ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ppearl214 on July 16, 2007, 08:49:42 pm
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Hi all,
It has been brought to my attention that there isn't enough info noting cyberknife radiosurgery here (possibly as a "main" thread topic as we know there is much written within threads), so.... I wanted to start this thread as a way to help inform others about CK treatment as a treatment option for AN's.
There is a patient support website for cyberknife info:
http://www.cyberknifesupport.org/forum/
As many of us here have had successful CK treatment on our AN's, my hope is that CK patients here can share their experiences (ie: how long ago was treatment, pre-treatment issues, post-treatment issues, any other thoughts you want to add, etc).....
So, for those that have had CK treatment on your AN... would you kindly share here your CK experiences so others can learn more about it?
thanks.
Phyl
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BTW, if anyone needs to know where a local CK treatment center is... you can go to
www.accuray.com
(the manufacturer of CK)
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My cyberknife experience was a very positive one with Stanford. First I had a ct scan, then I was called back 2 days later for the actual treatment. I lied on an open table in a big room, with a head rest. A mask of plastic/styromfoam like mesh is put around the face. I was able to blink and swallow quite well with my mask. Then the technician ask me to try not to move and keep relaxed. At Stanford they play some nice cds' to help keep your mind off of it. Then a medium size machine comes around and starts taking aim at your tumor from a variety of locations. My sessions lasted about 38 -40 minutes each for 3 sessions total. When I compare this experience to my yearly physical, getting my teeth clean or the balance test I took prior to the cyber knife treatment, by far the ck treatment was the easiest thing I have ever experienced for a medical procedure. After each treatment, I was given a steriod to prevent fluid build up or "Edema" in medical terms. I also loved the effects of the steriods (however, compared to others on the website I by far am in the minority on this issue!). Please send me a personal message and let me know if I can email you directly with questions or Personal message you back. I have my first follow up MRI August and will post my outcome at that time. However, going into this, the Stanford group was very realistic with me and said at the 6 month level they are look for some change, but nothing significant. I was also told that total tumor death could take 3-5 years. Please let me know if I can answer any questions. Take care, Annie
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Annie, you rawk! :) Thank you... and keeping fingers crossed that at your next appt, things are on track and all is heading to tumah' death! :)
Ok, my turn.... :)
I had my CK treatment approx 1-1/2 yrs ago. As my research informed me that typical CK treatment is usually 18-21Gy of radiation over 3 days, my drs noted they wanted to do 30Gy over 5 days. Of course I was leary on that as I had not heard of anyone that had a 5-day, 30Gy treatment.... but when they shared with me about hearing preservation, etc for that type of treatment plus my comfort level with this team, I agreed to the the course of recommended treatment.
So, just as Annie noted..... I had my mask made (currently collecting dust in the attic, although thinking of hanging it on the wall as a plant holder!) and off to begin my treatment. I brought music with me each day... took an Ativan before each treatment (ah, the "happy" pill) and actually slept my way through treatment. Like Annie.... it was a breeze. I was told to look for the "eye" during treatment when the CK machine moved over me....boy, that was too funny. Hard to not laugh in that mask, but definately giggled when I saw "it". I think the dentist drill is worse than CK treatment! After each treatment, my best friend and I went to lunch, went shopping, etc. The fatigue did set in on occassion and nothing a short nap couldn't cure. I was on Decadron (sterioids) for a couple of weeks to help with brain swelling/edema and that was taped off.
Went for my post treatment MRI and confirmed that there was no enhanced growth (mine was growing at steady/good speed), so no new growth worked for me. Went for my MRI again 8 months later and OMG, we saw a "rim enhanced lesion" with darkness beginning in the center of the AN.... ah, beginning stages of necrosis! :) My next one is also coming up and hoping that the bugger is showing more death... keeping all appendages crossed for this news.
My hearing preservation is on the money. It's interesting that folks note to me about FSR treatment, so I am assuming they speak of the Novalis system, with a course of treatment over an approx 25-30 day treatment. Now, CK is also FSR as FSR stands for "fractionated stereotactic radiation".... fractionated over a number of days. So, with my "FSR" of CK treatment, I have to agree with the dr's even more now that the 30Gy/5-day dose has worked wonders for my hearing preservation. I have had 3 hearing tests done since my treatment and my hearing remains at 100% of what it was at the time of treatment (my left ear was just below the "normal" range for hearing). So, from a hearing preservation standpoint, I can still hear in my AN ear.
I know individual results may vary in all forms of AN treatment. I have heard that some have had hearing diminish less than a year post treatment... I know of many that had CK that maintain their level of living as it was pre-treatment.... I have had some sharp head pain issues, some vertigo, balance issues... as I have a dual "head" diagnosis (AN and Chiari 1 Malformation), for me, it's difficult to tell which ailment is causing these issues as both have a tendency to have the same symptoms.
So, here I sit, just shy of the 1-1/2 yr mark for post treatment... and honestly, in regards to my AN and CK treatment... I'm doing great. I know I have been lucky in my decision and post-treatment progress. I know many that are also doing terrific and some having some issues... but I have to note that CK, for me, was a fantastic option and my hope is that what we share here will help others in their decision making process.
Yes, I'm a hint biased towards CK as I've done very well with this option..... but I also know that should things change down the road, I have my back up plan that I am comfortable..... I know CK can be done again if need be (Gawd forbid!).. and if we need to go microsurgical, I know that the surgical options being done are great as well.
For those that want to actually see my treatment in progress, you can click on my Frappr link below in my sig line and scroll down to the pictures on the bottom left. It shows the mask, it shows the table/CK machine and me flippin the bird to my AN! :)
Hope this helps.
Phyl
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About time I got back in here and contributed... Been absent for a while, taking a step back and all that.
Anyway, my CK experience. First of all et me say that if you want to read about it, I have a blog that goes from day of diagnosis until last last year. Send me a personal message and I'll give you the address.
In short, the experience of CK itself was excellent. I was diagnosed in July 03, saw a couple of neurosurgeons her in this country, and was put on wait and watch. Tumour was 22mm at the largest size. By the summer of 04 I was having increased symptoms, louder tinitus and numbness in my face. The doc at that moment told me to stick to my pre arranged appointment with him, which would have meant hanging around for another 5 months. I knew something was growing, so I decided to look into different options. Surgery was the only option offered here. So, I found CK and Stanford.
By October 04 I had made contact, sent MRIs and got approved for CK there. December 04 we travelled over and met with Dr Chang. The whole process took a week for me, as we had travelled so far, they condensed it a bit I think. First I had a consult with the usual tests, hearing and balance. Then a series of scans, both MRI and CT. Following day i had the mask fitting. Painless, no shaving of beard (one of the things I was wondering about) and not unpleasant. Weird to have something so tight on the face, but it was ok. Next day was the start of first treatment. Room is pleasant enough, subdued light and music. Ass it was Christmas, I brought my own music; who wants to listen to Christmas muzak while being zapped and restrained! I took a couple of shots of the facility and then got onto the bed. Mask was affixed to the machine holding the head firmly in place. Body wrap was put on too to keep me from moving. II was told not to move the head, or as little as possible. Not that it makes any difference, even swallowing will cause the CK to adjust position a little!
