I realize this post probably sounds crazy, but I have to figure out a way to lessen the pain or find a physician who can help. My situation is weird - the neuro opthamologist at Hopkins said he has never seen it before. So I need ideas please!
I have Ehlers Danlos Hypermobility and either have ATN or trigeminal migraines that can be triggered or worsened by reading. My problem is that both of my eyes fight for dominance when I read, but my brain is only wired to be right eye dominant. I have tried eye patches and then Baclofen helped for awhile. Botox did not last long enough to be worth the hassle. But now I am back to unrelenting headaches - mostly in the V2 area. (I also take Trileptal, Topamax, and Effexor)
I had a C1/C2 fusion last August for Atlantoaxial sublaxation. This surgery basically eliminated my occipital neuralgia. (yea!)
Normally I would research my question, but I just cannot read these days. Since my case is so strange, does anyone know if the V2 nerve can be frozen or something similar?
Thank-you!
Trish
Hello, I've had 2 issues with the TN on the right side of my face ( I have Multiple Sclerosis causing the issues) the first being the V2 nerve, I had a Percutanous Rhizotomy in Nov 2012. I've had No issues with the V2 since BUT I started having sensations/problems with the V3 in Jan 2014 and so i had the same procedure done with that on Feb 14th, 2014. So far these seem to be helping me greatly. Hope my thoughts help.
Jeff
I had a surgery 8 years ago where an lmplant was placed behind my left ear that stops the pain. I have had no pain from my TN since. I can’t remember what the surgery was called but your dr might be able to find out. My surgeon was Dr. Jamal Taha from Kettering hospital Kettering Ohio. I know he’s written about the surgery for doctors journals. I think I might be written about in one because at the time I was the youngest person he treated with it, I was 43 at the time. I do not regret having this surgery.
Orbital nerve blocks? I'm not sure, but I think these can be done in any of the branches of the nerve.
My pain doctor does Trigeminal Nerve Blocks. It numbs all 3 branches of the Trigeminal nerve. I don’t know how long it lasts though.
Thank-you all for your great replies. I have tried nerve blocks. They worked great at first, but then I had reactions after the last two blocks.
Can anyone recommend a neurosurgeon in Houston?
Trish-
Below are docs in Houston that have been used by patients on this web site. There are also some good ones in Dallas, though I know that’s a bit far to travel. Hope this helps.
Houston
Dr. Randolph Evans
Dr. R. Achari, MD
Dr. R. Harper, MD
West Houston Hospital
Dr. Karl King
St. Lukes Hospital
Dr. Viswanathan
Mischer Neuroscience Institute at Memorial Hermann.
Dr. Dong H Kim., Neurosurgeon
http://www.memorialhermann.org/physiciansearchmh/PhysicianDetail.aspx?provid=1589#
MD Anderson
Dr. Ashwin Viswanathan
I don’t know, but do they do radiofrequency on the nerve? It usually last longer than a block but also can sometimes regenerate.
Hi to all. Trach's question has prompted me to ask - If it's not already here, why doesn't Living With TN provide a list of all possible treatments for TN,( perhaps all types of face and head pain), and perhaps the success rates for the specific issue(s). Then, perhaps a list of recommended neurosurgeons for as many areas (and countries) as possible? That could be so helpful and of course it should be without any liability on LWTN part, or on those who contribute and recommend. Has it been asked for? Best wishes to all, Dove.
Agreed. My Dr is Andrew Grande @ The University of Minnesota. He has extensive TN experience. He has done both my Percutaneous rhizotomies.
Trach, I would contact Red Lawhern on this site. Of all folks on here he is the one, in my opinion, who would have the most thorough knowledge. I have no idea.
Sandra Scott Feltner, Did you have Microvascular Decompression surgery?
sandra scott feltner said:
I had a surgery 8 years ago where an lmplant was placed behind my left ear that stops the pain. I have had no pain from my TN since. I can’t remember what the surgery was called but your dr might be able to find out. My surgeon was Dr. Jamal Taha from Kettering hospital Kettering Ohio. I know he’s written about the surgery for doctors journals. I think I might be written about in one because at the time I was the youngest person he treated with it, I was 43 at the time. I do not regret having this surgery.
