I am scheduled to have the MVD surgery in January. I went to see the Top neurosurgeon at NYU in NYC. I am terrified!!! I have mixed feelings about having it done, Any advise please.
I was also of a mixed mind. The odds are excellent you’ll make it through. It is no picnic, but by the time I decided to go through MVD I was at the end of my rope. More than 1 year postop I am fully recovered with no pain. You may not have success, but I have come to realize that in taking the risk I gambled and won my life back. That’s what’s at stake, not the risk of failure but the hope of success.
God Bless and here’s to a pain free life…
Vicdoc said:
I was also of a mixed mind. The odds are excellent you'll make it through. It is no picnic, but by the time I decided to go through MVD I was at the end of my rope. More than 1 year postop I am fully recovered with no pain. You may not have success, but I have come to realize that in taking the risk I gambled and won my life back. That's what's at stake, not the risk of failure but the hope of success.
God Bless and here's to a pain free life...
Thanks so much Vicdoc, I am very happy to hear that you are pain free and all went well with you!!! You say it is no picnic, can you please tell me about the recovery part, I never asked my DR. Thanks so much Jasmine
I had vision problems for a few days, balance issues for weeks to months, my sense of taste faded away and took many months to return, my driving judgement was bad, (I was overwhelmed by all the things going on), and I was incredibly weak, it took 6 months to get my strength back. I talked like Mickey Mouse for a couple of months. I had post anesthesia sore throat. That about covers it. But those issues were all temporary and I woke up without pain. It was all worth it. Best of luck!
Wow, that's a lot to digest!! Thank you so much for your reply and I wish you a continued pain free life.
Jasmine, yes it is a lot to digest! I highly recommend that you call your neurosurgeon to discuss your recovery and possible side-effects. It is important to be well informed. They are going to ask you to sign a consent that they have reviewed all the possible side-effects and complications the day of surgery. And the day of surgery is no time for you to take in that type of information. It's a big surgery and it's in your best interest that you be well informed and prepared for your recovery. Best wishes to you.
Hi Jasmine,
I am a year and a half out from surgery. People used to tell me I was so brave to get the surgery. On the contrary, when you have the pain associated with GPN you are afraid not to have the surgery. I realized this was my only opportunity to get my life back. Do your homework and ask your surgeon EVERYTHING!
Personally, I am doing awesome! I work out regularly and have no deficit. I struggle with some headaches that are controlled with antiinflammatories as needed.
Go in with a positive attitude and accept the challenge. Best of luck.
Rob
I understand your nervousness, Jasmine. I never had surgery in my 59 years! but I did have complete confidence in my dr. and had made peace with myself. I knew I would never be able to talk or even swallow my own saliva without excruciating pain which was no longer respondong to meds. Once I made the decision, I felt relief and hope for a future. My only postop complication (MVD of 5,9&10!) was the need for a feeding tube for about 10 days and some physical therapy to strengthen my “swallowing” muscles. The doctor never even shaved my head so I looked normal besides. Let us know how you are doing. I hope I have been able to offer you hope. Sally
Hi Jasmine,
Today I am 4 weeks post MVD surgery and am so glad I did it. I started a blog on this site where I have been tracking my progress that you could check out if you want more details but I will highlight for you my experience. Today I am pain free and am not on any medications (after 10 years of dealing with this). When I left the hospital after surgery I had a walker and cane because I was not steady on my feet. After being home for a week I did not need either of these although I did (and still do to some degree) walked very slowly and methodically. I am driving (during daylight and low traffic times as my reaction timing is not 100% yet) and am doing some light house work. This helps to bring back normalcy into my life. Other symptoms that have basically dissipated are; hearing - everything sounded louder; taste - everything seemed to taste a bit stronger (I still don't like coffee). My voice and swallowing are still not 100%. My voice is a bit squeaky, but I can communicate clearly and I have difficulty swallowing solid foods. I see slow and steady progress with both of these. I also see a speech therapist who has given me exercises to do to strengthen my vocal cords and muscles in that area. So as long I see progress I am happy.
My advice to you post surgery is: follow the doctors orders, pay attention to your body and know when to take a break, don't push yourself, be patient the recovery is slow. And you may be uncomfortable sleeping because of the stiches/incision, put a soft ice pack (bag of peas) on your head at night when you go to sleep. (also make sure you have a healthy diet that includes protein to help with the healing.
Good Luck and let us know how you are doing.