Session lasted 40 minutes. No sensation, no visual effect. Only thing was a 'onion bag' face once the mask gets taken off. That lasted for about 30 minutes before the impression of the mask faded. The other effect was an alarming tendency to go from a bright red face to a 'blanched almond' look in a very short space of time. Not serious or unpleasant. They also gave two tiny pills, steroids to avoid edema.
Same routine for the three sessions. Three days, and by Friday 10 December I was done. Immediate effect were from steroids. Bad sleeping, too much energy, constipation like never before. But, we had a great holiday in california, with lots of driving around for the best part of 3 weeks.
Headed home in early january. Went back to work, but I shouldn't have. I had extreme fatigue and some cognitive issues for a god six to eight months. I functioned at a reduced rate, just managed to hold my job with a lot of understanding from my employer. It wasn't the best period of my life, but I managed. Not everybody has that kind of problem though.
Tumour started to show signs of necrosis by month 6 MRI, hearing went down by 5%, no swelling. By month 12 there was 10-15% swelling, worse tinitus and hearing had remained the same. I felt a lot better and started regaining some of my energy. By moth 18 swelling had stabilised and so did symptoms. At the two year mark the tumour had started to shrink back to the pre-treatment size, and a bit smaller in fact. Now, they left the next MRI session for a year, so I'm coming up to three years in December.
My energy levels are good again, in fact better than they have been for about 10 years. No problem doing anything really. I have to watch that i don't do too much or I have a fatigue attack and can nap anywhere at any time. Otherwise, it has been a perfect experience, a rather difficult recovery initially, and now I feel better than I have for a very long time! Only effects are from tinitus and hearing loss.
Forgot to mention, An is now getting as dead as the dodo, necrosis is continuing as of last MRI in Dec 06.
Hope this helps too. If you want any more info, send me a personal message.
Lorenzo
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Inspired by my fellow CK ANers (Phil, Lorenzo, Annie, howdy!)...
My AN was discovered 1 year ago after having some muffling of hearing and slight hissing sound for 9 months. My ENT sent me for an MRI and voila - you have a "growth" in your brain!! I found this forum, CK, my mentor Mark, Dr. Medbery and Dr. Spunberg on the CK Support Group Forum and Dr. Chang (in person) at Stanford all within 1 week from the day I found out about my AN. It was a roller coaster ride for about 1 month - from thinking I was going to die (first 2 days) to CK treatment at Stanford (1 month later)! Since I started having some intermittent sharp nerve pain 2 weeks after I found out about my AN (I guess the AN was pushing against some nerve), I decided I did not want to wait. >:(
The treatment was a breeze. Best medical (or non-medical as it felt like I was going to a spa treatment :D) experience I had. Day 1: I had CT. Day 2 - 4: 30 - 45 mins of CK treatment with my favorite music from my own CDs!! They gave me a little purple pill after each treatment. I was able to go sightseeing, sleep well, eat well the whole week. The entire Stanford medical team is top notch. I could not have asked for anyone better. Dr. Adler, Dr. Chang, Dr. Soltys are my heroes. Larry, Elizabeth are my angels. They are the best :D!!!
I have no additional residual side effects the first 3 months post CK. 3-6 months later, I started having minor intermittent numbness, louder tinnitus, lower hearing, occasional big fatigue. I think the swelling of the AN or may be some collateral damage to the surrounding tissues are the culprits. I don't have the sharp pain and fatigue any more but still have the louder tinnitus, some numbness and hearing degradation - they are not that bad overall. In Dr. Chang's words, my symptoms are "mild" relatively. 6 month post-CK MRI showed signs of necrosis with no change in tumor size. My 1 year post-CK MRI will be coming up in August (in 2 weeks). I don't expect the tumor to be smaller nor my hearing better given the symptoms. However, I am still glad that I chose CK considering the alternative (microsurgery)!! :(
Looking back: I never took a day off because of my AN except the treatment week (kind of like a mini-vacation at the Bay Area). I did not take any medication for AN either. I continue to work full time and my job requires me to take long haul flights every month or so (San Diego to India was the longest trip after CK) and flying has no adverse effect on me. So, life is the same but now I could use the excuses like "I have a brain tumor so don't bother me!!" ;)
So, you see, I am lucky to have found this forum and there is great friendship here. This is a family! You guide me along my AN journey and in my case, CK works for me. As Dr. Soltys said "there is no guarantee" but I hope for the best and that I will be thrilled if I can just follow the footsteps of Lorenzo, Mark, Phil, Annie, etc. I know I will be OK ;D!!!
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Thought I would chime in! I agree with everyone who has posted regarding CK. The process for and actual treatment were easy. The Research and chain of Doctors before discovering the AN was the hardest part. I had my CK at Stanford in October '06 and my 6 mo. follow-up in April did show signs of Tumor death. I still have my symtoms, Tinnitus, balance, head and neck pain.I've started seeing Headache specialist and they were improving until I flew to Southern California last week. The flight down was fine, but the flight back was difficult. I think the pilot has A.D.D.; I appreciate that he was saving time but the quick decent caused the worst ear pain I have ever experienced ( close to child birth!!!). That was on Saturday and my ear and head pain have not settled down. That was the first time to fly since discovering the AN. The balance, neck and head pain improved after seeing the specialist. I see her again today and hope that the Airplane experience did not do irreparable damage. Have not missed any work days or change my lifestyle to accomodate my symtoms but I do have to manage them. I don't think I would have done this well with open surgery. I welcome a private e-mail if you have any questions or would like more information about my experience.
Best Wishes,
Bev
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thank you all, SO very much, for sharing your personal experiences with everyone. My hope is that this info is helpful for those in the decision making process, should CK be considered as a treatment option.
I have to note that I was watching the local Boston TV ABC-affiliate and saw a TV ad for the CK Unit at Beth Israel/Deaconess, here in town. Well, as you all know, I have a bit of a kin-ship with them and the ad noted to go to the TV station website for info....
so, I went to the website and there is an absolute fantastic short video of CK at BI. It's got a terrific interview with Dr. Mehatevan (my fave radio-oncologist), my fave Oncology Nurse (Terry Barden)... and a cancer patient working with Shelly, the CK tech, stepping him through everything. It shows bits of his treatment from start to finish, with interviews of him and his wife.
Overall, the video gives terrific insight to a CK treatment room, what the CK machine looks like in action, how the technology works, and the support of all CK treatment teams.
