Yakub, let me add (hopefully) a bit of precision, please. Rhizotomy is the creation of a lesion on a nerve, without totally severing the nerve. Total severing is called "neurectomy". Partial severing is called "partial nerve section."
There are three types of Rhizotomy, listed here in order of the precision of possible effects created: Radio Frequency (also called thermal ablation), Compression (balloon compression) and Glycerol (application of alcohol gel). Of the three, RF Rhizotomy has the far better record of results and persistence.
Some neurosurgeons will do partial nerve section during an MVD procedure if they cannot find evidence of a vascular compression which may benefit from being padded out with teflon. This is not a preferred procedure because it's difficult to create "just the right amount" of section to numb the sensations transmitted by the nerve without creating a central nervous system reaction called "deafferentiation pain", when the CNS starts wildly signalling to the peripheries of a nerve distribution which it can no longer find.
I had decompression surgery just over two years ago and I believe they " tampered " the nerve at the same time. I say tampered because I was not really given a lot of information. However I have partial numbness down the right side of my face and the right side of my head is sensitive to touch at certain points. Since the operation I have been off all medication and have been pain free for two years and three months and although having numbness poses its own problems, not severe I add I would have it all done again if it was necessary. I pray this will not happen. If you have the same outcome as me hen the operaion will have been worth it. I WISH YOU ALL THE LUCK IN THE WORLD AND LOOK FORWARD TO HEARING OF YOUR SUCCESS.
Hi, I had a partial sensory rhizotomy in 2009. The surgeon was dr peter jannetta, who invented MVD surgery. He did an MVD first, which doesn’t have a high success rate for relieving Type 2 TN, but has very little risk of side effects as other surgeries, so he wanted to do an MVD before anything else. My MVD failed, so I went back to see what else be could do. I’ve noticed that many TN patients don’t know that depending on the cause of their TN and genetic make up, they may not be a candidate for certain surgeries. I did not know that until I saw Jannetta. Unfortunately, many TN patients have surgeries that would have never helped in the first place because they werent a candidate and the surgery makes their pain worse. Cyrosurgery (now known as cryotherapy), MVD surgery and partial sensory rhizotomy were the only 3 procedures I was a candidate for. A partial sensory rhizotomy is when they cut the sensory portion of the nerve at the brain stem, leaving behind as much of the motor portion as possible.so you will still have some motor function. This procedure is NOT performed often and Dr Jannetta did not want to do it. He was afraid it would make me worse. He spoke to my family members to see what I was like at home, to see what quality of life I had. When he was convinced that I was in unbearable pain constantly and after I begged him, he went ahead with the surgery. If the surgery is successful, it will.leave the ENTIRE SIDE OF YOUR HEAD COMPLETELY NUMB. I was numb for 5 days until not only my original pain came back, but a post opeative casesevere dysesthesia as well. It can leave you with terrible side effects, like anesthesia dolorosa and tons more pain. I know many of.tbe surgeries for TN fail and make us worse, but this particular surgery is one of the riskiest. If it doesn’t make the ENTIRE SIDE OF YOUR HEAD numb, it will make that whole side hurt… not just your face. I was surprised to see an email that mentioned a partial sensory rhizotomy and I instantly jumped, because like I said… it’s not performed often. Feel free to contact me.
medphysicsRB said:
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.
Thanks all for the information and stories. This is really my last ditch effort. My surgeon is going to look at the work done during the MVD and Make sure no Teflon slipped and that there are no new compressions. If there are, they will be fixed. The rhizotomy will involve him cutting the lower 2/3 of the sensory portion of the Trigeminal nerve. I’m confident in his surgical abilities and am very hopeful that this operation will get me the relief I need!
Good Luck! I hope it solves your pain. Definately keep us updated.
I have a variant of TN, caused by sinus surgery. I'm having my sphenopalatine ganglion radio frequency ablated on Thursday, 5/21. I too am a little concerned by anathesia dolorosa, however it apparently only occurs in <5% of cases and usually resolves in a few months. From my perspective I don't feel like I have much to lose since I spend most of my days in a dark, quiet, cool room.
Hi Red. When you say "For patients with typical TN (electric shock volleys of pain) it is unusual for compressions not to be found." Do you mean during an MVD operation or just in investigations in general? I was under the impression that it was quite common for them not to show on MRIs, for example. Also, is this Rhizotomy procedure something that is more commonly done on atypical sufferers?
Richard A. "Red" Lawhern said:
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.
