ANA Discussion Forum
General Category => Inquiries => Topic started by: carter on October 21, 2008, 07:42:07 pm
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HAVE BEEN LOOSING HEARING FOR 10 PLUS YEARS. ABOUT 8 YEARS AGO, AN ENT DOCtor ASKED ABOUT THE LOSS ONLY ON ONE SIDE. HE STATED THAT HE COULD RUN TESTS, BUT THEY WOULD SHOW 0 SO I SHOULD JUST ACCEPT THE LOST HEARING.
3 YEARS AGO, I WAS FITTED FOR AN HEARING AID. WE TALKED ABOUT THE LOSS ON ONLY ONE SIDE. SHE FITTED ME WITH THE AID AND THAT WAS IT. she worked for teh office of the ENT seen years ago.
EARLIER THIS YEAR, THE AUDIOLOGIST WAS ON VACATION AND DID NOT CHANGE HER VOICE MAIL. AFTER TIME, I CONTACTED ANOTHER AUDIOLOGIST AND THEY REPAIRED MY HEARING AID AFTER A TECH AND I TALKED.
AS I HAD NOT HAD MY AID REPROGRAMMED IN 2 YEARS, I NEEDED IT ADJUSTED TO COMPENSATE FOR LOST HEARING AGAIN. TO THE NEW AUDIOLOGIST'S OFFICE AND I MET HER. SHE DID THE NORMAL hearing TEST AND ASKED ABOUT THE ONE SIDED LOSS. THEN PERFORMED A TEST WITH PROBES ON THE NECK AND FOREHEAD WITH NOISE BEING BROADCAST IN MY EARS. ABNORMAL!
SHE ARANGED A VISIT WITH ENT - THE NEXT DAY.
THE ENT, TALKED about hearing AND SET UP A MRI. I HAD A HARD TIME WITH CLOSED IN FEELING OF THE MACHINE. LESS THAN FRIENDLY TECH ALSO. it was late in day and i had feeling that he wanted me to say i can't do it? he offered a blindfold.
GOT CALL FROM ENT AND HE SAID THAT I HAD A GROWTH. NON MALIGNANT. HE TALKED TO MY GP AND THEY RECOMMENDED THAT I TALK TO a CYBER KNIFE facility. THE MACHINE IS NEW IN The Tulsa , OK area and both are associated with the supporting hospital.
Oct 7 - TO CB AND I WAS TOLD THAT I HAD AN A.N. THE SIZE IS 2.9 * 1.6CM. IT IS CLOSE TO BRAIN STEM. CK DR TALKED ABOUT THE TUMOR, SAID CK WOULD KILL THE CELLS, DESCRIBED MIMIMUM SIDE AFFECTS FROM RADIATION, SAID THAT I WOULD LOOSE SOME HEARING, GAVE TOUR OF FACILITY. ETC. SHE SAID THAT SHE HAD PERFORMED 30ISH OF THESE PROCEEDURES ON THE CK. SHE IS DIRECTOR OF THE PROGRAM. SHE HAS SEVERAL YEARS WITH OTHER MACHINES.
I KNOW THAT I DO NOT WISH TO HAVE THE SURGERY ..... TIME IN HOSPITAL AND PLAIN FEAR. I LIKE THE IDEA OF NON INVASIVE PROCESS.
SHE SAID TO GO OUT AND GET EDUCATED. TO GO ON TRIP TO HAWAII THAT WIFE AND I HAVE PLANNED FOR 2ND WEEK IN November. SHE SAID TO GO ENJOY LIFE. SHE ALSO TALKED ABOUT NOT LOSSING THE HEARING TOTALLY.... I HAD THOUGHT THAT SHE SAID THAT I WOULD UNTIL I LISTENED TO TAPE RECORDER TONIGHT. WIFE TOOK RECORDER AND GOT PERMISSION TO TAPE THE MEETING.
MY ONLY REAL SYMPTHOM TODATE IS HEARING LOSS anf the ringing in the ear..... SOME BALANCE ISSUE AS I FIRST STAND and a little as i walk.
I HAVE DECIDED 99.9% TO TRY CK? I AM 56 YEAR OLD MALE IN PRETTY GOOD HEALTH - OVERWEIGTH - GOING TO WEIGHT WATCHERS AND HAVE DROPPED 35 POUNDS SO FAR. TAKE BLOOD PRESSURE MEDS.... SAME SCRIPT FOR OVER 5 YEARS. I HAVE MADE APPOINTMENT WITH DENTIST AND GP..... GET A FULL PHYSICAL, FLU SHOT?, GET TEETH CLEANED , AND ASK FOR ADVICE. THIS IS set for the LAST OF OCOTBER.
