I posted recently looking for info on this procedure. Well, I had it done. Here’s my take:
So I just thought I’d share, the latest procedure I underwent, the partial sensory rhizotomy, was life changing! I no longer have pain on the left side of my face! And minimal numbness due to a new technique used to monitor and cut only the nerve roots that transmit pain to the face. I did have a complication, the plate got infected, but that was treated quickly and I’m fine now. I’d do it again in a heartbeat! Next summer the right side will be done. Then bye bye TN (at least for a while).
I know there are a lot of bad stories on this procedure, so I wanted to out my good experience.
Hi Medphysics thank you for sharing. Its always really good to hear when there is a positive outcome.
All the best :)
That is terrific. I am so glad. :)
I am a little over three months out and, while there have been some bumps in the road, so far so good! I am actually scheduled to have an MVD and/or possible Partial Sensory Rhizotomy on the right side on 10/6. I'm hoping this will be the last needed operation to get me to a point of comfort for a while. Will update after that operation to let everyone know how it is having it done bilaterally.
I'm so happy for you! I don't come on here as often as I should and just saw your post. I've been wanting to persue this for myself. Did you have TN with ATN pain as well? I am 95% ATN and maybe 5% TN (just stabs, no lightening bolts, thank goodness!) Do you know if the plate is titanium? I actually made an appointment with a neurosurgeon a couple of months ago but cancelled because I wanted to wait until my pain was in the 'full force winter mode" so I would be more desparate, LOL. I'd love to know how you're doing.
My left side started out as tn1 but by the time I had surgery was both types. It’s about even between shocks and constant pain. My right side (side being fixed next month) is just tn1 pain. The plates he uses are titanium. My left side doesn’t have a plate right now, as it was removed during a wash out surgery for a staph infection of the skull and dura. It was not replaced and now the muscle and tissue is all that covers the small hole. My right side will have a plate. Depending, later on, the left side may be reconstructed if I continue to get superficial infections, but we think we solved that problem recently. Good luck!!!
Awesome! Thanks for sharing the good news. Best of luck.
I just posted another thread with an update on how I am doing after undergoing this procedure bilaterally!!!!
Was the procedure an RF (Radio Frequency) needle rhizotomy? Of one, two, or three branches of the TN? Also, what do you mean by 'the plate'? (Edit: I understand now. A small hole was drilled through your skull, then covered with a titanium plate.)
My wife has a skull plate because she had a Vascular Decompression. But in the case of an RF rhizotomy, only a needle-like instrument is used, with no need to drill any new skull holes. She is contemplating this procedure after the VD failed to give relief.
Thanks for any info.
This was done in the same fashion as an MVD. It’s performed via a craniotomy and the nerve is cut as it comes off of the brain stem. Not many surgeons perform this operation and it’s one of last resort. The plate is what closed up the skull hole.
I had the misunderstanding that 'rhizotomy' referred solely to burning a nerve with the tip of a needle probe, using radio frequency heating. I understand now that it refers to the severing, or partial severing, of a nerve by any means.
Also, do I understand correctly that intra-cranial partial severing can be done with such astounding precision that pain is blocked, but normal 'feeling' (say, of inner and outer cheek, lip, and tongue) remains? Are not these nerve fibers interwoven?
My wife is apprehensive of total cheek/tongue numbness if her T2 is severed (or destroyed), because it might lead to the biting of inner cheek & tongue. (And, of course, she might be unaware of the start of dental problems if the roots are numbed.)
It can be done very precisely. Unfortunately my left side didn’t respond as well as my right side. I’m looking at other options for the left. I also have the burning tongue. All in all it’s worth it, especially if it works (as it does in most patients per my neurosurgeon). I’m a complex case. Definitely worth a consult and ask about the dental part. My neurosurgeon said that’s not an issue, but I know there are several different techniques.
Art, where did you have the procedure and what is the name of your doctor?
Ron, that question was meant for you.
Art, it sounds as if your wife and I have the same pain and concerns regarding compounding the situation. That actually happened when I had vascular decompression surgery. I really didn’t believe it could be worse but it is. I am very wary of procedures but the pain is getting worse. I’m looking for options and a specialist. Any information would be appreciated.
My operation was done at Mercy Hospital- St. Louis by Dr. Justin Sweeny. Would highly recommend him! Excellent surgeon and has amazing bedside manner to go along with his top notch surgery skills.
Ron, were you evaluated at Mercy to determine what the problem was…in other words could they see the compression on an MRI? Have you had vascular decompression as well? Did you vet this dr prior to going to him?
Yes, there were compressions visible on MRI, and an MVD was Attempted on both sides. Due to an underlying condition, when the left side MVD failed, the Partial Sensory Rhizotomy was done several months later. When the right was done, the MVD and Partial Sensory Rhizotomy were done in one operation. All of my medical care is at mercy and I was diagnosed by my PCP and a neurologist there. Then sent to him. I did my research on him beforehand.
Ron, when did your pain begin? Thank you for answering my questions. I’m new to this site. If I want to contact you again how might I do that. I was just lucky seeing your post tonight. I pray that you will remain stable and as pain free as possible.
After your Rhyzotomy were you able to feel food inside your cheek. Mine was so numb I had to be careful not to choke sense I couldn’t sense if there was food left. I’ve been afraid to get my other side done. I had a radio frequency glycerine Rhyzotomy. How is that different from a partial sensory Rhyzotomy?
Anna, are you still numb? Would you have the procedure done again?