Here is the link to the video:
http://www.thebostonchannel.com/bethisrael/index.html
I hope you all find it informative.....just wanted to share it with you all.
Phyl
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Thanks Phyll for posting this. It is always heartening to see that modern medicine is making strides forward in treatments. I found this particularly poignant as I lost my godfather in the early 80's to pancreatic cancer. From diagnosis to his passing was not a long time. It was hard. I'm lucky today in that my summer retreat was built by him before he built another down the way, and so i have many good memories close at hand whenever i am there. Pancreatic cancer was a diiffficult thing more than 25 yrs ago and this shows how far we have come for me, personally. I wish this (CK) had been available then....
It's always good to be reminded that medicine /treatments are moving forward in leaps and bounds. The same is true for Ans from 40 -100 and more yrs ago to now .... look at us... here we are, discussing pros and cons of treatment and choices... that's good! :)
windsong
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Thank you ppearl for starting this thread. It is coming a little too late for me. I went with FSR as my choice because I wasn't sure where was best to go for CK treatments. I had a time frame set for when I wanted treatments done and did not know enough about CK to go that route. For me, FSR seemed better than GK and surgery so I went with FSR. CK sounds promising though. Like House is known in California, maybe there is a CK clinic which will become well-known because of this web site. Time will tell.
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I'm glad the link.. and this thread is helpful... that was my goal in posting it and hoping others that have had CK will also chime in as well.
Phyl
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My new ENT sounded extremely stressed when he called to tell me that my MRI showed a 15mm AN, and that I was to make an appointment at House ASAP. The ENT kept saying "it's benign"....I kept hearing "it's a brain tumor".
It didn't take me long to find this forum, thankfully. By the time I had my consultation at HEI (where they recommended surgery) I had already begun researching other options - FSR, GK, CK. I had ruled out W&W because my equilibrium seemed worse every week. I chose CK at Stanford based on several factors - the medical school's reputation, Dr. Chang's experience, the fact that treatment would be spread over 3 days, and the good statistics for success. I felt hugely relieved the instant I made my decision. I looked forward to my treatment with enthusiasm instead of apprehension.
I make this point because normally I'm a person who's always second-guessing myself - waffling, fretting, seeking input from others to validate my choices. But CyberKnife felt so RIGHT for me personally, that I had no doubts at all. Nor did I have a problem defending it, even though many friends and most of my doctors thought I was crazy. "Don't you want it OUT of there?" they'd ask, even those who were aware of the potential complications associated with microsurgery. And I do acknowledge that getting rid of the thing certainly has to be an important consideration for those facing this decision-making process. For me it was an easy call, because all I really cared about was arresting its growth.
And CK appears to be doing exactly that - I'm almost 2 years post-op, and though my 6-month MRI showed the expected swelling, in the 12-month and 18-month studies it's back to pre-op size, with necrosing. It's been exactly 2 years since my diagnosis. Two years ago I sat at this keyboard in a panic, frantically searching for answers, and I found them right here.
Thank you, all of you.
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If for some reason, God Forbid, that my GK backfires somehow, I would certainly look into CK since there is now that option right here in my town of Vancouver, WA. My doctor is using the CK machine and he could certainly tell me if I could have that done instead of GK. Hopefully that won't be an issue.....but who knows?
Sue in Vancouver USA
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aardvark, thank you.. and continued wellness to you! :)
Sue, praying there is no Gawd-Forbid..... since you and I had treatment at approximately the same time, I'm side-by-side with you and know you are going to do great! :)
Thanks all for continuing to share your experiences. I do hope newbies that are researching find this helpful.
Phyl
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I do hope newbies that are researching find this helpful.
As a practicing newbie, I certainly do. I am also finding that the CK docs are very accessible, something that gives me comfort and confidence.
Your link for the CyberKnife support forum is very useful, since there are practicing doctors there that answer questions every day.
http://www.cyberknifesupport.org/forum/
Plus, that site also has a page with descriptions of several of the participating doctors, two of whom have email addresses, so you can contact them directly, and arrange for a review of your MRI and tests.
http://www.cyberknifesupport.org/about_the_doctors.html
I have been in contact with Dr. Chang at Stanford, and he has been very helpful. I am a little worried because he seems to respond to emails at any time, weekends included. Dedication is good, but I hope he also gets a little rest now and then...
Thanks for setting up the thread.
Steve
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Steve -
When I first wrote to Dr. Chang 2 years ago to ask if he thought I qualified for CK, he replied within 24 hours - on a weekend. Though I had already made up my mind to go to Stanford, his accessibility was the frosting on the cake.
It was nice to read that he hasn't changed his MO.
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I am a 70 year old newbie, diagnosed 2-6-07 with a1cm AN. My six month MRI shows growth to 1.6cm. At my age this should not have happened. I am going to Emory for radiation soon, too old for surgery. Thanks for listening to me.
P Palmer
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That's the way how all my Stanford team works - very email accessible. Never had a medical team that would do that in my life!! They are still responding to my emails within 24 hours typically!
Mary
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I've had very prompt email responses from the radiation oncologist at CK in Jacksonville, FL. This center opened in 12/06, and has done 4 ANs. However, this physician completed her residency at Stanford. I hope to travel to FL for consults soon. Will post an update afterward.
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It is not uncommon for a lot of the new CK centers to have a "Stanford connection", either docs who have rotated through as part of their basic training or those who actually were part of the CK treatment planning team there. I don't have any specific knowledge, but am aware of 5-6 centers where that exists. While CK is certainly becoming much more available in the last few years ( there were around 10-12 nationally when I was treated in 2001 and I recently heard the number is closer to 70 today), evaluating the team experience of a center should also factor in use of other machines. For example, Many teams have years of time with GK or other machines before the CK. Total number of AN's they treated by radiosurgery is more meaningful than the number using CK alone.
Mark
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Thanks for the info. I'll keep that in mind. Evidently their radiation oncology practice works with the GK center in Jacksonville as well as the CK. I've already consulted locally regarding GK but am leaning more toward CK. Last I heard, the CK center in SC won't open until possibly 12/07.
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Hi P....
welcome! I didn't want you think that this was missed. It's good to see you here. You are in great hands at Emory (former Atlanta-ite here! Family still there) and we are all here for you.
Good to see you here... and again, welcome!
Another "P" :)
(Phyl)
I am a 70 year old newbie, diagnosed 2-6-07 with a1cm AN. My six month MRI shows growth to 1.6cm. At my age this should not have happened. I am going to Emory for radiation soon, too old for surgery. Thanks for listening to me.
P Palmer
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P. Palmer, you snuck in under the radar, but watchful Phyl noticed. Not much gets past her. I guess you might think an AN would not grow at 70, but at this point, nothing much about ANs surprises me, they seem capable of all sorts of mischief. I am headed for radiation myself in September, radiation is doing well these days and is a good choice for many.
