Author Topic: possible FSR failure  (Read 14270 times)

B

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possible FSR failure
« on: June 15, 2005, 07:18:43 am »


(Hello all, I'm back......after two years of not thinking about these issues.)

When I was preparing for FSR at JHH with Dr.Williams in 1999, he said that in the case of FSR failure he would consider retreatment after 10 years or so.

It's been six years now and I'm waiting for a response from the JHH doctors to my recent MRI films. My local radiologist seems to think there has been some recent AN growth. I'm hoping this is a mistake in measurement and second and third opinions will send me back to other pursuits.

But for now, I'm seeking information about my options if the tumor is growing.

I read the recent post of DJ stating what he was told at JHH (thank you DJ):  Dr. Riggamonti said that he has a 95% success rate but will not repeat the treatment in case of a failure. If it is a failure he says surgery is the only option and loss of the facial nerve is almost certain because of the sticky nature of the radiated tumor.

Can anyone provide more information or point out other sources on this topic? : what to do if FSR does not work.

My AN story is posted at http://www.anarchive.org/byron.htm

Thank you.  Byron

(in north Georgia, USA)





 
B in Georgia, USA
AN FSR June 1999
Translab May 2006

djameson

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Re: possible FSR failure
« Reply #1 on: June 15, 2005, 07:51:45 am »
Hi Byron!  Since my post I have gotten several replies that House and others are having success with saving the facial nerve after radiosurgery.  The neurosurgery people at JH also are much more confident in their success rates as well.  I will check with the folks at JH if I have a failure as I was very impressed with the Radiosurgery people and the regular neurosurgery folks as well.  Dr Wharam, the radiation oncologist I had is more optimistic about the chances of a good outcome than Dr. Riggamonti.  I guess Dr. R. wants to give a worse case so the patients don't get the impression that FSR is risk free or that optimism is mistaken as a guarantee for a perfect ourcome.  I appreciate that he did not try to convince me that any one treatment was the best or that JH was the only place to go.  Like everything about the AN experience I guess we have to research, research and research and then decide which direction is the best. 
Best to you and let me know the progress of your journey.
David Jameson
FSR Johns Hopkins --June 2005 
 Dr. Riggamonti and Dr. Wharam
2cm Left Side

russ

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Re: possible FSR failure
« Reply #2 on: June 15, 2005, 09:22:12 pm »
Byron
  I have been reading for years of potential hope of a positive surgical outcome post irradiation and still save the facial nerve.
  Of course the very best and most experienced ENT and neurosurgeons must be utilized. House Ear Institute in LA has been mentioned quite a bit as preserving facial nerve function post radiation when others don't succeed.
  Russ

Jack Palmer

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Re: possible FSR failure
« Reply #3 on: July 10, 2005, 05:50:40 am »
Byron, I had FSR at JHH in August of 2000. I too, am being told that my tumor is growing by several doctors. I received a fax yestereday signed by Rigamonti however saying that it is "stable". It sure doesn't look "stable". I agree that re-treating with radiation may not be an option after FSR (from what Williams told me). However, saving the facial nerve function is still possible, but more risky.

GM

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Re: possible FSR failure
« Reply #4 on: July 10, 2005, 07:26:55 am »
Why no second treatments?  I am a Gamma Knife patient and my tumor swelled from 1.8 to 2.0 cm after treatment (original GK done 11/2003).  If I go for my MRI in November of this year and it hasn't started to shrink, they’ll talk about retreatment.  That's why I'm confused about FSR...Gamma Knife is so much more of a dose of radiation, if that can be reaccomplished why not FSR?

Gary
« Last Edit: July 11, 2005, 06:24:51 am by GM »
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

russ

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Re: possible FSR failure
« Reply #5 on: July 10, 2005, 05:14:21 pm »
Hi GM
  I've heard of repeat GK sessions but not FSR. I guess one would have to ask Rigamontii about this. I do believe John Hopkins may be prudently conservative here and acting in the pts. best interest. My main question, however, is, if a treatment modality has shown repeated failure, why repeat it? That facial nerve may not get out unscathed even with the best NSs as at HEI.
  Take care!!
  Russ

