ANA Discussion Forum
AN Community => AN Community => Topic started by: Raydean on November 26, 2006, 07:04:00 pm
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Just wanted to let Palace know that we will all be with her in thoughts and spirit tomorrow which is her treatment day. (if I've counted right) Way to go Palace. Time to celebrate!!!!
Lots of hugs
Raydean
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GOOD LUCK PALACE!!
Kathy
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You are in my thoughts and prayers Palace. Remember, I'm less than an hour away, call me if you need anything!!
hugs,
Cheryl
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Thank you friends:
I got up at three in the morning. I was good........no sodas or starches yesterday and only water this morning. :-X
The thoughts are nice as I sit here with the beginning of this journey week. It will be an experience!
This will be a long week. I'm blessed that they can do something for me and that we all are living in these times of good treatment.
Well, it is time to get ready to leave in the dark.
Lots of love,
Palace
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Palace,
I'm in pirate wenchy socks for you today! Best wishes and I know everything is going to turn out fab!
Good luck!!!!!! Hang in there! Sending wishes!!!!
Phyl
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Best of luck with your tx. You are in our thoughts!!!!
Flier58
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WILL KEEP THE POSITIVE ENERGY FLOWING. Nancy
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Palace,
Best wishes for a great outcome.
Regards,
Rob
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my positive thoughts and energy are being sent to you,
looking forward to hearing from you and how things went.
T
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Said my prayers for Palace and her Docs today, Pirate socks on! Good luck with the treatment.
Patti UT
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Hi Palace,
Will be thinking about you this week. Good luck at Stanford!!
Mary
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AAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRR
I got on me pink pirate socks as well as me pirattitude in hopin' that Palaces AN will shrivel up and die, die, DIE!!!!!
Kill it dead, you Zappers!!! AAAAAAARRRRRRRRR!!!!!!!
Capt Deb 8)
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Okay, going to put my socks on right now!! Good luck Palace with the treatment and looking forward to hearing how it all goes.
And another one bites the dust.
Sue in Vancouver
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sending you warm hugs for your treatment! Secretly I'm chanting the die die die chant with Captn' Deb..dont' know why that struck me as funny when I read it. Think because it made us sound vicious when we're really a loving cuddly bunch :-*
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Hello All:
First, without feeling "teary-eyed" from all your love and support during this scary time, I wish to thank you.
Upon the journey in the darkness of the morning in commute traffic, we drove the jeep around many curves in the mountains. What I thought could happen, did! (but, we got lucky) There was a person behind us following closely. We let many pass upon the way to Stanford. We were half way through the mountains in the dark, came around a corner and from the storm, was a huge tree branch limb covering the entire road and slightly over the line of the on-coming lane. For a split second I didn't know if the person would crash into us as we crashed into the tree branch, or if we would go over the side of the mountain or if there was no car coming on the otherside, my driver would quickly cross the line and go around the tree branch and get back into our lane. There was no car on the other side coming around that bend so, he made that split smart decision to whip it. We made it. That was stressful before, we reached Stanford. I'm grateful to be here.
About the day at Stanford. Everyone was pleasant and I didn't have to have a second MRI. I did my Ct. scan and was able to leave. I had no problems with the Iodine IV. (no hand swelling or allergy) What did happen was I got a whopping migraine headache as we began the ride home. I took 100 mg of Imitrex and that would normally work for a migraine, with me. It didn't touch it at all. My neck was totally locked and wouldn't move and painful along with the migraine. All that went on for the rest of the day and evening until now. Before that, I couldn't get online to thank you for your suport. OK, I'm over that hurdle.
Next problem is the swelling situation. Remember me? I had the Anyphalaxis schock with Steroid. (pred) I'm hoping I can tolorate Decadron in case I need it. (the swelling situation since my tumor is quite large) Perhaps it was the Pred combo and not the steroid itself that landed me in ER that one night. Steroid is natural in the body so in theary, it would be impossible to be allergic to steroids. So, what they will do about that problem, I don't know just yet. I will meet with the doctors on Wed. morning and ask before they begin my first of three, Cyberknife treatments.
I'm exhausted and on the Imitrex, Darvon and Valium tonight or I couldn't be writing on this forum. Forgive any errors or type O's..........I'm just too tired to reread this. I'm going to bed now!
It was interesting that they let my husband watch all of today's procedures. (every bit of it) He liked that and didn't have to be bored. I think he will be bored on Wed., Thurs. and Friday. I was told I will be on the table for 90 min. each day.