Best wishes, Steve
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P. Palmer, you snuck in under the radar, but watchful Phyl noticed. Not much gets past her. I guess you might think an AN would not grow at 70, but at this point, nothing much about ANs surprises me, they seem capable of all sorts of mischief. I am headed for radiation myself in September, radiation is doing well these days and is a good choice for many.
Best wishes, Steve
I watch the radar carefully... :)
Phyl
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Sorry I snuck under the wire but computers are sometimes difficult for older people. I tried to correspond correct but you have made it most difficult for this mind.
I am going to Emory for the special MRI on 9-4-07 and R. Surgery at 6:15 on 9-6-07 with Dr. Jeffery Olson, Neurosurgeon and Dr. Ian Crocker, Radio oncologist. I have great faith in both of them and feel I am doing the best I can for my age.
Forgive me for not responding correctly. I enjoy all your opinions and comments.
Phoebe Palmers
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I need to make a correction. The procudure is sterotactic radiosurgery, one time. It is ok to get older if you can admit you are not perfect. Is anyone with an AN perfect?
Phoebe Palmer not with and s
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Phoebe,
You posted just fine. Sneaking in is no problem, everyone does that. If you want to start your own topic, just pick Radiation/Radiosurgery, then click the New Topic button (its on the far right side). But posting here will work too, and no apologies are needed. No one with an AN is perfect - and for that matter, no one else is either.
My radiation treatment starts the week after yours. It makes me a little nervous, but I have faith too, and that is the most important thing. It will work out well in the end.
Steve
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This is a great thread for CK information.
I'm trying to see if CK is a better option than surgery for me. I have few questions that someone may be able to answer.
1. In regard to long term status, do we know of someone who had CK at the earliest time when CK was just introduced and their current statuses?
2. Currently my symptoms include: some loss of balance, facial switchings, tinnitus and loss of lots of hearing on the left ear. With CK, will these symptoms go away and how long will that happen? I think I'm willing to accept the loss of hearing but the facial numbness and twitching are hard to take.
I'll be talking to Dr. Chang soon but would like to find out from yourself since you've experienced them yourselves.
Thanks very much.
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May be this is not the forum to ask, but since there are so many here that had CK, I have to ask.
1. I saw mentioning of future options if the first CK did not work. Do we know if the procedure (CK, Microsurgery, etc...) would be more difficutl the second time around? Are these verifiable facts?
2. If my AN is currently bothering my facial or sensor nerves and some loss of balance, after the CK treatments, will these effects be worsened?
Thanks.
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Hi, bpham -
At the time of my diagnosis I had balance problems, and some difficulty filtering sounds in my AN ear. Tinnitus was becoming more noticeable (I have it in both ears) and memory was declining. I had no facial tics or numbness, and no eye issues.
I'm now almost 2 years post-CK, still with the same symptoms, but with better coping mechanisms. I know now that stress makes my tinnitus much worse, and that fatigue really affects my balance, so I try to be aware of potential stressors before they blindside me.
I chose CK in order to stop the growth of my tumor before my symptoms grew worse, figuring that I could deal with the status quo indefinitely, if that was to be the result. I didn't expect my symptoms to improve, and they haven't. But that's okay - I achieved what I set out to do.
You're asking really good questions. I'm confident that Dr. Chang will be able to answer them for you. (I freely admit to being prejudiced, lol)
Wishing you all the best with your research -
aa
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This is a great thread for CK information.
I'm trying to see if CK is a better option than surgery for me. I have few questions that someone may be able to answer.
1. In regard to long term status, do we know of someone who had CK at the earliest time when CK was just introduced and their current statuses?
2. Currently my symptoms include: some loss of balance, facial switchings, tinnitus and loss of lots of hearing on the left ear. With CK, will these symptoms go away and how long will that happen? I think I'm willing to accept the loss of hearing but the facial numbness and twitching are hard to take.
I'll be talking to Dr. Chang soon but would like to find out from yourself since you've experienced them yourselves.
Thanks very much.
Hi bham,
1. CK has been around for over 10 years.....Mark, who is on this site, is 6 yrs post CK (the longest term CK patient that I know). He is a tremendous help to many here, esp. to discuss CK long term. He is very well versed in many AN treatment protocols and is a true backbone to many here that seek out CK information *accepts money behind back from Mark for the kind words noted* ;) You can see many of his posts here where he shares his long term experience with his AN/CK journey.
2. Many of the symptoms may wax/wane.... "individual results may vary", as you know... some note enhanced, some note decreased. In my case, for the most part, mine decreased but again, everyone is different.
You are in fabulous hands with Dr. Chang, if this is the route you decide... he's top notch and one of the best.....
Hang in there during this decision making time... we're here to help you through it, regardless of what you decide. We're AN'ers and we're here for you!
Phyl
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Hi again bpham.
I am reminded of my first post on this forum, which I made after browsing quite a few of the other posts. One of my questions was:
"It seems to me that the treatments address the medical concerns, mainly not having a neuroma grow enough to squish the brain stem or paralyze the face, but are not particularly good at addressing the symptoms, meaning the hearing loss, pressure sensation, tinnitus, etc. The post-treatment experiences reported by many don't sound much better than the symptoms I have now. Is that a fair assessment?"
The answers I got seemed to agree that treatment can stop development of symptoms, but does not often do much to reduce them. I think general fatigue can diminish, and balance issues can be resolved, either by surgery, where the bad balance nerve is cut, or by post treatment therapy to help retrain the brain, or both. People do feel better, but they almost always keep some reminders of their AN.
Although it sounds a little depressing, my impression is that many end up feeling a lot better, and just get used to whatever they wind up with. Once it stops changing around every day, it all becomes more acceptable.
Stick with it, you are getting closer every day...
Steve
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Steve.
Will the symptoms get better with time in most cases though and how many percent will get better since the tumor is supposed to shrink right, do we know?
Thanks for the reply.
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*bump for those recently diagnosed interested in CK info/experiences*
Phyl
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*bump*
Lots of inquiries lately about CK, so bumping this back up.
Phyl
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Hello, I'm a newbie with a 1.3cm x 8mm x 8mm left sided AN. I've been so overwhelmed trying to decide which treatment option to go with. I've seen Dr. Fayad and Dr. Schwartz (neurosurgeon) at the House Ear Clinic. Although my hearing is perfect, Dr. Schwartz is recommending the translab (and left ear deafness) versus middle fossa as it is less risky to the facial nerve. His concern is that since I have very poor vision in my right eye he would rather be cautious in order to assure avoidance of facial nerve problems and possible negative effects to my good left eye post surgery. I've never had surgery and am terrified of it due to another medical problem which doctors have been unable to diagnose. I am now considering radiation options.