I HAVE READ A LOT ON THE INTERNET.... i see that every site is sponsored by a group that pushes what it supports ... i am referring to those associated with dr offices or hospital. none of these "commercial" sites give an even account? or am i wrong? so i know if i go to surgeon, he will most likely say to have the surgery .... if to ck dr. the bias will also show??????
so given my present state of mind..... i think that i have made up my mind for the CK. to have it done in Tulsa - yes i know of Dr Medley in OKC. The Ck dr her impressed me. or more so, she impressed me.
also going out of town means lost days of work. i need to feed the family. i
--- i have united health care insurance.
the ck dr said 5 treatments.
the dr said that she would schedule 4 mri's for the first year... she did not talk about other visits - immediate care or anything else ....
i have scheduled another appointment with the CK dr on the day after we return from our trip. i still have questions ... but giving CK a shot makes sense to me.
sorry this post has been so long...... writing it out helps my nerves?
and i have to say thanks to the audiologists that had to question the hearing loss - thanks DR. Vikki!!!!
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Carter,
I am almost 3 weeks post CK. I had 3 treatments approx 50mins each, 3 consequtive days. I was the first AN at Salt Lake Cyberknife. My doc had been trained by Dr. Medberry and also did GK at Barrows in AZ. I was worried about be the first at the new clinic, but decided to go for it and as of today, 3 weeks later I am starting to feel somewhat like I did Pre-CK. I would recommend it to everybody if they qualify for it. Hang in there!!
Sherry
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Carter~
Welcome! You must be somewhere in my neck of the woods - I am in the panhandle of Texas! I'm sorry that you have been thru so much. I don't have any advice or help regarding CK, but I know that others will have more to say - I just wanted to welcome you to our happy, little group!
K ;D
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Carter -
sorry to hear that no one thought to look into whether or not you had an AN when you first experienced hearing loss. While it's probably not a huge consolation, lots of AN patients go undiagnosed or misdiagnosed for years, so you are not alone.
CK sounds like it would be a good choice for you, although I'm not a doctor.
The main thing with ANs is to educate yourself about ANs in general, and treatments specifically. The ANA offers some really great information (brochures) so you might want to request them.
There is also a CK forum that you might find helpful - I don't know the link since it's changed recently, but Steve or Phyl is sure to know it and will pass it along to you.
As for your question regarding docs. Yes, it's true that most who perform surgery tend to recommend surgery and most who perform radiation tend to recommend radiation. There are docs that do perform both treatments so they tend to be a little more objective if your AN is able to be treated with either method.
Jan
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Hi Carter,
Welcome to the forum. I had CK just over a year ago, and am very happy with the result. Mine was a small one; with a larger one, you can expect a bit more of the swelling symptoms in the first 6 months to a year, judging by the experience of others. I wouldn't hesitate to go to the new facility in Tulsa, especially since you seem to like the doctor there. Medbery has said that any facility staffed by people with previous radiation experience and good training on CK can perform the procedures very well. It is all in the computer anyway. The new cyberknife forum that Jan mentioned is at http://www.cyberknife.com/Forum.aspx.
I wish I was going to Hawaii in November, I hope you have a great vacation. 8)
Steve
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Welcome Carter to our elite group of ANers...Here you will find support and caring people from all walks of life to help you get thru this ordeal....
JO
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thanks for the words .... they realy do help right now. i am past teh stgages of why me and being mad ... i am more into acceptance but am still very apprehensive.
i ahd joined the cyberknife talk group - -my post was about the last before they cahnged the site and archieved my post. so i di not get a lost of feedback.
i found this site yesterday - joined and pasted most of the post into my introduction. i have read several posts to date.
i am 99.9% headed towards CK.
reading the posts that i have gotten to so far have brought up my confidence level and has helped to make me more at ease .... i read one where a blow by blow account was given of each step. this was amazing to me ....
my biggest open question at present is what to expect after the treatments ..... the ck dr downplayed side effects. she made it sound as they would be few except for some tiredness? i really want to know what to expect -- and yes i know everyone is different. this unknow is my fear at present.
i was glad to know that i was not alone with the issues of the mri - closed in feeling. i had never had such a feeling before. a question about mri's ..... i read on some of the posts about testing for issues with the comparison "dye" before it is given. is this standard? the mri tech just brought me out of the machine - said that he was giving me an injection of the dye - left me blindfolded - cleaned the are and gave the injection through a vein.
i ask about the mri as the ck dr said that she prefer that i need to stay with the same mri location as it helps in accuracy if the mri's come form the same machine for each test. this is when itold her that i did not want to go back to the same place .... am i being too "picky"? i just think that i wan tto be treated a person with feelings....
i am not a negative person - still like to sing the praises of the audiologist - Dr Vikki.
and thanks for the words - it does mean a lot right now.... for my wife and i. we are celebrated our 35th wedding anniversary - the reason we are going to hawaii. she deserves it for puttiong up with me.
again tahnks
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Carter,
I didn't have CK but GK, but I can relate to your situation because of the similarity in size. Our ANs are on the borderline that is acceptable for radiation.
