ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Sefra22 on January 09, 2007, 07:01:51 am
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I thought I had made my decision to have surgery, but the more research I do on Gamma knife, the better it sounds. From what I've read, there is no nerve damage, only one night hospital stay, and back to your life much sooner. But I wonder, what are the downsides? I can't seem to find any info on the risks, other than that the tumor is still there and may swell for a time. I would appreciate any info.
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Lisa,
My wife had successful translab surgery at the House Ear Clinic in LA yesterday. She had a 1.9 cm AN, with significantly reduced hearing going in. We took a lot of time researching the options. Drs. Friedman and Schwartz both recommended surgery, but discussed the trade-offs with us in great detail. They know the research and are world-class surgeons. Radiosurgery and microsurgery are both reasonable alternatives, but there is a lot to consider. For what it's worth, House is amazing and was well worth us traveling from Iowa to LA.
Good luck to you!
Fred Moore
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Hi Sefra
do you have access to the ANA Newsletters (are you an ANA member)?
We just received this month's issue of the newsletter (not yet posted on the ANA home webpage/link for newletters). There is a terrific main story write up about the different radio-treatment options, some pros and cons to all.... and as many have us have learned, no treatment is full proof. Risks involved, regardless of which radio-treatment can include dizziness, balance issues, further loss of hearing (usually within 5-7% of hearing at time of treatment), etc.
If you don't have access to the newsletter, you can email the site/director here or let us know here and will see about getting you the copy of the article. It was very insightful in its discussion of all forms of radio.
Phyl
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Hi there Phyl...
I would also greatly appreciate any advice re obtaining access to the relevant article on GK treatment if you could kindly direct me to what I have to do etc.
Regards
Derek
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Hi Derek,
Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article. Will advise.
Phyl
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Greetings all,
Looks like others are like I was. I was scheduled for surgery at HEI with Dr. Brackmann. Due to insurance dragging feet and then only paying as out of network I had surgery postponed. In the mean time I contacted Dr. Clinton Medbery with Saint Anthony's Hosp. In Oklahoma City. He has 27 years experience as a radiation oncologist. He does Cyberknife and Gamma Knife. I thought I had nothing to lose by consulting him. My local neurotologist and the surgeons at HEI had suggested the only way to go was surgery and gave me a lot of out of date information when I said I wanted to look into radiation.
My surgery was scheduled for 11/9/05 I saw Dr. Medbery on 11/8/05. My MRI's were presented to a board and came back with the opinion that I could have any procedure I wanted. I then went to a Neurosurgeon at Oklahoma University Medical Center that does surgery, GK and CK. She too told me I could have any option I wanted. I ask her if it were her or a loved one and the tumor was exactly like mine what would she do. She said radiation in a heart beat. I ask what if radiation failed. She replied why would I think it would fail? The out come is very close between radiation and surgery and radiation left little room for facial damage or dry eye. Surgery would be harder after surgery if that failed. I didn't have hearing so that was not a factor. I ask why the surgeons were opposed to radiation. She said because they know and do surgery and don't do radiation. In her opinion GK and CK will become more and more common. I thought I was going to have to pick my neurotologist off the ceiling when I told him I was going to have CK.
Long story short. CK first week in January 2006 I will go for 1 year MRI tomorrow. I had 6 month and 3 month all was well. I have had very minor symptoms since treatment. Have not missed a day of work except the days I had CK and could have gone then if I wanted. The husband of a lady I work with was diagnosed with a AN and scheduled surgery then changed to CK here in OKC. His treatment was December 2006. They are on a cruise at this moment. He did go to work after each CK treatment. He was within two weeks of surgery when he canceled.
Your best bet is to find a neurosurgeon that does all kinds of AN treatment and see what is best for you. In the mean time you can go on the Cyberknife Patient Support site and ask Dr. Medbery or any of the responding doctors any question you would like and you will get a very honest answer as to treatment options. I was never, not one time pushed by Dr. Medbery to have radiation. I was however scared spitless by the neurotologist and their dire predictions about radiation. I do not have one regret that this is the way I went. I feel good, tinnitus is less, balance is getting better and fatigue is just about all gone. I sleep like a baby and am back to doing just about anything I did before diagnosis. Research, go with the gut feeling and go on with your life.