Hello
I have had two mvds came out of remission within 2 years. Then 3 more rhizolosis…threw the ear and trying to basically burn the trigeminal nerve. This was not effective. I have TN type 2B…which would be atypical…so basically all 3 branches. Constant. So initally during the first MVD he found a huge vessell that was elongated and actually embedded in 3 places in my trigeminal nerve. 2 weeks later I had another MVD because of leaking csf. Almost total remission for a yr and a half. Then slowly but surely it was there again. So I KNEW what it was. Surgeon said lets do rhizolosis. …then 3 more…then i basically screamed…IT IS SCAR TISSUE…OK MY VESSEL WAS EMBEDDED…WHICH IS AN OPEN WOUND THEN MY ENTIRE NERVE WAS WRAPPED IN THE PATCH. SCAR TISSUE HAS ATTACHED THE PATCH TO MY TRIGEMINAL NERVE. I just knew it. So exploritory MVD. And my trigeminal nerve had scarred over with tissue and we all know the rest. I have never heard many drs especially surgeons apologize. However I recieved a huge apology and an actual you knew the whole time and I didnt listen and Im sorry!. He cut my nerve as far back as he could so I have mostly no feeling at all…which is so nice…except for a strip that starts at my temple all the way to my jaw. I will have TN for the rest of my life…hopefully we have some type of advance. I am only 38 and have 3 small childrrn. The reason I am writing this is bcuz Iam suprised that I never see anyone talk about scar tissue. I would hope this at least would help one person on this site.
I had (yes HAD) ATN.
My longest and hardest seizure was on February 8, 2009 and it lasted almost 6 hours. When it finally subsided, I collapsed from exhaustion and the headaches persisted for almost a week after.
On March 17, 2009 I underwent CyberKnife treatment at St Josephs Hospital in St. Paul MN.
Over the period of a week after the treatment, I got really sick - but after the peak of being sick, I got better just as quickly.
I am 90% clear of the pain seizures and those that I do get periodically are relatively mild and go away within minutes.
Like many, I had a number of teeth pulled before it was properly diagnosed.
Unfortunately I also neglected my teeth over a period of time because I could easily trigger the seizures by temperature and touch… Suffice to say, rinsing alone with body temperature mouthwash is not a replacement for good oral hygene.
How am I today?
Like I said earlier - in am 90% clear now. Oddly, when I touch the left side of my face, it all goes numb for anywhere from a few minutes to as long as thirty mins.
I have some phantom pain periodically which oddly enough comes from a tooth that is missing!
All in all, I will tell you that the CyberKnife treatment saved my life and restored normalcy…
I urge any of you to speak with your Neurologist about this treatment and I pray that your results have been as good as mine. I also pray that it does not ever return although I was warned that it could…
With the utmost respect for those fellow sufferers…
Randy
I meant during the exploratory phase of MVD. As you note, it is quite common for compressions not to be confirmed by even the best resolution MRI.
Woman with the electric teeth said:
Hi Red. When you say "For patients with typical TN (electric shock volleys of pain) it is unusual for compressions not to be found." Do you mean during an MVD operation or just in investigations in general? I was under the impression that it was quite common for them not to show on MRIs, for example. Also, is this Rhizotomy procedure something that is more commonly done on atypical sufferers?
Richard A. "Red" Lawhern said:
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.
And as you surmise, Rhizotomy does seem to be used more often with Atypical TN patients, as a sort of "hail mary pass" procedure. The trend seems to be toward greater caution in using RF Rhizotomy under any conditions, because it does add a form of controlled damage to the nerve, and it's nearly impossible to predict with any confidence exactly how the healing of that damage may affect the patient in the long term.
Richard A. "Red" Lawhern said:
I meant during the exploratory phase of MVD. As you note, it is quite common for compressions not to be confirmed by even the best resolution MRI.
Woman with the electric teeth said:
Hi Red. When you say "For patients with typical TN (electric shock volleys of pain) it is unusual for compressions not to be found." Do you mean during an MVD operation or just in investigations in general? I was under the impression that it was quite common for them not to show on MRIs, for example. Also, is this Rhizotomy procedure something that is more commonly done on atypical sufferers?
Richard A. "Red" Lawhern said:
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.
Thanks for that. I have to say, reading this thread, that the procedure does seem to do extensive and rather unpredictable damage. I can only assume it's because so many atypical sufferers have no joy with medications that they are reduced to this kind of shotgun approach in desperation.
Richard A. "Red" Lawhern said:
And as you surmise, Rhizotomy does seem to be used more often with Atypical TN patients, as a sort of "hail mary pass" procedure. The trend seems to be toward greater caution in using RF Rhizotomy under any conditions, because it does add a form of controlled damage to the nerve, and it's nearly impossible to predict with any confidence exactly how the healing of that damage may affect the patient in the long term.
Richard A. "Red" Lawhern said:
I meant during the exploratory phase of MVD. As you note, it is quite common for compressions not to be confirmed by even the best resolution MRI.
Woman with the electric teeth said:
Hi Red. When you say "For patients with typical TN (electric shock volleys of pain) it is unusual for compressions not to be found." Do you mean during an MVD operation or just in investigations in general? I was under the impression that it was quite common for them not to show on MRIs, for example. Also, is this Rhizotomy procedure something that is more commonly done on atypical sufferers?
Richard A. "Red" Lawhern said:
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.
That’s exactly what Dr Jannetta did with me after the MVD. He looked to make sure all the sponges were in place and made sure there weren’t anymore compression. Then he scooped out 2/3 of the nerve leaving me with some motor function. If your TN is not well controlled with meds and this is the last resort, then make sure you have an excellent neurosurgeon and I hope it takes all that horrible TN pain away. It’s interesting when your head goes numb, it’s not as disoriating as you may think. I loved those 5 days I had being numb!
medphysicsRB said:
Thanks all for the information and stories. This is really my last ditch effort. My surgeon is going to look at the work done during the MVD and Make sure no Teflon slipped and that there are no new compressions. If there are, they will be fixed. The rhizotomy will involve him cutting the lower 2/3 of the sensory portion of the Trigeminal nerve. I’m confident in his surgical abilities and am very hopeful that this operation will get me the relief I need!