A major concern is the possibility of swelling, which given the already existing compression of brain structures can be dangerous. In my case, my 4th ventricle is compressed, and in the case of swelling it could be blocked and thus cause hydrocephalus. It is important to be aware of such risks (brain stem compression is another). So make sure to ask your doctor about proximity of your AN to important brain structures etc. My doctors decided to treat me with a somewhat reduced radiation dose (11 Gy instead of the standard 12 Gy) to avoid swelling. CK is fractionated, so this may not be an issue, but you may want to ask about the overall dose that you will be receiving as well.
Marianna
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Hi Carter,
In order to see "brain boogers" better, the dye is used when giving an MRI. And that is usually the standard to detect Acoustic Neuroma. They really glow a bright white with the dye.
I had Gamma Knife, and my AN is smaller than what you have, but I came through it okay. The first week after wasn't much fun, but that was due to two things. 1) The steroids I had caused insomnia. Really a miserable experience for me. 2) The radiation upset the facial nerve and it let me know about it, big time! My face on the AN side felt sunburned and I had all sorts of "nervy" things going on.
Also, you will probably feel very tired after the treatment. I mean, this is only natural.
You might also read this:
http://www.hearinglosshelp.com/articles/balancesystem.htm
This explains the balance system and what happens to you when things go astray. It's a worthwhile read.
Hang in there, things will get better.
Sue in Vancouver WA USA
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after reading some postings i am a better peson .... i know what whanky head is. i feel better being amoung others
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I got the contrast dye the same way, just a word or two telling me what was going on. The comparison works better if you don't move around. Some people do get tests ahead of time, to check for possible issues with kidneys, but many places don't ask for the tests unless you are having kidney issues.
Swelling with a 2.9 cm AN could bring on some issues, so that is certainly something to check into. Hearing, facial nerve, even brainstem as Marianna mentioned. Steroids can help control the swelling, but bring their own side effects along. It is hard to say, and the best info will come from a radiation oncologist who is looking at the MRI.
Glad you are finding the forum useful, we hope to see more of you here. :)
Steve
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Hi Carter-
Welcome to our world. I can't offer much info on CK, since I had surgery due to size and placement of my tumor. However, I would direct you to a website that one of our fellow-forumites put together which contains first-person stories of a number of AN patients and their treatments. If you lgo to "patient stories" and look for Mary from Arizona, you will find a great account of her CK treatment. Here's the address:
http://thebraingang.wordpress.com/ (http://thebraingang.wordpress.com/)
Jim Scott's story is also there - surgery followed by radiation. Lots of other great stories, too - I think you and your wife would enjoy reading through them.
Try not to get overwhelmed as you do your research - it is easy to get information overload! The trip to Hawaii sounds like a perfect getaway, and at a perfect time. You and your wife should just concentrate on having an wonderful anniversary while you are there - you can deal with the AN stuff when you get back (it's not like it is going anywhere!)
By the way, the MRI tech sounds like a weenie. I can't beleive he offered you a blindfold! Talk about insensitive. If you have to go for another MRI, I suggest that you ask your doctor for a presecription for Xanax or Valium. I am severely claustrophic, so that is a must for me - and it works very well. Just make sure you have a designated driver! ;)
Hey, congrats on your success with Weight Watchers! I am a big fan of WW - I've kept my weight off for years by following their program of sensible eating. Don't be surprised if you are able to go off the BP meds eventually - it is amazing how dropping even a little weight lowers your BP.
Hang in there, Carter.
Debbi
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Hi, Carter:
I've been distracted with some mundane chores of life recently and missed posting on this thread, so please accept my somewhat belated welcome.
I'm sorry you have an acoustic neuroma but pleased that you found your way here and received our usual warm, informative greeting. I had surgery, then radiation but it was FSR, not CyberKnife, so I can't offer much in the way of advice. Others seem to have given you plenty of useful information. I trust you'll have a very successful CK treatment. Enjoy the trip to Hawaii. :)
Jim
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Speaking of contrast dye...
They pulled me out of the machine, the tech said "you're not breastfeeding are you?" I said yes I am. He said, "oh well you can't nurse your baby for 3 days" and then was about to stick me. I jumped off the table and started ranting and raving. My baby was 6 weeks old at the time and my inner mama bear came out with a vengeance. LOL I didn't have enough milk in the freezer to get her by for that long, so they ended up letting me have 3 days to prepare before coming back to finish the MRI. As it turned out, after doing research on gadolineum, I only needed to abstain for 24 hours, so I could have finished that day after all.
Vonda
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i have decided on CK with theTulsa, OK facility...... Dr Heaton .....
