no idea how glad I am to hear you are doing well. I have the opposite. I have a harder time as the day goes on. This is such an experience.
Enjoy your 22 Anniversary trip and congratulations!!!!
See you when you get back, okay?
Take care, my friend,
Mary 8)
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It has been awhile since I updated my post CK thread. Let's see f I can do this and make sense at the same time! ;D
I have had my ups and downs. I was having these issues pre-CK so I have a hard time blaming CK for the issues. I am sick of the dizziness. I knew upfront that the CK would not fix it, but I want it gone. SOOOO, I have graduated from the vestibular exercises I was doing at home to going to Vestibualr Therapy. Today was my first day, and I feel like it is a lot like what I already was doing. BUT he can measure, adjust and tweak for my back and knee problems as well as assess what exercises are working and what aren't.
I don't know, but if you have dizziness, "try this at home." For instance, hold a index card at arms length with the letter B on it. Move your head from side to side at it, while keeping FOCUS on the card. If you lose focus, go slower. Then nod at it. I am to do each of these 30 seconds 3 times, 2 or 3 times a day. Then I am to locate 2 points on a wall and dart my eyes from one to the other. I am supposed to do this with the same requirements of the other. I will be picked up by a funny wagon or be accepted on the "Last Comedian Standing". My son almost split a gut watching this. It is great to be entertainment.
I am off the steroids so I needed to update the doc. He wanted me to have him interrupted when I called to talk to him. Can you believe that one? He also thanked me for updating him. WOW! I am happy to be off the 'stoids. I know they made things easier. It seems people who specialize in ANs are especially kind people.
By the way, on anothe3r thread, I am researching hearing issues and solutions as you may have noted. Please, if you have 2 cents to add to it, I would appreciate it. :)
All in all I suppose I am okay for a dizzy, half deaf, screaming, full earred granny. It adds character.
My grandkids - 12 and 9 come next week. We will be caring for them during the days when my son works. We care for my mom. I have two lively standard poodles. My husband will be out of town for a week to go get them and visit family. I can't drive. The entertainment factor has just gone up. I am selling box seats for any and all.
Wonky headed Granny, ::)
Mary
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Mary -
I'll take one of those seats - it sounds like your life will be a lot like mine, except that I can drive ;)
I'm sorry you are having your ups and downs, but I'm glad you are having vestibular therapy. The exercise you described sounds like one of the ones my doc gave me to start doing pre op. I also did them post op and it helped a lot with my balance and dizziness. As I recall, the exercises are quite amusing for others to watch :D
Your doc sounds like a real gem - I just love docs who are genuinely concerned about their patients.
Enjoy the grandkids and hang in there,
Jan
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Hang in there, Mary! And, can you put me down for two of those box seats? Heck, better yet, sign me on as an usher - at least I can help out! Sounds like your hands are going to be FULL! Grandkids AND standards poodles --- wow.
Take some moments to breath deeply and relax!
Debbi, infusing IV as I type...
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I want seats, too!!!
K
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Thanks for the update. Sure hope the new, entertaining, excercises help with your dizziness!
Cindy
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I also posted this under my querie about hearing....so please ignor it if you read it over there. Sometime I don't know where to post. LOL ;D
I had an appointment Friday with the surgical doctor. It was an information gathering appointment. I copied and pasted an emaii I sent friends and family:
Yin Yang, balance…..whatever you want to call it. Life is all about the balance. Without the unwelcome challenges how could we appreciate the surprise joys in life? So I am sitting on the curb watching for my ole friend joy. It is always there, sometimes it hides better than others. I do like to look at the world as my glass is half full, because it is!
I very much appreciate all the people out there struggling with their own issues, many people have much worse problems and my heart and prayers go to them. They give me the gift of knowing and balancing the reality of my situation. I am blessed.
Yesterday was a difficult day. First, I was dizzier than normal. Then my doctor appointment with the surgeon was in the late afternoon when I usually get worse.
Here is what he had to say:
Hearing
• My varying hearing is not uncommon (between bad and worse). I have had this since pre-ck
• A BAHA (Bone Anchored Hearing Aid) is an option for me and may be a good one. He really likes it and knows of many radiosurgery patients who have gone this route.
• He is not crazy about Transear. If I go that route, I will need to find someone else (of course, he is a surgeon, not a hearing aid dispenser.) He said many find it uncomfortable.
• He informed me the Cross Aid (sp?) may be another option. It requires hearing aids in both ears. In the bad ear the signal is picked up and transmitted to the receiver in the good ear.
• There is no hurry, we can wait until November to see where I at my follow-up MRI to see what we will do
Balance
• He witnessed how dizzy I am.
• He said because I have 24% left of my balance in the bad side, my brain is always trying to balance it with my good side through inputs from my vestibular nerves (one with the tumor). The signals vary so it is always adjusting, making me dizzy. This may get better, could get worse, could stay the same, could go almost away. That narrows things down for me – LOL. I have more issues with dizziness than the "average" AN patient, but at the same time it isn't unusual
• He wants me to continue with the balance exercises, push myself further (which is hard to do when you are not sure of your ability to stay upright, never mind trying to do something in addition at the same time!)
• I need to wait until November to have my balance reassessed to see what is happening then - sound familiar?
• When I asked about the labrinthectomy, he agreed it would get rid of the dizziness as being a major issue for me. He said it could be an option down the line. THEN the bomb dropped…..he said if he does it, what he would recommend is doing the Translab surgery and taking out the tumor! He is the same doctor that recommended CK before treatment. Surgery is just what I avoided by doing the cyberknife! He said it would be so close to the tumor if they do the cochlea surgery I could be free of the thing, in addition. The only big danger in that is the facial nerve. (AND the major surgery involved.) I think I like being dizzy and hearing is overrated. I did CK to try to preserve my facial nerve. That is one of the scariest side effects to surgery to me.
• He remarked, referring to my exceptional level of dizziness, and some worsening since CK that sometimes cybernife does make this worse. Without my dizziness, I wouldn’t have been diagnosed with my tumor as early.
• I may have more severe dizziness also because I had the entire dosage in one treatment instead of the three we were initially scheduled to do when I still had hearing to save.
I had heard from a wonderful little birdie that perhaps very low dosage valium twice a day would take the edge off of the dizziness. I was going to ask him about that and forgot!!!!!!! I feel DUMB! If I don't get relief soon from these exercises, I will call and ask. I can't wait until November. I will work like crazy to get on top of it, though.
My hero, Weldon took me on a date last night for a great dinner out. That was the medicine I really needed. Spending the evening with my sweetie! Today he is driving to Texas to see his Dad. He will return on the 29th. When he comes home, he will have the 2 grandkids with him!
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Mary -
thanks for the update. Sounds like some good things came out of your appointment, but some confusion also.
Give yourself some time to digest what your doctor said before you make any decisions; you have time to think about all this.
Good luck,
Jan
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Hi Jan,
You are such an encouragement to me!!!!! Thank you! :) Time will go fast when the grandkids (12 and 9) are here. They stay until August 8th. We care for them while our son is at work so they should keep me entertained AND pushing myself beyond any comfort zone. ;D
Mary
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Hi Mary,
I am betting (and hoping) that the balance nerve will continue to decline. If it is already down to 24%, it must be on the way out. If that happens, you will be able to adjust to having one good balance nerve. I think that is the most likely outcome, even if it is not by a huge margin.
