My MVD story begins

In the Spring of this year, 2012, I had my first shocks while walking across a parking lot after watching my granddaughter play basketball. I doubt if I am the only TN sufferer who can name the date and place that the shocks began. Nothing happened again for a few months until my teeth began to hurt.

After making the rounds of dentists, endodontist and sinus specialist, and after a little internet searching, I admitted to myself that my diagnosis was Trigeminal Neuralgia. More internet research and I found the neurosurgeon who would, I hope, become my savior. He was wonderful and caring. He started me on Tegretol, which I could not tolerate, then Neurontin, which eased the ice pick pains in my teeth and prevented the shocks. I was fortunate that I never had the terrible pain that takes others to an Emergency Room but I was scared of the shocks returning. During my last attack, I told my husband that I could not live with that pain.

Fast forward to the beginning of December. I am back in my neurosurgeon's office, telling him that the 1800 mg/day of Neurontin is keeping the pain at bay, but I have not driven for 6 weeks due to the drug's effect. I am 67 years old and in good health and so I asked for the MVD which he scheduled for this Friday, December 21. If I wait, I may not be as healthy as I am now and perhaps not be eligible for the surgery. This was my choice and I understand it is not for everyone.

Today I had my Pre Admission testing and was both pleased and amazed at the thoroughness of the UPMC protocol. In addition to a complete History and Physical, a meeting with my surgeon, Blood Work, EKG and Chest Xray, I also had my hearing tested. There is also a BSER scheduled for the morning before surgery. This is a Brain Stem Evoked Response Audiometry test. I also met with the anesthesiologist who explained how the anesthesia would be given, what drugs would be used and how many IV lines, including a Central Line I would find when I woke up. I was also given the exercises that I would begin in the Recovery Room. Along with the head moves to be done 10 times each hour, I was also given leg exercises to prevent blood clots. These are also done every hour.

I am already wearing the wrist band for the blood type and screen, for the extremely rare event that I would need blood.

I would be interested in hearing how others were prepared for their surgery.

As soon as I am able after surgery, I will update my experiences. Wish me luck.

Mimik , thank you for posting, I will be following your experience, as I’m in the early stages of MVD consultations. I wish you a speedy recovery, it sounds like the average advice is, sleep, listen to your Dr, and don’t push it. You will be in my thoughts on the 21st. Take care!! Tiffanie

Mimik: Thanks for your post. My first consult with a neurosurgeon is this friday. I had an MRI last week where they expected to find "nothing" based on physical tests. But they found a growth. So hopefully this growth can come out using some kind of neurosurgery and I will be good to go after that. I was in my own mind headed for surgery which I thought would be MVD. I know my neurologist thought I was premature as my first symptom was on October 22--yes I remember it well. It has progressed rapidly since then. Although an MRI was not on the regular protocol--it was on mine and I am glad that whatever was found and we can evaluate and see where we go from here.
Good luck on your MVD and keep us posted. Anne

My earlier MRI showed nothing, which was a good thing for me. I did ask the neurosurgeon about a Fiesta MRI but he said it was not necessary as it is one more test that may or may not show a compression. Based on my symptoms and the fact that nothing else appeared on the MRI, he is convinced that there is a compression. Anne and Tiffanie, I wish you both the best of luck on your surgeries. Thank you for the good wishes.

I wish you the VERY BEST! I returned last evening from my 2 month follow up with my neurosurgeon, after having the MVD Oct. 18. All is going perfectly & I am thrilled. Soon you will be writing happy notes to all of us!

I know you will do just great.

You are in the thoughts and prayers of so many of us..

Thank you Dixie. I am happy to hear that you are doing so well. It is the successful stories that keep my thoughts positive.

I had my first attack, and I say that because it wasn't just one shock, Nov 2007. On my 5th anniversary I had my MVD and I am happy to say I am almost pain free. Besides my TN becoming almost non-existant, my migraines have also improved incredibly! I've had 1 migraine in 6 weeks. I used to have almost daily migraines. This wasn't part of the plan, but I'm glad it's going this way.

I hope that when we hear from you post-op you will be TN free!

(( Mimik))
I always smile when I see your name, my maiden name starts with a “K” : )
I’ll be thinking of you on the day of your surgery !
Wishing you all the best for your surgery and healing afterwards…take care of you.
Look forward to hearing how you are and your experience, when you are able! What a fabulous Xmas present this will be for you!!
Deep relaxing breaths and positive thought, Mimi xo

Best of luck to you with surgery. I had my mvd on October 3rd and am 90% pain free which is exactly the result the neurosurgeon expected. My pain scale now is 2 on a scale of 1-10 and only occasional. I had almost 90% ATN symptoms and it is possible that my nerves are still healing and I will have 100% results.

You will be amazed how easy the surgery actually is. I am surprised though they have you doing exercise, I had these tubes on my legs that inflated and deflated to prevent clots, I actually found them relaxing and would love to have a pair at home since I have restless leg syndrome now from the Tegretol.