I’m out of med options due to allergies and a genetic disorder that limits my ability to take most meds . The doc I have is experienced in this procedure. I’m very hopeful that the pain goes away.
Sheri, what does it feel like when you wake up? Just out of curiosity…
Sheri Lyn Neumoyer said:
That’s exactly what Dr Jannetta did with me after the MVD. He looked to make sure all the sponges were in place and made sure there weren’t anymore compression. Then he scooped out 2/3 of the nerve leaving me with some motor function. If your TN is not well controlled with meds and this is the last resort, then make sure you have an excellent neurosurgeon and I hope it takes all that horrible TN pain away. It’s interesting when your head goes numb, it’s not as disoriating as you may think. I loved those 5 days I had being numb!
medphysicsRB said:
Thanks all for the information and stories. This is really my last ditch effort. My surgeon is going to look at the work done during the MVD and Make sure no Teflon slipped and that there are no new compressions. If there are, they will be fixed. The rhizotomy will involve him cutting the lower 2/3 of the sensory portion of the Trigeminal nerve. I’m confident in his surgical abilities and am very hopeful that this operation will get me the relief I need!
When you wake up you should have nothing but numbness on the whole side of your head. I didn’t have nearly as much surgery pain as I did with the MVD, because the incision was numb. Also, since they go in through the opening in the skull where you had the mvd, they don’t have to drill into your skull again. I tell everyone this… drink as much apple juice as you can after the surgery. It helps regenerate the cerebrospinal you lose during surgery…
medphysicsRB said:
I’m out of med options due to allergies and a genetic disorder that limits my ability to take most meds . The doc I have is experienced in this procedure. I’m very hopeful that the pain goes away.
Sheri, what does it feel like when you wake up? Just out of curiosity…
Sheri Lyn Neumoyer said:
That’s exactly what Dr Jannetta did with me after the MVD. He looked to make sure all the sponges were in place and made sure there weren’t anymore compression. Then he scooped out 2/3 of the nerve leaving me with some motor function. If your TN is not well controlled with meds and this is the last resort, then make sure you have an excellent neurosurgeon and I hope it takes all that horrible TN pain away. It’s interesting when your head goes numb, it’s not as disoriating as you may think. I loved those 5 days I had being numb!
medphysicsRB said:
Thanks all for the information and stories. This is really my last ditch effort. My surgeon is going to look at the work done during the MVD and Make sure no Teflon slipped and that there are no new compressions. If there are, they will be fixed. The rhizotomy will involve him cutting the lower 2/3 of the sensory portion of the Trigeminal nerve. I’m confident in his surgical abilities and am very hopeful that this operation will get me the relief I need!
Sounds like it’d be bliss compared to the tn! And I already drink that a lot to counteract the effects of the pain meds!
Sheri Lyn Neumoyer said:
When you wake up you should have nothing but numbness on the whole side of your head. I didn’t have nearly as much surgery pain as I did with the MVD, because the incision was numb. Also, since they go in through the opening in the skull where you had the mvd, they don’t have to drill into your skull again. I tell everyone this… drink as much apple juice as you can after the surgery. It helps regenerate the cerebrospinal you lose during surgery…
medphysicsRB said:
I’m out of med options due to allergies and a genetic disorder that limits my ability to take most meds . The doc I have is experienced in this procedure. I’m very hopeful that the pain goes away.
Sheri, what does it feel like when you wake up? Just out of curiosity…
Sheri Lyn Neumoyer said:
That’s exactly what Dr Jannetta did with me after the MVD. He looked to make sure all the sponges were in place and made sure there weren’t anymore compression. Then he scooped out 2/3 of the nerve leaving me with some motor function. If your TN is not well controlled with meds and this is the last resort, then make sure you have an excellent neurosurgeon and I hope it takes all that horrible TN pain away. It’s interesting when your head goes numb, it’s not as disoriating as you may think. I loved those 5 days I had being numb!
medphysicsRB said:
Thanks all for the information and stories. This is really my last ditch effort. My surgeon is going to look at the work done during the MVD and Make sure no Teflon slipped and that there are no new compressions. If there are, they will be fixed. The rhizotomy will involve him cutting the lower 2/3 of the sensory portion of the Trigeminal nerve. I’m confident in his surgical abilities and am very hopeful that this operation will get me the relief I need!
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.
As far as ANY invasive procedures go, I will keep all in my prayers. I have been a nurse for 20+ years and my conviction is that it only adds insult to injury. If it is a measure to save a life, then that is different. Again, I will keep all in my prayers. Diet, exercise (6 times per week) and changing the texture of foods that I eat have helped tremendously along with neurontin which I only take now if I feel a numbness or trigger coming on.
. The doc I have is experienced in this procedure. I’m very hopeful that the pain goes away.