Gamma knife versus MVD

[Jane]

This is my first initiated post (i think) - I've been reading for over a year and responding here and there, but now have come to the point where I am need to join the land of the actively involved. It is way past time, but I am one of those wall flower types.

I am 52 and live with Saber, a husky/malamute mix, and 3 cats in Kentucky. I absolutely HATE not having a brain almost as much as I hate the tn pain monster.

I've been in the typical drug/pain induced tn fogs for over a year since I was finally diagnosed with tn (although I figure I have had it for at least a couple of years). A very long and involved story with meds (the short story being between severe allergies and intolerance I can't do them at high enough doses for any kind of relief anymore) and a massive exacerbation of the tn in the past month has brought me to the point of needing surgery.

I have done lots and lots and lots of reading of the medical literature (i'm a nurse and a medical librarian when I have a brain) and over the past year have read all the posts of people's experiences. But now that it comes down to me *right now* and I am in a real crisis mode, it is so hard to think straight and make a decision. And of course now all the old posts from brain talk are gone so I can't go back and review them.

I am currently visiting family in southern calif and meeting with docs out here discussing options. It should help that my nephew-in-law is a fresh out of residency neurosurgeon, right? I'm not so sure. Cuz I am really leaning toward the mvd and he is really pushing the gamma knife.

So my question to ya'll is what do you think of gamma knife versus mvd? I know that mvd is still considered the gold standard for us "youngsters" (i sure wish i felt young!) in otherwise good health. But the literature is really beginning to tout the wonders of gamma knife (and i use that term generically). And I know I will hear the doctors' take on it. What i need are real people's experiences.Ya'll are the ones who really know!!!

Thanks for plowing thru this tome and for providing your insight. Your help is greatly appreciated!!!!!!

Jane from Kentucky


#$#%^% I just see how i have gone on and on and on and not gotten to the point. Sorry about that. Anyway, my gut tells me to go for the mvd.

[KIMMERS]

Jane,

I would go with your gut. I've had the MVD twice and gamma knife once. The MVD twice because I had bilateral TN. I don't think gamma knife is a good outcome for TN. I personally would never do it again. I thought it was a waste of my time and gave me too much exposure to radiation for nothing.

I think your chances of having a successful MVD farther out weight the chances of a successful Gamma Knife. It's a lot more invasive to have a MVD, but so welll worth it in the long run.

Best of luck to you.

Kim

[JeanC]

... And of course now all the old posts from brain talk are gone so I can't go back and review them....

Anyway, my gut tells me to go for the mvd.

Hi, Jane,

Welcome to the posting side! Just to confuse the issue for you - you CAN get to some of the old posts through Google. Go to the Google home page (www.google.com) and paste or type the following line into the search box (whole thing - and you need the space between 'net' and the close quote) -

Gamma TN "site:brain.hastypastry.net "

That will give you a bunch of "hits" but don't click on the link to the hit - go to the end of the text accompanying it and click on the word "cached". This will take you to what Google has in its archives. If you put in "MVD" in place of "Gamma" and search again, you'll get hits for MVD. Remember to click on the word "cached", not the link itself as that tries to take you to the old forum, which isn't back, yet (though I'm told it will be coming back as an archive - yay!). You can experiment and see what else you can find or narrow the search by changing the words Gamma and TN.

Get all the info you can from the surgeons you talk with this week and bear in mind which option is their specialty when they respond - that's what they'll push because that's what they know. Get their personal success rates - especially long term (10 plus years out) - and the total number of people with TN on whom they've performed their procedure and those success rates (Gamma Knife is great for zapping tumors, but it is a destructive procedure and what they're zapping in your case is the Trigeminal Nerve root). And get the best surgeon you can whatever you decide.

It's your decision and one with which you have to live (not your nephew-in-law, though we know he means well). I shouldn't really butt in here, as I don't have TN and am not a candidate for surgery of any kind, but if it were me, my two cents' worth would be (and that's all it is - still your decision) - I'd go with my gut. I didn't when I should have - figured the dentist knew better - and that's what brought me here. But still it's your decision - and a tough one, that's for sure.

