Shindig, I am very excited to hear of your surgery success. I also saw a post via shindiggirl that showed photos of inside your skull. I thought that it was excellent how communicative your doctor was with you right after the operation. I have heard theory that veins in a certain place near the TN root can cause type 2. Seems you had an artery/vein 1-2 punch. Glad to say congrats to you instead of commiserating. Congrats! Keep on healing!
Don
Wendy, where is Dr. Brown located? Is he/she also at Johns Hopkins? I'm completely new to this condition having just been diagnosed a week ago, but I'm very interested in developing a network of doctors who have actually studied TN2 and developed successful treatments. I'd appreciate any help you could give.
Thanks so much!
Niel
Hi Niel,Iām not sure, I thought he was in New York,shoot my brain is pretty mushy feeling right now. (Lol) ,Been up all night, not on usual, but have to go have another MRI and MRA at 5:00am.I have had tn1 and tn 2 for 23 years and I canāt think of much I havenāt tried and nothing helped.I REALLY thought I was going crazy and the drs. were too, then about 10 years ago I FOUND THIS WEB SITE!!! Oh, I just had a thought ( imagine that . Ha ha Go to the doctors in the black bar and then hit ādoctors we loveā, I would think his info.would be there.BACK TO ORIGINAL POST.Both mvd and gamma knife failed and made things way worse. I was told by what I believe to be a great surgeon, highly thought of by I some members here. Dr. Ken Casey here in Mi. that I had a tangled mess of blood vessels wrapped around the tn nerve.He then padded the two spots he thought was causing the problem. That was the best he could do, that was in 2006,since he has told me he didnāt suggest any other surgries,ect. Meds, side effects became to much.Since Nov. of just this past year is the best I have been in my struggle with tn over the 23 yrs.It is sttill a slow process, but continuing to get better.PHENOBARBITAL, LYRICA, EFEXOR and GALLIXIA (an awesome cream!!) That is withand without pain pills. I wish that on everyone here to find there functional life with this disease. MY GREASTEST WISH IS TO FIND A CURE !!! Well I have procrastenated long enough have to get ready for hospital.OH! YUK! KNOW THINK POSTIVE , OH! YEAH! LOL !!! Wishing all A PAINFREE DAY Dawn
Niel
Dr. Jeffrey Brown is in NY. He is the neurosurgeon who performed the MVDs on both my right and left side, and also implanted my peripheral nerve stimulator. I highly recommend him!
Please ask me any questions you may have .
Best,
Christine
Thanks so much, Christine. I truly appreciate the help!
Christine said:
Niel
Dr. Jeffrey Brown is in NY. He is the neurosurgeon who performed the MVDs on both my right and left side, and also implanted my peripheral nerve stimulator. I highly recommend him!
Please ask me any questions you may have .
Best,
Christine
I had an MVD done by Dr. Jeffrey Brown in Great Neck, NY. It did not work. He also did not seal the wound properly, so I got very sick (emergency hospitalization) and had to have a corrective surgery done by him a couple of weeks later. I also felt that the hospital, Winthrop University, did a poor job as it was overcrowded for both my scheduled surgery and subsequent emergency surgery. I was not able to recuperate on the floor where MVD patients usually go post-op, so I believe strongly that they missed the initial complication because normal post surgery patient care procedures were not followed. I do not recommend him. Niel, if you have any questions, let me know.
Don, I also had a mvd that was not successful in 2006.In my case I feel I had a very good surgeon very up on tn, Dr. Casey, in Mi.I have a mess of blood vessels wrapped around the nerve. He padded in 2 places were he belived the problem was .It did not help, and ended up in worse pain and that side ( right) of my mouth is numb and all of my tongue. Wishing you the best, dawn
Dawn,
I am sorry to hear about the numbness in your mouth and tongue. I assume you are saying that this numbness is permanent. That is a tough thing to be going through.
Potential patients need to realize that issues like this happen to many MVD patients.
I had numbness on the left side of my tongue and lip after my MVD surgery. I found it to be very disturbing and I was fortunate enough for it to not be permanent. I constantly was "feeling the numbness". I also lost my sense of taste. That also was extremely disturbing when I ate food. (The one good thing about it was that I was able to eat hospital food easily). It took several months for the numbness to disappear and the sense of taste to come back. Supposedly, this temporary numbness often occurs from MVD surgery, it is typical, but I was not aware of it before I had the surgery. It was only after I asked the surgeon about it after I woke up after the surgery that he told me about it. (It does not happen to everyone, but he said it was typical.) I hate to hear that it is permanent for some people. Within 6 months my sense of taste came back completely and the numbness in the tongue/lip also seems to have come back completely.
Another disturbing effect of the surgery was that I lost most of my hearing in my left ear, the side I had the MVD on. Again, this was mostly temporary, but again it took several months for the hearing to slowly come back. I often had to ask people to repeat what they said because I could not hear them. I still have a small hearing issue with that ear, but it is not always noticeable to me, just in certain situations.
Of course, I would gladly go through life with a numb tongue, loss of hearing in one ear and lost of sense of taste if I had a reduction or elimination in my TN2 pain. But I had no reduction in pain as a result of the MVD.
Potential patients need to understand the MVD surgery can be very traumatic, especially if something goes wrong. It went wrong for me and it can happen to you just as easily. That is why older TN sufferers are encouraged to use alternative medical procedures for treatment of TN, even if those alternatives have a lower success rate.