Thank you for all your informative information as, I was rather prepared as how my day would go today. (as for the rest of the week, that is a mystery)
Hugs to all,
Palace
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Hello:
I leave for my first of the three in a row CK treatments. (in two more hours) My husband wants to know can he watch through a window? They let him during the Ct. scan. It is four in the morning.........maybe in two hours someone will know the answer to this. He was a mechanical engineer so, this part of the ordeal he will love if he gets to watch the machine. (other than on the NET)
Oh, I will let you know what they do about the swelling situation where, I have the problem with steroid use.
We are leaving at dawn so we can see the "downed trees" this time. (or deer running across the mountain winding roads)
I have a horrible headache but, I have to go get ready to leave.........
Thanks again,
Palace
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Hi Palace,
They let my 8-year old son in to watch the last 5 minutes of the treatment. You could ask them if they will let your husband watch at the end. 90 minutes each treatment is quite long. I think mine was 30 - 45 minutes. You will be in and out and fast. Did you bring any CDs for them to play there? After each treatment, they will give you a tiny purple pill (I think it's steriod) for the day. I did not have any headache from them. Good luck in your treatment.
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Marystro:
I'm still online. I was about to log off and you came on. Thank you so much for the reply. OK, I will tell Richard about that. Remember, they are afraid to give me steroids because, I was in ER all night when the ENT gave me steroids. I know it is made in the body natuarally and seem impossible to be allergic to steroid. It will be interesting to see what they do for me and I wonder the dose of that purple pill you mentioned.
Oh, I did sign up when Oprah offered one thousand dollars for a stranger. I thought if I win it I will give it to a stranger on the list who needs it to pay for their medical bills due to AN problems. (or whomever I don't know on the list that needs it the most) We are going down fast financially with this so, I would like to help someone else. I hope the Oprah team picks my story about AN and someone needing the money. It isn't that much but, it would help someone on the list.
Again, thanks for your answer about Rick getting to watch some of it and yes, I have my CD's ready.
BIG HUGS.......sort or worried here.........Love, Palace
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Good luck Palace!! I'm sending The Luck O' The Irish your way!!
Kathy
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Hi Palace - keep the good thoughts in your head, stay peaceful, stay positive. Thinking of you, Nancy
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Obita-Kathy,
Our first Golden Retriever came with her papered-name of, "Way-Mar's Kerrie of Kilarney."  (the Irish luck is coming down from the Rainbow Bridge where she is now)
Thank you for the *Luck O' The Irish..........walking out the door in about 90 minutes.
I remembered to feed the dogs before we leave! :-*
My two relative dogs, Molucca and Molokai (littermates) are "cheering" at home today.  They are relatives to "Kerrie" dog.
The tumor is trembling in horror of what is to come for it today!
Thanks guys & gals,
Palace
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Palace:
My AN recovery was so much sweeter with my now 13 year old Golden, Maggie Rose O'Brien - Irish she is!!
Hugs for you, chin and ear scratches to the four legged ones.ÂÂ
Kathy
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8)
OK, thank you for so much help so far. I'm home and they gave me Decadron. (4 mg) I will only take it if I feel extreme symptoms coming on. (such as, spinning room....extreme headache, total dizziness, really bad ear pressure or extreme loud ear.....some of the things one of the doctors mentioned today. I wanted to talk with the doctors after the first TX but, they had to leave.
Here is my next question. Is the CK dose or fractionized placement on the tumor the same each day or different. For example....do they hit say the middle of the tumor the first day, more towards the outter part the second day and more extreme to the edges of it the third day. I go three days. I know this is a difficult question and maybe there is no firm answer as perhaps each case is different. (or do they plan the CK on an AN basically, the same on a medium to larger tumor? Does anyone know the answer to that? Hummmmmmm, it just hit me that I should be asking this on the CK forum with those doctors.
I have a slight headache now and the balance is more off but, that is all so far. (only 4 hours after my first treatment right now)
My questiion is that if I don't have extreme symptoms from swelling the first day, will I expect that I will have no problems the second and third days. (or is it sort of an accumulative thing.........building swelling and pressure as the duration of TX you have in a row?
Can anyone answer these questions? If not.......I'll try the Cyberknife forum very soon.
The CD's playing that I brought helped me so much. I brought "Torch Songs." Does anyone know what those are? LOL No, you do not need to answer that question, too.