The idea of doing a full translab seems a bit much to me. I can see how the doctor would think that if you are in the neighborhood, might as well clean it all up, but I think going after the tumor would turn it into a more major operation, and get more into the neurosurgery aspect of things. Hopefully that doesn't need to happen.
It sounds like you will be waiting until November to see where things stand. Meanwhile, continue to enjoy things as best you can, which it sounds like you are doing well. And take it easy too, except for your exercises of course; you are still in recovery, you know.
Steve
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Wow, Mary - I was goign through such ups and downs reading your recent post. When I got to the part about the doctor suggesting translab, I nearly fell out of my chair (and I'm not usually that off-balance!) I can't imagine how stunning that must have been - especially, as you say, because that was the very thing you wanted to avoid.
I guess the good news (I agree, the glass is usually half full when you really look at it) is that you don't have to make a decisoin right now - you've got time. And, as Steve said, it is possible that the balance nerve on your AN side will continue to decline. I found it very interesting (and logical) that the brain would be more confused by having a partially functioning balance nerve on that side. In my case, my nerve was destroyed, so my brain could get right about the job of compensating - your brain has a much harder task. Anyway, that was most interesting - yet another facet of this whole AN thing that I didn't know.
I know you'll miss Weldon, but what joy when he AND your grandkids come home on the 29th! Just one more week! In the meantime, be kind to yourself. You have such a wonderful spirit and attitude and I know that those things, along with your great support system, will get you through this. In the meantime, take a moment to to laugh about what a pair you and I would make - me with the messed up face and you constantly threatening to tip over! ;D Still the same inside, though!
Sending you lots of good thoughts.
Debbi
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My very dear Mary,
Saw your update..... glad you are becoming the best informed you can be. :-*
I have to share with you one thing that I think many radio-patients here can attest. The waiting, post-treatment, is the most difficult. Now, I have to keep in mind that you had your CK not even a month ago, so like you, I am anxiously awaiting to hear that (hopefully) its doing the trick and killing that sucker. Patience is a virtue... and while you continue to research your treatments for balance issues (hang in there!), hearing devices, etc.... pls keep in mind that it's just less than a month since treatment... and time will be needed to see if that sucker dies. I love how you are covering all of your bases and doing what is best for you.... and I'm sending continued wishes for wellness that the CK will do the trick and no other treatments options (ie: microsurgical, etc) will be needed.
Hang tough hun! My best to Weldon! Know I continue to cheer you on!
xo
Phyl
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Mary~
I am trying to get caught up on everyone since I have been out of town! I was shocked to read that the Dr. suggested a full translab if they go in - WOW, that was some news. At least you have a lot of time to think it over and let's hope that it just continues to take care of itself with time!!
Enjoy those grandkids!!
K
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Hi all,
I have had time to reflect on the events of late. I am a researcher by nature. Sometimes that gets me into "interesting" situations. Once I figure out there is something in my life that needs to be addressed, but I am not familiar enough....I am right into research mode. Knowing my insurance's HUGE deductible had been met this year due to CK, my hubby and I figured before the end of '08, if possible, we would do any other procedures needed. Seems reasonable. But then I never thought, in a million years, someone would suggest I might want to consider translab. That is off MY list of viable options, unless someday my tumor, "Goldie" is deemed alive and well, again.
I very much appreciate everyone's input, even the last doctor's. I do see his point. However, I ENJOYED reading the inputs of my good friends here. We are all in the same unwelcome situation, dealing with the same challenges. This site gives me the insight of people who have found their own path through the maze of information.
Now at least I have the information I need to decide what to do if my dizziness does not improve more. It is still and issue, but I have to say I am proud of the challenges I have faced this week. I have been getting dishes in and out of the dishwasher, doing the laundry and best of all worlds, scooping our big dogs "deposits" out of the back yard! Now to many this sounds minimal, I know. To me, it is big! It is life and I am a participant. Now these things I have done just have to be some of my least favorite ways to participate in life, but they are necessary. Without my rock and protector here, I have had to go way out of my comfort zone. This is a good thing. I need to prove to myself that even though I feel incredibly dizzy much of the time, I can function to a bigger extent than I thought without falling flat on my face I just need to stop afterwards, regain my bearings and subdue and nausea rearing its ugly head. I am doing it! ;D
My Wii Fit adventures will have to wait. I do see it will be valuable for me, though. What a FUN way to deal with balance issues. Without Weldon, I do feel insecure pushing beyond my vestibular exercises and chores. I feel like I am having a little more time that is not as dizzy. I think this will be a little longer process for me than for some others. So be it. When the dizziness subsides I will be a person who really, really appreciates being able to have balance. I must say before this, I didn't go through life thinking, "WOW, I didn't fall when making the bed, or putting folded clothes away!" So another blessing is on my list.
I am now satisfied I know what I need to know for now and I am waiting to see what happens at my first follow-up MRI late this year. Meanwhile, I am pirating, reading and experiencing life with you wonderful people in AN land. Thank you for being here.
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Mary~
Where'd you find a Wii Fit? I can't find one ANYWHERE! They told me today at WalMart that even when they send them - they only get 2!!!!!!
K
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Hi Kay,
Ebay! I paid more than list, but Father's Day was here. I made sure the person had many really good and feedbacks. Father's Day was here and I really wanted to get it for my hisband. He had mentioned an interest in it and as with most men, I think it is hard to find something HE would think is special. Our entire family loves it, even my mom who just watches. I really think it will be good for my balance and my husband was playing (using?) it everyday and tracking his progress. He said it was fu to do exercise and enjoy it! :D
Good luck finding it. Maybe Amazon has it somewhere, too?
Mary
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I have been getting dishes in and out of the dishwasher, doing the laundry and best of all worlds, scooping our big dogs "deposits" out of the back yard!
That sounds positively thrilling. :D
I need to prove to myself that even though I feel incredibly dizzy much of the time, I can function to a bigger extent than I thought without falling flat on my face I just need to stop afterwards, regain my bearings and subdue and nausea rearing its ugly head. I am doing it! ;D
That sounds a lot like the pattern of balance recovery experienced by those who lose a balance nerve during surgery. Which is a good thing; it suggests to me that with some more time, your brain will adjust to the new situation and you will become quite functional again.
Steve
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I like the way you think, Steve! :)
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Hey Mary!!
Just got back in from being out of town a few days - 4 days w/ no AN forum - withdrawal symptoms were starting to set in...
Glad to see you feel like you are getting better. Know those moments of being able to do a chore with confidence are huge. Hope things continue in this positive direction for you - hopefully, the spinning and nauseousness will subside soon - know that is an AWFUL feeling.
Cindy
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Hi everyone,
I am slow getting back to you. My grandkids are here, providing me with entertainment and unique vestibular exercises. ;D I am slowly progressing. I still go up and down, never feeling 100% balanced, but more time with tolerable balance and fewer times with the world swaying and swirling. I still have very few times with any kind of headache and no facial side effects or twitches in ages. My hearing seems to keep its fluctuation from basd to worse. I really don't discern much of a change.
