Success!

I posted this on the main discussion board, but thought I would share here as well. I'm willing to answer any and all questions as all your posts have helped me so much in getting to this point.

I had my "keyhole" MVD at Duke Raleigh Hospital yesterday performed by Dr. Takanori Fukushima. I am ecstacic to report I woke up completely pain free! No numbess, no hearing loss, no blurred vision. I will not lie. The first 6 hours after surgery I felt somewhat like an 18 wheeler had run over my head. Mostly, I think the stiff neck from being immobilized for 4 hours gave me the most pain. It is much better today and I am up and I moved from ICU to a regular room around lunch time. I have felt no nerve pain at all since surgery. Dr. Fukashima said I had two compressions. One was a fairly large vein laying on the nerve. The other was an artery looped around it. Both were at points which would explain the fact that I only had pain under my teeth. Because of the technique Dr. Fukashima has pioneered and perfected I have only a two inch incision. No staples and the stitches will desolve. My recovery time should be about 10 days. Amazing and miraculous after the last four years I have endured. I would encourage anyone who has T1 pain and is willing to travel to Raleigh, NC to research Dr. Fukushima. He is known world wide in neurosurgery. Most of the nurses/staff I've had have told me how many people travel from all over to have him do their brain surgeries for various problems. It is only the day after surgery I realize, but Dr. Fukushima felt there was a 95% chance for me that this was a lifetime fix. So, today I am feeling hopeful and grateful to be looking at a life without TN. Happy to answer any questions.

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This is great news! I am so happy for you, and encouraged for the rest of us that there is always hope on the horizon. It seems like this keyhole surgery would be good for folks like me who already had an MVD, but still have some pain and other side affects (my vision has been weird ever since MVD 2 years ago.)

Thank you for sharing your good news! I love reading about a fellow TN'er who has escaped this torture. :o)

I'M VERY HAPPY FOR YOU! I will definetly keep him in mind. My TN has come back after MVD 2yrs ago. Good news Thanks. Keep us posted on your recovery.

It is still beyond comprehension to me that more surgeons do not learn this techinque. It is so much less invasive and the risks associated with hearing loss, numbness, etc, etc are minimal. Not to mention the shortened recovery time. I feel very blessed that I heard about Dr. Fukushima and consulted with him, as well as a neurosurgeon in Charlotte, before I decided to proceed with surgery. I would not hesitate to recommend him and he would be worth traveling if you have to. I drove 3 hours. Not that far, but definately worth it.

Very happy for you!! you mentioned tn1, will he only operate on that form?

Wendy

I'm not sure Wendy. But he has a 96% cure rate for TN1, which is what I had. I seem to remember him saying type 2 was harder to treat. But he is a surgical genious and I would definintely recommend a consult with him if you are close enough. His office staff is so easy to work with. His website is carolinaneuroscience.com. You may find more info there.

Michelle

Great news & I will seriously consider him & check out the website. I am not sure if I had the keyhole procedure as I have a relatively small scar actually a depression from where the bone was removed. I will ask my surgeon as I am following up since my TN1 is back. Please let us know your progress .

I love to hear stories like this, it give hope to everyone, thanks for sharing

thanks Michelle, Duke was actually my back up plan, depending on how this all goes with Johns Hopkins, I will check him out. Wendy

Everyone I've come in contact with in the hospital that works with him says he is a genious. And I can say that my nerve pain is 100% gone and two days after surgery I am walking unassisted up and down the hallways. Have really had minimal pain from surgery. I would encourage anyone who may be a good candidate for surgery to considerate it and would highly recommend Dr. Fukushima if you can get an appt and come to Raleigh, NC.

This is great news! Thank you for sharing .

Got home this evening after 3 hour drive from Duke. They gave me Toradol and Percocet before I left so trip was good. Not having too much pain. A little more of a headache and stiff neck today, but it is day 3 so that is sometimes the worst. Still no nerve pain...not one twinge! I will try to post picture of wound later. It's still coverered but doesn't seem to horrible. I get to wash my hair tomorrow and that will feel so good! Also, no staples. Whatever is there will desolve and I don't have to go back to have anything removed.

Day one home from hospital:

631-P1020281.JPG (5.09 MB)

Thank you Blder for sharing, continue to recover and praying for you along this journey Enjoy the hair wash!

Today was day 5 post op. Feeling a little blue that I'm not feeling better than I am. Trying to be patient. Since home from hospital on Tues, I've just laid in bed or on couch mostly. Having a lot of stiff neck/headache discomfort still. If I stay on top of the Tylenol it makes a huge difference. I also switched back to percocet at night. Very hard to get comfortable for sleeping. I'm paranoid about complications, but I think I'm doing ok. The csf leak or bloot clot risk scares me. Trying not to be neurotic. Tape over wound is starting to curl back. I've washed hair twice. Any input on how long until any of you uncovered your wound?

This is brilliant so pleased and will keyhole surgery does this mean u have a very small scare ? Keep recovering

Thank you for the info...I'm waiting awhile to see if I need the MVD. Have to remove some jaw junk first and see if that works. If not, then MVD. Thank you for the info on your doctors and your experience. Appreciate you sharing.

Tinkerbell

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.

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

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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.