For those of you out there who chose Cyberknife over Gamma Knife, what were the specific factors that swayed you toward Cyberknife? House does Gamma Knife at Good Samaritan hospital and it would be the most convenient for me in terms of location, but it appears that so many of you who post chose Cyberknife instead.
Stanford seems to be the destination of choice in California for many of you opting for Cyberknife. There are other centers closer to me in Los Angeles (USC, San Diego). Wouldn't they have to be competent as well?
Any feedback is much appreciated. I've been lurking on this website for weeks now and finally had the nerve to post.
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For those of you out there who chose Cyberknife over Gamma Knife, what were the specific factors that swayed you toward Cyberknife? House does Gamma Knife at Good Samaritan hospital and it would be the most convenient for me in terms of location, but it appears that so many of you who post chose Cyberknife instead.
Stanford seems to be the destination of choice in California for many of you opting for Cyberknife. There are other centers closer to me in Los Angeles (USC, San Diego). Wouldn't they have to be competent as well?
Anna,
Both GK and CK are good radiosurgery machine choices. The case for preferring CK generally revolves around 2 issues:
1) CK achieves slightly better accuracy than GK but uses a mask vs. the metal halo that is screwed into the skull with GK
2) Because it doesn't require the halo, CK can do treatment over 3-5 days ( fractions) which generally is reported to improve hearing preservation results ( 75% vs 60-65%)
Stanford is generally preferred because it is where the CK was developed and where the most experienced team is, specific to AN's as well as other issues. However, any practice that has a CK machine goes through extensive machine training at Stanford or one of the other more experienced facilities. additionally most docs moving to CK have used GK for years and have treated a lot of AN's radiosurgically in the past. In the eyes of most radiosurgeons AN's are on the easier side of the scale of most things they treatment plan for. So while I don't know a lot about SD or USC, I would generally be comfortable they would be qualified, but ulitmately you have to feel comfortable with the physcian treating you. If you do decide on GK , I would personally not have it done at HEI as I do not believe they do a lot of them or are particularly focused on that treatment option as opposed to surgery. At least in 7 years I think I've heard of one person that had GK there.
Mark
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Early tomorrow morning, I am going for my 2nd MRI afyer my CyberKnife procedure in January 2007.
I just found out that the valium pills I'll need tomorrow had expired in October of 2007.
I definitely do not have time to ask my doctor to prescribe a new one for me in time for the MRI.
Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?
Without the aid of valium pills tomorrow, I do not think I will be able to "survive" the closed chamber effect.
Thank you for your kind attention.
an0806
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Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?
an0806
Call your pharmacy - the pharmacist should be able to tell you.
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Mark,
Thank you so much for your reply. It means so much to me right now.
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Do you think that valium pills (2mg) are totally useless (or harmful) expired for only 6 months ?
an0806
Call your pharmacy - the pharmacist should be able to tell you.
agreed. PapaPearl (my dad) is a pharmacist and has shared with me in the past that some pills are still effective (maybe not fully, but still carry some efficacy properties) 6 mos post expiration date, but your local pharmacist can confirm.
Good luck and wishes for a wonderful MRI turnout! Keep that in mind as it may help "curb the edge" of nervousness during the exam.
Anna, welcome! Glad Mark was able to help chime in with a response for you (he's good about these things) and hoping you are finding the info here that you seek.
Best wishes,
Phyl
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leapyrtwins and phyl,
Thanks for your knid word of encouragement. I already feel better !
an0806
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First off, Happy B Day PPPPPEARL!!
Glad to hear the good news.
I am 6 mos post treatment CK for something similar to an AN.....originally diagonosed as possible AN, then found out later to be similar....but different location etc..
So far my results are excellent!, the tumor is showing signs of death,,,,I have had little to no effects from cyber...I have recently experienced mild hair loss and graying which under normal circumstance would be due to age, but alas, gray hair does not genetically run in my family...strange but true...and it is getting quite thin,,,,I have posted some questions to the Drs on the cyber site, but it may also be due to antibiotics..the Drs do not think at this point that the thinning all over is due to cyber...otherwise I have nothing but good news.
The treatment compared to surgery was a breeze, and I chose cyber for two primary reasons...the general accuracy of the machine and NO HEAD SCREWS.....
Head screws may seem like a minor point, but I had real problems from them due to surgery and did not want to experience it again...when researching the various Stereotactic types of radiation, the cyber was the most effective and least invasive in comparison to the time of treatment and what was involved. It was in fact a no brainer, and so far, I am very happy I went that route. I went to the Palm Beach Fl Center, and overall had a great experience considering the circumstances.
I will certainly keep posting my continued death of the tumor.
Ceeceek
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ceecee, it twas my bday?!?! :o thank you for the belated wishes. Saw your post on the CK board to the drs about the hair loss. As a former (but still licensed cosmetologist), I can share many factors can create the thinning you are experiencing. Anything from stress, medications, shock to the system, hormonal changes, foods, heat/cold, etc can all wreck havoc with our hair. Try slight, circular scalp massage in the affected area... heat helps as well... as well as proper diet. As for the gray... well, I own stock in MissClairol but I'm hoping you don't make me rich in that regard! hang tough! :) Phyl
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Thanks for the advice...I am now thinking it was from antibiotics.....they are very hard on me...the gray..I dont know..hesitate to dye as my hair grows super super fast..not complaining but hate that root line effect.....Unsure why it would go gray...
normally I know at my age.(43), I would already have gray, but for real, it does not typically run in my family till late 80's, so I am hoping temperary....it was my only solice for having very baby fine mouse brown hair my whole life was that it wouldnt go gray..auughhhhhh...t'oh well..and happy b day again..glad you made it..
Seems like your progress is going good how about your other condition? I knew you were going for follow up on that recently but didnt see where you posted....
I have been somewhat unsocial...taking a break from school...trying to get a new job....yuck....and will start my masters in April..what was I thinking.......
Ceecee
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Hey Girls:
Stanford told me to expect some hair loss, but very minor. Also grey started to hit me at about 40. First silver eyebrow about at 43....however this does run in my family! CEECEE babe- starting a masters program AYAYAYA- if that doesn't cause hair loss nothing else will! I am using a semi permanent shampoo- walnut. It makes my hair more shiny and doesn't over all the grey, especially the sideburns but I like it and I get compliments on my hair so I guess its working.
Oh and thanks for the antibiotic tip. Good to know.
Okay girls and guys- take care, annie belated birthday greetings Pearly Girl Phyl!
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ANNIE!!!!!!!!!!!!!! :) thanks for the wishes... *ahem*... my bday was 2 mos ago... ;) Huggles and think of the gray hairs this way... we most certainly earned them in this journey... so, let 'em shine! :)
Phyl
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*bump*
we've had recent inquiries for CK info... and many that need to update their CK experiences here (can you say HELLLLOOOOO STEVE? :) )
Looking forward to others adding to this thread to help others in their treatment options research.
