Saw my neurosurgeon today to review the MRI that I had right before Christmas. My doctor showed me the blood vessel resting right on the nerve. Plain as day! He said gamma knife is the best surgery for me at this time. Scheduled for March 3. I'm thankful that it is so obvious ... No mysteries. I definitely have TN; the test proves it. He said that I may need MVD down the road but it's not appropriate at this point in time. The procedure may also help further reduce my migraines. He said that the biggest risk is a degree of numbness afterwards, but most people are willing to tolerate a little numbness to this horrific pain.
I told him that I had read "Striking Back" and that I had joined this forum. He said, "That's good -- Now I know you've done your homework." So I would recommend that you purchase and read this book. It's available from Amazon.
He also told me that this procedure is only done at one place in the Richmond area. If he couldn't do it here, I'd be having it done at Johns Hopkins. I find that pretty amazing ...
He asked me, "Now, are you SURE you want to proceed with this?" And I replied, "Yes indeed. When something interferes with your quality of life, makes you take a bunch of meds that interfere with your life, affects your vision ... It's time to DO something about it."
I am excited about kicking TN's butt instead of it kicking mine!
Cindy, I know you are well into the process and headed for surgery soon. But please also be aware that Gamma Knife fails within three years for about half of those with typical TN who are initially successful. Stats for Atypical TN are even less optimistic. This statistic is from the practice standard of the International Radio Surgery Association, and it's worth discussing with your neurosurgeon.
Sorry to rain on your parade, but I thought you have a right to be informed of the performance statistics for a procedure you are about to do.
Regards, Red
Good luck let’s be positive! Its going to work!!! Pleaseeeee let us know all the details!! I’ll be thinking of you!
I can't help but agree with Red's sentiments, cindylou this sound very wrong. Gamma knife is a destructive procedure, and even your neuro admits you may have to have MVD later.
Sorry to be possibly depressing, but this sounds so wrong. If gamma knife fails then bets hedged there is always MVD, which might work if we haven't damaged your trigeminal complex with Gamma Knife.
This has to be one of the worst approaches to treatment I have heard to date, is this common?
Sorry I realise you want to be pain free, but this is just horrible, horrible.
No mysteries, plenty. Sorry Cindy but just my opinion, but I reckon a plumber (no disrespect to plumbers), could come up with the same.
Horrible ( 3x I know but that is how strongly I feel)
Can’t y’all just be happy for her? Obviously her Dr thinks its the right procedure for her right now as she already stated. Thousands of people have success with gamma knife…there are risk with everything we do. Let her know we support her in her moment of being happy , not bring her down. Just my thoughts
Why would anyone who thinks TN is caused by blood vessel compression ' and found it' offer you a destructive procedure first?? You're, if you go through with this, opening yourself up to anaesthesia delorosa, or however it is spelt. Your neuro is playing roulette, and frankly, in my opinion needs sacking. Horrible. Maybe a little strong, sorry.
Highly top notch surgeon I saw told me AD is a 1 in 800,000 chance. You have a better chance of being struck by lightening
Cindy is this the first MRI you’ve have done for tn?
With all due respect Jennifer, your top notch surgeon doesn't even know what causes TN, hence let alone the chances of AD
I am no doctor but from the thousands of hours of research I've done including reading many research papers, I would have to agree with Red and Aiculsamoth regarding Gamma Knife.
Because since TN was first described, many years ago, and hence described, it has been a syndrome i.e. 'diagnosed' by signs and symptoms, there is no medical test as I'm sure you're aware, otherwise at this point in time you would have undergone such a test. As such TN, means trigeminal neuralgia, which means symptoms, primarily restricted to pain in the trigeminal nerve region of the face. The cause is a hypothesis within the medical profession, and if you were to ask your 'top notch surgeon', and I'm not trying to be rude to you, he couldn't claim otherwise, which when I hear the 'answers' to the problem, have to be taken with a dumper truck of salt.
Either way, Jennifer wishing you well.
Jennifer Muir said:
Will Gamma Knife Surgery work on someone who has had success from Sphenoplatine Ganglion and Stellate blocks? I gather from my research if these blocks are successful you generally don't have TN but some other atypical facial pain.
The pessimism in your posts is quite consistent but an oddity to me. The pseudoscience around the cause and cure for Tn is pure conjecture , and the 'panacea' available today are derivative surgeries that do nothing to treat the underlining cause of the condition and can many times make things worse. Everyone on this board is aware of this, why do you need to remind the hopeful time and time again of the dangers they undoubtedly already are aware of.
Richard A. "Red" Lawhern said:
Cindy, I know you are well into the process and headed for surgery soon. But please also be aware that Gamma Knife fails within three years for about half of those with typical TN who are initially successful. Stats for Atypical TN are even less optimistic. This statistic is from the practice standard of the International Radio Surgery Association, and it's worth discussing with your neurosurgeon.
Sorry to rain on your parade, but I thought you have a right to be informed of the performance statistics for a procedure you are about to do.
Regards, Red
Your contradicting yourself… Then whose to say MVD will be successful? From meeting people online I’ve spoken to people who also had obvious compression on MRI and the procedure failed…its all hit or miss when it comes to tn.
The data is so fragmented and sometimes there are not enough 'normalized' data points to make a proper conclusion. Even when websites and institutions cite a high 'success' rate, there are nuances and conditions to the way the outcome is measured.
