ANA Discussion Forum
General Category => AN Issues => Topic started by: MaryBKAriz on March 25, 2008, 07:41:29 pm
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That is the question. I have mild lupus didn't know how that restricts options, if at all. I sure don't want to see Fried Brainboogers on a menu anywhere - by the way. :D Mary
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Mary~
If the tumor is too large or the position is not good are the main reasons for NOT being able to do GK if I understand correctly. Someone else can certainly give you better answer...Steve, where are you?
K
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Thank you K....that makes sense from what I have read about the gamma knife. I see Dr specialist at Barrow Neurological for first time tomorrow...wanna be as informed as possible. Mary
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Hi Mary -
I've heard the same thing as K. If it's too close to the brainstem, they won't want to run the risk of radiating that as well as the tumor. And I think if it's over 3cm, that's considered too large for GK.
I guess the most important consideration is Location, Location, Location.
Lori
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:)Thank you Lori...helps to get this info
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Hi Mary,
I think the other thing to consider with GK is the scarring that can occur then later if you have to have surgery that can be difficult to do surgery on. Not in all cases but it is something to consider.
Sending Sunshine.
Robyn
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VERY interesting I had not read that yet. Oh my this has layers, doesn't it?
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HI Mary,
I heard that but I am not a DR. so I don't take it has the god's honest truth. But, I would ask about it. I heard that more than once. OF course there are many people who have had success with the procedure. It is something to ask about. Definetely GK is easier than the surgery if it is an option. Good luck.
Robyn
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Hi Mary,my brother teaches nuerology in NY City and he told me that with GK the chances of re-growth are to be
expected,personally I had Translab,I needed a haircut. but all of the above posts nailed it on the head,no pun intended.
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Hi Mary,my brother teaches nuerology in NY City and he told me that with GK the chances of re-growth are to be
expected,personally I had Translab,I needed a haircut. but all of the above posts nailed it on the head,no pun intended.
Hi 'satman'...
It is my understanding (confirmed by the docs over on the CKPSG board) that the success rate with GK and CK is approx 97% and that the chances of re-growth are about equal for microsurgery and stereotactic radiosurgery.
I would be interested to know of any relevant stats that your brother has.
Regards
Derek
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Hi Derek,my brother said that tumor removal with Gamma Knife is very successful however the chances of re-growth are in the high percentages,
With surgery the chances of re-growth are minimal,then he got into medical lingo and lost me,I believe he said that with surgery the blood supply to the affected area can be cut-off and re-routed or something,and with GK you dont have as many options as with surgery ,and this is the reason for re-growth.
He also said that if GK is used and re-growth does present itself,it makes removal twice as hard,affected area is sloppy/mushy or something.
Now please remember when he told me this I was in hospital getting myself prepared for emergency surgery,so I might be off a little bit.
there are folks who have had this procedure on the forum who probably know much more about it than I.When I talk to him I will try to get you more info.
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Hi again 'S'...
Many thanks for your prompt response but I think it would be remiss of me not to offer further comment on this important topic as potential GK / CK patients may be rather apprehensive with some aspects of your post.
Firstly the principle of GK / CK is not to 'remove' the tumour but to arrest further growth and hopefully induce necrosis of the AN being a recognized safer option with relevance to mortality / morbidity when compared with intrusive microsurgery.
All of the stats that I have researched indicate that re-growth of the AN is about equal for microsurgery and radiosurgery. I am not aware of any stats that indicate a definitive 100% complication rate with microsurgical removal of an acoustic neuroma following unsuccessful GK / CK treatment. Indeed, whilst there may well be a complication factor in individual cases, there are some eminent neurosurgeons who assess such a suggested complication factor as being minimal.
From a totally personal perspective having regard to my age and being fortunate enough in having both treatment options available to me, I will have no hesitation in opting for radiosurgery over microsurgery.
Regards
Derek
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Hi Mary and welcome! I see you are making yourself at home here and truly looking forward to your further participation here :)
Lori is certainly correct as it pertains to most radio AN treatments (regardless if GK, CK, Proton, Trilogy, FSR, etc). Most radio treatments on AN's occur if the growth is smaller than 3cm (however, I have heard of them performed over 3cm, but unaware of outcomes post treatment).
As one who suffers from FMS and has positive read for anti-ANA (nope, not the headbooger AN but anti-ANA), I found, for me, post CK... fatigue was the worse. My sister also has systemic lupus and know that her pain levels are the worse. My FMS pain levels did not enhance post CK but the fatigue did set in..... if you do a search option here for "Brain Tumor and Fatigue Brochure", you will find a link to a .pdf brochure, written by Dr. Peter Black and Nancy Conn-Levin discussing fatigue and brain tumors in general... regardless if malignant or benign, it discusses fatigue issue for BT patients and ways to counter-act it.......
