Hello All: So... I had my MVD surgery on Wednesday, April 30th.
Let me start by saying that it was a very, very, successful surgery!!!! I woke up on Thursday and immediately felt absolutely no pain in my face, mouth, wherever I had it prior to the operation. My Dad woke me and asked what did I need and I said Please bring me the biggest plate of Pasta and salad with Italian bread! I hadn't been able to eat or drink for three months ( since this TN Beast began)
I should say I woke up from surgery on wednesday, but I remember absolutely nothing because I was heavily sedated.
I was in ICU for two nights, then moved to a Neuro Observation room for one night, then I was moved to a regular room for two more nights. My surgeon was able to place the teflon without cutting any veins, which I am thrilled about because if you cut then the body naturally regrows new veins, hence re-compression, and that poses threat for potential for MVD failure.
So, I am home, still in bed resting, its still very painful at the incision site. Im still dizzy at times so I cannot drive yet maybe at the two week mark, idk, have to ask Dr Brown his thoughts. Also still very very tired. Not sleeping well yet, scalp hurts like a "B"
I want to thank all of you for your words of encouragement and prayers throughout this horrible time. It is my hope that even though I am all better and pain free that I will remain here to help others in the future.
Yay for you!!! So happy for you :)! The recovery takes a little time but is so worth it. I had TN for 10 months before my surgery last year. I made my decision to have one at about 6 months into it all but had to wait to schedule in my mother-in-law and mom for help during my recovery. I'm just over the 6 month mark from surgery and pain and med free! I'm super happy that I took that leap of faith to have my MVD and can't wait until I'm at the 2.5 year mark like KC Dancer. We both had the same neurosurgeon and he is awesome! Best wishes to you for a speedy recovery. It will be here before you know it. In the mean time, take it easy and let other do for you.
Yes, I probably do have the worlds record here, lol. but honestly, there was absolutely no way I was putting up with the Horrid, inhumane pain of electric shocks going through my face/mouth. I couldn't eat, talk or do much of anything. I don't know how people wait years and years to have the surgery. The medicines were doing nothing for me and they are nothing but a bandaid anyway. Plus I didn't want to risk waiting and causing more damage to the nerve.
You are so right as far as bending! I get so dizzy if I do. So if I have to pick something up I slowly hold on to something and kinda squat down. long road ahead, but well worth it....
Kc Dancer Kc said:
You must have the worlds record here! You went from TN pain to MVD In THREE months?
It took me a year....thanks to this site.....many wait much longer.
Please remember your head was shaken and stirred!
Everything takes a year to go back to its place
Do not bend down with head or neck.... For as many wweks as you can get away with!
I had some pain back at week 11 after MVD
I was crushed....back on tiny meds... Then 11 more weeks....was back to good...
Congratulations fellow Brooklynite....well actually I was born and raised in Queens before moving to PA. Thats just great news. I am working on 31 yrs now since my MVD and been blessed to be pain free and symptom free ever since. Get a little bit on numbness periodically but I look at that as a reminder of where I was and where I am now. Wish you a speedy recovery and a lifetime of being TN pain free
Wow, 31 years ED! Thanks so much for continuing to post on this site. I am just over 6 months out from my MVD (pain free :), and it is so good to hear about someone who has been pain free since surgery as long as you have. The research goes out less than 20 years on what to expect (they only went out 10 years at the recent Indy conference) so it is so great for me to hear that it can very well last a lifetime :). I plan to keep posting on here over the years too.
Wow, 31 years ED! Thanks so much for continuing to post on this site. I am just over 6 months out from my MVD (pain free :), and it is so good to hear about someone who has been pain free since surgery as long as you have. The research goes out less than 20 years on what to expect (they only went out 10 years at the recent Indy conference) so it is so great for me to hear that it can very well last a lifetime :). I plan to keep posting on here over the years too.
