I am undergoing this operation on 5/29. It will be the third operative attempt to end my pain on the left side. Has anyone had this done? Looking for more experiences. I have talked to a few, and it's a mixed bag. My surgeon is highly experienced in this operation.
No experience, but wishing you the best of success with this.
Karen
I have had total sensory rhizotomy. Who is the surgeon?
Seems like every doctor ha their own jargon for procedures. I have had left side radio frequency rhizotomy at Cedars-Sinai Pain Center with limited success. I am researching for an additional partial rhizotomy but the terminology varies widely from doctor to doctor because the results vary widely. Wish you the best success and look forward to hearing your results.
Will you be awakened during your procedure like the method shown in:
https://www.youtube.com/watch?v=NioxbJ7OyKI
Percutaneous Procedures for Trigeminal Neuralgia: Radiofrequency and Balloon Compression Rhizotomy
My doctor believed the anesthesia prevents the patient from making a determination of the pain during the procedure so I was not awakened. I have had nerve blocks as well and my pain level increased back to severe as the general anesthesia wore off. So, I cannot say whether waking the patient during the procedure is good or bad or useful or not. But, it is a nagging thought.
Good luck!
I have had this done four times at the Lahey Clinic in Boston. I have had relief from the shocks and stabs all the times. The problem is that that darn never grown back which is why I had it done 4 times. I still take a bit of Tegretol. I have MS so it is the only treatment available for me. This last time has almost lasted me 3 years (fingers crossed). Good luck. The exact name for what I had done is "radio frequency lesioning."
RB, if you search on "ablation" or "rhizotomy" in the search box at top right, you'll get a lot of conversations and postings here on site that are pertinent to your concerns. Likewise, you might check the Face Pain Info tab for basic information on the procedure and its outcomes.
Regards, Red Lawhern
Yes it seems there are many names for the same thing. I have 3 Percutaneous Stereotactic Radiofrequency Rhyzotomies. 2 helped with pain for 7 weeks approximately 1 made things worse and from all of them I have ended up with AD, Anesthesia Delarosa. There is no cure or med for the AD pain and I regret doing them. Wishing you well
I’ve had rhizotomies done on C5-c7 ( both sides) twice, which virtually eliminates the TN pain in my face and head. It lasts for about a year and a half. I take no meds. This was after gamma knife and MVD were unsuccessful. I am thinking it’s about time for another round.
Thanks all. This is done through the same opening as the MVD. I’ve had the balloon compression with no luck and AD. This is what I’ve been told is my best option by several docs.
I had a Thermal Rhyzotomy by one of the best neurosurgeons in Canada in 2013 and still I was one of the unfortunate few who ended up with severe Anaesthesia Dolorosa of the entire left side of my head including mouth and tongue. Just be aware of the potential complications which in my case is worse than the TN was. Good luck and God Bless+
Hi all, I had sinus surgery a year ago and developed TN. The pain was so bad, I saw a neurologist and after trying the meds, ( which did nothing ) My
Husband went to a seminar and came home all excited about how Gluten
Can cause inflammation in your body. Well I have been Gluten Free for 1 yr
Now and have not had pain since. Give it a try, no meds, just healthy food.
Good luck on this journey.
That's an amazing story, Cookie, and one which interests me immensely. Can I ask, did you have type 1 or type 2 TN?
Cookie said:
Hi all, I had sinus surgery a year ago and developed TN. The pain was so bad, I saw a neurologist and after trying the meds, ( which did nothing ) My
Husband went to a seminar and came home all excited about how Gluten
Can cause inflammation in your body. Well I have been Gluten Free for 1 yr
Now and have not had pain since. Give it a try, no meds, just healthy food.
Good luck on this journey.
I’m sorry, but I think changing my diet would be useless. I’ve been down that road and there was no change. I have both type 1 and type 2 and they are most likely caused by or exacerbated by a genetic disorder. I’m almost out of medication options as well. For me, surgery is ,y best shot at living. I’m glad going gluten free helped you, but I do know it doesn’t work for everyone.
Cookie said:
Hi all, I had sinus surgery a year ago and developed TN. The pain was so bad, I saw a neurologist and after trying the meds, ( which did nothing ) My
Husband went to a seminar and came home all excited about how Gluten
Can cause inflammation in your body. Well I have been Gluten Free for 1 yr
Now and have not had pain since. Give it a try, no meds, just healthy food.
Good luck on this journey.
Make sure when they tingle your nerve you tell the right location. I mixed up my upper tongue with my upper lip. Now I got a numb upper tonge. Then they did not find the my nerve that bothered me the most. Had to get a decompression surgery and I am ok now. TN is no fun.
Bergy
This is not the percutaneous procedure. I’ll be out the whole time. It’s done via a craniotomy.
bergy said:
Make sure when they tingle your nerve you tell the right location. I mixed up my upper tongue with my upper lip. Now I got a numb upper tonge. Then they did not find the my nerve that bothered me the most. Had to get a decompression surgery and I am ok now. TN is no fun.
Bergy
I don't know what a PSR is, or how it's done. I didn't realize until watching Youtube yesterday that one branch of the trigeninal nerve has a motor component and a sensory component. When my wife underwent MVD surgery the surgeon said that he cut the "sensory" part of the nerve in hopes that the pain would stop. It didn't. MVD is a terrible and painful surgery. I would like to know how a PSR is performed. Where on the face/head does the needle/knife enter? Thanks..
hi
i had the surgery after 7 nyrs of medication in 2012. 3 nerves were blocked. i had severe stabbing pain in right side of head and face. after surgery in India, hyderabad, I dont have any pain. but my head and right side face is always numb.
anyway its better than the pain
all the best get well all of u
srinivas
I had a MVD on 12/22/14. He also did a partial sensory Rhizotomy-if that is what it's called. Stating he did the mvd, but didn't see any obvious problems. He used the pads, and he selectively damaged/killed some nerves with heat while he was doing the MVD. I woke up pain free, and have been pain free since. There is numbness on the left side of my tongue and I get a twitching in my left lower lip sometimes. It is NOTHING compared to my pain that was getting worse and not subsiding. I've had TN for 5+ years-this was my 1st surgery. Hopefully it will stay that way, because I had such trouble with my brain function on all the meds (they helped, but didn't seem able to get the pain to bearable).
No one woke me up during surgery. I went home in 2 days.
Good luck to you
Peggy
To answer Grecio's question, in peripheral rhizotomy, the cannula (hollow needle) is inserted at the base of the cheek and threaded through natural openings in the skull bones, to reach the cavern where the trigeminal ganglion branches into the three major sections of the nerve. Threading is guided by fluoroscope. Rhizotomy can also be performed within the surgical opening through the mastoid bone, when an MVD is attempted and no compressions are found. For patients with typical TN (electric shock volleys of pain) it is unusual for compressions not to be found. Patients with atypical or neuropathic trigeminal pain (aching, burning, throbbing 24-7 pain), it is somewhat more common for compressions not to be observed during the exploratory phase of MVD.
What I understand by partial rhizoctomy is cutting one and/or two branch of the trigeminal nerve. When I underwent surgery the surgeon cut 2nd & 3rd division of the vth nerve reasoning that 1st branch rarely involved in pain on its own. By doing this he has preserved sensation in head, upper lid of my right eye & side. But lower part of my right face is permanently numb.
Yakub