Coping with numbness after radio-frequency rhizotomy

Symptoms & Treatments Surgery
21

Good point, Red. I thought it was closer to 5 yrs, but you would be more up on this than I. If a facility was at hand, and the Gamma Knife treatment caused only partial numbness, we might still opt for it. But at this time it's not really an option for Alice. (But I do like the super-high-tech aspects of it!)

Art


Richard A. "Red" Lawhern said:

Be aware that according to the practice standards of the International Radio Surgery Association, pain recurs within three years for about half of all initially successful Gamma Knife procedures in typical TN. Stats weren't quoted for atypical TN.

Regards, Red

22

Barbara,

You nailed me but good! We live in Nanaimo, on Vancouver Island. We are fortunate that there are some excellent neurosurgeons in Victoria... but no Gamma Knife facility. I've heard there might be one at UBC in Vancouver, but it's not used for TN treatment.

I would check with another neurosurgeon as to the possible benefits of an RF rhizotomy. As they say, "It doesn't hurt to ask!"

Good luck in trying to find relief. We will certainly update you should Alice have her RF rhizotomy. She is still mulling it over, working out the balance between known-pain acceptance and the inherent risks of any procedure.

Art (& Alice)

Barbara said:

Art,

I had you pegged as not only Canadian, but as an engineer! Although I live in the States now, I'm originally from Toronto and lived in Vancouver in the early 90s. It was the "dental freezing" comment - Americans call it "numbing". People look at me very strangely when I talk about being frozen after a dental visit (but luckily my dentist, who diagnosed my TN, is also Canadian.) I also have 3 engineer brothers so....

My surgeon does not think the rhizotomy procedures will do much for me, since he's already injured the nerve, I have numbness, and I still have pain. I believe that I may seek out another opinion at some point, but it's only been 2 months since my surgery and I'm really still recovering (I had a very bad first month - still not up to speed).

My surgeon told me what Red reported above: that pain will most likely reoccur for rhizotomy procedures within a few years and the procedure would have to be repeated.

Do they know why your wife's MVD didn't work? I feel so very badly for her. And I don't blame her for not wanting to fly. My neurologist specifically told me NOT to fly because the changes in air pressure could affect the pain. I can't believe that there isn't a facility in Vancouver that does Gamma knife!

Please make sure to update me after she has her procedure.

Best,

Barbara


fastartcee said:

Barbara,

Thanks for your reply and your kind words.

I'm a civil engineer, not a doctor, but I think it's possible that a rhizotomy might put an end to your TN pain. The best site I have found for information on TN is this University of Manitoba (Canada) site:

I have read everything in this Guide; it has, I believe, given me a good grasp of the whole issue, including various possible treatments. (Being a techie, I like to understand the details!) The three treatments that I would consider are:

  • MVD -- but, like you, it didn't help Alice;
  • Radio Frequency rhizotomy: the most carefully controlled, accurate procedure; causes numbness (but you already suffer this).
  • Stereotactic Radiography -- the so-called Gamma Knife: limited damage to the TN ganglion that gives pain relief to many within a few weeks.

We would try the Gamma Knife, but the closest facility is at the U of Manitoba, in Winnipeg, and Alice isn't fond of flying. If there was a facility in Vancouver, that would only be a ferry ride away.

I suggest you read up on the treatments as outlined in the above Guide.

Art (& Alice)


Barbara said:

Art,

Thank you for your reply. I apologize if I wasn't clear: I have not had a rhizotomy - at least not in the typical sense. During my MVD surgery the surgeon also performed a different procedure, "nerve combing", which also damages the nerve and causes numbness. There is a similar procedure called "partial sensory rhizotomy" where they actually cut through the nerve fibers. In any case, the outcome is the same: permanent numbness.

I take pretty low doses of the meds because I have extreme sensitivity to them (Trileptal 600-900 mg daily, Gabapentin 900 mg daily.) I have also only had TN symptoms since last June and was diagnosed at the beginning of August. I was quick to do the surgery because of my medication sensitivity and the fact that the surgery is supposed to be more effective closer to onset of symptoms.

While the medication does control the pain for the most part, I do get breakthrough pain, and from what I read and have been told, the medication loses its efficacy over time and you have to increase the amount you take. Since I've only really had symptoms for 7 months, I am not looking forward to a lifetime of this.

Although the numbness is extremely annoying, if a procedure can take away the pain, I believe that the tradeoff would be worth it.

I am so very sorry about your wife's ordeal, and I hope that the rhizotomy helps. You sound like a wonderful, caring husband!