I wish you the best

Wendy

I am happy to report that my surgery went well. The surgeon reported to my family that he could see an artery pulsing against the nerve. He placed 7 teflon pads and cauterized 1 vein.
Other than a bad headache, which is improving, I am fine. I suspect the headache may have been caused by the brace that held my head during the surgery. I will go home tomorrow.
My dressing, which was held on with staples, was removed today. The incision has 12 sutures and is 5 inches long. Since the ice prick pains in my teeth are gone, I think the surgery was successful. My hearing is fine and I have no fluid in my ear. Hopefully these good results will continue.

MimiK How wonderful to hear. I am delighted to hear your success--no pun intended over the hearing--but that is also a good thing. I am hoping the success you and others on this sight are reporting will cause surgery to be pushed up in the order of favored options. And I looked back and see that your surgery was only 2 days ago. It sounds like a miracle. Thanks for letting us. know. Anne

That is wonderful to hear FROM YOU that the surgery went well. I am so happy for you!

I am home today! The headache is gone but I continue to be tired. There are quite a few restrictions, like not bending over, lifting anything more than 5 lbs and not blowing my nose. They seem to be working out okay for me as my dear husband has done the laundry and the house is clean. How he managed this while spending all but part of Sunday at the hospital with me is beyond me. The hospital provides a recliner that flips open to a very uncomfortable looking bed and he slept in my room. The care I received was amazing. I was checked every few hours for signs of neurological damage and stroke. Vital signs were done often. So often that I wanted to lock the door and sleep more than 2 hours at a time. Crawling into my bed tonight will be so much more comfortable and relaxing. Since there are a few more days that I need to be watched, my husband has borrowed walkie talkies. I can always call him if he wants to watch something other than the Hallmark channel. I hope everyone is having wonderful holidays.

Merry Xmas Mimik!
Have a great sleep in your own bed, rest, rest, rest.
Take care of you, Mimi

So good to hear how well you are doing. You are on your way!

Hi MimiK I haven't seen much about your MVD. I too had the headache and believe like you it is from to the halo. I had random staples on my head where the halo was on so tight so the incision was big enough that it had to have a staple. I too had wax put on the ear canal to prevent a CSF leak but unfortunately I did leak and had to have a second surgery to have it fixed. I think all doctors do things pretty much the same. I also agree with you, they don't tell you anything about post op. All the little things that happen,,the numbness, crackling in your ear and the tongue tingling especially. I am now one month in and am starting to feel alot better even after the second surgery just this week, Hope you too contunue to feel better. Postive thoughts of recovery and a hug. Linda

Linda, I am happy to hear that you have finally been treated for the CSF leak. I am really looking forward to 6 weeks from now when this is all a faint memory. I still have the headache but it is improving daily. Today, I had a little tingling around my teeth where most of my pain was before surgery. I would not even rate it a 1. Tomorrow my stitches come out!

May we all recover from this nasty TN!

Sounds good!!! The headache was something I never had, guess I was drugged to the max, lol. Isn't it awesome to say the pain is only a 1??

happy for you

Wendy

MimiK said:

Linda, I am happy to hear that you have finally been treated for the CSF leak. I am really looking forward to 6 weeks from now when this is all a faint memory. I still have the headache but it is improving daily. Today, I had a little tingling around my teeth where most of my pain was before surgery. I would not even rate it a 1. Tomorrow my stitches come out!

May we all recover from this nasty TN!

My stitches came out today and I was told to start decreasing my Gabapentine. While that was good news, I did not do so well on the hearing test. I lost some hearing on both sides and have developed pulsatile tinnitis in the left side, which is not the MVD side. I am constantly hearing a very loud heartbeat in my left ear. It was so loud this morning that it woke me at 4 am. My surgeon is trying to get a specialist to see me ASAP but with the weekend and holiday coming, I do not expect an immediate answer. We all know that hearing loss is a possibility from MVD, and I was willing to accept that. Before the surgery my hearing was above average, and now it is below. During the surgery, my hearing was being monitored and for one moment it completely was gone. But it came back and the procedure continued. I told my husband now I cannot hear him asking me to do something, just as he says when he misses my requests, so we are even!

Yes MimiK I so agree with you, I want this all to be a faint memory and a day to come when I or we all say "TN what's that" lol I know none of us will forget the pain TN can cause but it will all be a part of our past. I get my stitches from the second surgery out next week. Things can only go up from here right.

Here's to many many pain free days!



MimiK said:

Linda, I am happy to hear that you have finally been treated for the CSF leak. I am really looking forward to 6 weeks from now when this is all a faint memory. I still have the headache but it is improving daily. Today, I had a little tingling around my teeth where most of my pain was before surgery. I would not even rate it a 1. Tomorrow my stitches come out!

May we all recover from this nasty TN!