Well...the first nerve block only lasted 3 weeks - instead of the expected 8 weeks. The pain (for me debilitating migraine style headaches and throat pain) came back all at once once night. The pain was exactly as before 3/4 most days peaking to 6/7.
The doctor wanted to try 1 more nerve block to see if the nerve just needed some more time to calm down. This time I ramped down on my medicine (anti-convulsant & antidepressant) prior to the nerve block so we could see whether the nerve block alone could mask the pain.
Had the nerve block about 10 days ago - it was done at the ENT's office and was no worse than getting a Novocain injection at the dentist. No pain at all. For the first hour though - the initial fast acting anesthetic was disconcerting as I experienced paralysis of the swallowing muscles on the left side - *could not* swallow at all. I was so relieved when the swallowing ability came back - but it made me really concerned about rhizotomy and ablation surgery options, which my doctor is pushing.
This second block didn't prove to work - have the same pain as before and it looks like as the nerve block starts to wear off I will need to start back on medicine.
I know MVD is a much more serious surgery, but I am young and healthy (other than this issue) and I don't see why this doctor would be pushing rhizotomy which can (or definitely??) causes facial numbness or possible swallowing problems. Why is he shying away from recommending MVD? Is it just b/c he doesn't do that surgery and so he wants to recommend what he can do? Or is there a path that I should consider that starts with less invasive surgeries and works up to MVD eventually?
I tried something recently that is giving me alot of relief from my headaches. Have you ever tried Halls analgesic cough drops? It is really weird but it gets rid of my pain. Each time I have one suddenly pain in my eye goes away or diminishes.
My doctor prescribed me tegrotal while I was waiting for the MRI results 5 days he saw a artery compressing my nerve took me right off of it (it wasn’t helping anyways)he said it wouldn’t for my condition and scheduled me straight for Mvd he is doctor Christopher Duma and has the only mvd surgery for this condition on you tube I’m scheduled for oct 24 ,he seems to know a lot about the condition but can’t tell you to much til I get it done take care hope this helps some what
I just had had surgery at UPMC by Dr Michael Horowitz. I highly recommend him. I live 7 hours away and they got me right in. Over 2 weeks ago i had surgery and woke with no pain …no pain since. He also has u-tube videos. The MVD surgery was pioneered at that hospital. You can e-mail them. I have all their info if you want it. They also took my insurance. So so happy i finally did it. I am doing great post op too!
If you are unsure about what your present surgeon is recommending then you certainly have the right to have other opinions by good neurosurgeons, A rhizotomy destroys the function of the nerve. An MVD attempts to resolve the problem. I am in line for an MVD by Dr. Fukushima for a pure GN issue. Your problem may not be fixed by an MVD. You need to talk to a neurosurgeon. Best of luck!
Thanks everyone for the great responses - I definitely need to search around for a neurosurgeon. I'm happy to travel for surgery if need be. I agree with the post above - I have to find a MVD surgeon to tell me first if my atypical GPN pain would be helped by MVD or not. I don't have a vessel pressing against the nerve (at least according to my 3 MRIs) but I have also read that it can be fascia tissue that has bound up the nerve compressing it.
Hopefully I will get more news soon - I'm getting to the end of my rope.
Just a quick comment on the fascia tissue and and reason why your Dr. is reluctant to suggest the MVD...
A craniotomy is not something they take lightly... opening your skull and diddling around in there is very hazardous to say the least. But, after all else fails, it can be necessary. Clipping a nerve, especially at the nerve trunk can have lasting and sometimes unforeseen consequences. With that said, I have been through this twice... once for Glosso and another fro Trigeminal. It has had amazing results... but not without side effects. But I will take the side effects any day over what I was going through before. And yes, fascia tissue can be the problem. It was in my case and my neurosurgeon couldn't tell until he got inside my skull. It didn't show up on any of the MRIs or tests. He said it was like a thick, tough, milky colored mass... like scar tissue. The 3 to 4 hours surgery actually took 10 hours the first time and 12 hours the second time to clear it all out. I don't want to scare you with this, but know that it is possible and with the right doctors, life can become good again! Hang in there and I hope this helps.
jessica said:
Thanks everyone for the great responses - I definitely need to search around for a neurosurgeon. I'm happy to travel for surgery if need be. I agree with the post above - I have to find a MVD surgeon to tell me first if my atypical GPN pain would be helped by MVD or not. I don't have a vessel pressing against the nerve (at least according to my 3 MRIs) but I have also read that it can be fascia tissue that has bound up the nerve compressing it.
Hopefully I will get more news soon - I'm getting to the end of my rope.
Thanks so much for response - actually it doesn't scare me it all - it is very re-affirming to hear that others have had fascia issues (not vessel) and still have found relief. Di you like your surgeon - would you recommend him/her?
Time for an update - probably more for me than anything. I feel better when I can write this down somewhere to get it off my chest. It is 4 weeks and 2 days since the second nerve block. I am off all medicine - which has been awesome not having to deal with the side effects. But the pain is really starting to ramp up.
For the first time, in additional to the crazy headaches, and facial "aches", I am no consistently getting the stabbing pain everyone talks about. So far it is really quick, only a second or two - but wow is it startling. It's in the roof (palette) of my mouth on the same side as the rest of the pain. Also, the back third of my tongue feels completely numb - not a jabbing pain but numb - almost enough to require me to over-annunicate my words to be able to speak clearly.
So after this long journey - I am convinced of my diagnosis (although my doctor hasn't called it GPN but just says it is a GN nerve issue) and it's time for a more permanent treatment (surgery.) My concern is that my doctor is going to try to convince me to do an ablation or a rhizotomy b/c on my scans there isn't an obvious blood vessel looping issue and therefore refer me to an ENT surgeon he likes rather than to a neurosurgeon for a consult.
I want to make sure that I get to see a neurosurgeon so that I can hear the full complement of options, up to and including MVD. How do I express this to my doctor in a respectful but clear way. I find that doctor's don't often like being second guessed and I don't want to come off as a patient who has gone to the Google Search school of medicine and therefore thinks they know it all. I also haven't found on my searching any MVD specialty surgeons in Denver Metro - so I don't have anyone I could even ask to be referred to.
Just call your LMD and ask for a referral, so you can get additional opinions and options for treatment. It's your life and your insurance. My neurosurgeon said he hasn't done rhizotomies. He needs to look at your MRI.
See my previous reply.... Dr. Rostomily at University of Washington in Seattle. I know he is not in the Denver Metro area, but in my opinion and experience, he is the best!