It's been almost 2 weeks (Aug 2) since my nerve block was done for my left side. Since the nerve block is done under anesthesia, the ENT removed my tonsils at the same time.
It turned out my tonsils were even more infected than the Dr. suspected, both were abscessed, and I only bring this up b/c from what he explained is that tonsil runs over the GN at the back of the throat. Point being that perhaps inflammation/abscess could have been pushing against the GN at that point.
The nerve block itself did work! Hallelujah - first time in 18 months without debilitating headaches. The most exciting part for me is that this gives me a definitive diagnosis of GPN since my symptoms do not match the typical symptoms.
I am supposed to get about 2 months of relief from the nerve block and then see:
1) Can this be managed by drugs alone - I already know it can't and I don't want to be on this many drugs for the rest of my life
2)Perhaps the block + tonsillectomy will have long term effects to eliminate the pain - I'm doubtful on this one - but in theory there is a chance.
3)Consider surgery - my doctor seems to be more about the Rhizotomy - but doesn't that take away sensation and function of the glosso nerve? I'd rather go through the more pain initially with MVD surgery than lose functionality at age 39...
Thanks for listening - appreciate any feedback - especially from anyone who has had or was counseled against having Rhizotomy surgery.
So glad the nerve block seems to be working for you! I had MVD on May 10 of this year. Best thing I ever did - I am totally pain free and can enjoy my life again. I have posted my experience previously. My surgeon did not want to do a nerve block since it was only temporary.
Good luck to you - let me know if I can provide you with any additional information.
Congrats Jesssica. Anything that makes you painfree is a great thing. Even short term can be such a relief. I wish you luck in the future. Like you said, possibly this will be a long term solution, cross your fingers but even if it isn't some total relief for a little while sounds wonderful. Great call for him to remove those tonsils, that gives you a little extra to hold out on. Again, good luck for a pain free future and enjoy your pain free time now.
While MVD is a more serious surgery than rhizotomy, I just can't imagine going with the rhizotomy as a trade-off. From what I understand, cutting the nerve can result in difficulting swallowing, facial numbness, etc. I am really surprised that my doctor suggested this as a solution rather than "those scary surgeries I may have read about online" (he actually said that.)
If his opinion is rhizotomy, I will be making an appointment for a second opinion with one of the doctor's that have been recommended by those on this site.
-Jessica taylor210 said:
So glad the nerve block seems to be working for you! I had MVD on May 10 of this year. Best thing I ever did - I am totally pain free and can enjoy my life again. I have posted my experience previously. My surgeon did not want to do a nerve block since it was only temporary.
Good luck to you - let me know if I can provide you with any additional information.
I was wondering how you are doing with your pain. I think we have similar stories. I have constant headache for 12 months already. It is pain that moves from behind the eye to back upper teeth to throat and tongue. there is some neck pain too. I was diagnosed with chronic daily migraine but i do not believe that is the case. No drugs help the pain. Pain is 3-4 in intensity. The headache started after wisdom teeth infection. By the way i have tonsillitus that does not go away.
We do have similar stories. My headaches were only helped once I was referred to a neurologist and given migraine related medicines. I take both an anti-depressant (SSRIs help with migraines) and a anti-seizure (also help with chronic migraines). Regular medicine, including narcotics, won't touch my headaches. Because of this I was initially diagnosed with Chronic Daily Migraine.
Have you been prescribed any migraine meds?
My intensity started at a 2/3 and within 3 months was at a debilitating 7/8 without medication. With medication, I go back and forth within the 2-4 range.
I'm glad I had my tonsils removed - it turns out they were really infected. It doesn't seem like it will have a long-term effect for me - but it is worth considering because the glosso nerve runs near/behind the tonsils.
The nerve block is supposed to last for 2 months. It's not supposed to be a permanent solution - but my doctor explained that perhaps the nerve is just agitated and can't calm itself - so it was worth it for me to try. Also with headaches as a primary symptom, which doesn't seem standard if was good to get a confirmation that this nerve was the problem.
Unfortunately, my nerve block has only lasted for 3 weeks instead of 2 months. I will be going back for one more block to see if that helps for longer - if not, which is what I expect - I will then be searching for a surgeon for a more permanent solution.
Yeah. I pretty much have the same symptoms. I never had migraines until this headache/migraine. I had a first migraine with aura and since then my migraine/headache does not go away. Neurologists first decided it is migraine, then that I have transformed migraine or chronic daily headache. Without drugs my head hurts around 6-7 and with drugs it is 2-4.
That sucks that your nerve block lasted only 2 wees. What doctor does this nerve block? Dentist?
Does spicy food ever relieve your pain? How bad do your eyes hurt? What hurts most ears or eyes? For me my eyes, upper back teeth and ears hurt the most. Maybe the nerve block worked because the glassopharyngeal nerve is connected to trigeminal nerve and chronic daily headache is the disease of trigeminal nerve?
My tonsils were just like that and I just thought the white gunk was because I have allergies - I never thought mine were infected either. But I went to the Ear, Nose, and Throat doctor my neurologist recommended and he said they had to come out. He did the nerve block during the tonsillectomy. So look for an ENT doctor that is a surgeon (Head and Neck Surgery).
I really doubt it is TMJ and wouldn't accept that as a diagnosis. I had TMJ and successfully had it fixed through braces about 8 years ago - so clearly mine is not TMJ related.
These problems are rare and I find doctors go with the common issues and some tend to forget to look for the less common. My diagnosis only came when I was referred to a Neurologist that specialized in Headaches and the very first day he say that he thought my headache was a symptom of my issues and not the primary diagnosis - at least partially b/c Chronic Daily Migraine don't just "show up" it's a progressive disease over time.
Your medications are similar to mine - I am just on a much higher dosage. Keep fighting and go to different doctors until you get satisfactory answers.
My MVD was totally successful. I had the surgery on 12/04/2004. I would recommend it to anyone. I do occasionally have ear pain, but it's just for seconds. I am so very Thankful !!!
Your situation may be different than mine, since my GPN is very typical. I asked my surgeon Wednesday what he recommended for me, and he said MVD. I asked if he has done rhizotomies, he said no. My GPN surgery is set for about 6 weeks. I prefer the idea of preserving as much function as possible. He said about 10% of patients after MVD for GPN have temporary weakness of the nerve resulting in hoarseness or difficulty swallowing, might need a temporary gastric feeding tube, maybe 2 months, he said. Yikes...