Now for my dogs......they are RIGHT there concerned about me walking backwards, walking sideways with my head going back and forth and me standing in the corner with one foot in front of the other and my eyes closed for 30 seconds. They want to "help". They know I am not stable, and try to stop mem from doing things that keep me imbalanced. Oh, I think I get extra credit for this. Luckily my rock, Weldon is right there to keep them from completely stopping my pursuits. So dizziness happens. :D
So this dizzy dame keeps progressing and I am reading the site everyday although I am not as able to spend as much time on it. I will return more often when the grandkids leave in August. I am going to miss them. My grandson now jumps up to talke to me directly in my good left ear. There are plenty of laughs about what I THINK they say. For instance my 9 year old grandson said after watching a video, "I wanna rewind!" I thought he said, "I want some wine." :D
I am cheering on you newbies, I know decision making is hard. I still have not regretted my decision.
Take care all!
Mary 8)
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Mary-
Good to hear from you - and so glad you are enjoying the time with grandkids! Had to laugh about your dogs - mine is a collie, a natural "herder" which is exactly what I don't need right now! We'd probably do a little better without the caring concern of our furry four-legged family members... but, you've got to love them!
Enjoy the time with the grandkids, Mary!
Debbi
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Debbi, It is so good to hear from you and tell your herder Hi from my hunters. I must say having a furry friend is very comforting at times. If I take a nap they are right there cuddling with me. I love y pups, but geez sometimes they are "helpful".
I hurried and wrote the last email. I see all the typos and I am glad people are patient here. I have really shaky hands (worsening for last 4 years) so I miss keys and when I hurry and don't proof my email. Forgive me all.
Mary
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Hi Mary,
Glad to hear you are making slow but steady progress. Enjoy the kids and the dogs and the summer weather. :)
Steve
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Thanks, Steve, We have summer weather in spades here. We did have 2.1 inches of rain day before yesterday, about 1/4 of our yearly rainfall overnight. My plants are happy and the cactus are fat.
Hope all is well at your neck of the woods.
Mary 8)
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Hi Mary,
Good to hear from you - was wondering how you've been doing...glad you're still progressing in the right directiion, though I'm sure you wish it would move along more quickly. The grandkids are with you til August? Wow - you are a very good grandmother! That's a lot of work, but a joy, no doubt.
Keep in touch as you have time and take care,
Cindy
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Hi Cindy and others,
Today is my Mom's 88th birthday so the kids will be over and my son doesn't work weekends, so he has the kids, until we all meet to celebrate later. My sons kids spend every summer here, since their parents are divorced, Mom in TX, Father here. We get them everyday and they have been so sweet to me.
I am quite dizzy! :-[ Yesterday and today both. I really would like for this to improve more and permanently. No sooner than I am thrilled to have a trend towards improvement, than I again backslide. I will defeat the beast eventually but I am getting impatient.
How are you doing?
Mary
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Mary-
Happy 88th to your mom!! Hope you all have a wonderful day.
So sorry to hear about the recurrent dizziness. I somehow managed to avoid that particular symptom, although I do continue to have balance challenges. I am sure it is exhausting to have the dizziness - it has to be a lot of extra work for your brain.
Be patient with yourself, Mary.
sending you a hug!
Debbi
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Hi Debbi, :)
Hug was received, appreciated and reciprocated! Thank you sooooo much. It helps to have such support. Hooray! Good luck with yoour Blinkese appointment. I am looking forward to hearing about it. I have to love the name. It sounds comforting and fun at the same time.
Mary 8)
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Thanks, Mary! I managed to get an appointment first thing tomorrow morning (someone cancelled - yay for me!) so I will be there bright and early to get "fitted." Hopefully he'll also have some additional tips for me in terms of keeping the eye lubricated.
Hope you have a non-dizzy day! And, thanks for the hug - coming back at ya...
Debbi
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Any better today, Mary?
88th birthday for your mom, how great! Very special that your grandkids have a great grandmother still living. Hope my boys have children while their grandparents are still with us...but, don't want those grandkids too soon, though!
I'm just waiting around for my MRI in August...still absording things on the forum - it's all still so helpful, especially with you, Debbi, Pooter and many others continuing to let us know how things are going post treatment.
Here's to less dizzy days for you!
Cindy
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Hi all,
My last couple of days have been better. My PT was impressed. HOORAY!!!!! ;D
In one exercise I use very, very wild and too colorful wrapping paper with "B's" written on a little white paper taped to it in 2 places. I look at this and my eyes and head are to go back and forth between them repetitively. Sometime I really think I am on some Punked type show. It is as if I am being tested to see what inane thing I will do in my gullibility and desperation to get better.
Cindy - good luck with your MRI in August. Keep me posted, okay?
Mary 8)
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Mary-
My eyes hurt just reading the description of the paper!! Yikes.
Cindy, hang in there, and definitely keep us all posted on your MRI next month. Is it on the calendar?
Debbi
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Things are better!!!! I am overdue and update.
I am not quite as dizzy. I still use the cane and most of the time I feel like it is improving. I think I am now at 3 steps forward, 1 back. Hooray! I hope it continues and my patience hasn't been my long suit, so I feel tested in this respect.
I have been swimming laps almost every day. This is when I feel just like the me pre AN symptoms. I still have the ringing ears, but I can pretend that is pool noises. I have no issue with dizziness, because I know the water won't let me fall. We have a salt water pool also that seems to keep me bouyant even more. I almost feel powerfull in there. I don't need the cane and my AN, "Goldie" is reminded who is really in charge here. I know she is dying, anyway.
The grandkids are still here and have been ultra sweet and amazingly well behaved. I know I am not as much fun as in the past. I can be a pretty silly Granny and enjoy the kids at their level. I guess that can be scary thought but believe me, the kids and I have had a history of fun. Next year when here for the summer, I will try to make it up to them.
We (husband, my mom, 2 dogs and I) are still hoping to go on our motorhome trip to Oregon this fall. I am keeping my fingers crossed that the symptoms don't get too much worse.
Basically happy camper,
Mary
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I think I am now at 3 steps forward, 1 back. Hooray!
Excellent news, Mary! ;D
Thanks for the update!
Jan
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well, Mary... I was going to loan you a pair of waterwings for pool exercises, but things are coming along "swimmingly" for you! (hit me later for that!). I'm so thrilled for you... and you know my mantra... "day by day, inch by inch..."..... you're doing great and I'm tickled to hear this update.
Hang in there, m'dear! I'm so proud of you! (and all of you as well... )
xo
Phyl
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Hey Mary,
I've been gone all week, but so glad to return here and see that things are better for you and the dizziness has lessened! Sure hope it continues to subside. The swimming sounds heavenly and certainly seems like good "medicine" for you. We will all cross our fingers that you are able to make the Oregon road trip - I'm feeling pretty confident that you'll make it!
cindy
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I think I am now at 3 steps forward, 1 back.
So that would mean you've moved on from the waltz to the polka, right? ;D
Steve
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I think I am now at 3 steps forward, 1 back.