A new MRI, CT scan, and mask making are scheduled for next Tuesday. I am going to another facility for the tests and the Onocologist prescribed valium to take before hand.
Dr. Heaton did have me tested before hand for any issues with the contrast dye.
i just feel confident with her .... then i say i guess????? it is scary to think about this too much.
my wife and i went to hawaii for 9 days - just returned and to the doctor, the next morning to finish any questions, etc. i found the ultimate combination --- the woozie head, a couple of drinks while walking on a cruise ship. this will really make you walk funny!
hawaii was great.
Dr. Hearton's protocal is for no preventative steroids. i had a central serous retinopothy - weird detatched retna a few years ago and i was told to avoid steroids if possible.
i am old -not this old - but too much has happened???@#%$@#$
the plan is now for Dr Heaton to plan the process early the week after Thanksgiving and to start at the end of this week or early the next week.
Dr Heaton is normally "dry" ..... but she did get to me .... she listed a few side affects and said that i was lucky ... i would not loose that much hair. my wife started to laugh and asjked if that is due to not having that much to start ... and she said yes.
the hair was long, so i had it cut short in case enough falls out????
her nurse - lori - is a sweetheart.
my wife has been mothering me -----
people treat you a bit nicer when they find tha tyou have a brain tumor.
so life is good.
i will write and let all know how it is going and what it is like.
thanks
carter
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Carter:
Thanks for updating us. Your positive attitude will be very beneficial to you during your treatment and recovery, which I pray will be both smooth and rapid.
Meanwhile, enjoy the 'mothering' and remember, hair grows back. Lets hope your AN never does. :)
Jim
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Hey Carter,
Glad you found this great site and seem to be taking this who process in stride. Sorry you were miss diagnosed for so long...i think this is pretty common as these ANs are rare (although you would never know it from this site!). I complained of one-sided hearing loss and tinitus 3 years before. But can't turn back the clock.
Glad to hear that your wife is spoiling you and that you are getting the information you need to make a decision you are comfortable with. I really think that the diagnosis, making a decision and waiting for treatment is worst that the actual treatment and recovery, so you are on your way to getting past this.
All the best with the next steps.
Trish
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last week, i had restraining mask made, second MRi, and CT scan.
i went to different hospitol for the MRI - Hillcrest _ Tulsa. the tecs were great. they made me very comfortable and explained all aspects. they assigned a person to escort me from place to place and to make sure that i was taken care of.
i took a valium and this also helped. this was my first experience with such a happy pill. they work!!!
the hospitol got me through all tests quickly and no delays. vein puncture for dyes at MRI and CT.
now i wait for the schedule for the cyberknife. i called today to see when it would be ..... later this week or early next????? i have to admit my stomach is tied in knots .... and they did not call back today ..... i just want to get it done so i can get to feeling better . waiting is the worst?
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one thing that we as a support group should do is develop a diet to be followed while recovering and or being treated or waiting to be treated.
in the second consult with dr heaton, my wife asked about beating fatigue. the doc said to eat a balanced diet. my wife talked about weight watchers. teh doc recommended this.
woaaaaaa .... tonsils gets you ice cream. wisdom gets you milk shakes.
a brain gugger gets you a low cal diet???? what is wrong with this picture?????
i recommend that we institute an AN diet of peach cobbler, steak, french fries, fried cheeze sticks, etc.
what would your diet recommendations be?
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what would your diet recommendations be?
Haagen Daz ice cream, alternating between Chocolate and Coffee for variety. ;D
Feed your soul as well as your body; good spirits is a good antidote to fatigue.
Steve
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cyber knife --- 9:30 CSt DEC 4
OKLAHOMA CYBER KNIFE
WISH ME LUCK
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Haagen Daz sounds great to me - make mine Chocolate Chocolate Chip, please ;D
Carter -
good luck with the CK tomorrow. I'll be thinking about you.
Don't forget to update us.
Jan
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cyber knife --- 9:30 CSt DEC 4
OKLAHOMA CYBER KNIFE
WISH ME LUCK
You got it. Wishing the very best for you,
Steve
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thanks for the support and prayers.....
got call saying to move it out a half hour ....
waiting for treatement was the hardest time to date as the mind played games such as what if this or that. last night, my wife and i went out for a nice dinner. we talked a bit and just said lets get this over with .... i stopped reading the info on the internet - as i was content in my decision.
i took 3 tylonol pm's and slept all night.
set alarm early and went to work for a while ... i think that i will take a valium before the treatment? a terrible thing to say ... but i am afraid of what my mind will get into as i lay there for an hour???? just thinking .... i had rather be occupied right now.
set aside a couple of bob dylan discs to listen to
set aside a camera to ask techs to help record the event .... i almost want to write :filled with radaion in a very questioning manner ...... nerves are on edge i guess after all.
i have considered writing a blog to describe the various steps for others ... but i am afraid to ---a fraid that if i were to look for a job in the future - this could be used as a reason to disqualify me as the comapny would be afraid of future medical costs?????
please excuse my writing on it does help to make me think through the siuation rather than to let emotions rule.
i say my prayers and feel that i am doing the right thing. the little bast&(%%^rd will not win!
thanks
carter
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Carter,
I hope my good wishes for you are better late than never. Good luck today.