Mybell..great to hear that you are doing so well and pain free. I was truly blessed. After suffering with unbearable pain for 8 yrs I stumbled upon a DR at Temple Hospital in Philadelphia who diagnosed exactly what my problem was TN. Up to that point I had been to dentist, oral surgeons, neurologists, holistic doctors, medical doctors and even a witch doctor or two and no one knew what I had. Again that was over 30 yrs ago when little was known about TN. By chance we made an appt at Temple hospital to their neurology group and I was assigned to Dr Kenning. Within minutes he told me what my problem was and what the solution would be and that was MVD. He was so reassuring that he made it sound like a piece of cake which was probably a good thing. As it turned out Dr Kenning learned how to do MVD surgery ,under Dr Janetta out of Pittsburg, who invented MVD. Point is to everyone out there dont give up hope and yes with Gods help you can have a lifetime of no more TN. .. I pray for you all
It's Kayla. Last Wed, May 8 went into surgery with MVD scheduled and rhyzotomy as back up. Surgeon ended of seeing four vessels surround my artery and put the teflon between each of the four vessels and artery. Then he cut the nerve right at my left ear area. I woke up nerve pain free but the sutures are extremely painful as you can imagine. The last couple of days my left ear hurts about mid-day. I know my body is is super overload recovery but concerns me if the rhyzotomy did not take. I think I am so paranoid about it all but have to remind myself tomorrow will be one week. I am taking it super easy now at the house and go to Surgeon next week to get the sutures out. Want to talk to him about it all. Surgeons give you very little bedside time on their surgery days. My Doc gives 2 fourteen hour back to back days of various surgeries. I don't know how this man has the energy just do to the surgery. Not to mention that he is the Chairman of the Mischer Institute and is also in charge of research of our condition. They are thinking more and more that it is genetic or perhaps the shape of our skulls play a part in all this. Well whatever it is it is a curse on all of us who have it. I get tired and need to rest, just took bath and now ready to go back to bed. Healing is not exciting.
Wishing you all the best and remember keep a positive outlook as best you can.
Well my God, you are truly Blessed! That is really really great to hear that] you are pain free so long. It really injects a lot of hope for me.
So where in Queens were you? I am From Queens, born and raised in Howard Beach, moved to Brooklyn when I got Married in 93. I am always in Queens still, my mom is still there. My Grandparents house was in Ozone Park, Its still nice there. My mom and I go to PA together a lot too, we visit Mt Airy ( haven't been there since TN began) I can't wait until I am better so I can go again with her.
For now, I am focussing on my health, I had a minor setback this week, Bells Palsy found me! Dr said its very rare to get this complication two weeks out of MVD, so I am praying real hard it goes away with the steroids.
Again, its was really wonderful to see your message,
Ed said:
Congratulations fellow Brooklynite....well actually I was born and raised in Queens before moving to PA. Thats just great news. I am working on 31 yrs now since my MVD and been blessed to be pain free and symptom free ever since. Get a little bit on numbness periodically but I look at that as a reminder of where I was and where I am now. Wish you a speedy recovery and a lifetime of being TN pain free
I am sure that you will do great. When you wake up pain free that is a terrific sign. I am from Ridgewood and my wife is from Richmond Hill right down the road. My brother still lives in Glendale. Spent many a Friday night down Cross Bay Blvd and weekends at Breezy Point or Rockaway. You are right Howard Beach is still beautiful today with some great Italian restaurants. Mt Airy is a great place since they renovated and built the casino. I go up their a few times a year to play golf. Sorry to hear about your setback with the Bells Palsy but I am sure they can get that under control. Wishing you a very speedy recovery and let me know how you are doing....Lots of great memories in Queens
Neeni said:
Hello Ed !!!
Well my God, you are truly Blessed! That is really really great to hear that] you are pain free so long. It really injects a lot of hope for me.
So where in Queens were you? I am From Queens, born and raised in Howard Beach, moved to Brooklyn when I got Married in 93. I am always in Queens still, my mom is still there. My Grandparents house was in Ozone Park, Its still nice there. My mom and I go to PA together a lot too, we visit Mt Airy ( haven't been there since TN began) I can't wait until I am better so I can go again with her.
For now, I am focussing on my health, I had a minor setback this week, Bells Palsy found me! Dr said its very rare to get this complication two weeks out of MVD, so I am praying real hard it goes away with the steroids.
Again, its was really wonderful to see your message,
Ed said:
Congratulations fellow Brooklynite....well actually I was born and raised in Queens before moving to PA. Thats just great news. I am working on 31 yrs now since my MVD and been blessed to be pain free and symptom free ever since. Get a little bit on numbness periodically but I look at that as a reminder of where I was and where I am now. Wish you a speedy recovery and a lifetime of being TN pain free
Hi Neeni, saw your post from a while ago, how did your surgery and recovery go? Did it work for the pain. I also live near Philadelphia but am so afraid to have the surgery. Currently on Oxcarbazapine but after two years it’s no longer very effective. Did you have any other surgical proceedures before the MVD?