Again........thank you so much for helping me along this stressful journey,
Palace
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Yikes, Palace, did they tell you to take the decadron "as needed?" Swelling is much easier to control with a pre-emptive strike, than it is to get rid of once it starts. Please don't try to be your own MD on this one. I had the stuff pre- and post op and it really didn't affect me much, although different people react differently to it.
Capt Deb 8)
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Captain Deb,
Yep, as needed because.........they were afraid to even give me any because, I went to ER that night from Pred., remember. (meaning the steroid experience) So, it is easier to control if I take it now! Well, the pharmacy will close at seven and I have one pill. I live way up in the mountains and about 45 min. from emergency. I'm trying to remain cool about this. How long does it take to swell? (any ideas on that?) I hope I have no problems in the middle of the night.
Again.......thank you,
Palace
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Palace,
They had me on that stuff (dexamethasone) 4 a day, 10 days before surgery.
Paul
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Steroids (both Decadron and Prednisone) are powerful drugs that must be taken in a strict manner. Dosage must be tapered down as a person goes off of them. Please be careful how you take your Decadron.
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wishing you the best you are in my prayers too...keep us informed please..Linda
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Steroids (both Decadron and Prednisone) are powerful drugs that must be taken in a strict manner. Dosage must be tapered down as a person goes off of them. Please be careful how you take your Decadron.
Ditto! Take this stuff exactly as prescribed--no more and no less!
Capt Deb 8)
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Hello :D
I'm almost there. One more trip to be "waffle-face!" I still haven't taken any pills. (no Decadron) The exhaustion is beyond belief but, I'm not complaining at all. Tomorrow night is celebration time. I can't wait! Thank you all so much for your help and I hope I have helped others already, as well.
Look under the Cyberknife forum with my nickname of Lacie about my latest post there regarding hearing loss. I will be interested in the doctors answers. I just posted that under general questions.
ONE MORE DAY!!!!!!!!!! Are purple pirate sox proper........after all it will be a Friday?
Good night all,
Palace
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Palace,
Good luck on your last day of CK treatment at Stanford tomorrow. Remember to have the traditional celebratory luch and wine toast down the street at the California Cafe ( if you don't like wine, the adult beverage of your choice is fine :D.
On the CPSG site one of your posts dealt with hearing preservation rates after CK treatments. I'm not sure how much the Docs who monito that board will say, but I'll cut and paste the study done at Stanford by Adler, Chang, Gibbs which details the Stanford CK results to date. I figure that's about as close to home as it could get in terms of a relevant study ;D
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15918941&itool=iconabstr&query_hl=21
2005 Jun;56(6):1254-61; discussion 1261-3. Related Articles, Links
Click here to read
Staged stereotactic irradiation for acoustic neuroma.
Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR Jr.
Department of Neurosurgery, Stanford University School of Medicine, Stanford, California 94305, USA. sdchang@stanford.edu
OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.
Good luck Tomorrow
Mark
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Palace - I've got my pink pirate socks on for ya and sending big hugs!! I will be celebrating along with you tomorrow ;D
hugs,
Cheryl
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Socks are on and it's time to PARTY!!!! Let the celebration begin tonight. We're all doing a happy dance for you ! Know that you are in my thoughts.
Big Hugs
Raydean
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Hi Mark,
Just wanted to thank you for letting us on all the research you have done and adding the links. It sure made my research less "labor intensive".
Flier58
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Mark,
Thank you so much for all the data you provided. It was my last day of treatment and I just wasn't up to the computer. I can hardly sit here now. This thing took more of a "toll" on me. I not even fatigued......exhausted. I suppose that is to be expected. I must do the usual MRI, audiologist and then doctor consultation in six months.
GANG.....WANNA HEAR THE REALLY GOOD NEWS? (since you followed my steroid problem) I haven't had to take that pill yet. *(Decadron) I'm thrilled and the doctor said, "If you make it to next Wed., then you probably won't need it."
I appologize that I don't have the strength for other posts right now. Thrilled and exhausted that it is all *over* for now, anyway.
Just to let you know..........
Palace
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Way to Go!
Glad to hear that the treatment is behind you. Get plenty of rest, you had a physically and emotionally draining few days.
We're pulling for you to have NO side effects (other than death to the intruder!) Keep us posted.
vjh
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Palace,
Your're done!!!! Now try to rest as much as you can. I needed at least 3 days (not everyone) and let's hope you don't need to take any steroids. Hurray!!!