Sandy
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Hi Sandy...
Many thanks for your comprehensive overview re the radiation treatment option that you decided upon and which has been an undoubted success for you.
Being presently subject to the 'wait and watch' option I fully intend opting for GK treatment (CK is not available within the UK) when and if decision time arrives pending the result of my forthcoming MRI scan in April.
Your account graphically illustrates the importance of thoroughly carrying out your own maximum research and obtaining more than one professional opinion on all available treatment options before making that all important final decision and not to be 'pushed' unnecessarily into microsurgery particularly if the AN is of a size and in a location whereby the less invasive and obvious less risky stereotactic radiosurgery is a viable option in the first instance.
Best Regards
Derek
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Had to jump in and add my two cents!! I, too, am a wait and watcher and have decided when it is "time" that it will be either GK or Cyberknife. I've actually been at this for five years with my 9th cranial nerve schwannoma starting at around 9 mm and is now 12 mm after that amount of time. In fact, this past MRI done in November (yearly) showed no growth over two years and quite possibly a tad smaller - I grasped at that news ;D So now I am on a two-year MRI followup but may ask to continue on the yearly basis.
Ironically it is my husband now who is considering Cyberknife and awaiting an appointment in the Naples, Florida facility. He had another type of benign tumor (meningioma) removed in May, 2004 and at his MRI followup in November (we do things together!!), it showed a regrowth. Usually these are extremely slow growing but the first doubled in size in six months and they feel that this will follow as it probably has the same cells. The opinion is to have another surgery and then radiation but he is opposed to having his head cut open again and I don't blame him.ÂÂ
Bruce - as you are another "wait and watcher", I have been following your posts and enjoy reading them - glad all is going well.
Sheryl
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Thanks everyone for your responses! Today I made an appointment for a consultation with Dr. Noren in Providence for Feb 1st. to discuss if GK is right for me. I am hopeful for the first time since my diagnosis. The more I researched GK, the better it sounds compared to surgery. I really didn't want to use up all my vacation time in recovery! Now I can still have some time off in the summer, which is great because I got a new kayak for Christmas! ;D
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Noren is just about the best (ie most experianced etc etc)
I think you are in good hands
Best regards
Tony
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After reading all the responses that you got I hardly need to say anything except: I am 20 months post GK and could not be more pleased. I was in the hospital from 7:00 AM till 1:30 PM, went home, went to meetings that night and flew to Colorado for meeting the next 5 days. I did have some feeling of a loss of balance between months 2 and 6 or so. I stayed off my bike for a few months just because I was being very careful and feared being off balance and on a busy roadway which I thought would prove to be a bad combination. I haven't been kayaking since but that is only because I don't have any time to get away. It is on my "to do" list. My last MRI was at 18 months and tumor has continued to shrink and they don't want to see me again for two years. Life is good!
Good Luck!
Michael
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Bruce, I also appreciate your thoughtful, intelligent posts and am so glad you are helping people to see both sides of the story.  I, too, am rather aghast at how doctors just slide a person towards surgery without revealing what's behind door number 2.  My choice would be non-invasive first, brain surgery second (unless, of course, this is the only option due to other circumstances such as size and location).
Sefra22 -  Gamma Knife usually does what it's supposed to do. It kills the bugger.  It's just that it takes a little longer to do that than scooping it out of your head.  The only downside that I can think of is that a person then has to wait and see what happens in 6 months, and then 6 months after that, and then maybe a year after that.  I am going on 9 months since my GK last April and I have another MRI coming up.  Hopefully I will get news that necrosis has begun.  But if I don't then I will have to wait until the next time.  I still have my symptoms that I had before I went in.  I still have tinnitus (surgical patients usually retain that as well), I am still "severely" deaf in my left ear and I still have numbness on the left side of my face (which includes the inside of the left side of my mouth). My doctor hoped that the numbness would go away, but I have resigned myself to all of these symptoms for the rest of my life. If something gets better, then wonderful. If it doesn't, then I figured it probably wouldn't anyway.  I don't have, for some reason which I am grateful for, dizziness or balance problems to a degree that is debilitating or bothersome.  I did notice this when I walked on the soft sand at the beach, however!  Very weird. ÂÂ
So far I am not sorry I had Gamma Knife.  Good luck to you in whatever treatment you choose and recovery.  :)
Sue in Vancouver, USA
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Sue,
I am sorry to hear that you still have symptoms after treatment. I really don't expect there to be any improvements in my hearing, but I am grateful that I don't have any balance or facial issues, and only mild tinnitus. For that reason, I want this done sooner rather than later so that hopefully I won't develop them. I haven't walked on the beach in a while, but I sometimes feel a little dizzy after getting out of the car when I am a passenger. Never when I drive, though. Very weird as well.