Barbara

23

I am almost 12 weeks post glycerol-rhizotomy and I have a great degree of numbness. Honestly, numb on the face is not nearly as bothersome as the pins and needles that accompany it. That has been very challenging. I also have constant electrical shocking. Yes, I am an extreme case, the doc says. Also note with the numb cheek you will bite the side of your mouth raw. I rinsed with Orajel and that helped but it does get chewed up. Have liquid Orajel bottle on hand along with straws and plan on soft foods and soups for a time. No dental concerns except it is tougher to brush so have your dentist give you a prescription gum rinse. Good luck!

24

A couple of thoughts,please: there are three different Rhizotomy procedures: RF, Balloon, and Glycerol. Of the three, RF Rhizotomy has the best record of outcomes when used with typical TN as a first procedure: about 70-% of patients are still pain free after seven years (reported by Dr.s Tew and Taha in a paper from 1998). Glycerol generally wears off in a year to two years, but can be repeated with good results in many patients. As second or subsequent procedures after an MVD, none of the Rhizotomies does as well as when used first. And ATN results are generally less successful than typical TN results.

Gamma Knife is a wholly different procedure from Rhizotomy. GK is generally being used less often for TN than when it was new and long term results were less clear. Neurosurgeons also have increasing reservations about using any of the Rhizotomies repeatedly or after an MVD or GK fails. I think the US authority on this is probably Dr. Ken Casey who co-wrote Striking Back. There is an excellent 2-hour support group lecture and q&a session video that he led with a particular focus on ATN patients. I'm not sure if site management has withdrawn the video, but it was once linked from the main page here.

Go in Peace and Power

Red

25

Very wise words, Red! Anyone who stumbles upon this while searching for help with their TN will benefit from your vast knowledge and wise counsel. I'm going to check out Dr Casey's work and the lecture video. I hope it's still available.

Richard A. "Red" Lawhern said:

A couple of thoughts,please: there are three different Rhizotomy procedures: RF, Balloon, and Glycerol. Of the three, RF Rhizotomy has the best record of outcomes when used with typical TN as a first procedure: about 70-% of patients are still pain free after seven years (reported by Dr.s Tew and Taha in a paper from 1998). Glycerol generally wears off in a year to two years, but can be repeated with good results in many patients. As second or subsequent procedures after an MVD, none of the Rhizotomies does as well as when used first. And ATN results are generally less successful than typical TN results.

Gamma Knife is a wholly different procedure from Rhizotomy. GK is generally being used less often for TN than when it was new and long term results were less clear. Neurosurgeons also have increasing reservations about using any of the Rhizotomies repeatedly or after an MVD or GK fails. I think the US authority on this is probably Dr. Ken Casey who co-wrote Striking Back. There is an excellent 2-hour support group lecture and q&a session video that he led with a particular focus on ATN patients. I'm not sure if site management has withdrawn the video, but it was once linked from the main page here.

Go in Peace and Power

Red

26

Diane,

You are, indeed, walking a very rough road. I can only imagine your pain and discomfort. Perhaps you can take some comfort in Red's worls: the effect of the glycerol rhizotomy might fade over the next few years, giving you some relief even if your TN continues. And there is always some hope that researchers might find an effective treatment to alleviate your pain. We wish you the best.

Art (& Alice)

Diane said:

I am almost 12 weeks post glycerol-rhizotomy and I have a great degree of numbness. Honestly, numb on the face is not nearly as bothersome as the pins and needles that accompany it. That has been very challenging. I also have constant electrical shocking. Yes, I am an extreme case, the doc says. Also note with the numb cheek you will bite the side of your mouth raw. I rinsed with Orajel and that helped but it does get chewed up. Have liquid Orajel bottle on hand along with straws and plan on soft foods and soups for a time. No dental concerns except it is tougher to brush so have your dentist give you a prescription gum rinse. Good luck!

27

I had this surgery in 2003. Biting my tongue was tough to stop. Just "hearing" it made me crindge, since it didn't hurt. I seldomly bit my inner cheek. Drooling is problematic, so is being messy while eating, losing food out the numb side. My dr had me chat with others to get an idea what I was in for, and it helped. For starters, I bought a compac mirrior to carry with me, to check my face after eating, some of the public will stare and not tell you when you dribble. And since my eye is numb too, it got sick and I had a cornea transplant and cataract surgery to help my vision. I talked with a lisp, had to practice talking in the mirror, singing helped, a sense of humor helps too. Was it worth it, heck yes, would do it again if need be. Is it complicating to being numb, yes. But so is the pain. Eventually your body copes with being numb, you will learn to eat without biting. Let me know if you have any more concerns, I'll be as honest as possible.