Flier58
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Palace,
Congrats on completing the treatment! I was also very exhausted the first day. Not sure it was due to anticipation and anxiety than the treatment itself. I slept well on day 1 and just back to normal sleepwise the last 2 days. I tool the little purple pills as I was told like a good little girl. Sleep well and get a lot of rest. The mountains must be nice and peaceful up there.
One more AN "zapped" heading towards AN heaven (or hell :D). Hip hip hurray!!
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Hi Palace:
You deserve to rest. When you are up to it, let us know how you feel as a Postie.
Congrats and happy necrosis!! ::) Kathy
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Hi there Palace...
Congrats on getting through your treatment sessions....time to chill out, put your feet up and take some well earned rest.
Best wishes for a speedy and successful recovery.
Derek
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Palace,
welcome to the wonderful world of being a "postie". Thrilled you don't have to use Decadron and hoping that you continue on this great path. You may have some good days and not-so-good days (yeah, the fatigue is a kicker!) but know that it will get easier. Have patience... it truly is the key.
Congrats!
Phyl
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Hello,
I have more strength today; not as "totally wiped out." I have to admit, I could hardly believe it when I saw my profile signature as a "postie." The time finally made it here. It is strange as yesterday my face didn't feel like it got socked and today it feels wholloped. (or however you spell that) So, the tumor is on and off the nerve, is that it?
What was so nice was to see all of your "congratulations." We all work hard to get this as far behind us as we can. I have great respect for those who went through the major surgery, itself. I have had my experience with other surgeries that were extremely bad and risky but, in the head area. My hat is off to every one of you.
I'm still trying to slide by with just the CK. (and no, I haven't had to take the Decadron) :)
Thank you all,
Palace
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Palace,
I'm sorry I haven't been keeping up! It sounds like you are doing great and amoung the posties now!! Get lots of rest and take good care of yourself. Hmmmmmmmmm, I wonder if all our Ans have a forum somewhere?
Hugs,
BrendaO
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As a recent "graduate" of Stanford CK treatment myself I send my thoughts and prayers no side effects and ........shrinkage! I think we should have a special thread for post CK progress!
Best Wishes,
Bev
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:-\
Hello,
For those interested in the update on the possible steroid........I had a very quick incident at noon today. Everything was starting to spin and my ear BLASTED loudly this static noise like something shorting out on a radio. (old style radio, if that makes any sense) I had leaned over to put something down in front of my big male dog and then something in front of the little red girl dog. (littermates) I stood back up and "it happened." I sat down quickly and stayed put to read. So far, I haven't take then Decadron but, that was a frightening scare.
I'm taking Vit E, drinking lots of C juices and took an Asprin today for good luck. I'm still hopeful to escape the steroid pill.
The energy level is still at the exhaustion stage. I was a very wired-type before. I put the trash cans out on the street and took a walk today. (wasn't easy) The energy does come back somewhat. someday....right?
Anyway, that is where the swelling situation stands on four days out of Stanford, so far.
Again, thank you all so much for your helping me through such an awful time (and I have had many) in my life. It does help with knowledge and you people as my friends to be there. There isn't anything like it........to have those who have, "been there and done that." (they know what you mean and can communicate)
Sincerely,
Palace
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Palace,
So glad the treatment went well. Hope you are feeling better
DIE TUMOR DIE!!!
Patti UT
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:)
Hello,
I'm one week out of Stanford today. Here is a new thought for you to ponder. (something I haven't heard mentioned on this forum before during my time, anyway) I'm thrilled that it is this time of year that I had CK done because, I didn't have to take that Decadron pill, meaning steroids. (so far anyway and time is looking good, on my side) Here is my thought! This time of year in winter, over-all body has less swelling in general. (you know, feet swell for people in summer/heat, hands swell, (hard to put on rings over the fingers in summer) we seem to swell. My thought is maybe, just maybe it is in my favor to have less swelling after the CK because, it is freezing and winter here, in Northern California! It is just a thought but, I'm taking all the help I can get. (anything besides steroids to help me get through this with the least amount of swelling due to my reaction to Prednisone/steroids and probably, the Decadron.
I'm thrilled so far with the way things turned out for me with the CK. The first five days were rough with the migraines daily, exhaustion, increased balance problem and increased facial pain. Now, all those things have subsided to a great deal. I had some on and off increased ear pain in the first five days but, today I feel close to a normal person. My ear fullness is cut into about half now. The loud "ringing and banging" in my bad ear is the same. I do feel like perhaps my hearing is even less in the bad ear since CK but, I'm really happy so far, OVER ALL.