Jack Palmer

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Re: possible FSR failure
« Reply #6 on: July 20, 2005, 05:00:02 pm »
I have had numerous experts Brackmann, Mckenna, Martuza, radiologist experts look at my films and they all say it's growing. (It's obvious to me too). Rigamonti at Johns Hopkins is trying to say it's "stable". Not likely. I also had my audiogram done today. Well, at the time of FSR Williams told me I might lose 10% of my hearing (it was normal then). Perhaps I had some sort of hearing problem THEN because as of today I only have 10% LEFT. - Jack

russ

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Re: possible FSR failure
« Reply #7 on: July 23, 2005, 02:45:40 pm »
Well Jack
  No doc here or medical advice but if it were me, I'd be seeking a neurosurgeon. JHH does well in that area also as well as MGH if you're living out that way.
  Best wishes to you! They'll get the sucker w/o facial complications!!   -Russ

Jack Palmer

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Re: possible FSR failure
« Reply #8 on: September 01, 2005, 06:19:09 pm »
Byron, what did JHH eventually say about whether or not your tumor was growing? Be careful because Rigamonti has told at least one other person (besides me) that theirs was not growing when, in fact, it was. - Jack

russ

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Re: possible FSR failure
« Reply #9 on: September 03, 2005, 01:48:15 pm »
Hi
  This is just a personal feeling of mine re: FSR providers. My feeling is they are so excited yet with the newness, univasiveness, nerve sparing, etc. etc. of FSR, it is truly difficult to obtain accurate statistics and diagnoses from them. They just really want so very much to succeed in tumor "control" which is a world apart from tumor death. Seems "control" is a subjective thing and "erradication" is objective. A tumor gone is easily noted on MRI.
  If the tumor can swell for 18 to 24 months post FSR, how do they really know what's going on if it appears larger on MRI and symptoms are increasing because of increased size? It must show central necrosis and some shrinkage during that time frame and, if not,  I am suspicious of a Tx failure.
  Re: Repeat radiation, seems if it failed once, it's likely to fail again. Especially with FSR. At least GK is considered surgery.
  Russ

jamie

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Re: possible FSR failure
« Reply #10 on: September 03, 2005, 08:57:14 pm »
Seems "control" is a subjective thing and "erradication" is objective. A tumor gone is easily noted on MRI.
 

There have been many instances in which a completely erradicated tumor has recurred. Control rates with radiosurgery and erradication rates by complete resection through microsurgery are very similar. On these boards and others, I see posts by those who have had their tumors completely resected surgically, went through all the hardships that went with it, only to be informed their tumor is growing back, and they usually look to radiosurgery for their second treatment. But they would be wrong if they said surgery doesn't work, it just didn't work for them.

I don't think any form of medical treatment is guaranteed, unfortunately we usually only hear about failures because most of those for whom treatment is succesfull move on from these boards and try and put the whole thing behind them. They have every right to do so, but should consider how much they could help and inspire others who are freshly going through those horrible times they are leaving behind them. I hope my recent CyberKnife is a success, just two days out and all the pain my jugular foramen schwannoma caused is gone. I feel like I did before my tumor started causing symptoms many months ago. I feel great and I hope it stays that way. I have promised myself I will do as Mark and a few others have done, and stay in touch on these boards, no matter the outcome, so that hopefully if CyberKnife was completely successfull, I can inform those newly diagnosed of this amazing new technology.
« Last Edit: September 04, 2005, 11:19:16 am by jamie »
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Mark

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Re: possible FSR failure
« Reply #11 on: September 04, 2005, 12:53:34 am »
 Posted by: Russ

Especially with FSR. At least GK is considered surgery.

Russ, help me understand your thoughts behind this comment.

 I assume you're trying to differentiate between radiosurgery and radiotherapy. The latter from my perspective would involve small doses, over a large number of days that are applied to a broad area to include healthy tissue and tumor such as IMRT or whole brain radiation. Radiosurgery would involve a machine that applies a high dose to a specific area ( i.e. the tumor). GK is limited to a one shot dose while FSR machines can do 3-5 but I certainly would consider both to be radiosurgery. I guess technically though , many people would only consider "surgery" to having a tumor cut out so maybe it all comes down to semantics which is less important than results at the end of the day. Also, I think if you asked virtually any radiation oncologist or neurosurgeon who practices radiosurgery they would utilize the terms tumor death and control interchangeably. I'm pretty sure none of them consider that measure as subjective. Ultimately, the results over the next 5, 10, 15 years and beyond will provide pretty objective results on the issue better than any of us can say in this forum