Wendy
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to appointment... tech met my wife and i
then dr heaton came to meet with us ..... said the AN was really large. it is now pressing the brain stem. she is worried about the location ... she has it scheduled for 3 treatments. we talked and she said she was unsure of hearing preservation over teh next 2 years.....
bottom line
break treatment to 5 rather than 3 ..... get me on steroids now ---- do first treatment on Friday..........
my mind is at all time low. i do not even know what to do or think?????
got script filled at pizza and waiting for valium to wear off so i go back to work.
my mind is fried$^%&$%&
carter
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Carter-
Oh, man - that's a setback. Try not to get discourage, though. Trust your docs to get this thing stopped in its tracks. And, eat lots of whatever treats you most like. And, don't be surprised if the steroids make you feel like an amped-up squirrell on a feeding frenzy.
keeping fingers and toes crossed for Friday. Hang in there!
Debbi
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i allow time for the valium to wear off and go to work. i expalin to all and the boss that the treatments will be delayed and why --- all of the time my stomach is in my mouth. trying hard to hold emotions back .... it is hard to verbalize about hearing to be lost, more risks, etc. i ended upwriting it out after i could not verbalize it to one person. others respected me enough to leave me alone until i talked
then my wife calls. oklahoma cyber knife calls her and wishes to move the treatments to next week.
i am torgued by this time ... and i am fallign into total confusion about what is actually happening. i now have to explain another change to everyone ... i am not sure that i am up to this.
i talk to the tech that is trying to reschedule, i talk to the nurse ..... i tell that i have lost all confidence at this point in time. i am asked to come in do the treatment and wait around till any valium wears off and then talk to the doctor. she can then explain everything ....and i will have a clear head.
i do not think so .... by then i am totally committed and have lost all options. treatment number 1 is complete ....geeze!!!!!@#%%^!#$^
so i start to write out my questions and prepare myself for the visit on Friday. and my mind is more full of thoughts ... here i had made up my mind that cyberknife is the way to go -- i was told that ii had an excellent chance of retaining hearing, low down time, low risks of complications,and had time on my side.
today, i have almost every positive ripped away from me.
i had had the prescription for steroids filled and a dose taken ... i hope that the valium did nto let my guard down enough to have caused myself some secondary issues?????
i am not sure if the tumor has grown rapidly or if the doctor missed this in the first visit? either way - itis time to get something done .....
i wrote the dr an email and asked for time to talk tommorrow before any treatment ... i have to get a full description of what my chances are of hearing retention, complications and decide if i can have enough confidence in the facility to continue. i wanted her to be able to address my deep concerns and give me straight answers.
i feel that i am totally scared now - what the heck should i do? start the entire discovery process over? live with doubts, or change my mind???? and the little bast)*(&rd is already on the brain stem.
sorry for rattling on - but muy mind is pure mush tight now and i am hoping that getting my thoughts down will help to make something clearer .... i need to do something to ease my mind!!!!!
i just said a prayer to God askingn for his help. i need it!
carter
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Oh, Carter, as I was reading your post I felt as if I was reliving my story. I found myself in a very similar situation just one week before my scheduled treatment. I had made my decision and felt confident after the consults I had, and then all of a sudden some doubts were raised by some of the doctors about the size (very similar to yours), the risks etc. I wasn't very concerned about my hearing (I have pretty much accepted the fact that most likely hearing will be gone at some point, after all this is what happens to most ANers). But I was scared to death about the possibility of swelling - being so borderline in size.
Like you felt that I might have to start the consultation process all over again, but I knew that it would be probably a useless waste of time, as I had already spent so much time researching this.
At the end, I went through with the treatment. I was in shock ... as if I had been diagnosed once again. I spent the next few weeks worrying and second guessing my self. But after all, although the GK team in Toronto is not super friendly (far from it - but it's the only one available in Ontario), it seems that they did a very good job. They actually used a slighly lower radiation dose, and they "repositioned' the frame twice, whatever that means. I didn't experience any swelling and haven't had any other issues up to now.
As you can see, I can really understand how you are feeling. If you feel the need to consult more, you should by all means do it. No matter what treatment you chose there are risks but the doctors will not really proceed with treatment if they think that it may put you in danger. Don't make any hasty decisions. At the end, it is your gut feeling that counts.
All the best,
Marianna
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Yah, that does not sound like fun, Carter. Extra ice cream for you after all this.
