You will do great! I had an MVD almost 2 years ago. I was scared to death but with prayer and amazing anesthesiologists I was very comfortable.
Thanks so much! I requested to be both of their friends on facebook. :)
Debbie said:
Hi brbgrl. The girls name is Abigail Miller. You can find her on Facebook. I will tell you she has a teal pic that says Team Abigail. Her mom is Dawn Neumann Miller. You can friend her too. Dawn said they are happy to call you even. It will be nice to hook up with anoth teen. She literally just went home yesterday from her MVD.
Hello I am considering surgery as I have had TN for about 7 years though have had several years with no pain here and there.
I have consulted 2 neurosurgeons and they both say the same thing re the surgery however one does not replace the piece of skull they remove where the other does. One suggested they may need to sever part of the nerve which means my face would be numb (forever) but the other states he would not do this as there are other options. The MRI suggests there is a blood vessel on the nerve.
What did your surgeon do?
Thanks
Most times if there is a blood vessel on the nerve, they tie off & remove a vein and if it's an artery they lift it up and put a teflon pad under it to support it and keep it off the nerve. Cutting the nerve is a destructive procedure and will cause permanent facial numbness. I would do more research into the different types of surgeries before making a decision to cut the nerve. I had two MVD's and in both of them the skull bone was not replaced, just patched with an acrylic-type cover. Best of luck to you. Hope you have another long period of remission and can avoid any surgery.
Hi brbgl
I was also 17 when I was struck with TN way back in 1963. I had never heard of MVD than. I had nerve resectomy with permanent relief from pain but also lasting numbness on face. You have the chance of coming out with no pain and also preserving sensation on face.
R u undergoing MVD? U just mentioned brain surgery.
Best of luck
Yakub
Hi Yakub -
Wow...1963! They had not invented the MVD procedure yet. When you had the nerve resection, was it in the brain where the nerve originates? Was it only numbness or any kind of facial drooping/movement problem that resulted too? Absolutely amazing that you have had no pain recurrence since 1963 (I was in 10th grade then, BTW and not quite 17 yet).
Yakub said:
Hi brbgl
I was also 17 when I was struck with TN way back in 1963. I had never heard of MVD than. I had nerve resectomy with permanent relief from pain but also lasting numbness on face. You have the chance of coming out with no pain and also preserving sensation on face.
R u undergoing MVD? U just mentioned brain surgery.
Best of luck
Yakub
Thank you Not Again. Do you notice any difference with having the Acrylic cover? I have two small dogs, one which loves to sit on my shoulder so have been concerned re this. My other problem is that I could go through the public system at literally no cost however no choice of surgeon and not sure when the surgery would occur. Otherwise I can go private, out of pocket cost of $1500 however choice of surgeon, timing and the procedure I am more happy with. The private surgeon did an MRI as the last one I had was 7 years ago wheras the surgeon in the public system didn't do much at all.
Not Again said:
Most times if there is a blood vessel on the nerve, they tie off & remove a vein and if it's an artery they lift it up and put a teflon pad under it to support it and keep it off the nerve. Cutting the nerve is a destructive procedure and will cause permanent facial numbness. I would do more research into the different types of surgeries before making a decision to cut the nerve. I had two MVD's and in both of them the skull bone was not replaced, just patched with an acrylic-type cover. Best of luck to you. Hope you have another long period of remission and can avoid any surgery.
I just saw that you are having your surgery on Wednesday and I wanted to wish you the very best of luck and I will keep you in my prayers. I had mine 30 years ago at age 33 and I hope that you get the results that I received. TN pain is horrible so I know what you are going through but hopefully when you get out of surgery on Wed you will be pain free. You are young and like others have said the procedure is not very difficult. The after pain is very minimal and there was very little discomfort. I have had more after pain and discomfort from hernia and gall bladder operations. You are young when you get home just relax for a few weeks and before you know it you will be back doing the things that you love.As others have said getting the MVD was absolutely the very best medical decision I ever could have made..Good Luck
Thats so much for the encouraging words! I am very anxious as Wednesday gets closer, but also excited to be pain free finally!
Ed said:
I just saw that you are having your surgery on Wednesday and I wanted to wish you the very best of luck and I will keep you in my prayers. I had mine 30 years ago at age 33 and I hope that you get the results that I received. TN pain is horrible so I know what you are going through but hopefully when you get out of surgery on Wed you will be pain free. You are young and like others have said the procedure is not very difficult. The after pain is very minimal and there was very little discomfort. I have had more after pain and discomfort from hernia and gall bladder operations. You are young when you get home just relax for a few weeks and before you know it you will be back doing the things that you love.As others have said getting the MVD was absolutely the very best medical decision I ever could have made..Good Luck
Good luck and while it is scary for any age, remember this procedure has been around a long time and your surgeon's have done this before.
John
I hope all things go well!
It's scary at any age. My MRI didn't show a compression either, so, like you, that made me even more worried about having surgery. I had mine done in November, 6 days before my 31st birthday. My TN and ATN started when I was around 21 years old. If I had known what I had and about MVD back then, I would have done it to try to get rid of my pain. My surgeon found 3 compressions when he went in and I'm now much better.
Here's my opinion: don't think that your experience should be or will be exactly the same as others. Some have had surgery and gone home in 2-3 days. I was in ICU for 4 days and a regular room for 3 days. At first I was worried that something was going horribly wrong but I realized that everybody heals differently. Someone mentioned a few months ago that they didn't need any pain medicine after surgery, just Tylenol. I was on a constant IV drip (plus extra boosts) of Dilaudid (a strong pain killer) for 5 days. It's good to read other's experiences to get an idea of what the average experience is, but don't count on it being your exact experience.
TIPS FOR THE HOSPITAL
The best tips I got from other people here were this: take a neck pillow (like the ones people use in airplanes to sleep) and use icepacks on your head and neck. I was surprised that my neck hurt after surgery. I listened to what people said and took a neck pillow to the hospital. SO glad I did! It helped a lot. I also asked for lots of pillows to help position my body comfortably. The icepacks you can get at the hospital, but make sure you have some for home. The ice helps a lot with the sore neck and eventually (when the surgeon says it's ok) it helps with the incision. Besides that, take it easy afterwards. Listen to the doctors and don't do too much. I started moving things around that were too heavy and hurt myself and therefore delayed my recovery a little. It was totally my fault for not listening. So listen to them! LOL
Definitely check out the MVD group. There are so many stories there. They were very helpful when I was deciding to do surgery and after my surgery. Lots of nice, knowledgable people that can share their experience with you. Feel free to post any questions you might have on it. :)
brbgrl1017:
Here's a link to one of our discussions on the MVD group that might be helpful to you.
http://www.livingwithtn.org/group/mvds/forum/topics/mvd-recovery-and-prep-advice-please