Lisa
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Hi Derek,
Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article. Will advise.
Phyl
Hi Phyl...
I emailed the ANA website admin a few days ago requesting info re becoming a subscribed member in order to access the relevant newsletter that you referred to concerning the pros and cons of the various radiosurgery treatment options but so far I have not had a response.
I would llike to read the article and wondered if you had been able to asccertain a method of non-subscribing members being able to access the item?
Regards
Derek
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You may find it helpful to watch a live WebCast today at 4:00pm Central time done by the St Joseph's Hospital and Marshfield Clinic physicians in Central Wisconsin. The site to find this webcast is www.or-live.com The case will be an Acoustic Neuroma patient, and you may find extra information valuable in your decision making. Questions will be welcomed. Wishing you the best in your decision making. Gamma Knife is certainly non-invasive and well tolerated. In our experience the outcome has been strongly positive. God Bless,
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Hi Derek,
Will bring it to work and scan into .pdf file (make sure you have Adobe Reader/Acrobat to access). I can then email to you on your internet email if you PM me here with your email address..... that work?
Phyl
Hi Derek,
Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article. Will advise.
Phyl
Hi Phyl...
I emailed the ANA website admin a few days ago requesting info re becoming a subscribed member in order to access the relevant newsletter that you referred to concerning the pros and cons of the various radiosurgery treatment options but so far I have not had a response.
I would llike to read the article and wondered if you had been able to asccertain a method of non-subscribing members being able to access the item?
Regards
Derek
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Hi Phyl..
PM sent and many thanks for your assistance.
Regards
Derek
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Replied and glad to help... heck, I'm a Brit-by-association now, so helping a fellow Brit! :D
(hit me later for that!)
Phyl
Hi Phyl..
PM sent and many thanks for your assistance.
Regards
Derek
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I'm havining a similar dilema in trying to figure out what the real cons are for going down the GK route for treating my AN. There are many documented points which highlight the downsides and risks to going down a micro-surgical route, but many of the downsides to GK are heavily refuted by folks on this board, and on the CK support board. The only downside there appears to be is that GK will mean several follow-up scans, each time you have to go through the whole "Has it worked, hasn't it worked" anxiety.
I am going to look at some of the resources that are mentioned on this thread but based on what I have read so far, I'm surprised so many people end up going down the micro-surgical route. Obviously larger ANs are a more complex issue but for those smaller cases, GK/CK seems like the right choice everytime. From my own understanding/research this is what I understand.
Pros
- Risk to facial nerve damage is lower
- Reduced recovery period
- High rate of success (90%+)
- Increased chance of hearing preservation
- Non invasive
Cons
- Typically can only be used for tumors <2.5cms
- Risk of cuasing timor to become malignant (almost negligable risk?)
- Long Term Outcomes relatively unknown
- Follow-Up Scan anxiety
- If unsuccesful, can make tumor 'sticky' (Refuted my most professionals)
Once question I do have relating to my own case is this, does proximity to the brain stem have an effect on GK/CK? My consultant has told me that mine is now only about 1mm from the brainstem? Can anybody from the UK (I know you're out there!) suggest any consultants names i could speak to? Has anybody been with Mr. Kelly in Leeds?
Thanks again all.
Mark
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I might address some of the cons:
Size: Not sure that is still the limit for GK? I know they treat bigger tumours with FSR.