Phyl
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I have mentioned doing this a few times, and I thought I had better follow through. This is my CK story, start to finish. It is not typical, because no AN story is typical; it is just one case, and one outcome. And, as with all ANs, the story is never really over; even twenty years later, things can change. Since it is a long post, I added some pictures too.
Pre-diagnosis:
February, 2007: A bad cold that seems to get up into my ear. Ear pressure, a plugged up feeling, and I notice that my hearing really is weak on the left side. A hearing test six months earlier said the same thing, but it didn't really seem noticeable until now. After four weeks of this or so, I go to see the doctor. The nurse practitioner puts me on decongestants.
March, 2007: Still plugged up, and back to the doctor. This time the doctor himself prescribes some antibiotics, a brief round of steroids, and an antihistamine. We are going to get that middle ear to unplug, by gum. When this doesn't work, I start a regimen of steroid nasal spray, plus saline nose washes, plus some more antihistamine/decongestant stuff.
May, 2007: This is still not working, my ear is still plugged, I still can't hear properly. I go back to the doctor, who refers me to an ENT. I spend most of my time at the ENT's office doing a complete audiology exam. Besides the usual hearing test, they put a sound source against the base of my skull, so the sound will bypass the middle ear and go directly to the inner ear. When the ENT sees the write up, she has this to say: 1. My, what an interesting hearing test you have; 2. Start antiviral medication and heavy steroid medication, in case it is a virus; 3. Get an MRI just in case. When I ask about the cost of an MRI, she says it doesn't matter, I have to have one.
Diagnosis:
June 5, 2007: MRI. June 12, 2007: I receive "the call." The ENT says, in order: 1. You can stop the antiviral and steroid medications. 2. It is benign. 3. It is a small tumor on your hearing nerve. I say thanks for getting the word benign in early, and what do I do now? She refers me to another ENT/neurotologist, who can do skull base surgery. I leave thinking it will be a small operation, perhaps as an outpatient in the office, and go to see the ENT.
June 25, 2007: The next ENT suggests that wait and watch may lead to total loss of hearing, explains the surgery options, and also suggests investigating radiation. He also tells me I can get a copy of the MRI on CD from the MRI lab, which I do. We schedule another appointment. The radiologist's report shows the tumor as 8 mm, or 0.8 cm, in size; my hearing loss is about 50-60 db, with 85% word recognition.
July 8, 2007: I make my first post on the ANA forum. Oh my, how glad I am I found this forum! Things would have turned out so differently without it. Soon I am gaining a more realistic picture of surgery, learning about radiation options, and making friends with other AN patients at the same time. I go on several appointments in the weeks that follow, including one to a vestibular lab for ENG and ABR testing. It becomes clear to me that if I watch I wait, I risk losing my hearing, and that acting when the AN is small has some advantages. I am still on the fence about radiation versus surgery. I learn about CK, and in particular about CK at Stanford. I send Dr. Chang an email, and he replies on a Saturday, indicating that I would be a good candidate for CK. I send him a copy of the MRI and hearing test.
(http://stevegerrard.home.comcast.net/mri-spg.jpg)
Decision:
I also manage to calm down enough to do other things, including a short family vacation, and a business trip in August to Colorado. During one of the fascinating meetings in Colorado, I am doodling on my note pad, and start making a list. Left side, middle fossa surgery. Right side, CK radiation. I make entries for things like: Recovery time. Likelihood of preserving hearing. Likelihood of facial nerve or chronic headache issues. How long before it is over.
Oddly enough, though it was not my intent, that was the day I decided. Radiation would take longer to finish up; the post treatment effects can drag on for 6 to 18 months. But the initial recovery time would be shorter, the chance of preserving hearing would be better, and the risk of chronic side effects would be lower. When I was flying home from Colorado, I realized that I had decided on CK radiation treatment.
I called Stanford in August. Scarlett White, their appointment manager, called my insurance company. After I had faxed both parties copies of all the reports, they worked out the details. About a week later, I got a call that the procedure was approved, and I was set for September 10.
Others will tell you what a relief it is to make the decision and be on your way. I was impressed with Dr. Chang, I felt I had done good research on radiation treatment and Cyberknife, and I felt that I had done all I could and made the best choice for me. The actual outcome was now out of my hands.
Treatment:
September 9, 2007: Flew to San Francisco, where fortunately I could stay with a friend the whole week. Monday, I drove down to Palo Alto, and met Dr. Chang and Dr. Gibbs, plus a platoon of interns, residents, and technicians. We all had a good chat, and discussed everything about the treatment. Dr. Gibbs looked me in the eye and said she would be happy to offer me CK radiation treatment for my AN. I said yes, I didn't fly down here just to talk about it. I guess that is part of the protocol. I drove home in the afternoon.
Tuesday I drove down early. This was the hardest day, because they asked me not to have morning coffee before all the scans. I was a little grumpy about that. It seemed like I went all over the hospital that day, but did get a CAT scan and an MRI before the day was through. Chang and Gibbs put the scan data into their computers, and by that afternoon, had a treatment plan worked out. Dr. Gibbs showed me on one of the images the separation between the "hot zone" of radiation and my cochlea (hearing organ). Looked good to me. I also met Larry, who fitted me up with a mesh mask. The stage was set.
Wednesday, I drove down again, this time about noon. Larry and Eileen fussed over me on the table, making sure my legs were comfortable, and the mask was positioned just so, and that my CD was in the machine. Then they went outside and closed the door. Over the speaker, they said they were doing a few more checks. Then Eileen said "we are ready to begin." I said "Okay" - what else could I say at that point? I lay still for 45 minutes, listening to the hum of the machine as it moved around over my head. Peeking out does not harm your eyes, but if you catch it staring right back at you, it can startle you. I preferred eyes closed. Afterwards, a doctor presented me with a small blue pill, Decadron, and a paper cup of water. Then I drove back to San Francisco.
Thursday and Friday were nearly identical to Wednesday. On Thursday, Eileen claimed that I moved, and stopped the machine for a bit. I swear I didn't move, but I didn't protest. On Friday, after the last one, I shook hands with Dr. Gibbs, said good bye, and that was it. On Saturday, my friend and I did an easy hike on Mt. Tamalpai, and on Sunday I flew back to Portland.
(http://stevegerrard.home.comcast.net/TheMask.jpg) (http://home.comcast.net/~stevegerrard/ck.jpg)
Outcome:
December 2007 was not a good month for me. Around Christmas, a bad cold got worse, and I experienced swelling pressure in my AN ear. I was quite miserable, and stayed home and mostly in bed right through Christmas. (I did manage to write a nice Christmas poem, though). I almost called my ENT several times, to ask for steroids to try to reduce the swelling. My experience with Prednisone back before diagnosis probably kept me from doing so, because I really didn't like it. If it had gotten bad enough, I would have called. I later learned from a member of Dr. Chang's team that swelling usually doesn't cause permanent damage, and that steroids are mainly to provide relief to the patient.