28



kevin p said:

I had this surgery in 2003. Biting my tongue was tough to stop. Just "hearing" it made me crindge, since it didn't hurt. I seldomly bit my inner cheek. Drooling is problematic, so is being messy while eating, losing food out the numb side. My dr had me chat with others to get an idea what I was in for, and it helped. For starters, I bought a compac mirrior to carry with me, to check my face after eating, some of the public will stare and not tell you when you dribble. And since my eye is numb too, it got sick and I had a cornea transplant and cataract surgery to help my vision. I talked with a lisp, had to practice talking in the mirror, singing helped, a sense of humor helps too. Was it worth it, heck yes, would do it again if need be. Is it complicating to being numb, yes. But so is the pain. Eventually your body copes with being numb, you will learn to eat without biting. Let me know if you have any more concerns, I'll be as honest as possible.

29

As I am home on my 13th week of disability, no longer able to tolerate the teaching career (speaking!) I love, I've had a few moments to consider this thread and all of the helpful advice. First, Red, thank you for addressing anyone belittling another's pain. TN, ATN, Anesthesia Dolorosa are each their own special kind of hell and not one of us would choose one or worse, all. For reasons unknown, my glycerol rhizotomy quadrupled my TN1 while ending the burn of TN2--(yes, I know that is impossible. Meet Ms Impossible!) It is now what it is. It is a chore to keep my eye open with the weight of the numbing, the AD feels like 10 rounds a day with Rocky Balboa, but I have a supportive husband and I am working to figure out how to help myself and transition into new modes of productivity and a satisfying life at only 57. I didn't see this coming, none of us do. I made the best decision I could with the GR. Who knew I'd be the 1-2% with the extreme reaction? No one. And no one is to blame. Great doctor, great medical center. I'll let you know if I improve although I am a tad disheartened Kevin that you have had it since 2003. Doc tried a steroid to reduce inflammation but it didn't work. I am grateful he is trying to help. Here is to delicious, nourishing soups and the occasional martini when it is all too much to bear.

fastartcee said:



kevin p said:

I had this surgery in 2003. Biting my tongue was tough to stop. Just "hearing" it made me crindge, since it didn't hurt. I seldomly bit my inner cheek. Drooling is problematic, so is being messy while eating, losing food out the numb side. My dr had me chat with others to get an idea what I was in for, and it helped. For starters, I bought a compac mirrior to carry with me, to check my face after eating, some of the public will stare and not tell you when you dribble. And since my eye is numb too, it got sick and I had a cornea transplant and cataract surgery to help my vision. I talked with a lisp, had to practice talking in the mirror, singing helped, a sense of humor helps too. Was it worth it, heck yes, would do it again if need be. Is it complicating to being numb, yes. But so is the pain. Eventually your body copes with being numb, you will learn to eat without biting. Let me know if you have any more concerns, I'll be as honest as possible.

30

Diane, thanks for your reply. I think of the pain you are suffering, and admire you for still reaching out share your knowledge and experiences with others.

I only fill a support role for my wife Alice; I get away without suffering the seemingly endless pain and suffering that plagues you, Kevin, and others who have posted gut-wrenching honest and open accounts of their history with this debilitating condition. It is so awful to have to accept the side effects in order to escape the pain, and even worse when those side effects are ADDED to the pain.

We are moving closer to the RF rhizotomy operation that Alice has opted for; we have a pre-op appointment arranged for in a couple weeks, but don't know right now when the surgery will occur. In the meantime we are constantly considering alternatives. We have concluded that the RF rhizotomy is the most accurate procedure to limit the numbing effect to only the lower branch of the TN. We are also hoping that the numbing might not be total.

Again, thanks,

Art (& Alice)

Diane said:

As I am home on my 13th week of disability, no longer able to tolerate the teaching career (speaking!) I love, I've had a few moments to consider this thread and all of the helpful advice. First, Red, thank you for addressing anyone belittling another's pain. TN, ATN, Anesthesia Dolorosa are each their own special kind of hell and not one of us would choose one or worse, all. For reasons unknown, my glycerol rhizotomy quadrupled my TN1 while ending the burn of TN2--(yes, I know that is impossible. Meet Ms Impossible!) It is now what it is. It is a chore to keep my eye open with the weight of the numbing, the AD feels like 10 rounds a day with Rocky Balboa, but I have a supportive husband and I am working to figure out how to help myself and transition into new modes of productivity and a satisfying life at only 57. I didn't see this coming, none of us do. I made the best decision I could with the GR. Who knew I'd be the 1-2% with the extreme reaction? No one. And no one is to blame. Great doctor, great medical center. I'll let you know if I improve although I am a tad disheartened Kevin that you have had it since 2003. Doc tried a steroid to reduce inflammation but it didn't work. I am grateful he is trying to help. Here is to delicious, nourishing soups and the occasional martini when it is all too much to bear.

