I was lucky, so lucky, to get a quick diagnosis, and a succesful MVD, just 7 months after my TN diagnosis. My extremely nieve question is- why doesn't everyone with TN get an MVD? I can't wait to hear the answers to not be nieve on this.
Thank you for your time!
Love,
Sara
My mum has just been told she can have the op, and is now on the 4-6 month waiting list. She has suffered from TN for 16 years now
Some people aren't candidates because their MRI does not show a compression on the nerve.
A few surgeons will operate anyway, but from what I've read, that's unusual.
I beleive the doctors use these operations as a last resort.......my pain mangement doctor says oh there is a lot of medications we can try.....yeah right....we all want a fast fix and right now I am in pain....I could go into detail, but it is a long story considering the short amount of time, I was diagnosed with this.
Not everyone responds to what ever the doctor recommends........lets face it we are their guinea pig since they don't know either
Sorry I seem grumpy…but I am
Part of the issue is the neurologist and neurosurgeons are polar op posits and rarely agree on treatment. My neurologist doesn’t even know I have had the MD done. Also, you have to have a neurosurgeon willing to take his time and look past the obvious compression while he is there. It seems most TN’s have more than one compression. This results in multiple surgeries.
Thank you for your comments. It frustrates me so much that treatment is not simple for everyone- and I would certainly not even call mine simple. I did my own search in the Washington DC area with neurosurgeons, until I met the perfect fit at Georgetown. I wish everyone could do the same. I will stay with him always. I know Ill need treatment again. I’m getting twinges back- a reminder that TN doesn’t just go away. My blessings to you all.
I wonder the same thing all the time Sara. I've done a lot of reading and research and I always come back to the same question. I guess it is a matter of severity, drug treatment reactions, age, etc. Even though this surgery is relatively routine in nature, it is opening the cranium which makes it very risky as well.
Personally, I am only 40. I can't see myself and my liver processing the meds for the next 30 years or so. Even though I am atypical and the MVD sucess rate is lower, I think - why not? If it works fantastic and if it doesn't, am I really worse off?
I don't think your question is naive. I still don't understand why MVD is not an option for atypical.
Elaine
Sara and all,
MVD has a very good track record with Type I, but not with Type II Atypical. MRIs don't always show compression, so they aren't the be all end all as far as diagnosis for MVD.
You know what, I have wondered the same thing myself. I mean, why go through all the pain and suffering when there is a known permanent fix out there. I myself am trying to get a referral to a surgeon and so far Neurologist keeps saying "Surgery just doesn't work." Not sure what planet he is from!!
Love Ali
There are a couple of valid reasons why even neurosurgeons do not recommend immediate use of MVD surgery. (a) About 10-15% of all MVD patients experience bothersome long term side effects which include facial numbness, Anesthesia Delourosa, loss of tear reflex in the eye, or loss of hearing. Fortunately the latter two effects are becoming rare as the procedure is more widely used and trained. However, (b), pain may recur even after years of pain-free function -- and when it does recur, the chances are lower of an immediately successful return to pain free status following any second procedure. Thus many neurosurgeons advise delaying MVD until it is clear that medications are not working with acceptable effect.
These things being said, there is one other trend to be aware of. There are articles which demonstrate a highly similar rate of positive outcomes for MVD when used with Atypical TN versus Typical TN. One of these articles is in the TN Association Knowledge Base, and it's worth joining TNA to read it.
Regards and best,
Red