So that would mean you've moved on from the waltz to the polka, right? ;D
Steve
HAHAHAHAHA :D
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I used to love to dance......oh my what kinda step would that be with a cane! :D
Mary 8)
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That would be a three-step, Mary! ;)
Debbi, couldn't dance before surgery either...
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Debbi, couldn't dance before surgery either...
You're not alone on that one, Debbi ;)
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I used to love to dance......oh my what kinda step would that be with a cane! :D
Mary 8)
Will loan you my fashionable purple paisley cane for the 3-step, if you want.... it does make quite a fashion statement! ;D
xo
Phyl
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Mary - you are awesome! Thank you for the posting the wonderful pictures and sharing your journey thru cyberknife! I am a newbie from PHX and considering cyberknife at Barrows! I just wanted to let you know how much comfort you have given me thru your posts! Keep COOL!!!
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Hi,
The 2nd was my 2 month mark and I felt the BEST I have felt in weeks. I always hate sayng this, because it seems I then go backwards. BUT I had a pretty long stretch of a number of days with being quite dizzy now followed with numerous days of not being very dizzy at all. This is the longest stretch feeling this good. I have spent most of today not even knowing where my cane was and not caring!!! ;D I also hate to say it, but I did not do my vestibular exercises while the family was gone.....not at all. I know they had helped so very much at the beginning, but I think I may have been pushing too hard and getting myself over dizzy? So I am going to go by instinct now. If it starts getting worse, I won't try a full course press, but easing into the exercises.
Thank you, Pauline.....you made my day!
I am so glad my posts helped. I am soooooo impressed with BNI and you will be in good hands if you go there. If you want any more info, feel free to PM me.
Take care,
Mary 8)
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"...numerous days of not being very dizzy at all."
That sounds like great news, as well as being a good example of what a "new normal" is all about.
I suspect that the exercises did help some in getting there. Hopefully you can find the right amount to keep you tuned up, without getting all dizzy again.
Glad to hear you are doing well!
Steve
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The 2nd was my 2 month mark and I felt the BEST I have felt in weeks.
Wonderful news, Mary! Keep up the good work! ;D
Jan
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Hi Everyone!
I am back from our long, but terrific RV trip to the NorthWest. Fabulous area!
THANK you so much for all your support. I have missed everyone and thought a lot about how grateful I am to have such great support. I will try to catch up with what is going on in your lives in the next few days as well as post a photo of Steve with us. It was so wonderful to meet him, our wonderful moderator.
My 4 month post CK anniversay occured while away. I was dealing with wonky-head and found it VERY interesting traveling through the light and shodows of the redwoods on small windy, hilly roads in our motorhome! ;D My Internist had encouraged me to take the trip even though I was dizzy. I can be dizzy at home or as I see the wonders of our country. I am so glad he encouraged me! What a great way to get vestibular exercises! I feel more symptomatic again, but Steve encouraged me by saying his worst times were the 3 - 6 month time frame after CK. My thinking is that the tumor may be at it's most swollen state during this time??? After 6 months a person probably also adapts more to the new scenerio.
I am using a cane almost all the time. I find it so much easier. I had been using a very old wooden cane I had gotten after an injury in the late '70's. It wasn't as spunky as I want to feel so I now have a new cane and it is nicer, so I feel more uplifted. That is an artist for you!
Please take care all and I will look forward to hearing how you all are doing and what has happened while I was away.
Take care,
Mary 8)
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Mary -
great to hear from you.
Sounds like an incredible trip ;D
I was just wondering last night what you were up to - and when you'd be posting that picture of you, Steve, and Weldon.
Jan
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Mary! Hey! So glad you're back - but glad you were able to take such a great trip! Like Jan, I too was wondering about you just last night...
Sorry to hear you're still experiencing the dizziness, but good to know it's not keeping you down!
Cindy
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Mary~
OK...I have to admit that I didn't think about you last night, but only because I went to bed very early!! Glad you are back safe & sound and had a wonderful trip!
K
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Hi Kay, Cindy and Jan!
It is so good hearing from you! :)
K, how are things going for you now that you have some time under your belt, post surgery this year?
Cindy, Where are you having your surgery? I will put November 7th on my calendar and be thinking about you. Please let me know how you are now?
Jan, Have you gotten adjusted well to your BAHA? Would you still do it if you went back in time knowing what you know now?
Take care,
Mary 8)
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Photos have now been posted under AN Community!
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Yea!!! Going to check them out right now.
BTW, yes I would get a BAHA if I had to do things all over again. It's been about 4 1/2 months since I was able to "hook up" my processor - and I'm still ecstatic on a daily basis about it ;D
Also, BTW, don't know if you've read about it, but Lori had the 7-12 jump surgery a few weeks ago. From all her reports though, she still can't jump :D ;)
Jan
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:D
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My first follow-up appointment is Wednesday afternoon at 3. I am sure we will schedule the MRI. I am so curious about that. I am not worried, but interested. What has Goldie been up to since being zapped? I am wondering what he will say about my balance/dizzy issues. I feel mild vestibular exercises help but at some point they cross over and render me useless for a day or two. I may want to re-address cutting off my balance on that side. I do not want to do the full AN surgery though. Right now, balance and hearing loss with tinnitus are my main symptoms.
At 4 that day (in the same area) is an AN support meeting for the Phoenix area. The topic is BALANCE! How lucky is THAT? I will be front and center. The doctor (who read my vestibular test results done in his clinic) I never met but I am most interested in hearing what he has to say.
Yesterday all of a sudden I went majorly wonkyheaded. Do others have it hit like that? The two days previously I felt pretty good and had even done some reorganizing of my bedroom closet. It felt so good. I did not feel like I overdid it. I took breaks, and even was thinking I am learning to deal fine. So yesterday I had time to contmplate, why do I have more balance issues than usual? Is it because Goldie totally fills the canal? My tumor is not that big. hmmmmmmmm
More next week after the appointment and meeting. I do not know how to thank all of you enough for your support. I am glad we have each other.
Mary 8)
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Mary,
I hope your appointment goes well, and you find some new information about your dizziness issue. Hopefully it is something that will improve with time, or exercises, or if necessary, some other form of treatment. I know it is not easy for you some days.
Best wishes, and Happy Birthday tomorrow,
Steve
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It has been a "whirlwind" the last few days which should have me feeling discouraged. While my dizziness is a little more today my outlook is better.
Saturday my wonderful sister-in-law cam for a visit. She is a guest that is NO maintenance and giving. Sunday, my husband gave me a surprise birthday party for my 60th birthday the next day. While, of course someone leaked the surprise, it was such a beautiful gift to have so many people I love attend. What a FABULOUS gift! Monday was my birthday and the family totally spoiled me all day. Tuesday we were out all morning visiting the ad agency my daughter works at and having a lunch out. Wednesday morning my dear sis-in-law left. :'(
Yesterday afternoon I had a follow-up appointment with my AN specialist. I didn't know why I was asked to schedule it, because I am not quite 5 post CK months yet. Perhaps because of my balance issues. Whatever the reason, I was so glad to talk to him. My husband and I went in with researched approaches to fight imbalance. My dizziness often does keep me constrained. I am using a cane all day most days and most of the time the rest of the days.
