i have a million questions, I am seeing the surgeon on Friday. I have had GPN since 2004 but for the last 2 years it went into remission. It is now back and I can not work due to the fact that I am a police officer. Can any one tell me what the recuperation time is? How successful are these operations?

My recovery from MVD took more than 3 months. I was back to work in 3 weeks since I work for myself. I was weak and wobbly at first and slowly improved from various issues. I wish I waited longer.

If I were you I’d take at least 2 or 3 months, just to play it safe. You need lots of rest at first and time to regain your strength.

From what I’ve read most people who have a procedure have relief. But the experience and skill of the surgeon you pick is probably the most important factor. My surgeon had done about 80 cases for GPN and thousands of other base of brain surgeries, and came highly recommended by people I knew.

Of course, the problem you have has to be amenable to a surgical fix. Sorry to hear you have GPN. Best of luck.

By the way, I have no residual pain. Life is wonderfully boringly normal!

I had MVD in July 2009 and have been GPN pain-free ever since. I was back to work 4 weeks after my surgery, but like Vicdoc, I wish I'd stayed home longer to recuperate. I mostly was dealing with lots of headaches for a couple months after the surgery, but since I have a sedentary job, I was able to work reasonably well. With your very physical job, you might need to take a couple months or so to feel well enough to get back to work, although I know it varies from one person to the next. Listen to your surgeon's advice and don't rush things would be my best advice. You didn't mention if you're having MVD or some other type of surgery, but I wish you the best no matter which path you have to take.

Guess it will depend on you. Each person is different. I had the procedure November 2012. I am completely pain free! Recovery was a bit of a journey. I have right vocal cord paresis. It is not considered paralyzed until May, 16 months after the procedure, as it can heal in up to that amount of time. I had a mini-mouse voice for several months. Being a teacher, I was out of work for the balance of the year (10 months) and visiting the speech therapist twice a week. I am happy to say my voice is 99%. I have shortness of breath and require a microphone/speaker system at work, but not in a casual setting. I was diagnosed with GPN around the same time as you, and did think for one year I was healed! When it came back it was with vengeance, and I had enough. No regrets. Find a confident, competent neurosurgeon, and keep positive.

I have had GPN now for a very long time. First big attack in 99 but had niggles well before then. I am interested to know with each of you that have had surgery what the underlying cause actually was.

Was it predetermined, as actually confirmed on MRI or CT prior to surgery? Same with you Jim, is your Eagles or basically exploratory surgery to see if it is a blood vessel etc.

I had many MRIs, which did not conclusively show the 9th cranial nerve in conflict with a blood vessel. All of which were done with okay equipment on Long Island. It wasn't until I went into NYC, to one of highlighted doctors in NY Best Doctors Magazine. http://www.castleconnolly.com/doctors/results.cfm?source=nymetro&speccode=070 I had found Dr. Goodman in 2009 and saw him that December. He did not run the test at that time, but referred Trileptal to be ordered by my pain management doctor, which he did and was successful for two years. Once the Trileptal maxed out in dose and was no longer effective, I returned to Dr. Goodman. He then ordered a Siesta MRI which conclusively showed the healthy nerve and healthy vessel in conflict. He wasn't 100% certain it would show, in which case we would have gone in exploratory. He said it doesn't always appear. I was blessed when it did and will never forget that phone call.

Thanks for the information Donna. Was the MRI machine a 1.5 or 3 Tesla? I am just curious to know how people without Eagles are getting diagnosed prior to surgery. I have multiple sclerosis and I am praying there is another 'fixable' answer to mine as if it is MS causing it, it means there is nothing I can do...

Also when you had this last MRI, which gave a definitive diagnosis, did you have the gadolium dye?

I am keen to hear your, and everyone elses responses here to Jim's question on recovery from surgery too. :-)

Did you have the operation and how quickly did you recover? Any residual damage?

I didn't suffer from Eagles, Glossopharyngeal . Not sure on the machine specs. I honestly don't remember the MRI. I think I had the dye, but I don't remember. If it is an IV, I'm pretty sure I did, but not 100%. I was in such a state of despair, as you can imagine. Sorry I can't be more specific. I posted above the residual damage and the slow recovery. God is faithful. We managed. Don't suffer due to finances. Find a way. It will be worth it.

My surgeon said he saw a blood vessel touching my 9th nerve in my 5 year old MRI (with contrast, don’t know machine specifics). At surgery it was the PICA and vertebral arteries both putting pressure on the 9th and 10th nerves on the affected side. He put in 2 sling sutures and a plug of Teflon to prevent the vessels from touching the nerves.
Nobody else who looked at my old MRI saw the vessel, but he showed me what he was looking at. His office told me they frequently don’t see anything on MRI and do the surgery based on the symptoms.

My MRI with and without contrast didn't show anything definitive, so surgery was scheduled based on my symptoms alone. I went into the surgery with the knowledge that the surgeon might have to cut the nerve if he found no vessel coming in contact with the nerve, but I was lucky that there was an artery causing the pain, so the surgeon just had to insert a Teflon pad as a spacer. I've had absolutely no lasting deficits resulting from the surgery, although I had bad headaches (as I mentioned earlier) and also a strange feeling of water in my ear (with mildly decreased hearing) on the opposite side of the surgery for about 8 weeks or so. Everything has been normal since then.

