Surgical treatment for Trigeminal Neuralgia?

Posted , 8 users are following.

Hi! So I am 26 and have had trigeminal neuralgia for over a year now and today visited a neurosurgeon. I have been given three options about what to do.

1) Have the injection, which apparently lasts only 5 years

2) Have Gamma Knife surgery which is better as it is non-invasive but success rate is 65%

3) Have MVD surgery which obviously carries risks but the success rate is much better.

I was told that the injection is usually given to older patients and that given my age I would have to have it repeatedly if that is the option I choose. The neurosurgeon suggested option 2 or option 3. Just wondering whether anyone else has had surgery and what they might recommend?  Would really appreciate any thoughts you might have as I am quite confused at the moment!

Thanks

Claire

 

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  • Posted

    Hello Claire,

    Sorry to hear. I've also had TN for many years. It whent into remission for me for 10 years but has come back. I'm not any expert but I suggest you do some searching on the Web. There are many case studies where you can see results of MVD but as you say it carries risks. If it can be controlled by drugs this is probably the safest option. The Gamma Knife carries less risk as I would understand but isn't as good as MVD. I'm afraid you have to take advice from the experts on this as it's difficult for the likes of you and I to weigh up the rissks.

    Alan 

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  • Posted

    Hi Claire. I had trigeminal neuralgia for over a year which was caused by arrested hydrocephalus, causing one branch of the nerve to stretch and thus cause the pain.

    This was only discovered as being a possible cause after going through all kinds of medication.. numerous scans and a lot of pain and upset. I had the same discussion about the various surgical options that you've had.

    Although the operation I had to get rid of the neuralgia, isn't one that will work for you (unless of course your scans show that you also have hydrocephalus) I thought I'd just write to let you know that the operation I had was pretty invasive (ETV - endoscopic third ventriculostomy) but I was told that, as a 30 year old, healthy male, I was the perfect person to go through with that kind of operation, and for it to likely be successful and with fewer risks involved, then if I had it as a 60+ year old.

    I would have thought that as a 26 year old yourself, that the benefits of having MVD would be your best choice, especially as I believe it has best rewards in terms of how long you could be potentially pain free for. 

    Tough decision and certainly one you'll need to research and think about but I wish you lots of luck in becoming pain free yourself. 

    Good luck.

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  • Posted

    Hi Claire

    I am sorry that you are suffering with this terrible affliction. I have told my story a couple of times on this forum, but since you are about to make a decision I will repeat it here as I think it worth while for you. I had TN 20 years ago and tried all the usual medications but no relief so I ended up having the MVD surgery. I was not offered the injection and Gamma Knife was not available at the time. The surgeon discovered that the problem was caused by the nerve coming in contact with a blood vessel. This was corrected by the insertion of tissue ensuring that they were seperated from each other. The surgery was a great success and the pain disappeared completely with no after effects whatsoever. You are so young that I sincerely hope you have the same success that I had. In my case unfortunately the TN returned about three years ago and eventually I decided to have the surgery again. On this occasion I'm afraid I had to have the nerve cut as the surgeon could not locate the problem. The after effects in my case are quite severe and I would advise anybody considering surgery to consult with the surgeon and discuss the possible after effects in depth. Sorry to be so long winded with this but I felt it worthwhile letting you know my experience. Best of luck!

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  • Posted

    Hi Claire,

    I am in my mid 50s. Don't laugh, it comes soon enough. TN started 7 years ago. Diagnosed correctly eventually by an endodontist. He sent me direct to a neurologist, not a neurosergeon. Could be a surgeon is going to recommend surgery. Watch out for that. If you have not already, See a neurologist. But if a neurologist has forwarded you to a surgeon, OK.

    There are horror stories out there about MVD results!, but perhaps you are the right candidate for it. So I'm recommending you have both doctor's opinions, and read about bad things that CAN result from MVD. Never heard of the 5 year injection. Read read read about everything.

    Eddie13

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  • Posted

    Try Neural Prolotherapy injections. I had TN for 18yrs. 

    In my opinion,  you could try gamma knife first, but try not to do the surgery (mvd) it has bad consequences

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    • Posted

      The injection is called Dextrose (sugar) read up about it. I tried 2 injections, and so far the pain is going down tremendously. in my opinion it's the safest way to go
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  • Posted

    Claire, (and anyone else)

    my wife was diagnosed with atypical (type 2) TN, affecting mostly the 2nd and 3rd branches bi-laterially, just over three years ago. For the most part it has been managed with Tegretol, Gabapentin and the typical cocktail of Rx usually perscribed for severe TN. We tried the glycerol rhizotomy, nerve blocks and a host of usual treatments. Nothing worked, there were times when the pain was SO bad that not even her Dilaudid tablets would help and I'd have to run her into the ER so they could run a higher dose IV. That was our life. The first break through came when she discovered Medical Marajuana (don't judge). For her it would break the ''lightening bolts'' in a fraction of the time that even the opiate pain Rx's did...and it started to work in seconds. Typically she would only use it 3-4 times a month, but it stopped the late night trips to the ER. I works!

    The thing is all the Meds still mess with her, so we kept looking. Last month the Nero-surgery team at Kaiser in Redwood City put her on a trial with a Spinal Cord Stimulator System (implants planted under the scalp near the nerve branches attached to an imbedded ''pacemaker'' like device). It worked, after over 3 years she was pain free. Next month she will have the device permanently installed and, based on the trial results she will be able to wean off the drugs and have her life back. We still have to see if she CAN go drug free, but this device has given us more hope, and results than we've had in years.

    Bottom line...ask YOUR Dr.!

    Ed

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