He is not scheduling an MRI yet because it isn't 6 months. But he is scheduling vestibular testing again to see if it is worse than pre-ck. He is MOST understanding of my difficulties. I feel so lucky to have a physician that not only hears, but listens. I am waiting to hear about the scheduling for that. Afterwards we will re-meet and decide a course of action. Right now I do believe we will go the injection(s) of gentamicin into the balance organs to kill the vestibular sensory signal to my vestibular nerve on my AN side route. He did NOT think I needed the major surgery that the surgeon suggested. While it is viable option, at that point he might as well do the AN surgery at the same time. That is just what I was trying to avoid with CK. This is an in-office procedure. He goes in through the ear drum to inject it and it may take more than one injection. It will probably make me worse for a little while but eventually it will even out like it does with surgery. Weird thing to say, but I am excited that we have this viable option on the table.
Late yesterday afternoon we went to the Phoenix chapter AN meeting. The subject - balance. How perfect for me! The most wonderful aspect of the meeting is being able to meet with "Pauline" of this site. She is remarkable and in person she GLOWS! What an inspiration. Of course meeting with the others also is good. The lady sitting next to me was post surgery by less than a month and felt terrific. Her facial nerve was bruised, so she had was dealing with that but it seems like that is temporary and I was amazed at how great she was doing in all ways.
The doctor that spoke gave some very interesting descriptions of imbalance and issues concerning it. He is the one who read my first vestibular test results and will be doing the next ones also. There was a PT doctor also who specializes in vestibular issues. She was so good that I hope to see her no matter what I do and how far away she is. Afterwards, when talking to her I think we can arrange an alternate schedule so I won't have to drive or be driven way into Phoenix twice a week.
After we left the meeting we went out and ate and discussed all that we learned. I guess I just feel so much better having a path to pursue. I went to bed early and crashed!
Again...everyone.....you are all THE best!
Take care,
Mary 8)
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Yesterday I had a second vestibular testing (see my Pre-CK description in this thread of what all happens in this 1 1/2 hour testing) and then we went back to see my AN Dr. I had my first testing pre-CK. It had showed 76% loss on balance on that side . Needless to say it was bad before CK. Since I had symptoms piling up and worsening, I decided I was not comfortable with watch and wait. I am not sure if my decision to do a ONE day zapping CK caused it to get worse or if the trajectory would have taken me there anyway, but I am now testing at 100% loss on that side. I am so glad I have a doctor who is a specialist not only in ANs but vestibular issues, also. He explained not all imbalance and dizziness is testable. I believe it is the vertical that isn't able to be tested. Even though I have done and am doing exercises, it is not improving - but vacillating - he believes this problem will not go away by current methods, because I am trying to adjust to a constantly fluctuating situation. So the ways for me to address it are:
Labryinthectomy - The procedure involves complete removal of the inner ear. It involves a two or three day hospital stay. The incision is made behind the ear in the crease behind the ear and takes about forty-five minutes. This always results in a total loss of hearing in that ear. The advantage is that it controls the vertigo virtually one hundred percent of the time. This fixes the problem in 96-99% of the patients
Gentimycin injection(s) - Gentamycin profusion of the ear is employed to destroy the balance function and hopefully preserve the hearing. This involves opening the middle ear by cutting a hole in the eardrum after numbing it by placing a cream on it in the office. Once this is accomplished, the Gentamycin is placed in the middle ear and allowed to profuse across the round window membrane into the inner ear. A tube is placed in the eardrum at the same time to allow subsequent infiltration of the medication into the middle ear in the office after the initial profusion. It usually takes at least three treatments lasting thirty minutes each and spaced ten days to two weeks apart. Gentamycin is an antibiotic that is toxic to the nerve endings in the inner ear. It will destroy the balance nerve endings as well as the hearing nerve endings. However, it affects the balance nerve endings preferentially and if the dose can be titrated, you can usually destroy the balance function and preserve the hearing function. This works to stop the dizzy spells about 80% of the time.
While talking to him, we mentioned my hearing is fluctuating also. He feels that even the gentomycin has a good chance to destroy what hearing I have left. So he wants me to come in on a good day to see if the audiology testing will show 60 or more % FUNCTIONAL hearing in that ear. I really doubt it and neither my husband nor I even thought to ask, what IF there was functioning hearing? Is there any other choices? I kinda don't think so and I would choose losing my hearing to gain balance over saving hearing in one ear and having these many bouts of dizziness and imbalance to contend with.
So this is the decision awaiting me. He has signed a handicap license application. Makes me feel weird. I feel sad, but I also feel it will help me feel freer. If I can address this balance issue, I hope to not need it!
I was so exhausted when I got home yesterday evening I went straight to bed. Today all my muscles and joints from my waist to feet are sore from the battle to stay upright during the testing yesterday. I had NO idea at the time the toll it was taking but I do know being in a harness kept me from falling and the computer registered in BOLD letters "A FALL" everytime I lost my balance that bad. I couldn't get away with anything! ;D
I will update this situation when I get my arms around this more and can enlighten you more about the decision.
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Oh Mary, I wish I could give you a hug.... Dr. Daspit told me on the phone one time that a labrinythectomy is an option if balance is an issue after CK. He is a friend of my ENT. I am having swelling now and my balance is getting worse, so I am thinking I may have to look at those options one day. I am glad that you have dr's that are experienced in the vestibular issues. My CK Doc just says... oh no that couldn't happen...he is clueless sometimes. I will say some prayers for you and I hope that you get this figured out soon.
Hugs!
Sher
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Sher,
What an uplifting note. It does help me to have the support. THANK YOU! I am keeping you in my thoughts, also.
I am leaning towards the injections. I can always go back and do the labrynthectomy later IF needed.
Take care,
Mary 8)
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Mary,
I am sorry to hear you are still struggling with this. It is so frustrating, because the way it is supposed to work is that when you lose all your balance function on one side, your brain adjusts and relies only on the other side. I guess it means you are still getting bogus signals from your AN side. If it is going to drop from 76% percent loss to 100% loss, why can't it just go away?
I am curious too what the doc might say if you do have 60% functional hearing on that side. Maybe you could wait and see if the balance nerve finally shuts down completely on its own? I have to say the injections sound like a reasonable first step, since the outcome is no worse than the surgery, and might be better. At least they aren't still talking about "while you're at it, might as well do a whole translab."
I hope you recover from the testing quickly, and figure out a good course of action. Take care.
Steve
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Steve,
Hi! Hope you are still doing well up in your beautiful part of our world.
When I was told by the technician that she is not getting a reading on that side, I started getting confused at that point. The doctor confirmed it was 100% loss. So from everything I had read, once it is gone you adjust and it takes up to a couple of weeks and you go on. So I said to the doctor, "I'm so confused". He then explained in detail which some I understood, other parts I didn't because of no medical background, the complexity of this balance issue and the fact my emotional state was in "oh no! what now? mode". ;D
What Weldon and I got out of it was that the testing can go just so far in measuring the vestibular system. He believes strongly that the vestibular nerve is still functioning in those areas that aren't abl;e to be testedd. He believes this because of my symptoms. This I gather is rare. But I was unusually dizzy BEFORE CK. In addition I have a big toe also on my right side that has a joint replacement and is not fully functional. The technician mentioned my eye problems are also complicating things. By the time I left I felt like SUCH a mess that I just wanted someone to put a sign on me if I fell. "I've fallen and I can't get up."....the sign saying "please step over!" :D
I see the humor of the crazy Clockwork Orange meets amusement park testing. You start believing you are in a bizarre dream. I am just today feeling like I am somewhat sorting through what happened. I am strongly leaning towards to injections, even if I had perfect hearing in that ear (which I most definitely do not). I am a night owl personality type and it is strange to be so tired by the early evening that I go to bed. I am an out and about socializing type person, also so it is cramping my style! Luckily, I am an optimist and a creative thinker so I know I will find my way out of this through the procedure and tweaking of my life style then adding some new adventures.
