Finally had my MVD Surgery on March 20th

General General TN & GPN (Old Site)
1

Hi Everyone -

I had planned on posting earlier, but I just haven't had the energy or interest to get on the computer. More power to those who can hop on just days after surgery.

I had my surgery on March 20th, with Dr. Adair Prall at South Denver Neurosurgery. His sub-specialty is in TN and I felt confident in choosing him. I would have traveled if necessary, but I was glad to find someone in my region.

Since my symptoms aren't textbook for GPN, Dr. Prall made it clear that while he would be looking for decompression-able areas on my 5th, 7th, and 9th nerves I needed to understand that there was a chance that the surgery would merely be exploratory. I was still eager to try, since my alternative was lifetime pain management for 'headache and face pain of unknown origin'.

The surgery was more successful than I had hoped. The Dr. found blood vessels compressing both the 5th & 7th nerves (contributing to facial pain, vertigo, but I've only ever had minimal shooting nerve pain). On the 9th nerve (glossopharyngeal), he found more of an issue of scar tissue and cut away arachnoid membranes in that area. He told my husband that this could be a result of an earlier infection? but I will ask him myself when I have my post-op in 2 days.

While still in the hospital (1 night ICU, I night general ward), I felt the immediate relief of the lack of the stabbing hot poker headache pain and generalized facial numbness feeling. I was pretty excited, but also realized that I my body was still processing the anesthesia and I was receiving narcotic pain medication.

I was quite surprised that I really wasn't in much surgical pain. Very sore neck, but that was about it. The first 10 days at home consisted of rest and help from family for personal cares, meals, etc. I took the narcotics for about 3 days after I got home and then switched to straight Tylenol. I was surprised how easy it was for me to find comfortable sleeping positions (I'm a side sleeper).

I go for my post-op check in 2 days. I started having some headaches again starting on Sunday (day 11) and I'm really hoping that these are healing headaches and not an indication that the surgery wasn't a success for me. I'm interested what type/quality of headaches others had during recovery and for how many weeks afterward.

Thanks to everyone for the support! This is such a great group. Please ask me any specific questions about my experience if you like.

-Jessica

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Great news Jessica. I'm interested in the vertigo side of things as my MRI showed compression of 9, 10 & 11 which I suppose doesn't really add up for me having vertigo? My surgeon had a check of 7/8 and 5 on the scan but couldn't see anything there but I guess sometimes you don't know unless you get in there, eh?

I'm in limbo trying to decide whether to go forwards with the op right now and your post is encouraging.

Was your pain constant in nature or attacks?

Do keep us updated on how your recovery progresses.

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Hi Jeffina -

My pain was very atypical and took several great doctors before it was narrowed to GPN. My primary pain was constant chronic headaches on the left hemisphere. It was a mix of all over throbbing/tension plus hot poker stabbing pains and without medication full on migraines (no migraine history). I would also get numbness in the back third of my tongue which was the aha moment for my second neurologist to think the glossopharyngeal nerve.

Over time, I also developed reduce facial sensation along the TN nerve path, shooting pains in my teeth, shooting pains in my ear. The shooting pain was occasional and my primary challenge was the chronic head pain with pain levels brought down to between a 4-6 with Topomax + Cymbalta. My vertigo episodes were very quick (1-3 seconds) when my headaches were their worst. Once I was on the medication above the vertigo was less often. But I did have a full battery of inner ear tests by an ENT to rule out an inner ear problem.

The key diagnostic test I had was to have a nerve block injection (done by an ENT specialist) of the GN nerve. This eliminated my pain for about 3 weeks.

I decided to see a surgeon b/c at this point I was facing 'long-term pain management' as my outcome. The neurosurgeon was clear that with my atypical symptoms that I would have to consider the surgery 'exploratory'. I liked that he was very open to exploring all possible nerves involved (5,7,9) for me. I wouldn't have gone with a surgeon that was only willing to look at my primary complaint (9th nerve). It turned out that I had problems with all 3 even though my symptoms didn't match textbook.

It was also important to me to pick a surgeon that was willing to do surgery without an MRI that showed compression (my first 2 didn't) as we have all seen from others in this forum that an MRI showing possible compression isn't required to see an actual problem during surgery.

I am in the healing pain stage now; but I am open to the fact that this may not be a permanent solution. But for me the option was 'lifetime pain management' and even if this isn't the long-term solution I knew I had to try it before committing to a lifetime of medication and pain.

-Jessica

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Hi Jessica,

Happy to hear you are on the healing side .

I hade MVD of the 9th nerve(Glossopharyngeal) in Sept 2011 (discovered artery looped around the nerve,plus a vessel adhered to the backside of the nerve, having rubbed the nerve raw of the myelin sheath .)

My diagnosis was challenging as the symptoms weren't textbook by any means. I was told I had migraines (Cluster/hemicranium or maybe trigeminal). , even tho my ear,temple,throat,jaw,neck,teeth hurt, throat was always red and inflamed, as was my Left eye. The 9th nerve symptoms are very prevalent now when the nerve flares. My voice gets gravelly, my throat is constantly red and hurts, like I burned it on too hot of food, my tongue hurts on the edge of effected side. You get the picture. Its back!