Personally I do not think everyone fully understands the data or the 'success' rates or exact meaning of success. A procedure that might give you 1-3 years of relief and then the pain returns and is much worse may not show that way in the statements many websites/institutions make.
The second thing I'd like to mention is that I personally do not place much weight on what doctors or top medical facilities say, especially when it comes to TN. It is very hard in my experience to find a doctor who is willing to consider something other than prescribing an anticonvulsant to you and get you out the door. I would rather get 20 doctor opinions and then average them out.
Case in point, I went to the facial pain/headache clinic at Stanford. This was after my initial neurologist couldn't understand the extra research and questions I was presenting to him regarding TN, c-fibers, denervation, capsaicin treatment, etc. So he referred me to Stanford with the intent that their clinic would be open to more research oriented exploration. Stanford is a research institution and supposed to be one of the best. I went there with a lot of research I had done regarding TN, and with a lot of questions that I was hoping to discuss with the doctor there. The doctor basically took no interest in the questions and research I had, and just prescribed me Oxcarbazepine. That seems to be the norm, I guess we can't blame them.
Andrew LeMarc said:
The pessimism in your posts is quite consistent but an oddity to me. The pseudoscience around the cause and cure for Tn is pure conjecture , and the 'panacea' available today are derivative surgeries that do nothing to treat the underlining cause of the condition and can many times make things worse. Everyone on this board is aware of this, why do you need to remind the hopeful time and time again of the dangers they undoubtedly already are aware of.
Richard A. "Red" Lawhern said:
Cindy, I know you are well into the process and headed for surgery soon. But please also be aware that Gamma Knife fails within three years for about half of those with typical TN who are initially successful. Stats for Atypical TN are even less optimistic. This statistic is from the practice standard of the International Radio Surgery Association, and it's worth discussing with your neurosurgeon.
Sorry to rain on your parade, but I thought you have a right to be informed of the performance statistics for a procedure you are about to do.
Regards, Red
This is an extremely interesting thread, but could everyone please bear in mind that at the top of the page is a person who is in pain, emotionally fragile, clinging to hope, and probably frightened too. Thank you to those who have chosen their words carefully, while not disguising your feelings or withholding your knowledge.
CindyLou, you've received some opinions that may cause you to doubt your decision. One of the posters very sagely suggested that you discuss the information which he shared with your surgeon.
Please, everyone, let's keep this thread informative and honest, but first and foremost, supportive of CindyLou. If you wish to debate points with other posters, it would be best for you to do that by starting another thread.
Seenie from Moderator Support
If I may try to add a calming note: I hate to rain on CindyLou's parade or anybody else's, but the statistic I offered on Gamma Knife wasn't mine. It was from the 2009 treatment standards published by the International Radio Surgery Association. We've also heard in other discussion threads of articles in medical literature which report that the number of GK procedures has been falling off in recent years. Those articles didn't speculate on the cause for the drop, but it's plausible that one reason has been that a majority of patients haven't had long term pain relief beyond three years. And there is a lifetime limit of two GK procedures due to concerns for total radiation exposure.
One may reasonably question statistics published by a single doctor about outcomes of their practice. But the stats on MVD have been reported independently in prominent medical journals by multiple doctors in several countries. In typical TN, the rate of major pain relief or cessation is above 90% with experienced surgical teams. About 70% of all successful patients are still pain free or with pain greatly reduced seven years later. Some sources quote the pain-free rate at 50% at 12 years, continuing steady after that. Stats on Atypical TN aren't as well established, but appear to be about half as successful for half as long.
At one time, Gamma Knife was advertised as "non-invasive" surgery for TN pain. And in one sense, it is -- in that no hole is made through the skull. But no fewer than three neurosurgeons have shared with me their personal experience with doing MVD as a second procedure following recurrence of pain after a Gamma Knife. GK does create a lesion on and nearby the trigeminal nerve. In some people, the lesion is extensive enough to cause arachnoiditis, where the nerve gets attached to nearby soft tissue and is almost impossible to separate during later surgeries. Thus the procedure should be considered "destructive" even if it isn't invasive. And the trends reported in literature are clearly toward much greater caution in the use of destructive procedures because they create lasting damage and the recurrence of pain is harder to predict.
I know this is a tough subject for many people. And I realize that some in the forum are convinced that we really don't know the causes of all cases of TN. I don't disrespect anyone who feels they don't want to undergo such a procedure. But I also believe from 20 years of talking to patients themselves, that MVD has been and pretty much remains the "gold standard" for people who aren't able to get adequate pain management or can't deal with medication side effects.
Cindy Lou will ultimately make the decision on surgery in consultation with her doctor. I am merely suggesting that the information offered here is worth discussing before a final decision to move ahead.
Respectfully,
Red
Points well taken, Red. Supportive feedback and reflection is one of the most valuable functions of our community.
Cindy Lou will ultimately make the decision on surgery in consultation with her doctor. I am merely suggesting that the information offered here is worth discussing before a final decision to move ahead.
Thank you for this, and thank you everyone for offering words of kindness and support at a time which is bound to be a difficult one for CindyLou.
S
No. My first was in December 2014. The neurosurgeon didn't see anything on it and ordered another in December 2015.
Jennifer Muir said:
Cindy is this the first MRI you've have done for tn?