Take care,
Mary 8)
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*runs in.... runs up to Pirate Wench Mary, gives her BIG OLE' HUGGLE........... ok, smoochie too :-*.... and runs back out*
(hang in there Mary!)
xoxoxoox
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GREAT NEWS!!!!!!!!!! I received the results of my MRI and it shows "central area of necrosis". I felt nonchalant about the MRI results because I knew it may not show anything. That mad it even better to find out that my "Goldie" is dying. She is NOT dying gracefully, though. I still have the imbalance and at times some pretty dizziness.
I have an appointment next Wednesday with Dr. Daspit to have the TTG (transtympanic gentamicin) Treatment. Gentamicin (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere's disease) is injected through the eardrum using a narrow needle. The drug is left in the middle ear for about 30 minutes, and then allowed to drain out. You can read more on http://www.dizziness-and-balance.com/treatment/ttg.html.
Has anyone else in AN Land had this procedure???? Anyone else heard about it? Have any inputs???? I am back in research mode. :D
I have done soul searching about it. I know it is also used for tinnitus which is my other main issue. If this could make either or both conditions better, I would be a very happy camper. I guess I have some anxiety about doing anything. But I fear not doing anything too. So many things with this AN seem to be ambiguous. There is some chance it could make my tinnitus worse and/or not work for the vestibular issues. It is hard to take a risk but then again, it is hard to think of keeping these symptoms as they are. Any input?
On my better days I have been trying to re-direct my artistic pursuits that had stopped due to shaking hands. I bought a bunch of wooden medical canes and I am having fun making theme-oriented canes. Whether this is viable or not, I don't know. I haven't spent much so if they don't sell, I haven't lost much and had fun doing it. I have sold 3 on Ebay. I do feel sassier now that I carry a different canes depending on my mood or outfit. At least my dusty studio has some life back in it although doing portraits is a thing of the past.
Take care all and than you so much for being here!!!!!
Mary 8)
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Mary~
What wonderful news! Glad to hear that Goldie is on her way OUT!! I don't know anything about the other procedure but I will keep my fingers crossed with you! How can we see your canes? Sounds like a really cool thing to do!
K
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Hey Mary!
So glad to hear the good MRI results! Know that is such a relief. And great that you are giving the TTG a try - truly hope it works for you and your dizziness. Do you know how long it takes to start working?
What a great idea about the canes! You'll have to give us some pictures...
Will be anxious to know how things go next week,
Cindy
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mary - hang in there - we are rooting for you!
i have been dealing with my AN for only 2 months ... the one string of posts that most inspired me is your exploit .... the manner in which you went foreward. sorry that you are having a bad time ... but you have inspired me.
carter
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Thank you, Carter - and I hope your journey is a good one. I am feeling quite positive about where I am heading. It is a great feeling.
Cindy, I am not sure they now precisiely but in a few weeks I should know and may need a second or even a third injection, depending. Hopefully only one! :D
Hi Kay, Yep Goldie is a goner. She is losing her mean spirited battle.
I will try to post a couple of cane photos soon. It is fun, in case anyone decides to do it. I have thought if it doesn't work as a VERY small little enterprise for me, perhaps I can get them to some nursing homes or something like that. Ay least I am having FUN and doing something a little creative. I sold a yellow and black Bumble Bee Cane, a Red and White Candy Cane, a US Navy Cane and a Harley Davidson cane. There are other people out there besides me that want spunkier canes.
Take care,
Mary
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Hi Mary,
Great news! It sounds like the little booger is a goner, so at least there will be no new symptoms. I also really like your new cane enterprise. If you can't lick 'em, join 'em!
There is a new member Catlover, from Sweden, who is having an injection prior to surgery, to kill off the balance nerve. Apparently in Sweden they do this routinely now, so it is not unheard of. I think they have a better handle on how much, how often, and how long now, so I don't think it is very scary. You could wait and see what Catlover has to say about it.
I now have a lovely image in mind of an entire nursing home filled with grumpy old men all waving colorful matching canes around and complaining about the mashed peas. Maybe you should go for school colors, for all the aging football fans. They can have duels with them! ;D
Steve
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Mary,
What a fun idea for canes. I was just looking at one in a CVS store the other day and thinking how boring looking they were.
Do you have any on ebay that we could look at now? I just might buy one.
I pray that your injection works for you.. I have some of your issues, but not as severe. I can only imagine what you are going through. I am doing a HAPPY DANCE for your Goldie dying. yoo hoo!!!!! I hope mine does the same.
Hang in
Sher
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Mary,
what can I add that hasn't already been said? :-* Congrats m'dear..... I am so thrilled to hear this news... you know it.
xoxox
Phyl
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Mary, I am thrilled to hear that your Goldie is on her way to tumor-heaven (or the other place..)! What wonderful news and what a great way to kick off the holidays.
Can't wait to see pictures of the canes - they sound very cool and artsy.
Debbi, sending hugs your way
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You all are so wonderful. It is so much FUN to share GOOD news. I feel I received my best Christmas present early. Nothing can top it.
Debbi - I think Goldie has been ornery enough to go to the other warmer location upon her death. :D
Steve - Now I can picture dueling canes with the geriatric set and I do laugh out loud! I have seen some canes with flasks in them - maybe that should be included. We can sell popcorn and watch the fun!
Feeling relieved and happy,
Mary 8)
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Forgot how to post pictures ....LOL
For those of you who are curious about he canes you can see some of my canes on eBay under MaryBKAZ
Take Care,
Mary 8)
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Oh my gosh, Mary, those are great! I don't need a cane, but I think I want one of each! I'm going to have to think of someone I know that needs one. You have definitely found a great outlet for your talent. Amazing!
Cindy
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Mary: I sent this in a personal message, but I don't think it went through, so I'm posting it here as well.
Hi Mary,
I just read your post regarding the Gentimycin injections and also your latest MRI results! I was very very happy to read that "Goldie" is dying. ;D That is wonderful, wonderful news. I'm happy you're going forward with the G injections and I wish you a very successful outcome.
I had my MRI on Tuesday 12/9 and I'm still waiting for the results. Did Daspit's office call you or did you have to call them regarding your MRI results? As you well know, I'm pretty anxious to see what my MRI results show.
I wish you and your family a very Merry Christmas. I also hope that 2009 is a good year for you. I hope you begin to feel "normal" once more and that you can start putting the AN and all it has caused, behind you.
