blder1, that is so encouraging that you went on vacation and are doing so well. I went back and read your notes 5 days post op. You've come a long way in a short time! That's encouraging. What type of TN did you have? What type of work up does Dr. Fukushima do at Duke? I know another person on here used another Duke neurosurgeon and seems to have had good luck, too. I know Dr. Fukushima has been around a long time. My ortho was telling me that there's a band called the Skull Base Group and it consists of alot of these docs and they play at their meetings. They must be musically inclined as well. Sounds like Ben Carson is good too. I've been warned though that since my TN came on from a jaw surgery and is atypical, 24/7 pain in V2 and V3, I should wait until after I have some more jaw surgery to fix some lingering problems before I jump to MVD. The MVD might not work until I've had the jaw surgery done. The jaw surgery is pretty significant because it's basically undoing what the first doctor did. It's sawing through my upper and lower jaws, putting them back together with bone plates and screws, it's taking the left jaw joint prosthesis out and I will not have a jaw joint on that side for a month which means back to eating liquids or pureed foods, then I go back into surgery 4 weeks later to have a better fitting jaw joint put into place and some bone grafts taken out of my top jaw bone. When I press on that top jaw bone, there's a sharp shooting pain into my top lip as if someone is sticking a needle into the top lip. So, that bone graft is sitting on a nerve. The problem is getting those bones back together without the use of bone grafts again. My face will go back to it's normal shape which is good because the doc elongated it and I feel like Mr. Ed the horse with the long face and gummy smile that I didn't have before surgery. So, you see, lots has to be done. Red, advises me to wait until after the jaw surgery, then if that doesn't do the trick by moving things around and putting them back in their normal positions, then go for MVD or at least a consultation. So, I listen very closely to what all you are saying about who your surgeons are, are they thorough or is this just another day in the OR and a few more bucks in the pocket, are they caring, do they respond to phone calls, will they be honest with you if you are a candidate or not, etc.
I thank all of you who are doing well and come back to tell those of us who haven't made that leap yet or cannot make the leap for whatever reason, how well you are doing and there is life after TN. Chronic pain does change ones personality. I was the bubbly one and now alot of time when friends call, I don't even answer the phone because I just cannot talk right then. I'm too much in pain, too fatigued, or too something. So, I agree...it can change a personality. On days that I feel like my pain is a 5 instead of a 7/8, I feel like the almost old me. I know I'm in there somewhere.
So, to all of you who keep in touch with us on this site, please don't abandon us. you are our lifeline to alot of information. We want to know how you are doing. We want to know if it continues to work. If you do have problems, we want to know what you are trying to do about it. Many of us cannot do MVD or have had bad results, so it's so fantastic to hear that it can work.
I can't wait to hear from those of you who have it upcoming. You must be nervous and excited at the same time! Please let us know who you are using and how you are doing. I need to go to each person's page but I forget to write down the names in one place of who has had what! I need to do that. So thanks for taking the time to come to the individual groups when you feel up to it. I appreciate it and I'm sure others do too!
Thanks, again,
Tinkerbell aka Tracy
tracyburttata@gmail.com
blder1 said:
Almost 4 weeks past surgery now and about 90% back to normal. Still having minor numbness that comes and goes. Also, have a sensation of tightness around/under scar. Both of these are most noticeable when I'm tired or have had a very active day. We actually went to Cayman Island on vacation last week and I did fine. I was able to swim and snorkel without it bothering my scar. My dr said I just couldn't stay "underwater" for an extended period. It was so wonderful to have a pain free vacation for the first time in almost 4 years!
Tinkerbell, my scar is less than 3 inches. The surgery was very much worth it. I didn't realize until afterwards how much the pain of TN had changed my personality. I would encourage anyone who finds a surgeon they are confident in and who otherwise has few health problems to go for an MVD. It has given me my life back. I still think about TN everyday and fear that the shocks will return. But as time passes and all the surgical side effects go away I hope to get past the daily memory of what living with TN was like. Best wishes and feel free to ask questions. I feel it is my duty to encourage others to not give up seeking a cure for their TN as I got so much info/encouragement from this forum when I was seeking information.