This is my story one week today, after Cyberknife with a rather large tumor. If a tumor that has had radiation grows back.........where does the growth begin? Does it grow all around from the outer edges of the entire tumor, or just from one spot of the left-over tumor. I know about one-third of tumors can shrink so, I have read.
Thank you for reading my posts and any info,
Palace
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Hi Palace,
I just noticed your post has SSD listed at the bottom. Did you have that before CK? Just curious..
Mary
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Hi Mary,
Maybe I put that wrong. I was not completely deaf when tested but, nearly. It seems like it is worse since the CK but, hard to tell. I have a slight bit of hearing on the right but, I will be tested in six months along with the next MRI. (so, maybe I put that wrong but, I'm nearly deaf in that ear) Is that not single-sided-deafness? I have to say, "What did you say, all the time?" I couldn't understand a movie when we tried one a couple of days ago. (even turned up I caught words here and there) It was tough. I will give it the six months and see what the next test shows. (should I remove the SSD........maybe that is not correct because, I can hear muffled tones on the phone, on that side)
What does anyone think about having this treatment done in winter and perhaps helping with the swelling incident? Does anyone out there think maybe the time of year I had this done, helped me with not having much swelling?
Good to HEAR from you Mary!
Hugs,
Palace
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My AN side hearing is also diminished but I can still listen to the phone on that side. But it is definitely not as good as before. I found myself in noisy places to have to listen carefully or turn my good ear to hear or look at their lips. I sometimes have to ask "excuse me, could you repeat that?". I am hoping this is not a permanent condition. May be it's caused by swelling. Who knows.
Hope you are doing well.
Mary
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Hello Friends:
I have had a migraine headache either at night or morning almost every day or night since the CK. I made an appointment for next Friday to discuss some issues/symptoms with the ENT who originally ordered my MRI. (which showed the 22mm AN) I'm very impressed with this doctor so far. He is in Santa Cruz....(I'm not refering to the doctors I saw at Stanford right now for the Cyberknife TX) This doctor can maybe give me some answers about the migraines because true, I was tested for allergies many years ago by another doctor and by the way, they didn't order an MRI. (another doctor in Santa Cruz, CA., at that time) Well, I'm the highest tested around this area to redwoods trees and molds. It is difficult to distinguist at times, what is causing the migraines. (the AN or otherwise) My neck felt like someone broke it last night. My ear hurt a couple of days ago when we went to about 2,100 ft. level in the mountains on a short trip. My ear hurt all that day and it feels really "full," again. My facial pain was bad last night but, I admit I took Aspirin today.
Stay tuned just in case any answers might help others.......open to any comments or suggestions.....
Palace
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Palace,
Were you susceptable to migraine headaches before your A.N. problems?
I ask this because it seems very strange how headaches effect us all differently. You know that I had a huge growth and had radical surgeries for both the tumor resection and the shunt installation. In spite of all that I never had any really bad headaches to speak of, before or after surgery - with the exception of the first few weeks after surgery as I was healing up. I went through an 8 month period without having to even take so much as an aspirin during my recovery.
There are people who get migraines and people that never get them. So far, I've never had one, thankfully. I know of people that are severly stricken with migraines. They can be touched off by a food allergy - among other things - and the tendency to get them is inherited. We should start a headache thread to compare notes on this subject alone.
Paul
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To Paul and others,
When I lived in LA I never took pills or needed them. When I moved to this area up north, all my med problems began. No, I didn't have headaches in Los Angeles area. I lived in the desert area to begin with and then the beaches. (without any problems)
When you age, your body changes so it could be the allergies to this area I live plus, getting a bit older so-to-speak. Over all, I always thought I was an extremely healthy person. My only problem in my youth was, I could never sleep. I just stayed up all night doing things. (getting things done) I do remember now that I think of it, taking a Valium on a Sundday each week just to get one nights rest. Other than that, no pills. I have a slight curve of the spine so, that might be some of the neck problems, along with the AN as, that got worse over the past few years. (the AN not being properly diagnosed and getting larger) So Paul or anyone else.......can it be the fluid is cut off, perhaps? (that is supposed to flow) You know about all that. (those who had a shunt) I'm not knowledgable in that area at all.