GOD Bless,
Annette
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Hi Mary, Most of my balance problems became intensified around months 2 through 9 after treatment and then gradually began subsiding thereafter, especially after the 1 year mark. So perhaps there is some possibility that your symptoms will improve with time. Best regards, Francesco
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Hi Annette, Francesco and Steve,
Thank you for the input. You all have given me an upbeat outlook in a week that has been more difficult. What a great gift! I was glad to hear Steve say the TTG is routinely done in Sweden. They wouldn't do it routinely if it were not fairly safe, right? Francesco, I am also very glad to hear your balance issues really improved after the one year mark. It was about a year ago (6 months pre-ck) Goldie started rearing her ugly head by causing dizziness/imbalance and hearing issues. I am tired of this silliness now and am really ready to find my own MISCHIEF. I have had plenty of time to plan for it, that is for sure! :D
Annette, I did get your PM....I sent one back. Let me know if you didn't receive it. You are such a lovely lady and a great inspiration for me.
Take care,
Mary 8)
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Mary -
congratulations on the very swift demise of "Goldie" - boy, that was fast!!! ;D
May "she" rest in peace and may I also say "Good riddance" ;)
Jan
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Mary,
I love your canes!!!! How clever
sher
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Hi all,
As you all know this AN ride is quite a roller coaster. My husband took me to get the TTG injection on Wednesday. the doctor showed us the pictures of the ear and where the needle and gentomycin would go. He explained in detail, we asked questions AND of course I wasn't too dizzy. Somehow after all of that we all agreed to wait! I feel good about the decision. It is just so strange how I seem to feel I get myself into the research mode, then make an informed decision then somehow out of the blue, things change. I usually feel a calm resolve once I make decision, like I did before Wednesday, but then Whoooooosh there it goes. I find this diagnosis very impish that way. I have had varying degrees of dizziness and imbalance since then. The doctor explained most likely it would not help the imbalance to get the TTG but would help the dizziness.
The biggest influence was the doctor saying "Goldie" was having the good beginnings of necrosis, probably won't grow anymore now and may start shrinking. He sent me the jpgs of pre ck and post ck. I put them all side by side on the computer. The tumor had visibly grown from diagnosis to Pre CK, a period of only 2 months! This seems like it might be the reason symptoms were getting worse. The photo Post CK was even bigger, visibly obvious. I have no idea how to measure it, but it has grown more than I expected since the diagnosing MRI.
In summary. I feel quite blessed to have had symptoms, then have them worsen quickly enough to be alarming, having a doctor that knew I needed a more expert opinion, and then that doctor knowing to do the MRI with contrast. He sends me to this group of doctors specializing in ANs and be treated by such a great team. I wastreated before it got too big. I had all the choices given to me. I guess, even having the diagnosis, the BLESSINGS are so numerous. It is not malignant!!!! It was caught early. I have a great husband and family. I have a great team AND have peace of mind even though the path there isn't conventional.
May all the blessings of the season be yours,
Mary 8)
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Sorry I haven't posted in awhile. Life got in the way. ;D
THINGS ARE BETTER! YEAH!!!!!! My issues are still there BUT the severe issues are definitely fewer. AND I have also gotten quite used to the tinnitus most of the time. I really feel like I have my sea legs. I am always on the ship but I am learning how to travel with it most of the time, (none too soon ). So I have been doing better. :)Grocery shopping, greeting card shopping, etc, are still very difficult physically. Fighting the dizziness there seems to be hardest for me. It is like I ran a marathon. BUT I know I am doing better because I am not having to go to bed at 8 anymore.
It looks like Weldon's 93 year old father will be moving it with us. My Mom, 88 is living with us still. It should be pretty interesting with my mom who can't hear well even with hearing aids and his dad who can't see well even with glasses and me who can't walk straight even with a cane. We also have a senior aged dog and another who is no spring chicken. Put all that together and stir into the mix Weldon is looking for a job. I am really glad I am learning to adjust to my new normal or this could REALLY be overwhelming. :o
Hope all is well with everyone here. I will try to touch base sooner next time.
BIG HUG!
Mary 8)
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Hi Mary,
I am glad to hear that things are better for you. Sounds like you are going to have a house full.
I myself am still awaiting the sea legs. I am getting very discouraged and sometime wonder if I should have done surgery and had the balance nerve cut, instead of wondering what you are waking up to each day. Sorry,,,, needed to vent. How is the weather in AZ? I was in Vegas last week and it was so warm... not liking the snow at this point. The airport was quite challenging for me getting to and from the gates. A year ago, I never would of dreamt I would be feeling this way. Hearing a your good attitude is really a help to me.. Thank you!!!!!
Sher
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Hi Sher,
Hang in there.....you are 3 months behind me and 3 months ago I was still really struggling. I know we all aren't on the same schedule with these ANs but it does seem that within the first year, things get better for most of us that suffer these side effects. I remember seeing Steve in September and he was doing so well, I thought I would never get there. All I can say is I seem to have adjusted to the symptoms. This is so confusing and alarming at times it seems insurmountable, I know. Just want you to know life does get better. I think for me it was none too soon. :D Patience is not my best virtue and waiting MONTHS to adjust seems out of line for a benign tumor. "Goldie" wouldn't let me bargain with her, though. It was on her own sweet time.
Take care and I send you a big hug!
Mary 8)
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Hey Mary! SO good to hear from you and SO glad you're feeling better! Kudos to you and Weldon for being able and willing to have your folks come to live with you guys.
Hope your dizziness continues to get better!
Cindy
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Mary...... hugglez!!!!!!!!!!!!!!!!!!!!!!!!!! :-* :-* :-*
GREAT update... thrilled that things are going smoothly (well, as we know, as smooth as possible)... and thrilled you came with an update. I know you have your hands full (approaching the same boat as you in parental care) and glad to hear you are hanging tough. You KNOW I'm thinking of you, send the endless huggles and hoping things are going ok.
xoxoxo
Phyl
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Hello dear people!
One year ago TODAY I received my diagnosis. I reflected this morning about my past year and the ups and downs. I felt such a feeling of happiness upon realizing I am quite content. No, I am not the same. I understand now you learn to adjust even when things are different. My life isn't what I imagined. But in many ways, it is actually BETTER! My canes have taken off and I am very busy. I would have never expected to be doing these canes but I am and I feel good about the help they bring to others and the fun I have doing them.
Once I had gone through the stages of grief and come to acceptance the happiness has grown. I would read under many ANer's bios, "Life is good". Now I feel that feeling and appreciate life and the joys I am blessed to have. For those of you out there who are struggling with your new realities, I can say you will get there and I am cheering you on as I was cheered on. THANK you everyone for helping me get to this point.
Big hug to all,
Mary
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Mary! OMG! :o I can't believe its been a year... when, honestly, it does feel like yesterday that I was helping to welcome you here. Congratulations for achieving SO much in 1 yr.... you have done, conquered, moved on and do the best you can... and honestly, I am so thrilled to see how much you have achieved in such a short period of time.
Congrats to you. Continued wellness wishes... and you know I send the hugglez.
xoxo
Phyl
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Hi Phyl! :)
You have helped me sooooooooo much get through this year. Can't wait to meet you at the symposium. I owe you a huge hug! You are a fabulous cheerleader.
