1 month Post-MVD now

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 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

Kimberly, your story is heart-warming and told with disarming humor and grace. Thank you so much for sharing a good experience in a forum where bad outcomes sometimes tend to predominate because people come to such places looking for help with deep problems.

Please do more than lurk. Your experience can be constructive in answering the many questions which arise here concerning MVD surgery.

Go in Peace and Power

Red

Kimberly,
I feel so very pleased for you. I was only thinking about you driving back tonight and wondering when we would hear from you and look!! Well think of the …! So good to read of how brave you have been and how wonderful the result. Enjoy your dancing!

Jackie

Kimbery, thank you for staying in touch even after your MVD surgery. We need more people like you, I have noticed many of the people who have had the surgery done, dissapper right away. I'm going to travel about an hour and a half to get my surgery done and I really admire you for what you did!!

Still here --- 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.

KC, do you take the Trileptal everyday or only when you get the pain? That's what I was taking when I first got TN, and I only took it when I got the pain. I'm going to get my surgery next Wednesday and I tought the pain goes away right after the surgery. According to my Dr. he takes people off the TN pain medication right after the surgery is done, which is something I'm looking forward to do.

Kimberly, are you saying you had MVD on BOTH sides? Since he checked your hearing on both sides, it made me wonder. If so, that's the first time I ever heard of that. So your pain is completely gone now? If you went dancing, congratulations. I am surprised at how few days they kept you, especially if it was both sides, and I'd never heard of a patient guest apartment. I love that idea! Congrats, may the pain never return!
Sheila

Sheila - Oh no -- just one side -- this is my "old" story that resurfaced from last year! Just one side!

Mitzi - many doctors leave patients on meds and wean them off -- I weaned off before because I chose to -- how else was I going to know if it worked when I woke up! But some this is to scarry.

Post on the main boards when you are back and up and running! Good Luck!