Sandra, to me that sounds like you had Micro-Vascular Decompression, known as MVD. You said you had an "implant". MVD is the only thing I know of that uses anything similar to an "implant" -- which is actually a piece of Teflon tape. I looked up your Dr. Taha. It seems he's associated more with Gamma Knife. I'm surprised he did a MVD....if in fact that's what you got. Whatever, 8 yrs with no pain is great. Whatever it was, count your blessings and thank God he did the right thing.
Tamtam said:
Sandra Scott Feltner, Did you have Microvascular Decompression surgery?
sandra scott feltner said:I had a surgery 8 years ago where an lmplant was placed behind my left ear that stops the pain. I have had no pain from my TN since. I can't remember what the surgery was called but your dr might be able to find out. My surgeon was Dr. Jamal Taha from Kettering hospital Kettering Ohio. I know he's written about the surgery for doctors journals. I think I might be written about in one because at the time I was the youngest person he treated with it, I was 43 at the time. I do not regret having this surgery.
I went to Dr. Dong Hee Kim, MD, at Texas Medical Center in Houston, he said mine was the worst he had ever operated on. I would go back to him in a heartbeat, there are LOTS of Doctors who SAY they can help, but truly, ask about their success rate. I had GammaKnife which is a form of freezing the nerve, or inactivating it, but too much radiation and I have horrible aftereffects, still have them, but the MVD with Dr. Kim, stopped the lightening bolts and fizzing explosions in your face, My TN is in all three branches.
mrl said:
Trish-
Below are docs in Houston that have been used by patients on this web site. There are also some good ones in Dallas, though I know that's a bit far to travel. Hope this helps.
Houston
Dr. Randolph Evans
Dr. R. Achari, MD
Dr. R. Harper, MD
West Houston Hospital
Dr. Karl King
St. Lukes Hospital
Dr. Viswanathan
Mischer Neuroscience Institute at Memorial Hermann.
Dr. Dong H Kim., Neurosurgeon
http://www.memorialhermann.org/physiciansearchmh/PhysicianDetail.as...
MD Anderson
Dr. Ashwin Viswanathan
Hi .I agree that such a list would be a great help , and this applies to both the USA and the UK , where I reside .
Regards and good hunting . Graham
Dove said:
Hi to all. Trach's question has prompted me to ask - If it's not already here, why doesn't Living With TN provide a list of all possible treatments for TN,( perhaps all types of face and head pain), and perhaps the success rates for the specific issue(s). Then, perhaps a list of recommended neurosurgeons for as many areas (and countries) as possible? That could be so helpful and of course it should be without any liability on LWTN part, or on those who contribute and recommend. Has it been asked for? Best wishes to all, Dove.
LWTN does have a reccomend a Doctor Page which includes Neurosurgeons.
http://www.livingwithtn.org/page/find-a-doctor-for-chronic-facial-pain
A list of treatments;
http://www.livingwithtn.org/page/info-9
LwTN’s Face pain Info pages located in the black header bar above has a wealth of information…
Ask moderator, RED here!
cryoblation ???
I want to thank-you all again for your responses. I truly appreciate your advice and comments.
My neuro ophthalmologist referred my case to Dr. Michael Lim at Hopkins. Since my neuro ophthalmologist understands Ehlers Danlos and Dr. Lim is on TN’s good doctor list, I decided to travel to Baltimore instead of staying closer to home. My appointment is Thursday…yeah!
I will keep you updated!
Hello,
I want to update you all on my surgery. I had glycerin rhyzotomy on Tuesday by Dr. Michael Lim at Hopkins. Since my symptoms do not fit in any clear category, he wanted to start out very conservatively first. Thankfully the procedure was a success. The nerve pain is gone! Dr. Lim said the MRI showed an artery was possibly obstructing the nerve, so I assume MVD is next on my list in the future.
Although I was thoroughly impressed with my experience at Hopkins, I will probably have the MVD in Houston. The cost to travel and out of network insurance is expensive. Plus it will be easier on my family. I really appreciate the doctor recommendations.
Red, I apologize never contacting you - I just had so many problems reading that I never finished the email. But I am reading now albeit slowly.
I have one question, for those who have had these type of procedures, have any of you still had a dull pain behind your eye, temple, and eye brow? My sister (who is a physician) insists that this pain is sinus pain. I rarely have allergies, but have started taking a H1, H2 histamine blocker plus ibuprofen. No change. Although this pain is nothing compare to before, it is still bothersome. Have any of you experienced the same thing?
I am so grateful to for your help!
Trish