I have had occasional brief episodes since then, but not lasting longer than a day. Taking an Ibuprofen was all I needed. In March 2008, I had a follow up MRI and hearing test. I lost a little more low frequency response, and another 6% word recognition, but otherwise my hearing is basically stable. The radiologist's report on the MRI indicated that the AN had shrunk a little bit, down to 6 mm. In April, I started wearing a Unitron Moxi hearing aid, which does a good job of giving me useful hearing in my left ear again. It is particularly good for conversations, and I have stopped saying "what" so often.
My left side hearing may go eventually, but I have certainly bought some more time with it. If it does go, the prospect of a BAHA sounds pretty good. I will be having 6 month or annual MRIs for a while, but I feel confident that my AN story is basically over now.
Conclusions:
"How shall I treat you, let me count the ways," we might say about acoustic neuromas. Every patient has to grapple with the same basic questions: get treatment or watch and wait; surgery or radiation; which doctors to go to; what kind of surgery, or what kind of radiation. I can only offer my own views.
I would watch and wait if nothing much was happening with symptoms, or if say hearing was already gone, and nothing else looked to be in jeopardy. I was inclined to act sooner in my case, and would be in others, if hearing or something else appeared to be in jeopardy, and waiting might mean missing the chance to save it. In general, ANs are easier to treat when they are small, with fewer complications.
If I had done surgery, I might well have chosen translab, and sacrificed the hearing. Hearing preservation seems to work best when the hearing level is high. Translab seems to be the safest surgery, at least for smaller tumors, with low rates of facial nerve damage, headaches, and other side effects.
I would probably not choose radiation for a larger tumor. 3 cm is the standard cut-off, but I would be nervous about it above 2.5 cm. Pressure on the brainstem is a serious thing, and not to be taken lightly. Besides size, the location of the tumor is important to consider. For the big tumors, retro-sigmoid surgery plus radiation seems to be a sensible and effective combination.
For many people, the choice between radiation and surgery comes from the gut. For some, surgery sounds clean and decisive, while radiation sounds spooky and troubling. Surgeons are often heroic in the movies; radiation oncologists rarely are. For others, surgery sounds invasive and aggressive, while radiation sounds high-tech. Surgeons are often egotistical, while radiation oncologists are likely to be friendly nerd-geeks.
If you fall into one of those camps, and I think most people secretly do, then you will end up deciding accordingly. I think that happened to me, and to others I have talked to, and I think it is just fine. It is essential that you believe in your treatment plan, and your doctors. Don't beat yourself up over it; just go with your instincts. The members of this forum always support every patient in whatever decision they make about their own treatment.
If you do decide on radiation, then there is the fun debate about which kind to have. I could have had Gammaknife treatment in Portland, where I live. In fact, I could have had Cyberknife at a newly opened CK center in Vancouver, WA, just across the Columbia river. So why did I go to Stanford for CK?
GK and CK are very similar for treating ANs. I chose CK because it has a slightly better chance of preserving hearing, and because it doesn't involve a metal head frame. The third kind of radiation, FSR, seems too drawn out to me, and has a slightly lower chance of preserving hearing. I went to Stanford because they have done over 700 ANs, and Dr. Chang was responsive to emails, and I have a friend who lives nearby. None of these are important enough reasons to be requirements, and I would have accepted doing treatment locally, and doing GK or FSR if necessary. I am glad I had the opportunity to do CK at Stanford, though.
Epilogue:
And now I have become a moderator of the ANA forum. Although it is the sort of honor where they say congratulations and hand you a broom at the same time, it is an honor nonetheless, and I am more than happy to do it. This forum means too much to me not to be a part of it in every way I can. To all my new friends here, I say thank you.
Steve
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Steve -
this is a great story. I officially nominate it for the next issue of ANA Notes. It's very informative and your conclusions are summed up very nicely.
If you ever do get a BAHA, I'll buy your first bottle of Dawn ;D
Jan
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Thanks Steve. Very well done, informative and helpful.
Mona
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Steve,
What a wonderfully written story of your CK experience. I would really encourage you to contact Valorie who moderates the CPSG board and have your story added to the group over there as well
Well done
Mark
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Steve,
From a newbies stand point, your story was very informative,helpful/hopefull and showed that though we are all different in experience, we are all the same. I'm very fortunate that you are one out of many moderators that guide us with your experience. I've been blessed to have found this site. Thank You
Claire
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Steve,
You are AWESOME! I lived through your CK experience and thought processes with you. As a pre CK treatment patient, it affirmed my decision.
I am writing in real time about my experience on a different thread. I probably should have posted it here, huh? Anyway, here is the name of the thread and the url.
Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
http://anausa.org/forum/index.php?topic=6523.0
I want to also thank everyone else for their postings on CK. I actually am looking forward to getting mine done next week. I have my CD's made and I am very comfortable with my decision. For me - after extensive research and consults, it was a no-brainer. Everyone has to do what is best in their own case.
I appreciate this site so much and I know I have said it before, but words don't suffice for the help I have received here.
Mary 8)
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Great job, Steve, and thanks! Very, very well written and informative (and fair and balanced, just like Fox News, right). Will be very helpful to all the newbies here, myself included...still being an undecided newbie.
Mary, best of luck next week. Will be watching for your updates on the thread you started.
Cindy
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Cindy,
Thank you for the message. I feel very optimistic. I will be watching to see what you decide. Our AN's are about the same size. Such a wild ride, huh? I see Dr. Daspit Wednesday for our pre-treatment appointment and I will post what happens then.
Take care, :)
Mary
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Hello All,
I had Cyberknife in August 2007 for my 2.6 cm AN. Because of the size of my tumor, I had to think carefully about surgery v. radiation and also spent a lot of time thinking about GK v. CK. I have tried to recount my whole decision-making process, and also my progress since treatment, in a website, which you can find below (in my signature). I put the site together hoping new patients might find it helpful in their own process of evaluating treatment alternatives.
Sincerely,
Francesco
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Well here goes, this is my first post and I'm not quite sure how to post or where to post to get started. I have been reading the posts by everyone for the past year but decided it would be a good time to start so others out there reading would know where I'm at in my AN adventure and how much help I've gotten from all the posts I have read. You have definitely given my alot of needed information to help with my decision to have cyberknife. You all are amazing!. I found out 2 years ago about my AN and thought I was all alone until my doctor at Kaiser suggested I look up this website. I went for the mask making at Stanford today and have my 3 treatments on Monday,Tues and Wed. of next week. I'm treating it as a vacatioan and hoping for the best. I have to admit that I have been very worried about the outcome. I already have some balance issues along with problems swallowing which I have no idea if that is a symptom of the AN or not. Please let me know if I have justed posted in the wrong place. Hopefully I'll learn as I go along. Thanks again to all of you out there who have helped me through this process. I appreciate you more than you know.