Thank you so very, very much!
Mary
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Mary,
Congratulations on 1 year from diagnosis. Soon it will be your treatment anniversary. How time flies when you are having fun. ;D
I am so glad to hear that life is good. May it always be so.
Steve
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Hey, Mary! So glad to hear from you and hear that things are good for you! Great that your canes are doing well also :D That really was such a clever idea!
We are still cheering YOU on, Mary! Take care,
Cindy
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Mary~
So wonderful to hear from you - I was just thinking about you the other day! Glad things are going well!
K ;D
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Mary -
sorry I missed your 1 year anniversary, but I'm so glad to hear things are going well.
I checked out your canes on ebay a couple months ago; they are beautiful.
See you at the symposium ;D
Jan
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Mary ~
A belated but sincere Happy 1-year Anniversary wish.
Your positive outlook is downright inspiring and your 'AN story' a valuable example of how to navigate the storms that often accompany this relatively rare medical challenge. Thanks for being a valuable member of these forums and may even better days lie ahead as you enjoy your well-earned 'good life'. :)
Jim
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Hi all,
To those of you dear people following my thread......I appreciate you and your support. March 24th was my one year anniversary of diagnosis and TODAY is one year anniversary of treatment. A year ago I never would have believed I am where I am today.
I really want to share with those of you newly diagnosed, and pre-treatment - there is life after treatment. I want to stay in touch here and hope upon hope I wilolo still go to the AN conference I have reservations for.
Here is a quick one year snapshot!
1. I am still having balance issues although I am coping 95% of the time VERY well by just having adapted to the fact it is there. I tell people via my newly learned "piratitude" I have developed good sea legs.
2. I still have the loud shrill ringing, but it I have learned it is just there, like allergies.
3. I still have the word recognition issues and loss on the right side. Also the full ear feeling. BUT I have learned where to sit at a table, how to walk with friends and what things to just plain avoid!
4. I still seem to be worse with hand eye coordination, I still at times have trees jumping when riding in cars and other vision "weirdities" but realize I am lucky to have my taste and am able to smell the roses.
5. My hands are still shaky but I have a new outlet for my creative juices.
6. My memory is worse, but I am happy, so everyone has issues.
7. I still have swooshes and zips through my head and occasional headaches, but I have new friends and insight.
Now for the good news:
1. I am alive and HAPPY!
2. We have my mom almost 89 and Weldon's dad almost 94 now both living with us. They have challenging issues that help put my issues in perspective. I feel like we are doing something good in the world for people who have earned this by being such outstanding role models.
3. Never, ever would I have expected for a huge change in my personal direction to be initiated by this tumor diagnosis. I am still pursuing my Artzy cane business and have so much fun, it should be illegal. I am dead tired at night. My dear friend has partnered with me and my husband is now heading our little business full time. I owe this to this group and the support they gave me through my most difficult times.
4. I have the most amazing family, especially my husband who has helped me through the darkest times and endured so much of my grumpiness, complaints and gear shifting troubles. We look to our 40th WEDDING anniversary July 5. Hooray!
Yes, I do have bad days, yes, I do get discouraged at times but overall I want to say to all you that are unsure what lies ahead. I encourage you to try to find your new path. No, it may not be the old one, nor the one you had planned, but if you watch, there is a reason. It may be a better path with more enrichment.
Last I want to apologize for not staying in closer touch. I do care about you all and will be checking the site. Please excuse me if it takes awhile between messages. I am pedalling as fast as I can - and ENJOYING the ride!
Hope to see some of you in Chicago.
Hugs,
Mary
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Ya know, my dear Mary, I was wondering if you were going to show up and give us your 1 yr anniversary update! I am SOOOO glad you did! :-* :-* :-*
MAJOR congrats to you and how you are doing. Yes, I know you still deal with issues but your mental strength, your resolve... your courage is to be commended! I am SO very proud of you and I can see that life is certainly moving on for you! MAJOR congrats on your upcoming 40th! :o wedding anniversary and Mary.... I will FINALLY get to give you that personal huggle as I will also be in Chicago! :)
MAJOR congrats and thank you SO much for the update. The updates are so key to newbies here as they research decision-options and knowing outcomes like yourself certainly help the cause!
Happy 1 yr of the booger being done.... you speshal Pirate! ;) :-* (btw, will you be wearing your CK Pirate outfit in Chicago? :D )
oxoxox
Phyl
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Mary~
My Round Rock friend - SO glad to hear from you! Congratulations on your 1 year Anniversary and your GREAT outlook on you New and Improved life!! Can't wait to meet you in person in Chicago!! ;D
K
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Hi Kay and Phyl,
So good to hear from you two. I also can't wait to meet in person - big hugs are due to both of you! You were invaluable to my progression. I hope all is well in your worlds. We will be in central TX in early July (our anniversary trip) to repair, clean sell stuff, recarpet, paint and sell Weldon's dad's home. This will be our strangest anniversary but we get time alone together so that is worth millions!
Till next time, BUG hugs,
Mary
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Hi Mary,
Thanks for a great update. I love your lemons to lemonade view of life after AN. I think it is great that you and Weldon are taking care of the "old folks"; that should keep you feeling young at heart!
Best wishes, have a great time in Texas, and am looking forward to seeing you in Chicago. 8)
Steve
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"BUG" hugs?? Are you going to squeeze us until our eyes bug out?? ;D
K
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Mary ~
Thanks for a very positive and edifying account of how you've dealt with your AN-related deficits and, even more importantly, how you've persevered and surmounted these issues. Your attitude is positively inspiring! Your 'glass' is more than simply 'half full' - it's overflowing! :) May God continue to bless you with a servants heart and a love for life, even when it isn't 'perfect'.
Jim
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Mary! Hey!!! Thanks for the wonderful one year anniversary update! So wish I were going to Chicago to meet you (and everyone else!)! You know I love your great attitude - you have indeed turned lemons into lemonade! Glad to know that you are so busy, and doing so well, and having such fun, that it's hard to get to the forum often - that is really how it should be, right :)
Cindy
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Mary- I was so glad to read this post! It seems like only yesterday that you were headed in for cyberknife (while I was recovering from surgery). I always like reading your posts because, no matter what, you find a bright side. I think you remind us all that if you look deeply enough, you'll find blessings to count. Thanks, Mary! And, I will see you in Chicago!!
Debbi
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Congratulations, Mary ;D
See you in Chicago!
Jan
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Hi Mary!
I don't get on the forum very much these days, but saw your anniversaries!!! I am sure you are glad to be at this point with your journey. I whizzed by my 1 year diagnosis anniversary and am looking forward to my one year MRI. I too still have some balance problems and hearing strength comes and goes. The shrill is always there but I am getting used to it. The one thing that I have been dealing with is a neck herniation starting to press on the spinal cord... this resulting from all the falls I have taken over the years. Possible surgery in the future for that. So is your AN shrunk or stable at this time?
Life it good, I am working alittle bit at my profession as a floral designer and doing some consulting for a new florist. (I used to own my own for 12 years before all of this) just awaiting that 1 year MRI and good news. Thanks for all the kind emails you have sent me.. and thanks for showing us all that life does go on.
I will update when I have my MRI.
Sherry