I have lived on Imitrex for many years now. In fact I have only a few pills left and never ran out. I'm about to run out. You only get a few pills on a card and the card cost is, two hundred eight dollars, without the insurance kicking in. I have fifteen more days and they will help me with the percentage of getting another card. They only pay for so many pills per a duration. Reasonable but when you are aflicted as I have been lately, I ran out of my quota. I hope I don't have to resort to getting the pills without the insurance percentage, this next bout. It is one in the morning as I write this. Sometimes I don't want to go to bed as, that is when the headache comes on, the most. I moved to the front part of the house and I'm camping out there by the fire where it is warmer. That helps some of the time when it is in the upper twenties or low thirties, outside. We are having snow now on our local mountains. (not in my yard but, close tonight)
If there is a "headache thread," I'm a good candidate for that. (very experienced) I thought the rolling colored lines I would get would be connected with headaches but, "I used to say to my husband that I wondered if I had a brain tumor," when I would get rolling colored lines across my vision and it would last say, about five or so minutes. (I did wonder if I was not diagnosed properly and had a brain tumor when I would get those lines or the times my head would feel like it was about to blow-up, if I would be sitting and suddenly stand up) For an extremely athletic person, all this became very frustraiting. I'm the thin and wire-type. (and yes, TYPE-A person in the past) This AN put a big dent in my schedule. Fatigue is now on my speciality list, too. ???
I'm sorry..........I wrote way more than I planned to do on answering Paul's question.
Good night or good morning........Palace
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:)
Ok, it has been three weeks this morning, out of CK. (21 days) I have an appointment with the ENT doctor that first ordered my MRI. (not Stanford but, in Santa Cruz) I will try to get a prescription of the injection Imitrex for my headaches. I'm out of the pills and the insurance won't pay their part for anymore pills for a couple more weeks, at least. They cost well over two hundred dollars for just a few pills. (just a few pills on a card) That would be without insurance. I usually have the 30 mg spray Imigrex, the 100 mg pills of Imitrex but, I'm out! I have never been out before. If I can get a prescription for the injection type today, I would think the insurance would cover a new prescription, by a different doctor and a different type of administering it medicine. That isn't why I made the appointment, though. I need to find out which symptoms are allergy related and which are AN symptoms. (seperate) In other words, which can be treated and which am I "stuck" with. (not meaning stuck with an injectible needle of Imitrex!) ;D
Here is where you come in..........can any of you think of any questions I might ask that are appropriate, considering everything? I leave in a couple of hours.
I have that severe neck pain. I'm the highest tested in this area to redwood trees and molds. (tested by a different doctor, years ago...........ENT.........the one that should have sent me for an MRI in the first place)
I'm just wanting to get rid of migraines, neck pain, you know! (if possible)
I used to get the injections which were made specifically for me. I got those once a week but, you can die from those..........on the spot. I know of one person who did. "The old A-shock, again!" I took those shots for a year and then QUIT.
I'll report back what happens today, if anything. It is expensive so I had better get some answers. This is the place I will be getting my audiologist testing again, in about six months. *(the follow-up for Stanford and then the cons with the Stanford docs about that and the next MRI)
I appologize that this got long. Do you have any questions I might ask the doctor today? You all know my history by now.
Leaving soon,
Palace
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;D
Hi All.......
I'm leaving in one hour and trying to think of all the questions, I can. This is the doctor that gave me steroids in the very beginning, when I landed in ER from the Pred. (A-shock) I know, it seems impossible to be allergic to something your own body makes naturally but, the symptoms were there. I couldn't swallow or hardly breathe. The throat was about closed. Here is my theory on that........steroids can play tricks on the brain and make a person stressed. Was my throat really closing well, it felt like there was only a pencil opening of air left, at the time. I surely wasn't going to take any chances and I don't ever want a steriod again.
PLEASE SEE POST ABOVE THIS ONE.......
Thank you all,
Palace
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Hi
I got the inject-type of Imitrex. (6 mg. only and the doctor would give me a prescription after having the allergy testing) I was tested many years ago by a different ENT, as I mentioned before. I made the appt. for March. I have "had it" for this year!
Palace
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:D
I fooled ya! No, I didn't go to ER again for a Christmas Eve party! (only the night before last, with that foot opening up, ordeal)
I switched off the Valium last night to Ambien for sleeping. (no headache and the neck isn't too bad this morning) The cheek still hurts, balance not too bad, ear rining extremely loud, a few ear pains, fullness in the ear and somewhat metal taste. That is it for 06' and will get back to you once I have the allergy testing to seperate which symptoms are AN and which are allergy related. (in a couple of months)
Now, we face the up and coming New Year's Eve, next week.
HAPPY NEW YEAR..........Palace