Kala
I agree with what everyone has said. After suffering with the pain of MVD for so long most of us are more then willing to try anything suggested that might help. After dealing with MVD since 1995 and being told around 2000 that this type of surgery was not going to be of any help I originally put it out of my mind as a possibility. I was later considering Gamma Knife surgery and looking on line actually for information on that when I found this very site. I didn't realize there were so many people suffering with MVD. My doctor led me to believe that I was one of perhaps a dozen in the entire world. Now we all now it is rare but clearly not that rare. I was overjoyed when I found this site and that there were many people out there fighting with the same thing that I was fighting with day in and day out. I found a referral to a surgeon that was only an hour and a half away from me. After consulting with him we scheduled the procedure for January of 2013. Unfortunately, I am one of the few people that the surgery did not eliminate my pain. I have no regrets for having the surgery. I am glad I tried it. I knew going into it that it might not work. Of course I was saddened by it all, but truly I have no regrets. I also found the surgery very simple. I thought there would be much more pain then there was post op. I did have some minor swallowing issues and minor speech issues but I am not complaining about either of those. If there was a possibility that I could relieve myself of that pain in some other new surgery I would try that one two. Please, as suggested, ask your neurosurgeon all of your questions. I would write my questions down so I didn't forget any and so I didn't feel pressured not to ask them once I was in front of the doctor. I wish you the best of luck and hope everything goes better for you then it did for me. MVD seems to have a very good success rate. It doesn't seem to fail too often so I wouldn't worry about that so much. I have read about many people having MVD on this site and so many ended with positive pain free results. If you would like me to, I'll pray that you will have a successful surgery and be pain free soon also. God Bless You.
I forgot that my swallowing was also affected for a couple months, felt like I would choke, especially with meats. Eat slowly and small amounts. If you choke you might need the feeding tube mentioned. Hopefully you’ll be fine.
Best of luck!
From the bottom of my heart, I would like to thank each and everyone of you for taking the time to fill me in on all of your details. It really touched my heart! All of you are so brave. I on the other hand have taken a step back and postponed my surgery. I am not mentally ready to go through with it yet. Hopefully in time I will be. Again thank-you everyone. May God bless you all and keep you pain free, Jasmine
I applaud your decision. You need to do something like this when it is the right time for you. I was fortunate to find a great surgeon in Denver and had my surgery in March 2013. I knew it was the right time for me with the right surgeon. While I was nervous having a major surgery, I knew it was the right decision to go through with it.
I had a very easy recovery. I didn't suffer from any side effects. I was, of course, very tired and had planned for 4 weeks off of work. I started taking very short walks within a week of the surgery - they were perhaps 2 blocks long and I was extremely slow - but was able to get around. I spent my time recovering with a lot of sleep and went back to work full-time after 4 weeks. I could have easily gone back after 3 - but decided to take the full allotment to rest.
I am virtually pain free and on ZERO medication. This was a life changing surgery for me and I couldn't be more happy that I decided to go through with it. I wish you the best of luck in your decision - you will know when and if the time is right for you. Many people manage fine with medication.
Best Wishes.
Thanks for sharing your story Jessica.. All the best to you, Jasmine
It is Scary leading up to it you keep looking around thinking is this the last time I see or here this is your pain burning or electrical?
Hi Deleone, My pain is burning when I swallow.
I wish I could find it but a member on here posted a Discussion between 2 neurosurgeons discussing Gpn and they were saying how they didn’t think burning sensation was Gpn that it was more electrical mines burning Two and I had Mvd that didn’t work maybe I should start a discussion of who has a burning sensation and who has electrical more shocking sensation and if there Mvd worked How did your Dr diagnoise you ?
I had 3 sensations with my GPN: electrical and stabbing/sharp along the throat area and burning (like someone was holding a blow torch in my inner ear). 6 weeks after my MVD surgery no symptoms and no meds.
Mine was a sharp stabbing pain, and if it happened a couple of times or if severe enough (from moving my tongue, sneezing, coughing, laughing, yawning, brushing my teeth wrong, etc), it would trigger a long, continuous, horrible pain lasting several minutes. After it finally subsided, there would be a small window of 3 or 4 minutes where I had no pain. I figure the nerve set off like a fire cracker then depleted itself. It would recharge and I’d be right back where I started… Sometimes I get flashbacks to the terror, even though I haven’t had any pain in more than a year.