A year and half post op , I have just re-surfaced from 12+ weeks of hell: the nerve pain and headaches (migraine,cluster and crushing,3 types of headaches at once!) have all come back and tho the nerve pain had changed in character from sharp stabbing ice pick pre-op to duller and not as deep post op, it is now sharper and more painful again.) MRI a few weeks ago showed inflammation around the surgical site and scarring. It has been a real challenge to manage the pains as migraine meds would trigger rebound headaches,etc and I had lots of bad side effects from the "traditional" meds used for nerve pain; besides they really didn't work.

This past month, I have had some improvement, at least giving me some quality to my days again. I am on :

Diamox 250mg BID for the crushing head pressure headaches

Zonigren 200mg at bedtime for the cluster like migraines on the Left side of my face/eye (eye would tear,be really red,felt like I was being stabbed in the eye, swollen eyelids, constant excruciating headpain). This has worked wonders for this headache!

Baclofen 10mg am 20mg at bedtime (worked 100% the first week, now not working so well and nerve pain is significant 6-7+ constant. Upper molars hurt all the time, cheek feels like i have been boxed with numbing and pain towards nose.) This also works on the forehead headache/pain I get with the nerve pain.

I also take Naprosyn 600mg every 6-8hours as needed (or Indocin 50-100mg) for the nerve pain. It helps calm it down somewhat.

My post-op recovery was really slow. I had insomnia for months,never could sleep more than 2-3hours in 24, even with a slee aid. My eyes were unable to focus for a year postop so reading and tv watching was a chore. I had headaches constantly. I had had migraines off and on prior to this nightmare beginning but they were easily taken care of with advil 800mg and a nap. These headaches would go on for weeks,requiring hospitalization with a protocol of heavy duty meds to (sometimes!) break the cycle. Weeks of Prednisone helped with the pain but thats not good for long term.

Would I have done the surgery based on where I am now.? Probably because I didn't have much left in me by the time I went to surgery. I had wasted away from pain and had zero quality of life. BUT the surgeon led me to believe I would be normal a couple months post op. Now he tells me to go to a pain clinic. It makes me sad. I feel that this is poorly understood ailment and treatment is hit or miss. I have a wonderful internist and neurologist who are open to treatment modalities. But I have come to the realization that I am going to have to live with this pain and not be able to do many of the active things I used to be able to do.

I wish you this best of luck and I hope you find a solution that is conducive to your life style.

Rita

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Thanks for the reply Jessica, I think my symptoms have always been quite atypical and also confused with my TMJ problems, hence it's taken 4, almost 5 years for my diagnosis. I seem to get a lot of cross-over symptoms that seem more like 5&7 but all the problems that come with 9, 10 & 11 too so hard to know what is going on at time.

My surgeon has mentioned that it's possible for the 9th/10th to also send out signals along the 5th nerve etc so that's something I am thinking about at the moment.

Hope you are feeling stronger each day.

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Hi Rita -

I'm sorry to hear that your pain has returned. I know with this disease there is a fair recurrence rate which can be disheartening. I am already making sure I have a plan for what I will do for recurrence. For me a nerve block administered by an ENT to the glosso- nerve did better than any medicine alone. It was very similar to getting a novocaine injection - really easy - even though the online descriptions I read beforehand seemed scary. I wonder if a nerve block could give you some relief and allow you to take less medicine?

-Jessica

9thnerve said:

Hi Jessica,

Happy to hear you are on the healing side .....

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Jeffina -

Since my symptoms were atypical, I knew the surgery might find nothing. I made sure I was ok with that possible outcome before I did the surgery. I had to be emotionally ok if he told me afterwards the surgery found nothing. I decided to go forward b/c my current option was lifetime pain management through drugs and nerve blocks. I knew for me that if I had to take medication for the rest of my life, I needed to believe that was my only option.

I am healing really well; getting stronger every day. I think at the end of this I will probably still have some pain - but it won't be the debilitating pain I had before. I have noticed during the healing phase, that if I push myself too hard that I can make my head hurt. So that may be a lifetime management thing for me, stress seems to make my head hurt more and I will need to learn more stress management techniques.

Keep me posted on what you decide to do.

-Jessica

Jeffina said:

Thanks for the reply Jessica, I think my symptoms have always been quite atypical and also confused with my TMJ problems, hence it's taken 4, almost 5 years for my diagnosis. I seem to get a lot of cross-over symptoms that seem more like 5&7 but all the problems that come with 9, 10 & 11 too so hard to know what is going on at time.

My surgeon has mentioned that it's possible for the 9th/10th to also send out signals along the 5th nerve etc so that's something I am thinking about at the moment.

Hope you are feeling stronger each day.

8

Glad to hear of your successful surgery. I am almost 6 months post-MVD for my GPN, pain free, nearly back to normal. You might have headaches for a few weeks or months, mine were well treated with Tylenol. Good luck in your continued recovery and may you remain pain-free....