I've just come from the TNA Conference in Portland, OR - wish you could have been there to hear from all the experts - and the patients, too!

Best to you in your info gathering and decision making! I know others will be along with real first hand information/experience for you.

Jean :)

P.S. Also, notice whether your TN is better while you're in California - just wondering if the cold weather, even in Kentucky, is part of your current flare-up, though from what you say, it sounds like it's more than just that.

[EE03]

Jane,

I feel for you! My current neuro keeps pushing surgery on me and for my own reasons, I'm not going there now. He first tried to push me to the rhizotomy and I say hands down, no way. I have prior experience with destructive nerve procedures and refused to do it. Then discussions of MVD - sometime in the future, maybe, but only when I get to choose the surgeon and know he will do the procedure (no teaching facilities here) and when he has a track record and does post procedure follow-ups, etc.... I asked about GK and my neuro doesn't think it should be bothered with since you have to wait to see if it works and he says theres no long term relief associated with it.

Just what I can convey and my 2 cents!
Check out Striking Back if you haven't already!
Good luck! E!

[ella138]

Hey Jane
I'm sorry you have to make this decison...and believe me I know what a big decision it is. I made the decision to go through the MVD. I know it is far more invasive than gamma, but the odds of the results being more favorable than gamma knife are substantial. I am 49 and went through this last summer. I am still pain and medication free, an I don't take any pain-free day for granted.
Under the newbie thread in the stickys, I have a post as to why I chose to have an MVD. Also I kept a diary of my recuperation which (thanks to Jean) is also a sticky. I think if you read through it, you will see the recovery is not to bad at all. Of course, I had no previous health issues and an excellent experienced MVD surgeon. I think those 2 things, above all, are the most important considerations. Also the type of TN you have has a bearing on the odds of a successful turn out. MVD works best with Classic TN. Atypical facial pain is a bit more of a risk as it is not quite as cut and dried. Good luck. Please feel free to ask anything, anytime. Knowledge is strength!

[Jane]

Thans for the input you all. I have decided on the mvd - it is just down to who and where. And one of the big factors will be who can get me on the schedule the quickest!!! No, I really do have enough sense left to know that is not the most important criteria. I have met with one neuro I really like and he has a very good track record. Meet with another later this week. If there is anyone from the Los Angeles/Orange County area with any neuro suggestions, please feel free to send me a private post (I am pretty sure I am set up to do that!).

The old posts have been great (thanks for the tip on finding) as has reading through the post-mvd diary that is posted on the site. Thanks so much to those of you who have shared!! It is really so very helpful to those of us going thru it now.

I'll post again when I have a surgery date!! Can't be too soon for me!!!!!

jane

[sharralin]

Hi Jane,
From folks I have talked to, the success of MVD seems to depend on what caused your TN in the first place. If it just developed out of nowhere, chances are good that it's caused by pressure on the nerve and you have a good chance of relief from MVD. But, if your TN resulted from an injury, e.g. dental work, the MVD doesn't seem to help.

Personally, I had Gamma Knife (my tn was from dental work) I waited seven months for my appointment and every day planned my new pain free life; this was maybe ten years ago and the statistics were fantastic. The day I got there (had to go to Florida for it, at the Walt Disney Cancer Center in Orlando), the surgeon I had talked with was out, and his replacement told me that the damage to my nerve was too extensive, and I probably would not have a good result. Tears rolled down my face for hours after that; they gave me valium in my IV. Well, he was right. For seven months the pain got worse and then stabilized at the new higher level.

The worst thing I ever did was have "Giggle" procedures, glycerol injections. Absolute nightmare, put me in a world of pain I could not have even imagined, permanently; and the surgeon dumped me afterward. Would not prescribe for me, would not see me and would not talk to me. I ended up in the hospital for pain control. Was there five days and even though he was there every morning he never saw me. I passed him by inches in the hallway and he turned his back to me. My new neurologist, the guy who was on call when I went in, was flabbergasted.