Malignancy after radiosurgery is statisticall smaller than the risk of getting any othr type of malibnant tumour
Long term effects: I would have thought that since GK has been used for at least 50 years, there should be plenty of studies, particularly from Sweden.
Anxiety:Y es, if one is so inclined.
Sticky. It's the scar tissue that forms around the tmour that 'sticks' to the nerve. Same as the scar tissue that forms around surgical sites. So it is debatable if the GK / FSR route are any worse. Dr Chang of Stanford who handles both methods claims that there is no difference and that it is not more difficult than any other seond surgery.
Your pros are correct as far as I now, but remember that even though it is not invasive, it is far from an 'easy' option in case other people might think that. It is still major surgery and recovery is still considerable. In the end, one factor that is of major importance to us all is: what does one feel comfortable with? Might not be scientific, but it rules a decision we will have to live with for the rest of our lives. CK made me feel comfortable, and I don't regret it one bit.
Good,
Lorenoz
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Hi Mark...
My neuro consultant for proposed GK (if and when the time arrives!) is Mr Rowe at the Royal Hallamshire Hospital in Sheffield. I have had one consultation with him in July last year and was very impressed with his professionalism and ability to LISTEN to his patient. MY next appointment with him will be in April this year following my next MRI scan.
My AN is 2cm and actually in contact with the brainstem albeit not yet compressing it. Mr Rowe indicated to me that this aspect would not be a problem for GK treatment and in fact he had no problem with my decision to extend my 'wait and watch' period to April.
Regards
Derek
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Had Gamma Knife treatment this past week. I did a considerable amount of research, primarily in peer-reviewed abstracts, papers, this and hospital websites in addition to serious consultations with my doctor. We reviewed all of the options. At first, mircosurgery seemed to be the option of choice. It was after completing several more advanced diagnostic tests that the radiosurgery became at least as viable as the microsurgical approach. I pretty much had a choice between two: translab microsurgery or Gamma Knife. With a 90% or better chance that the GK would be successful in stopping the growth and the major surgery still an option in the event that the GK was not, I chose the GK as my first option. One question that I asked was whether I was potentially complicating my situation later on if the GK did not succeed. The response is that techniques may improve over time. So, if we have to revisit this a few years down the line, there may be better ways to deal with it just a there have been improvements leading up to now. The one option that will not be viable should it come to be in the future is one that does not exist today (and might never) and that is a pharmacological treatment. The GK effects both the molecular structure and the blood flow to the growth (at least that is my lay understanding--I am a patient, not a doctor, so read with that in mind) so nothing would get through.
I've had a good experience. While my understanding is that an acoustic neuroma is a major condition with potentially serious consequences if you do not manage it, actually going through the process of diagnosis and treatment has been a remarkably straightforward. Perhaps I am fortunate in that every step of the way I was referred to the right people. I also took time to learn what I could and carefully considered my options.
The Gamma Knife itself was not that much more complicated than an MRI, except for the headframe. I was in and out of the hospital in about 7 hours, start to finish. For most of that time, except for when they placed the headframe on, I was alert and active. My energy was fantastic afterwards and, several days out, the only real indication of the treatment is a little residual effect from the frame, a little swelling and two little punctures on my forehead where the frame pins were and slightly more pronounced areas on the back of my head where the weight of my head exerted more pressure and the pins went in a little deeper. Other than a good headache for about a half hour after they removed the frame and then a dull ache, mainly at the pinspots, for the next day, effect has been minimal.
The actual effect of the Gamma Knife is not revealed for some time, so how this all plays out will not be known until we see future scans and the exposed area has time to react. What I can say at this point is that the effect of the treatment itself had a minimal impact on my day to day. I was able to walk out of the hospital, eat, and pretty much resume normal activity without interruption. I gave myself a little down time from work (it is brain surgery after all and if that doesn't qualify for sick time, I don't know what will!). I was physically and mentally able to handle personal and business matters by email and phone the next day. I was also on a Spinning bike getting a modest workout and my energy was good the following afternoon. My family has begged me to stay quiet but I have had the energy to do more.