It sounds reasonable to me to go to 5 treatments with a larger AN, to spread the dose out a little more. I'm would think your risk of complications or hearing loss is still less than with surgery, even if it is not as as low as you would like. It certainly is upsetting, though, to have this kind of development at the last minute. I feel for you on that - and for Marianna, who it sounds like went through much the same thing.
I hope you get some good answers to your questions and are able to regain confidence in your treatment. Still wishing you the best,
Steve
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Carter, I will be thinking of you today, and hope you get all your questions answered. -- I think you are so brave to make as many decisions as you already have in a relatively short period of time.... Even with my recent diagnosis, i am still trying to absorb all the information (and i already knew the basics from my sister, who started going through the same thing just 6 months ago!) -- I will say a prayer for you now and wish you strength and courage in the coming days.
Take care and keep posting - those here on this forum and wonderful!
Sue
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it has gotten worse ....
i had slept very little last night - thinking and steroids????? i had decided that teh eharing was to be lost but cyber knife is still better than surgery.
when i arrived to oklahoma cyberknife, wife and i met with dr. i expressed my concerns using teh events to emphasize the points. about 1/2 way through dr heaton stops me and says that she had decided not to treat me based on the location - pressing into the stem. she said that she had reviewed the plan and as the tumor has a cystic portion, she is afraid of swelling.
i never could piece this together in total ... but she wanted to involve teh ent ---- i have seen him once and he did not even tell me about AN face to face. my GP is a good guy ---- but i remeber as i got my physical a month ago- i asked about cyber knife and AN ....... he said that he agreed to give it a try as he has seen too many paralized faces and demoed his impressions.... dr heaton called him and per her, he recommended thta i go see nuero surgeon that she is suggesting.
dr shwed images from plan and how it presses on the stem. she says that she is cautious in ging forward. i asked why we were ready to go testerday with 3 doses? she said that she talked to us before it started to give her reservations ..... but it was rescheduled?????? see why i can't get my arms around the asnwer.....
i just wanted teh hell out of there ----- nerves were now shot.
dr wanted us to wait until she talked to other drs .... she only talked to my GP --- we left and she said that she would let us know when she talked to nuero dr.
i went to dentist to get tooth fixed.
so i sit at a location where i was some 2 months ago. i tried to get on cyber knife support site ..... tried my pass word and i was told that it was no good .... tried to register and all concieveabel na,es were said to be in use ... it must be dead????
carter
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no one from dr keaton's office called with the referral .... between 10:30 to close of business
my wife wants me to be patient...
i have readied myself to get this taken care of and i just blew one more day off that was paid. they will get in short supply soon .....
sorry i keep going on......i had wanted to document the textbook case to help walk someone through the process --- that dreamis aslos gone.
carter
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i tried to get on cyber knife support site ..... tried my pass word and i was told that it was no good .... tried to register and all concieveabel na,es were said to be in use ... it must be dead????
carter
Have you tried the new cyber knife support site? It needs you to re-register all over again. Does anyone have the address handy?
Unfortunately though it seems to me that if a doctor is denying treatment, this is quite serious, since she obviously thinks that it may be dangerous. The doctors at the Cyber knife forum are honest and upfront, so getting a second opinion from them would be useful.
Marianna
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the webb address for teh cyberknife support is
http://www.cyberknife.com/memberprofile.aspx
i have tried to register mant times it says that every user name i select is in use..... i do not believe that the varied items thta i selected - over 10 are all in use ... their system is not working????
i too question that i may be "bad" but the dr scheduled and rescheduled it then backed out ..... why back out after sceduling t twice? it is a way to truely mess up teh patient's mind (me)
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Hi Carter,
The CK forum is up and working, I just logged in, and saw some new posts dated today. Not sure what difficulty you are having with a user name.
I realize this is a royal pain, but I think your CK doctor rescheduled to get more time to investigate, and probably consulted with other doctors about your case - maybe even Dr. Medbery. Once she had enough input, she decided against proceeding with treatment. I am sure it was not easy for her either, but I admire her for having the courage to call it off, if that is what needed to be done.
I hope you are able to get on the CK forum. Are you trying single word user names, like Carter1234, Carter1235, etc?
I also hope you hear from a neurosurgeon soon, and get some more information and advice on what to do next. It is no fun to have to mess around with it, but this is something that has to be done right, so in the long run it is for the better.
Steve
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We go out to eat Chinese food …. My fortune is that I will apply everything that I am now learning. Marilyn’s is that she has to be patient. I am not sure if I had ever seen one that made sense and here it is 2 that hit the nail on the head. Wow!!!
Dec 8
Call form Dr Nunn’s office – go to see other cyberknife on Tuesday --- day after today … ok – this is good.
