Geniculate Neuralgia corrected by MVD

General General TN & GPN (Old Site)
1

I On June 27th my life changed, again. This time for the better.

For the past three and a half years I have been suffering ice pick pain deep inside my ear. Only ever on the left ear. Ive had so many troubles with that ear in the past.
I have had litterally hundreds of ear infections, some treated, mostly not. I have had eardrums rupture on my pillow at night case it was so infected.

As I got older, and started taking care of myself, you know like "going to the dr. at least once a year. I went to have hearing and ear inspected.
It was suggested that I have a Tympanoplasty perfprmed on my left ear. This was due to the mass hearing damage done to the ear structures.

Flash forward 10 years or so. Flying in small poorly preasurized aircraft, my left ear would oflten get perforated significantly. Blowing bubbles out youe ear is a great party trick, (and a great pickup line) but not fun to have happen to you.

The ear would heal just fine and Id be out of commission for a few days while I got my ballance back.
One of if not he last times I flew the landing into Kamloops was so sudden, the atmospheric change actually made me ill.
I’ve had ear problems. I know them well. This something was wrong.
time
Fast forward to three years ago. After having Tinnitus that just wouldnt stop for several months I started having pain deep inside my ear. Unlile anything Ive ever felt before. I couldnt touch the source of the pain inside my ear or around the ear, but it was there for sure.

It was not so bad at first, but developed into 24hr/day pain.
Still having Tinnitus, now this feeling like I just stuck my tongue on a 9 volt battery (only more powerful)

After going to see family doctor, ENT specialist , Neurologists, ENT Neurologists and being a patient at the pain clinic for a couple of months (that took forever to get scheduled) my Pain Mamagement team told me if a great Neurosurgeon coming to town. After a couple of months the Dr. came to town, and an appointment scheduled.
Up to this point about 3 years has gone by. Sometimes excruciating pain that would break me down, and I would just take my sleeping pills and go back to sleep.
Work had been surportive of me until I has used all my sick days, then used vacation and overtime to cover appointments.
Now there is a hint of accusation in their eyes if u know what I mean.

Long story. Almost done.
Met the Neurosurgeon, he looked at the same mri / ct scans as the other doctors did, he said "You sound like you might have Geniculate Neuralgia.

Spend 2 months researching this new disorder and realozed just how right he was.
Fast forward 3 months, mvd was suggested, agreed to and waivers filled out.
Last thing was to wait for an OR time slot where both Neurosurgeons have available. (having two there is very helpful they tell me. Its a long surgery, and its good to have someone in the same field present if there is an anomily.

June 27th a day I wont forget. It was the day I got hit by a Mack truck.
At first we had discussed performing MVDs on facial nerve, Glopharngheal nerve (sp), and exploration of the Vestibular cochlea(sp) and sectioning of the Nervous Intermedius.

After getting a few shots from anstesia before to calm me down. (Anxiety since this started) the day becomes a blurr.

Almost 7 hours later the operation is finished. The facial nerve and vagus nerve were wrapped up with aerteries like boaconstrictors. The Vestibular cochlea (sp)was also compressed badly, and the.vagus nerve was as well.
They could not find the Nervous Intermedius as it looks to be under a bone in my body. Small bonus- I was frightened about sectioning a nerve.

The recovery was brutal. All I did was puke for three days. The Morphine was controlled by me. So anytime I felt pain I was supposed to click a button to release some. The problem was, I dont get along great with it apparently. Two minutes after I click for morphene BAM. Back to the bucket.
Finally one of the nurses believed me about puking anytime I click for more.
Stopped using Morphene and just kept taking RegStrength Tylenol. The puking got better and I am home now. Jul 1st!!!

So far my GN is gone! Tinnitus still there but I dont care right now.
Took 8 weeks off to recover, and start getting iff these drugs.

Thats a start to my story, and I hope it will bring hope to others out there.
Never stop fighting for you.

Smash

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Please forgive the wall of txt, and any butchery of the English language.

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Congratulations Smash! I am very happy to hear another MVD success story. My surgeon also found a compression of my vestibulocochlear nerve (8th cranial nerve) when I had my MVD for TN and ATN. I had been having a lot of deep ear pain. I was constantly going to the Dr to see if I had an ear infection. When I told my neurosurgeon about the pain he said he’d take a look in the ear area when he went in to fix my trigeminal nerve. Sure enough there was a compression of my vestibulocochlear (as well as my facial nerve, the 7th cranial nerve). My ear pain is completely gone!

I wish you much success with the rest of your recovery and with coming off of your meds. Remember to take it easy. :slight_smile:

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YeY Smash!! Oh so pleased to read of your results!! Sooo happy for you !!
I hope your recovery goes smoothly and that you are able to rest comfortably.
I too had the deep ear pain pre mvd, I have yet to read my surgical report but I don’t think my surgeon discovered or even investigated the 8 th nerve…regardless that pain is gone since my mvd. :slight_smile:
Thank you for sharing your story with such detail and honesty, it is bound to bring hope to others. Please let us know how you are doing in the days, weeks ahead.
Healing thoughts and positive vibes being sent your way!
(((( hugs )))) Mimi xx

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Thanks for reading and hugs are always welcome.



I am not going to sugar coat anything here. After several days of just pain from the incision, there before me was another Mack truck.

Bam vertigo, crash nasuia , screech non stop puking that would not go away.



I was warned that for the first two weeks of recovery there would be ups and downs. Especially how much work they had to do on the nerves.



I was really depressed, fearing Id have to go back to the hospital.

Once the vertigo got better, slowly so did everything else.