Thanks Donna, read your recovery journey so far. Hope the vocal cord paresis recovers. Donna my issue is not due to finances. I have multiple issues going on and my MS specialist believes my MS is causing GPN so therefore cannot be fixed. I had to organise myself with my doctor to have CT scan to rule out Eagles as he didn't consider this... I just need to be sure it is MS and not another issue that may be able to be corrected. If it is MS, surgery will have NO real benefit as it doesn't fix the issue. Only a cure for MS will give me that. In regards to you vocal cord paresis, have you considered trying acupuncture for this. It is worth considering.


KayJay, how long ago was your surgery?

Vicdoc, very interesting about the MRI results. I don't know about over there in the US, but here in Australia we seem to have some issues with radiology reporting now than ever before. Either something is missed or reported incorrectly. Of course this isn't the case 100% of the time. However, the errors seem to be becoming more frequent and I have been subject to these mistakes myself.

I have frequent MRIs for my MS, but I have never had the contrast (gadolineum) with it as my MS leions show up without needing to be enhanced. My last few MRIs were on 3T machines. The improved clarity between a 1.5T and 3T is unbelievable. There is also now a 7 Tesla machine which apparently is incredible but this here is only used in research at this stage. The 3Ts are just making there way into a number of radiology practices now but a lot of hospitals have both 1.5 and 3T.

I had asked for my vestibular nerve to be looked at with my latest diagnosed condition for any acoustic neuromas as other tests I had were suggesting this. The nerves look clear so pretty sure there is none. I, however, have not asked my neurotologist to look at the blood vessels for GPN, as we were focused on my other rare condition (SCD) which affects the inner ear. I had posed the question to her (different specialist to my MS neuro) could the branch of the GP nerve that is in the inner ear be the cause. Could it be getting aggrevated by this other condition as I have a small hole in that bone as well, the other side no bone. So we did look at the vertibular nerve but I didn't think about the blood vessels at the time.

I do recall seeing a number of them quite clearly on the screen, so will ask whether they can maybe have a look at this area more closely in my next visit. I need to have a craniotomy to fix the SCD condition but given I have MS we are not sure whether that will be advisable. It is still being discussed. Given this condition is very rare and only newly discovered in medical science terms (since 98) they are still learning about it. Only approx. 5 patients have undergone the surgery at my hospital and only 16 patients on record there with having this condition and this is under leading researchers in this area. I have been informed there is only one other person they have seen similar to me, but I am the worse case.

The condition I have is called Superior semicircular canal dehiscence - I literally hear everything going on inside my body and from my latest test results (I hear twice as much as normal people). I have no bone over the canal so all sounds go directly to my brain instead of the cochlear. Not much fun and now know why I have been debilitated further as live with daily migraines triggered my sound. Can't wear say earplugs because while they will block out some of the external sounds, my internal sounds become deafening to myself and I can't hear people talk let alone think. It's made it very difficult for me in the last 7+ years (as this has worsened) to finally get a firm diagnosis but it has taken my ability to socialise etc. now. When I walk either everything bounces up around me or everything spins... Certain pitch sounds throw me off balance and certain sounds vibrate terribly through my body even at a great distance away. Like a car going by playing doof doof music really loud will vibrate and shake my whole body.

So I have many things partying in my body. I am really keen to berid of GPN. Acupuncture controls mine quite well on a daily basis but if I become run down, or get a virus, or have a big MS exacerbation or attack it seems to trigger massive attacks of GPN and my attacks come every 3-5 minutes on their own accord, more if I swallow or attempt to talk, and the intensity makes my heart stop at times. I am like this for 24/7 for around 6 months at a time before it settles down. It takes every ounce of strength to fight it. I have been told my case is at the extreme end, and I have only spoken with one other person on here who experienced it similar to me - they have since had surgery.

My last attack started in March and didn't end until August. I end up gravely ill. I also have another autoimmune disease Sjogrens and it also seems to have a causal factor in niggles with GPN. I find the drier the weather conditions, the more likely a niggle. I call niggles when I get maybe half a dozen attacks during a day as that is nothing compared to my actual attacks.

So I am keen to read how other people (without known Eagles) got diagnosed for surgery. I think having a physical cause that may be corrected as opposed to MS causing it sounds more feasible to me. However, the MS specialist has just put it down to MS being the cause and really not investigated it further no matter what I ask. So now that I have two different neurology specialists for my different conditions I can pose the questions to the other ;-) Plus I will be seeing a neurotologist surgeon and a neurosurgeon, so can also ask what they think too. Not many cases in my country of GPN and I am yet to speak with someone here who has had the operation. I'd say if there are any that they could probably be counted on one hand... Sadly the same goes for this other condition too, and so far cannot find anyone worldwide who has SCD and MS (and Sj) who has undergone surgery. Let alone anyone with these conditions and GPN. Only know two other people with MS and GPN through here.

Thanks Jim for bringing up the subject on recovery as your post will help build a better picture on this subject.

Hello Jim

Sorry to hear about your gm. I hope your surgery goes really well. I live in England. Diagnosed with gn last year. In remission at moment so surgery not on the cards. Please will you let us know how your operation went. Best wishes, regards, Sandy

Hello Jim,

I have had GPN for 7 years. It rarely goes into remission, so after all of this time, I've decided to go ahead with surgery. The surgeon told me 6 weeks recovery time. However, I am taking 8 weeks off from work for sure and will see how I feel at that time.

Best wishes