No call from Dr heaton’s office
Dec 9
To st john’s cyberknife … meet with dr Frederick willison. He wants full story from birth to today. he looks at first mri and notes the size, etc ….. rather than to write it all out again – here is the letter that I sent to the folks that I email to keep them up to date …
I saw a new doctor yesterday. This would be Dr,. Willison of St. John hospital’s cyber knife team – Tulsa, Ok. He did a very good and thorough job of explaining the entire process to Marilyn and I.
steps:
1. consult with he and his group – done. He said that the tumor is definitely in the stem he has to be very careful to not zap this area too much. There will be spill over into the stem and we need to have a plan for this and he has to plan to minimize this. He said that the plan devised by the other doctor was good. (I had a screen print from the plan that was to go to the referral that she was sending me to. Later he said that he had been a partner in a practice with the other dr and that she was very talented….. but understood that I had an issue with the communications. At this time- Tuesday, we had not even heard back form her. I read into his speeches that I can not self medicate ---- no sticking my head in a microwave for 10 minutes with the power on high – this may not give the same results.
2. He is setting me up to talk to a neuron surgeon. I had heard this from the other dr and not what I wanted to hear …. He showed that this is part of his check list of required things. This is step 2 – not to be done as an after thought. He said that I can hear him explain the benefits of surgery so I can make an informed decision. I said that I had my mind made up … then he added that in case this goes south on us …. I will have be an existing patient for a very good neuron surgeon rather than the hospital trying to find a doctor on a rush basis. Immediate response from his group vs waiting for an appointment. This makes sense. He also added that he may sign off on the treatment plan for a second set of eyes. He needs a car payment …I can see him now ---- a sign on the street corner – will work for Lexus car payment…... I will never know if this is what the other dr was trying to do? Marilyn says that she thinks it was??????
3. the software between the 2 hospitals are not the same --- so I get to do the mask making, CT scan, and MRI over again …. I get to face the spirit sucking tunnel of doom (MRI). They set this up for Dec 18. at least there is valium!!!!!!
4. the doctor will take about a week to make the plan. Hopefully he is working Christmas week. I had hoped that I get treatment during the week of Christmas so I could have that long weekend to help rest. News year week, I only work 3 days ….. so I am hoping to hit this time frame.
5. treat …. 3 to 5 treatments --- he will tell us after the planning. Side affects were minimized. He nor the nurse refused to admit that the face mask leaves the patient with onion sack face…… the mask fits tight and leaves the impressions of the fibers in the skin…. As the mesh is about like an onion sack …. This affect is referred to onion sack face…. And it takes hours to go away. So going out to eat afterwards can be very awkward.
The nurse offered to have the radiation administered in a pattern so I can have a unique hair design --- some will fall out where it beams through. At least no one commented about there being little hair to loose ----- other than my wife (*^%&.
I have been reading the literature that they sent home with us … not one paper refers to a special diet of hamburgers, fries, steaks, and peach cobbler. I still contend that if a kid gets ice cream after having the tonsils removed, getting brain bugger zapped should deserve some special foods??????? At least this dr did not make comments about eating well balanced meals ….
I do solicit your help ….. how can I describe this entire process to make it sound better? Think about it …. If I went surgery, I could say yes, I had a hole drilled here, they shoved my brain to the side and I was under the knife for 6 to 12 hours …. Sounds pretty macho right?
If I went gamma knife, I could state that they screwed a metal plate to my face. They then did an mri and Ct scan while I was awake and the plate. Then they attached the plate to a big metal helmet and the radiation poured in through the holes in the helmet.
And I get to describe my treatment as this ---- they invited me down to the hospital to listen to some music – on a paid day off…. I am to bring my favorite cd. They will lay me on fancy bed . I can experience a robot move around and work as I listen to the music. The robot costs $5 million? And I am to be on some fine / legal drugs that will help me relax while they do this ….if I wear bell bottoms and a tie dye shirt, I can swear I went to a hippie reunion?????? I do not even have to put on a backless hospital gown at any time. I have only onion sack face to tell any grandchildren about and gripe as I did not get ice cream…. This does not even sound like a good story to be able to brag about around the camp fire in future years.
How would you like to tell your boss that you need time off to lie around, take some drugs, and listen to a little Dylan … I have to think of how I can word this.
My CD will Bob Dylan.
I am in a better mood!
Just to give you an update and to say thanks for the prayers/good wishes.
carter
ps…. When we got home on Tuesday, we found a phone message from the original cyberknife dr ‘s office stating that they had set up an appointment for me to see a surgeon. Marilyn let them know that we were going elsewhere…
marilyn is using the patience for me fortune cookie !!!!!!!!!!!!!!!!!!!