I give tremendous credit to my team throughout this entire process. I was totally prepared and everyone I enountered conducted themselves with the utmost professionalism. I wouldn't wish an acoustic neuroma, or any ailment, on anyone...but if you have to go through something like this, the people you meet along the way make a difference
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HI rambler,
Well done, well written and said! Glad to read you had such a positive response to treatment.
The energy levels you're experiencing now may not be there all the time though. I remember that just after Ck I felt great, full of energy to the extent that we drove around California for about 3 weeks having a great holiday. The fatigue and effects only hit me when I got back home, about 5 weeks after treatment. I'm not suggesting that this might also be the case for everybody else and you in particular. I'm just making people aware that the effects of treatment, any treatment, can be severe. I had to deal with incredible fatigue after all the super energy. Fatigue like I never experienced before. And that was only the physical aspect of the post-treatment issues. Emotional problems were there too.
My advise? Take is very easy and mind yourself. This was and still IS major surgery, and the recovery can be a major event in itself. I'm sure you're aware of all this anyway.
I hope you won't have all the effects from radiosurgery as some of us did. Maybe you'll be one o the lucky ones.
Gooed luck with your recovery.
Ciao, Lorenzo
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I had GK in November of 2003 at the University of Virginia (I was 42 at the time...and active duty military). They now have another GK unit that is closer to my home here in Virginia. If you check out both of the links in my post script you can check them both out...
GK like anything else is not the "magic bullet" I chose GK because it met the three things that I personally wanted in a treatment for my AN: 1) least amount of trauma as possible, 2) I wanted to do this only once (attack this AN), and 3) least amount of time away from work. For me GK was the answer.
So with that in mind how did it work out for me: My tumor increased in size from 1.8 to 2.1cm over a 2 year time frame which I was prepared for as swelling does happen in 35% of patients which from what I am told and researched…is actually a good thing...as the tumor is reacting to the radiation. My hearing has not changed I have not lost any more of my hearing and can still use my left ear. My speech recognition is the same and my hearing tests remain constant. The biggest thing for me personally…is that my tumor has not yet shown a decrease in size...but success is not always measured in a tumor decrease. As long as the little sh$t doesn't grow I can deal with that. The tumor has shown a bit of necrosis but I'd be happier if it actually shrank.
As for the other inputs about GK, I've talked with Dr. Steiner at the University of Virginia (co-founder of the GK procedure and my attending GK doc) that tumors larger than 3.0cm have shown great promise with the GK. As for the “stickyness� of the tumor after GK treatment if it fails...well the tumor is sticky to begin with... If my treatment fails I'll probably go for the de-bulk of the tumor and then GK again. I just have a hard time with the surgery personally.
I hope other GK patients chime in with their story and how it worked for them. In short and I happy with my decision....yes. Would I choose the same treatment again....yes.
I hope this helped,
GM
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Question for GM,
Although you state that your little friend has grown, which after reading I hear is typical and actually a good sign....how long before they determine that perhaps Gk was not succesful? that I havent heard anywhere. Also, why did you choose Gk over CK.
Thanks, and I am sure if it is not causing your problems, that it is dying and necrosis is of course always a good sign.
Ceeceek
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Ceeceek,
"How long before they determine that perhaps Gk was not successful? that I haven’t heard anywhere." ...Well any treatment is considered successful...if the tumor doesn't grow any more. The usual measurement is the 2 year mark after GK treatment.
"Also, why did you choose Gk over CK." ...I chose GK over CK because it was an older method and I liked the idea of one treatment versus multiple treatments. Plus Dr. Steiner (procedure co-founder) was at the University of Virginia...
GM
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Reason I ask about the how long period, is that in fact your tumor has grown correct?, so I guess what I am getting at is how big will they let it grow before they determine it is not growing anymore....about 2yrs???Dr. Medberry has stated that although VERY unusual, sometimes a treatment is not particularly effective and retreatment is necessary. I believe the odds are in the less than 1% category....so as I am hopefully looking at either GK or CK...as the size of my growth may not be able to be treated with GK but will allow for treatment of CK......confusing huh........I am wondering what type of wait period I may be experiencing to determine if it is indeed succesful...now mind you, I intend to see great results within 6months, but want to be prepared, like you.