Derek is correct about the percentage of success rate for CK and GK. Cross reference to these percentages for both protocols can also be found in discussions in the "Brain" section of the CK Patient Support board (some docs that volunteer their time there to answer patient questions perform both CK and GK, so a good resource if radio-treatment is being considered). The link to the site is:
http://www.cyberknifesupport.org/forum/
Since the success rate is very high for CK and GK, there are only a handful of those that have had to endure treatment failure. I do know of one that participates on this site that had CK failure (One of only 5 in over 10 yr span.... my understanding is she opted for microsurgery after the CK failure... the others re-CK... which is possible. ANA has also confirmed some GK treatment facilities -- as noted in their March 'NOTES' newletter -- are also re-GK on failures, but success rates on re-treatment unknown to me.)
Regardless of what you decide... truly..... I welcome you, I cheer you on and want you to know that I am glad to see you here. :)
Be well,
Phyl
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very well put Derek,I can't blame you on your decision,I had translab and I had no option,just passing on what I have heard.
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Oh Satman, the things you'll do to get insurance to pay for your haircut! :D
Lori
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HI Mary-
Your doctors will be your best guide on this - that being said, I was told by thee different docs (two of whom do both radio and microsurgery) that radiation was not a good option for me because of the way Ethel was growing and that she was pushing into my brain. For the same reason, my chances of hearing preservation are slim to none, so translab seems like the way to go.
I think, as everyone here has said, each tumor has to be considered "on its own merits" as to what treatment/s is/are appropriate.
I can share with you that, when I first got diagnosed (a mere three weeks ago - wow!) my first inclination after a little reading was that I wanted radiation. The first doc who told me that it wasn't an option kind of took the wind out of my sails - but you adjust and you keep learning and eventually (sooner or later) you find an option you are at peace with.
Keep doing what you are doing - learn, ask questions, learn, ask questions. And let us all know how it goes!
Debbi - digesting a great Indian meal in NJ!
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Just popping in to add the observation that 'debulking' of large AN's followed by FSR treatments to destroy the remaining AN's DNA is becoming popular. I had this procedure in 2006 and it was quite efficacious. My 4.5 cm AN was 'cut down' via microsurgery to about 2.5 cm and the blood supply was cut off in the process, as intended. Then, three months later, I underwent 26 FSR sessions on an outpatient basis with the radiation beams carefully plotted by my neurosurgeon and the radiation oncologist he teamed with. They were low-dose and very tightly focussed on the remaining AN. The radiation was easy and painless with only a hint of reaction (I was slightly nauseous for one day). Within 6 months my MRI scan showed tumor shrinkage and the onset of necrosis, which has continued. Both doctor and patient are very pleased. :)
This procedure is not feasible for every AN patient and usually will only be recommended to those with larger AN's. Mine was pressing on the old brainstem so microsurgery was definitely necessary. However, the retrosigmoid approach surgery my doctor used avoided disturbing critical facial nerves. The subsequent radiation I received also avoided those nerves. This treatment approach resulted in a very good outcome with few complications and practically no damage to any facial nerves. However, some neurosurgeons may not want to go this route. That is a decision to be made between the AN patient and their surgeon. I only offer my experience as another facet of the possible options available to you. I trust it is useful.
Jim
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Mary -
as others have said, whether radiation is an option pretty much depends on AN size and location. Your doctor(s) will tell you if it's an option for you based on your MRI. Do your research, talk to your doctor(s), weigh the possible side-effects of radiation vs surgery, and then decide what is right for you. Everyone is different and someone else's choice might not be your choice.
When my doc first told me about surgery and radiation and what I could expect from each, I told him there was no way I could possibly have surgery. I told him that as a single parent, I didn't have a week to be away from my children and I couldn't afford to be away from my job for six weeks. But in the end I decided that the time involved shouldn't be a deciding factor and that my children and my job would be just fine without me. I also considered a lot of other things, and in the end I went with the surgery.
Today, I am totally comfortable with my choice, and thankfully without "issues" - other than SSD, which IMO doesn't count since the BAHA will be helping me deal with that. Some patients choose radiation, some choose surgery; you'll make your decision in time and when you do we'll all be here to support you.
Jan
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If the tumor is too large or the position is not good are the main reasons for NOT being able to do GK if I understand correctly. Someone else can certainly give you better answer...Steve, where are you?
Late, apparently. :-[
But I think you got it right. The principle concerns are pressure on the brain stem from swelling, and radiation exposure of the brain stem, which is sensitive to it.
I would add that in some cases, where the balance nerve is causing severe vertigo, surgery may be preferred so that the balance nerve can be cut. For large tumors over 3 cm, the radiation dose needed would be too large to risk it, in most cases. And, since radiation takes a while to have its effect, there is some concern if you are planning a pregnancy in the next year, since it seems to have a tendency to jump start AN growth.
The other concerns mentioned in various posts, once you look at the numbers and do the math, are not really very significant. For instance, second treatments are harder than first treatments - regardless of which treatment choices are involved. The extra risk of facial nerve damage, if you have regrowth (2% chance), times the risk from the difficulty of second surgery (25%), works out to an added 0.5% risk. Not really worth worrying about.
I will just add that you should consult with a radiation oncologist, rather than a surgeon, if you want to get a well informed view of whether radiation is suitable in your case. Go to the pros in each field for their advice on what they know best.
Best wishes,
Steve