About fifteen years or so ago I had an acupuncture session that gave me four pain free hours. It was a miracle, the first time I'd been pain free in seven years. I couldn't keep going, he was two hours away and eighty bucks per session and I was a single mom of four kids, could no way afford it. This past month I've been having acupuncture once a week, and finally have caught on that it's made it worse. (I've already been in a bad episode with an infected ear which has developed a mass which needs surgical removal.) I had acupuncture on Thursday and have been in agony ever since, even loaded to the gills on pain meds. There will be no more acupuncture for me. Fifteen years ago it might have really worked, but not now.

Sorry to run on, and off the point too. There are people who have been really helped by the MVD, but I don't think I've ever heard anyone have anything more than temporary relief from the gamma kife. So much for the statistics. Have you ever considered acupuncture? I think if you do it early enough, there is a good chance of it working. Sorry for running on so; it's the drugs I think. It feels like there is a demon with a sharp ice pick working on my ear, over and over and over and over.....

Good wishes your way; I hope you are one of the ones for whom MVD is the miracle cure.
cherie (sharralin)

[ella138]

If there is anyone from the Los Angeles/Orange County area with any neuro suggestions, please feel free to send me a private post (I am pretty sure I am set up to do that!).


Hi Jane
I just found this on the "endthepain" web site. This neurosurgeon is on the TNA advisory board and I think he is in your area!

Mark E. Linskey, MD
TNA Medical Advisory Board Member

Associate Professor and Chairman
Department of Neurological Surgery,
UCI Medical Center
101 The City Dr. S., Bldg. 56, #400
Orange, CA 92868
Tel: 714-456-6966
Fax: 714-456-8212
Web Address: http://neurosurgery.uci.edu
Clinical Background
Medical School :
Columbia University College of Physicians & Surgeons, New York, NY
Internship :
University Health Centers of Pittsburgh, Pittsburgh, PA
Residency :
University Health Centers of Pittsburgh, Pittsburgh, PA
Fellowship
Ludwig Institute for Cancer Research, London
Pittsburgh Cancer Institute, Pittsburgh, PA
Board Certification :
Neurological Surgeons
Face Pain Treatments provided
°Microvascular Decompression (MVD)
°Gamma Knife
°Stereotactic Radiosurgery,
°Glycerol Rhizotomy
°Radiofrequency Lesioning

[Jane]

Thanks Ella, -- As a matter of fact, I am seeing him tomorrow! It took some doing, but I was nicely persistent and was able to get an appointment within a two week window of when I was going to be out here. I had previously scheduled an appointment in December, but it had gotten sooooo bad, I just couldn't wait that long.

It's good to have someone else recommend the doc that I had found, too. I'll let you know what he says!

[Jane]

Sorry for running on so; it's the drugs I think. .....


Cherie,

No need to apologize -- it is in the "running on " that we are able to ventilate a little sometimes and that others are often able to learn. On topic, off topic -- it is all relevant. I appreciate your thoughts. And I feel for you! Going through all of this as a single mom with four kids is unimagineable to me. It is so hard to do it as a single person with a dog and three cats to care for.

It sounds like the doctor who dropped you couldn't stand the fact that he wasn't able to help you and in fact made things worse. It was all about him instead of his patients. Too bad. But hopefully you have come across people who have kind of cancelled out his lack of caring by caring at times you really didn't expect it? Or if you haven't yet, you will someday.

I have pretty much decided on the MVD. I know nothing is a 100% miracle cure, but I think this is my best bet. I did consider acupuncture, but it is one of those things you have to keep on doing. I want the "one time cure all" -- that again, I know is not necessarily going to happen, but at least may last for quite a few years.

Jane

[sharralin]

Dear Jane,
Thank you. It sounds to me like you haven't had tn very long. Is that so? I hope so. It seems that this thing gets worse as time goes by, the damage spreads. At least that was true for me. When it started it was one straight line directly to a tooth socket; now it's the entire side of my face; currently in my ear where there is a cholesteatoma waiting to be removed. Long story, currently in crisis. I am glad you have decided to go for the MVD. I have a really good feeling that this is the right thing for you, and hey: let's go for the cure, the forever cure. It does happen. I think the reason we don't hear more about it is because once cured, people move on with their lives and we just don't hear from them. If you're not in pain, you are unlikely to go to pain sites.
Good luck, sweetheart!
cherie (aka sharralin)