Any fellow pilots in here? And how is neck movement affected by Craniotomy long term?

Welcome New Member Introductions
1

Hi all…

I guess a quick intro and brief synopsis is in order… I had my first bout with TN when I was 24, back when I was living in the UK. My doctor at the time completely misdiagnosed it as a simple “sinus infection”. Luckily, it was fairly mild, and didn’t last long, and who was I to question a doctor?

Anyway, I would get the same symptoms about once a year and they got worse each time, but again, “it’s just a sinus infection”.

Fast forward to 2014, I’m now living in the US and I’m an airline pilot. One morning I wake up with full blown attacks every hour or so and the pain is unbearable. Needless to say, I called work and told them I couldn’t fly like this, and the FAA (Federal Aviation Administration) considers TN a “disqualifying” condition anyway, unless controlled.

I see a Neurologist and sure enough, get the diagnosis (I guess 14 years late is better then never, huh? :wink: ). Anyway, this meant I had to give up my medical certificate and couldn’t fly unless the TN was controlled… and to make things more complicated, all the drugs used to control it are not approved by the FAA either… leaving surgery as my only recourse. I agree to undergo a Gamma Knife procedure in Spokane and it gives me 18 months relief, during which time I go back to flying.

Then last October, it came back even worse than before. Like a 2 minute attack every 15 minutes. Life was simply intolerable so once again, I called off and grounded myself. Only this time I have to take Gabapentin just to get through the day. It works wonders and I have very few side effects, so if it were not for the FAA, I’d be happy to call it a win… but again, if I want to get back in the flight deck, I need more surgery.

I have been seen now by Dr. Birchiel at OHSU and after some study, I have no compression on the nerve, so MVD would be a waste. He has however recommended a similar procedure that he called an “internal Neurolysis” or “Nerve Combing”. Basically the same point of entry, but rather than placing a pad, the nerve is split into several separate bundles in the hopes that the injury prompts the nerve to regenerate and fix the problem.

Considering that I have no other option if I wish to go back to flying, I am of course happy to agree to it. But I am curious to know if anyone else has had this done, and if there are any other pilots in the group who have experience that I may be able to apply?

More than that, I have an aunt who had MVD done and she now has restricted neck motion when looking to the opposite side… That in itself could be enough to cause an issue with the FAA when I go to get medically re-certified. Does anyone else have this problem?

Always happy to accept an other wishes and crossed fingers too, and I’m happy to offer the same!

2

hi mate, welcome to the forum!
I fly a desk, dont think that counts :frowning:
I have heard of the nerve combing thing a few times on the forum, hope some of the more experiences members give their input. But if they didnt see a compression in the MRI it doesnt mean that they wont find it during the operation. The MRI doesnt tell the whole story and I believe Dr Casey in Michigan doesnt even ask for an MRI and just goes by patient’s description of their pain. So hopefully they find something clear during surgery.
I am an engineer in the silicon valley and I also need to have my wits about me. Obviously not as critical as you, but if i get on tegretol and if i end up getting as loopy as people claim to get on it, I am out of a job and living under a bridge in no time. So i am just popping baclofen and ativan for now, but that is not a long term solution.
Anyhoo, wishing you the best and keeping my fingers crossed for you!

H

3

Like MVD, during which there is considerable nerve manipulation, I believe, TJ might well correct me, there is no evidence that nerve combing is a solution, and you would be out of flying just due to the procedure for a length of time. Go down that route and one’s flying by the seat of one’s pant’s. However wishing you the best.

4

OHSU is the place to be in terms of experience. They use the Dextroscope System. I wouldn’t consider either MVD or combing without. There are still a few Mavericks out there who operate without sufficient evidence, but fortunately they are slowing disappearing. Exploratory brain surgery no matter how many books you have written or videos made. I’ll message Melissa and see if she can pop in. I’ve seen the surgery and the technology, but darned if I understand it. In any event she can explain it. (Bio-medical Engineer)

If the mylography during the surgery does locate the roots you are good to go. Be aware though that not all TN is hemifacial spasm.

I have never flown either although I have jumped out of some perfectly good airplanes. The pilots swore the bullets were coming at them and not us. (I have proof they were wrong) Interestingly there is a pretty high incidence of TN with pilots.

I can’t imagine it effecting neck movement unless your aunt couldn’t/wouldn’t work through the pain and do the PT but again that’s a doc thing.

5

Hey,
I am not a pilot but have had an MVD. The neck pain and limitations went away for me after a couple of months. I have had no issues and have full movement just like I did before the surgery. I did not do any physical therapy but would just do little head turning excercises. They do strip the muscle back so at first there are definite limitations but they are definitely short term. At least they were for me.
Hope it helps and good luck
Lisa

6

I am an airline pilot as well. I have TN 1 & 2. I haven’t flown in almost a year. Mine started years ago. It was misdiagnosed multiple times (sinuses, dental, etc). Mine was well controlled on gabapentin but, same story, even though I was side effect free, the FAA wasn’t having it. I have had 2 MVDs in the past year and a half. The first was also accompanied by a glycerol rhizotomy. It failed about 6 months after the surgery (and after about a month being back on the line). I’m currently off meds, pain free but still experiencing the sensation of pressure on my right side. Still waiting on the FAA to give their nod of approval so I can head back to work. I don’t have much to offer you in the way of advice but wanted you to know you’re not the only grounded pilot out there. Being on the ground, pain free but not able to work has been one of the most frustrating periods of my life. My heart goes out to you.

I don’t know if it’s an option for you but just an FYI - the FAA didn’t so much as blink about the rhizotomy. From my understanding, most people have longer lasting results than I did. It will be my next step if this 2nd MVD fails.

7

I’ve never met any other pilots with TN so I hope you don’t mind if I ask… does flying make your pain worse? It was my first clue that it wasn’t sinus related. It hurt just as bad on the way up as it did on on the way down and would often last hours after my flight. Eventually it got severe enough that operating safely was out of the question & I had to go on medical leave. I think it’s more the vibration than the pressure fluctuation but I can’t be sure.

8

Thanks all for the info. Good to know the range of motion isn’t going to pose an issue. I’ll keep you all updated (though I suspect most of you already know more about it than I :wink: ).

9

As for flying making it worse or not, it was a similar thing here too… no difference going up than down, and even random occurrences just sitting on the apron… in fact completely random with the usual TN triggers…