Mark






CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

russ

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Re: possible FSR failure
« Reply #12 on: September 04, 2005, 06:38:39 pm »
Hi Mark
  Actually, to me, GK should be classified radiotherapy rather than surgery if used for AN.
  Beings GK was originally designed to treat cancerous tumors, I imagine ( I really don't know ) a much higher dosage is used in that situation to make living cells instantly involiable as could be an acoustic neuroma if one weren't concerned about nerves and surrounding tissue; Thus probably the original and unchanged term for GK as being 'radiosurgery'.
  Re: The previous poster and surgery, yes, I know regrowth occurs in some but comparing immediate results between microsurgery and irradiation is most definitely objective.
  Seems to me therapy or control's definition may be somewhat subjective a thing depending on how deep the practioners bias.
  Really, most generally, Neurosurgeons and radio-oncologists are typically biased toward what they do, so statistics reported may border on the edges of reality.
  Kind of like Psychiatrists do their 'thing' and Neurologists, theirs, and they may be treating for the same health problem.
  Take care Mark!
  Russ

jamie

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Re: possible FSR failure
« Reply #13 on: September 05, 2005, 06:13:14 pm »
  Actually, to me, GK should be classified radiotherapy rather than surgery if used for AN.
  Beings GK was originally designed to treat cancerous tumors, I imagine ( I really don't know ) a much higher dosage is used in that situation to make living cells instantly involiable as could be an acoustic neuroma if one weren't concerned about nerves and surrounding tissue; Thus probably the original and unchanged term for GK as being 'radiosurgery'.

Actually, gamma knife was not originally designed to treat cancer at all:

"The Gamma Knife was invented by Dr. Lars Leksell in Stockholm about 30 years ago. It was originally designed to make small areas of destruction (lesions) deep in the brain in order to treat pain conditions and movement disorders. Then people started using it to treat small inoperable arteriovenous malformations of the brain. Finally, it was used to treat small benign tumors at the base of the skull. All of these were good indications for this technology. Since the proliferation of Gamma Knives in this country, which began in 1986, the indications for radiosurgery have expanded with attempts to treat other types of tumors such as metastatic tumors and small high grade gliomas."

http://www.braintumorfoundation.org/tumors/gamma.htm

Quote
Re: The previous poster and surgery, yes, I know regrowth occurs in some but comparing immediate results between microsurgery and irradiation is most definitely objective.

Don't know why you don't address me by name, it's clearly listed. Oh well. As for immediate results, sure, with surgery the tumor is usually removed immediately, barring that they don't have to leave some behind, which also happens a certain percentage of the time, in which case regrowth is almost certain if radiosurgery is not utilized after surgery. Immediately after CyberKnife, all the problems my tumor caused me were gone. I was back in the gym lifting as heavy as ever two days after. Of course my tumor wasn't an AN, and the nerves my schwannoma arose from are not as sensitive as hearing and balance nerves, so I can't speak for the AN experience.  However, my results with radiosurgery were immediate. If I had surgery, I'd still be in the very early stages of recovery, and as with radiosurgery, I would still have a 2-3% chance of regrowth. I don't think there's anything objective about that.

Quote
  Seems to me therapy or control's definition may be somewhat subjective a thing depending on how deep the practioners bias.
  Really, most generally, Neurosurgeons and radio-oncologists are typically biased toward what they do, so statistics reported may border on the edges of reality.
  Kind of like Psychiatrists do their 'thing' and Neurologists, theirs, and they may be treating for the same health problem.

If you think about it logically, gamma knife and surgery as practiced today have about the same amount of proven time behind them. Until microsurgery was developed, surgery for an AN had a very dismal prognosis, infections and death were very common. So long-term results and success of both treatments are about equal. However, due to the fact that recovery and post-treatment defecits are by far not equal, the bias of neurosurgeons is often accompanied by myths and misinformation about radiosurgery, because they know as technology advances, surgery will disappear. Who wants to spend all those years in school for nothing? 

Also, since Byron, the author of this thread has not posted since mid June, I take it his tumor was not growing, and he returned to other pursuits as he indicated. Note that it was his radiologist, not his treating physician, who thought it may still be growing. They are notorious for misreading radiosurgery results. Failure of radiosurgery after six years is very unlikely.
« Last Edit: September 05, 2005, 06:52:36 pm by jamie »
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

LizH

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Re: possible FSR failure
« Reply #14 on: August 15, 2006, 09:35:08 am »
I thinknmy FSR treatment 5 years ago failed too. The Neurologists I have seen in the last 3 months say yhe tumor is not growing based on MRI scans but I don't believe it. Why am I now having a movement disorder (lots of difficulty walking), no pain, no headaches, no tinnitus, no tingling?
53 years old now. AN size 4cm now
waiting for surgery date
FSR May 2001 when it was 2.9 cm
Dr. Laperriere
Princess Margaret Hospital
Toronto. Ontario. Canada