Ceeceek
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CeeCeek,
My six month check showed some "swelling" which was an increase in size of course but it also showed the interior of the tumor to be black which showed that it had or was in the process of dying. I guess the color was the biggest difference. I recall seeing the tumor before on my MRI as a white mass when shown with the highlighting and that is not the case after GK. I feel like a poster child as I had the expected swelling and some minor dizzyness but other than the temporary numbness and puncture wounds form the frame I was truly good to go for any normal activity. I am so thankful. I wish there was a way to let everyone know of the GK successes. I always feel I should be very cautious is saying that as I know we are all different, it is just that my case was so "by the book perfect". I continue at 20 months to feel the same way. My 18 month MRI showed some shrinkage. Hearing appears to be the same, no facial numbness or any balance issues.
Best of luck!
Michael
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Three years was the time frame I was given to assess success rate. But, at this stage, it is well on it's way to dying. At isx months I had black areas within the tumour, and some swelling. By one year it was blacker and stable, by two years it was dying even more and has started shrinking, back to it's original pre-treatment size. So, maybe after three years it will have shrunk some more and the process will be completed. Won't know until November when I'll have my next MRI.
My AN was touching and slightly compress the brainstem at 26mm rigth before treatment. It swelled to 30mm aproximately (10 - 15% swelling is the way they put it). I had issues but those are mostly behind me. Now I have some slight problems but nothing that wouldn't be normal. All in all, CK was an excellent solution for me!
Ciao, Lorenzo
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hi ceecee,
will chime in as well here. All have made wonderful remarks to your question and maybe my 2 cents/pence (for the UK gang) will help.
It is my understanding that the tumor could endure (possibly) a hint of edema (swelling). This is not unusual in any form of radio-surgery treatment (ie: GK, CK, etc). The tumor may swell after its been hit with radiation so basically, it's the calm after the storm. Steroids or anti-inflammatories (such as Decadron, etc), may be prescribed short or longer term to help with the swelling to help prevent further pressure on the vestibular nerve. Now, some report that they AN's have shrunk in size over time by a few mm here and there (mine, 8 mos post CK did show a hint of reduction in size) but the key is this... the core of the AN and its DNA death. So, the ultimate key of radio-surgery is not to shrink the size of the AN (necessarily but it is nice if it happens) but to kill it's core DNA to help stunt its growth and let it die it's gorgeous death.
Folks also need to remember that post-radio-treatment (regardless of which treatment), that MRIs are usually +/- 2mm in AN measurements. So, example, at my last MRI (8 mos post treat), they noted a shrinkage in size but if you weigh out the +/- factor, if it did indeed shrink, then it shrunk approx 2mm. So, please keep in mind the +/- factor.
So, that's my 2 cents/pence for the day. Not sure if it helps but figured I'd chime in anyway.
Phyl
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Hi Derek,
Will bring it to work and scan into .pdf file (make sure you have Adobe Reader/Acrobat to access). I can then email to you on your internet email if you PM me here with your email address..... that work?
Phyl
Hi Derek,
Well, I can scan the article and try to post somewhere..... let me see what I can do. It was a terrific article. Will advise.
Phyl
Hi Phyl...
I emailed the ANA website admin a few days ago requesting info re becoming a subscribed member in order to access the relevant newsletter that you referred to concerning the pros and cons of the various radiosurgery treatment options but so far I have not had a response.
I would llike to read the article and wondered if you had been able to asccertain a method of non-subscribing members being able to access the item?
Regards
Derek
Hi Phyl...
I never received the e-mailed article...just wondered if there had been a 'glitch' in the system?
Regards
Derek
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sorry about that Derek. I was side-tracked with other issues... me bad :(
I have the article scanned here and just need an internet email for you to send it... sorry for the delay.
*slaps self across face*
Kewl, didn't feel that on my numb side! :)
Phyl
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Received it and digested it....thanks Phyl.
A very informative article and 'easy read' assessing the various radiosurgery treatments. It also clearly outlined the technological advances that are constantly evolving since the original GK treatment some 36 years ago. One wonders what the next innovation will be..and when?