Any experience or advise on MVD surgery
I found a couple of parts of my MVD story and pasted it here:
1 month Post-MVD now
- I WAS ON 3 MEDS AND OFFERED A 4TH BEFORE I SPENT AN ENTIRE YEAR RESEARCHIING MY MVD AND MY SURGEON. HAD TO GET OFF TRILEPTAL BECAUSE EVEN THOUGH THE PAIN WAS MOSTLY GONE – I WAS BEYOND A ZOMBIE- IQ.
Here is the rest of my story - hopefully it will be years before that pain comes back!
Flew to Michigan from Kansas City for my first meeting with Dr. Casey.
He was funny and confident and really has done so many of these that it is probably like brushing his teeth. He answered all our questions.
So we took off for Canada to say we had been there! Nice distraction - but the 24 hours till surgery thoughts did come creeping in.
Surgery was on a Wed. - they moved my time to mid morning. My goal was to be out of there Friday.
I had just taken my last trilept-hell 36 hours before that -- I had to be reminded why I was there, but did not have any attacks per say.
When they took me into the recovery room to start IVs etc ( this is where you start and come back to)
I was treated like a princess. The folks at Oakwood hospital really helped my anxiety - especially when the drugs started kicking in. One BIG fear was that I would not wake up. I was told I had the Head of the Anesthesia Dept. on my case-- he was so nice and reassured me I would see him later.
I did not even make it into the operating room awake....that was good! My Husband and daughter were told 2 hours later that everything went well. I also had another twisted up piece in my head - so he clipped that too.
When I woke up in ICU -- I threw up a little bit -- kept asking for sprite/ice chips/water - I even sucked water out of a melted bag of ice chips -- I had never been thirstier --
Dr. Casey came in and and whispered in my ear to check my hearing - although they had been monitering it during the operation. I heard him fine. Later he did the same on the opposite side... which seemed fine at the time - but seems I still have 10% muffled hearing on the opposite side - the left side - not supposed to worry about it till week 6 or 8....I'm not really worried - almost 50 gonna happen anyway LOL
I have only had the pain of the initial 18 hour headache that comes after surgery--- In ICU it felt as if there were 3 elephants stomping on my head as my brain fluid settled.
1 night in ICU + 1 night in regular room - and I was discharged Friday. We went back to the Patient Guest Apartment and spent one more night in the area. I felt safer that way. We drove to my friend in Kentucky - and I slept 20 hours a day on Sat and Sun. Finally made it back to Missouri on Sunday and got in bed!
Took a pain pill to get my staples out - and did not even need to! My scar/incision looks the same as others posted here.
Basically stayed there IN BED for 2 weeks - and last night I did the most normal thing - Go Dancing!!! If I am not dancing - somethings wrong!
I did go to my local support group meeting to give hope to others - but I still have PTSD - even only having this for ONE year. I took the dogs out for a walk and covered my face from the wind. I still expect a jolt here and there -- and I think I had a couple of phantom jolts that were in my imagination.
I consider myself lucky, and that I will always have TN - I'm just in remission one day at a time.
Thanksssssssssssss for all your pre-op help! I had to lower my trileptal so that I could communicate with you all, and do my research for MVD.
I haven't used my brain at all for months. So I'm starting to do word games on the computer - I've got to go out and get myself a Social Work job and put my Master's to good use!
I'll be lurking and still helping people on here - Pay it Forward!
Kimberly In Kansas City
UPDATE- July 2012
Still here --- during week 11 back in January 2012, had to go back on lowest 150 trileptal -- some pain on and off but only a .5 on a scale of 1-10 -- and only 2-4 times per week -- seemingly at 8:30 pm so I could always use a lidocaine patch on my cheek too!
It is now 9 months to the day from coming home - and off trileptal for a few weeks -- have a verrrrry minor shock occaisionally, and still think must wait till Oct. 2012 - a year for most nerve endings to heal. I am VERY good for now.
I'm lucky -- and I would consider 1st, a possible Ketamine infusion, and secondly, another MVD with Dr. Ken Casey if ever needed.
Thanks for the detailed info.
Can you tell me if you are better compare to the time you were taking med. I am on 1800 mg of gabapentine now. I am foggy and druged out most of the day. I still have to work full time. I am sole provider for my family.
You are supposed to give the nerve 1 year to heal -- I had two that had to be padded.
Week 11 I had a setback but on a scale of one to ten -- about a one
Now I am pain free 98% of the time -- and what I do get is very tolerable without meds.
and can work and play and drive and sleep with a clear mind. The brain fog stopped my life in its tracks. If I have a bad spell which is not now but in the past -- I slap on an RX lidocaine patch!
I was lucky enough not to have to work during that year, but now trying to make up all those bills that were just regular, not medical.
Keep reading and keep posting!