I dont want to discourage anyone, yet I am brutally honest. If you are thinking about MVD, make sure you know what might happen.



Smash

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Thanks for taking the time with your story to help others. Hoping for continued healing and happier pain free days for you. Hugs

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Smash,

Oh my goodness-thanks so much for sharing your story. A lot of your story sounded familiar. It's taken me two and a half years to be diagnosed with Geniculate Neuralgia. I too have had a lifetime of ear infections, and have seen numerous specialists, all who've had an incorrect theory about what the intense, never ending stabbing pain in my ear is. I recently saw another neurosurgeon who felts confident I have GN. I am relieved to have a diagnosis, but also scared as I am scheduled for MVD on Tuesday July 8. I hope this will be the solution, as it has been a nightmare living with this horrid pain each and every moment.

Again, thanks for sharing your experience. Good luck with your continued recovery. I hope your pain stays gone!

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RuneAnn : I am sorry that you are suffering with GN, I know what that can do to your life.

If you ever want to "chat" about your condition, add me to friends and PM me.

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Today is a good day. Little to no vertigo and with the new medicine my surgeon prescribed my nausea is under control.

The GN pain is still gone, I still have tingling on the top of my scalp, I didn't expect that to change.

****** I forgot to mention, that once my GN pain had started I also began feeling this tingling sensation on my scalp. It kind of "waves" from my ear to just over the center of my scalp, then back. It's not persistent and there was a nerve block done that stopped that. We know what nerve it is, or should I say my Dr's do (LOL) and if I really care later, we can address it.

I am able to walk up and down the stairs, albeit slowly, with out the world spinning. As long as I stay slow I can do most things. I even got outside to talk to a neighbor today.

Here is hoping that the positives continue and the negatives fade to black.

Smash

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Smash,

I'm so glad you're having a good day! I shared your story with my family as I am going in for my MVD surgery for GN on Tuesday and I'm scared to death. I hope you continue to feel better each day!

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Hey Smash
So glad I logged in today and found your discussion. Congratulations, really, really deeply good to read you’ve had success with the MVD. I have a lot of the same issues and am seeing a NS in August. Your detailed story is very helpful to me.

Wishing you continued recovery. This must be such a relief, despite the puking and vertigo, etc. Please keep us posted.

Big Hugs
Peace and Happiness
Bellalarke

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Another update. After 18 hours of puking every 20-30 minutes, I needed a day or two to recover.

Yesterday was a good day, how sad is it when for me a good day only means no puking,

I got my sutures and stitches removed today. My surgeon wanted to leave them in for 2 weeks. Most of them came out fairly well. There was 2 however that really hurt coming out.

Vertigo is much more manageable, as is the nausea. I am forever sleepy though. I am having a tough time finding my words today, but I wanted to say something.

Smash

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Hi Smash
Here’s hoping your puking is over and done with. Sounds wretched (pun intended? Lol).

Being sleepy after major surgery and after years of suffering is probably the body’s way of healing. Glad to hear the vertigo is manageable. There’s still lots of summer left so here’s to you feeling really good in a few weeks. And if all has gone well, winter won’t be torture;)

Hugs and wishing you stronger days and complete recovery.

Bellalarke

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Thanks for your words of encouragement.

I am on day 4 of puke free! I still feel tired, achy, and all around sore.

The GN pain is gone! I have only had 1 attack since the surgery. No matter what I have gone through, the pain is gone!

I hate going through the recovery process, and I suppose it is different for everyone. The amount of messing around with the nerves makes a huge difference on the recovery, so I just have to wait it out.

Thanks all for reading my story.

Smash

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Smash,

Has the Dr tried having you use on of those prescription seasickness patches? My nausea was awful after surgery. Couldn't move without vomiting. Besides taking Phenergan for nausea they gave me that patch to use. (All I remember is the nurse joking that the name of the patch sounds like scalopini. lol) It made a huge difference. I used it for a few weeks post op. Just a thought.

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Thanks ihold. I had them on for the maximum amount of days aloud, Im also on Serc(betahistine)

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Smash,

If the nausea comes back, which I hope it does not, have you tried Promethezine? It will make you tired, but it helps me every time. I'm glad to hear each day is getting better for you!

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Another day of puking, but this time it was after 4 days of being free.
The GN pain is gone still.

I have been sleeping a lot, as I have been told. I still find it tough sleeping on the affected ear.

Once this is over I think I might actually believe it. Right now I am going up and down. Some times it feels like a dream. There is no more pain.
Other times it feels like a nightmare.

My car is in the shop (good time for that) I cannot wait to have her back. At the very least i can detail her over and over.

I hope you all have a great day.

Smash

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Feeling good. In fact I feel fantastic today.

I think I am close to the end of the "recovery" phase. I might be on my way to the "rehab" phase.

For now I am going to wait for a few days with little to no movement. I really never want to see the inside of a toilette again. I really hate puking, and I am sure I have puked more in the last 3 weeks then I have in my life.

Thank you everyone for your support and kind words.

Smash

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I woke up this morning and WOW - Two days in a row feeling this good. Not going to jinx it, but WOW.

I've been able to read a little which is great for passing time.

I still haven't got my car back from the shop, maybe this week.... Who knows, it is not like I will be out galavanting around anytime soon. OR maybe I will. HAHAHAH

I'm still taking it easy, man those stairs are a bitch. Every time I go down them I feel like I am going to slip and fall. Everytime I go up the stairs I get pain in the head, and dizzy.

It's ok mostly because I have an en suite, but the kitchen is downstairs.

Here is hoping that everyone has a good day today.

Smash