I did hear her say for the first time that she too was angry with Dr hawkins for not checking further as we are both well aware by now, the tumor is of a significant size.
dec 10
I share my feelings so others my gain soemthing and to umload my mind --- if the cookie says that i am to learn form everything – maybe others will also learn???? I can at least present the info. Just like phoenix mary did on the support web site. I wrote to her yesterday on her string of posts. She is having balance problems ---- I hope that his is not for me. But this lady deserves to get better. She has been my motivation and anchor that it will all work … but I will not wear the pirate suit that she describes --- not in public with a pair of capris and pirate shirt … sorry…
Got positive feedback from my letter out – people said that I had some humor again .. missing for several days. I had to give credit to many of the terms to former posts on the site.
Get to thinking about the dizziness and headaches… I never used to have headaches --- is it being sensitive – my imagination? But it is there!!!! The dizziness has been there – just associated with the blood pressure – not an AN.
Then I get an email that helps to point me the top neuron person in OKC … they can get me in through a relative if I wish to. This person does not write often so I am feeling good to see the note. I read the entire string of emails that are attached and here she is writing to tell the other person that if the cyberknife slips – I will die – then yikes. Here she is a nurse, writing to a medical researcher and this is there. My nerves are crushed for a moment. I now have a headache!!!! I forward it to marilyn and she reads it --- we talk and she puts me in a good mood --- she refers to the nurse’s bedside manner being equal to others that I had seen lately. I laugh and life goes on. The email was meant with love and crushed me!
I know wait for the appointment to be set up with the neuron dr and for the date to have the mri and cat CT redone. The trip continues …..
I am struggling with the idea of getting back to weight watchers as I have gained 14 pound of the 37 lost … stress is my excuse. I have to get my mind around this and get back on their program.
By this time- I hope that you are not bored to tears – this is dedicated to my heroes – the group that visits the site. The only thing that helps more is my buddies – baby bear and ugly bear -imaginary friends i balme my goofs on life ... my wife thinks that imam nuts?-- topped by my sweetie of over 35 years – to marilyn! Thanks to all.
Life is still good, I just have to remember that …. I like to deer hunt on 80 acres that we have had for 10 years. I have a daughter that is good. And I have marilyn.!!!!
ibet that i never get this story on the success list of the cyberknife support site!!!!!!!
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Hi Carter,
I'm glad to see you are in a better mood. A wordy mood, apparently, but better. :)
It sounds like you are back on track, anyway. Sure there is some risk, but that comes with the territory. The CK machines are very stable and the control systems are very precise. They also have fast automatic shut off if anything isn't right, so don't worry about slips.
For what it is worth, I had CK and didn't have balance problems or onion bag face. I know others have, so you will just have to wait and see what yours has in store for you, and hope for the best.
I think that if you tell people that you had Cyberknife for a brain tumor, they will be suitably impressed, regardless of how easy it may seem to go through it. You don't have to tell them about the Dylan CD. ;)
Best wishes,
Steve
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I find that saying "I had stereotactic radiosurgery", has a big impact ;D
Also just plain "radiation", makes people think that this is something very serious, as they associate it with cancer treatment.
Marianna
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the story contunes.....
got new mask made today.
to CT scan.... set up iv line for the ct and mri...... the mask felt loose ....no one listened ......the iv port would not work when the
'dye" was inserted. so set up in another spot ... this tiemthe tech listened and reset the mask
the arm is now swollen really large.
to mri .... this facilty rewuired changing out of street clothes... 1st of 3 that required it. they also did xrays as i had metal in eyses some 6 to 8 years sago.
the mri went on and on...... the valium wore off and i stood it until my iv arm could not take it any longer. the tech pulled me out and removed the iv port .... and i got through the remainder. when i got out i asked tech --- just how long was i in there? he said tht he had messed up and did a regualr mri, not one for cyber knife, so he had to start over. then said i would not be charged for it. geeeze.
to neuro surgeon .... fill out new sets of forms --- health history, etc. about 45 minutes late and it was blood pressure, weight, etc. then PA came in to do history review. finally Dr Patrick Han. He was impressive. went through surgery and cyberknife. recommended cyberknife. went through risks. he answered questions at lenght.
we signed consent forms for him to do it... he and dr Willison are to plan and get on the schedule.
only neg for neuro was that he sid my hearing in the AN ear is not all that good and if lost, i will adjust ..... i just want to hang on to what i can.... do others not get this if it is not them?
i want to get on with it!!!!!
carter
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Hang on, Carter, you are almost there! ;)
Nothing like a busy hospital to make you feel oh so special. :P
I hope you are able to get on with it soon!
Steve
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i am not patient ...
mri and ct scan were done on dec 18. was told that palnning would be done and on schedule in a week.
early dec visit said that it would be doen by end of year as deductables were brought up.
today, i was told that the neuro dr was on vacation until Jan 5. when he returns, gets a chance tol work on this, the ck will be scheduled.
before the AN was found, i had lost 37 pounds... in the past 2 months, i have gained 18 pounds back..... stress!!!!
stress is really rolling on ...
carter