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Hi Debbie L,
Best wishes for your Cyberknife treatment next week! The Stanford team is very good, you are getting the best. There may be some bumpy patches ahead, but I'm sure you will do fine.
Posting here is fine, but you might want to start a new topic, more people will notice it. When in doubt, it is always safe to start a new topic under AN Issues. If you go to that section, the new topic button is on the right side, near the top. Don't be shy!
I'm glad you posted, you are welcome here, and we will soon want to know how your CK treatment turned out, and what size was your AN, and how is your hearing, and what state do you live in, and all that kind of stuff.
Steve
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Hi Debbie and welcome! Also want to send along wellness wishes for your CK treatment.... we'll be cheering you on and glad to see you participating here. Come peruse the rest of the forums and say hi.... so many here to cheer you on and give support.
Again, welcome... and good luck with your CK... Stanford is fab for CK treatments..... You're in great hands there!
Phyl
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Hi Debbie,
Welcome to the site! I am glad you found us. My doctor also steered me here and I am so grateful for his lead. It has helped me immensely.
The worst part to me was making the decision on what to do. I am so glad you found Stanflor. They of course are terrific from everything I have heard. Please let us know where you live and all about your AN and how you found out you have it. We are a curious group. I agree starting a new topic would be great, that way we can follow you easily. We are cheering you on. I had my Cyberknife in early June so I am a new "Postie."
Take care,
Mary 8)
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Hi all,
Wow, you guys are amazing. So fast to respond and wish me well. It actually brought tears to my eyes. Not everyone you talk to about having an AN and dealing with issues they can't see is sometimes very difficult so it's nice to have other An's that understand what you're going through.
I started my AN journey 2 years ago when I was having terrible ear aches (right side) and headaches. My physician at Kaiser (Folsom, CA where I live) kept saying there was nothing wrong with my ear and would send me away. By the fourth time seeing her, I finally said there had to be something because I wasn't imagining this ear problem. She sent me to an ENT who also said there was nothing wrong but would suggest an MRI if I continued to have problems. This back and forth continued for months until I asked to have the MRI done. When they told me it was an AN I was shocked and they the whirlwind began trying to decide what to do. I chose the wait and watch until now. My AN started out at 4mm x 6mm x 6mm which is small but I was also having some balance issues. It is now 9mm x 9mm x 7mm. My hearing has also declined a small amount but decided to kill it now before anymore hearing goes. I also have tinnitis (or whatevr it's called) which is very annoying and very loud in the right ear. It drives me nuts.
At first my doctor at Kaiser suggested I stay in Sacramento and have the GK done. I checked the doctor out on the website at Kaiser to find out that he specializes in back tumors and had only done a few brain tumors. He wasn't about to touch my brain! That's when I started researching and found out that the Redwood City Kaiser had a lot of doctors who did brain tumors and had been doctors at Stanford before joining Kaiser. My Kaiser doctor, Dr. Efron, was great and suggested I consult with Dr. Adler and Soltys at Stanford to check out the CK. That was back in 1006 at which time I decided to wait becasue I wasn't sure what to do and knew that since it was small I had time to research and think about it. That is when my neurologist suggested I look up and join this site. It took my a year to actually do that.
It was after reading all the postings here and reading everyone's experience that helped my make my decision to do the CK. I am so glad I am able to go to Stanford to have it done. From all the postings I've read, everyone seems real pleased with the doctors there. From what I've heard, Kaiser may be in the process of purchaing their own CK machine which was another deciding factor for me. I wanted to be able to go to Stanford and not have it done at Kaiser with someone who hadn't done the amount that Stanford doctors have done.
The mask making was probably to worst for me. I'm not real clostrophobic but I don't like things against my face. I'm also having a problem swallowing sometimes and the mask made that difficult. I'm sure I'll probably take the happy pill or whatever it is they can give me to help. SPeaking of swallowing, has anyone had problems with that? It seems that sometimes it's hard to swallow. I mentioned it to my neurologist who said it could be related and if I continued to have problems to come back. The other day I had several incidents with not being able to swallow that even scared my 16 year old who was home at the time. I put a call into my doctor but she's on vacation this week.
Wow, I think I've just written a book for you to read. I will post again after my CK experience next week. My sister is flying in from Seattle and we're treating it as a vacation for the two of us so hopefully I'll have a great experience and feel like shopping and having fun. Thanks again for all your encouraging words. Having you guys (and gals) has helped me tremendously.
Debbie
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Hi Steve,
Thanks for explaining how to start a post. It definitely will help to know how to get around in the site. It can be rather overwhelming at first knowing what to read and where to post info to keep everyone informed. You'll hear a lot more from me once I get started.
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Debbie,
Thank you for your post. It is good to "meet "you. I think your chances of feeling good after the CK are quite high. My hubby and I went out to eat right afterwards. I was a little tired - I think mostly from the anticipation of going through it. The symptoms I have now (2 months postie) are the same as pre-ck, just a little bit worse. I do get more tired, more easily now. I think it is my balance issues worsened and it takes a lot of energy to stay upright. I still have some hearing. On some days it is worse than others. It is never good, but wasn't pre-ck. That is why at the last minute I went only 1 day. My hearing wasn't worth saving. My facial nerve is fine. I have minor twitching occasionally. So really my issues is still dizziness, but without that I doubt I would have been diagnosed in the first place, so there are pluses to everything. I am improving and fully expect to get back most of my balance. I am glad I chose CK and have never second guessed my choice.
Wishing you well!
Mary 8)
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PS
I forgot to mention I had tinnitus before CK and still have it. When I am tired, it gets worse. It gets exceptionally loud at it's worse and I say it is screaming at me. I have gotten so used to the 24/7 high pitched sound that I can truly say the vast majority of the time I forget it is there. This is something I could never have imagined when I first started having my AN symptoms.
;D
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hello hello :)
I am falling for CK ;D
It sounds as t's the best way to go. Now, how long did it take you all to go back to work/work out...after the treatment?? some weeks? months?
ty for all your stories. Since 2007!! amazing :D
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Pascale,
I had my last treatment on a Friday, flew home on Sunday, and was back at work at 9:00 am Monday morning. I was not 100% for several months, but I was probably 90% right away. The last 10% takes a while to get back.
Steve
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Hi Pascale.... you will know what is best for you and your situation in making any AN treatment decision.
I was back at work the week after CK. A bit fatigued and really no headaches... the fatigue was a bit for me to overcome (but, I have other physical issues as well, so I think it, all tolled, was taxing for me and my situation). I was doing everything from walking my dog, going shopping, our for meals, working too many hours, etc.... but when the body talked to me and said it wanted rest, I listened.
Hope that helps.
Phyl