fastartcee said:



kevin p said:

I had this surgery in 2003. Biting my tongue was tough to stop. Just "hearing" it made me crindge, since it didn't hurt. I seldomly bit my inner cheek. Drooling is problematic, so is being messy while eating, losing food out the numb side. My dr had me chat with others to get an idea what I was in for, and it helped. For starters, I bought a compac mirrior to carry with me, to check my face after eating, some of the public will stare and not tell you when you dribble. And since my eye is numb too, it got sick and I had a cornea transplant and cataract surgery to help my vision. I talked with a lisp, had to practice talking in the mirror, singing helped, a sense of humor helps too. Was it worth it, heck yes, would do it again if need be. Is it complicating to being numb, yes. But so is the pain. Eventually your body copes with being numb, you will learn to eat without biting. Let me know if you have any more concerns, I'll be as honest as possible.

31

I have had 3 radiofrequency rhizotomies done after having a gamma knife procedure and an MVD done also. The RF procedures have lasted the longest for me although not as long as the neurosurgeon had hoped. The first one I had done produced the greatest degree of numbness although it was still very tolerable. I've had no problems at all with biting my tongue or the inside of my cheek. Overall I am very happy I have made the choice to have the RF procedures and when this one wears off I will have another one done. I have had TN for about 8 years and currently take 1200mg of tegretol I was doing very well on 600mg after my procedure but then the cold, windy weather started affecting me along with the stress of christmas. My TN is in the third branch on my left side and is type I. I hope this helps you somewhat with your decision to have the RF procedure.

32

I’m 4 weeks post-op. The surgeon performed an MVD but found that the nerve was worse off than expected. He didn’t think the MVD would be sufficient to stop the pain so he did a glycerin rhizotomy before stitching me back up. I wasn’t expecting to wake up with half of my face numb and it certainly has its challenges. However, I’ve adapted quickly and would do it again in a heartbeat. The worst things - I bite my cheek sometimes when I’m eating, my right eye doesn’t water if something (like an eyelash) gets in it so eye drops are always in my purse and the side of my nose feels like it’s being permanently tickled by a feather. It was almost comical the first week or two - I kept scrunching up my nose trying to get rid of the ‘feather’. As annoying as these things are, they are nothing compared to the pain I was in. I firmly believe this was the best thing for me and my situation. Give your wife my best wishes. It’s certainly not an easy decision.

33

hav2hope, thanks for the reply.

It is good to hear that you've had little problem with biting your tongue or your cheek, and that the RF rhizotomies have ended your pain, even if the procedure did have to be repeated.

We had a pre-op appointment with Alice's neurosurgeon Tuesday, and we will soon be informed of a date for the surgery. The replies by kind people such as yourself helped us with our decision.

We'll keep this thread updated on Alice's progress, and her experiences.

Again, thanks!

Art (& Alice)


hav2hope said:

I have had 3 radiofrequency rhizotomies done after having a gamma knife procedure and an MVD done also. The RF procedures have lasted the longest for me although not as long as the neurosurgeon had hoped. The first one I had done produced the greatest degree of numbness although it was still very tolerable. I've had no problems at all with biting my tongue or the inside of my cheek. Overall I am very happy I have made the choice to have the RF procedures and when this one wears off I will have another one done. I have had TN for about 8 years and currently take 1200mg of tegretol I was doing very well on 600mg after my procedure but then the cold, windy weather started affecting me along with the stress of christmas. My TN is in the third branch on my left side and is type I. I hope this helps you somewhat with your decision to have the RF procedure.

34

Emma... what a wonderful reply! To hear that your pain is gone, and, despite problems, your sense of humor is intact, is heartening.

We met with Alice's neurosurgeon Tuesday, and informed him that we have opted for an RF (Radio Frequency) rhizotomy; we will be given a date shortly.

It is our understanding that the RF rhizotomy is more precise than other methods, so we are hoping that there will be no effects on the upper cheek, the nose, or the eye.

We will keep this thread updated as to Alice's progress and experiences.

Thanks for your reply,

Art (& Alice)

Emma said:

I'm 4 weeks post-op. The surgeon performed an MVD but found that the nerve was worse off than expected. He didn't think the MVD would be sufficient to stop the pain so he did a glycerin rhizotomy before stitching me back up. I wasn't expecting to wake up with half of my face numb and it certainly has its challenges. However, I've adapted quickly and would do it again in a heartbeat. The worst things - I bite my cheek sometimes when I'm eating, my right eye doesn't water if something (like an eyelash) gets in it so eye drops are always in my purse and the side of my nose feels like it's being permanently tickled by a feather. It was almost comical the first week or two - I kept scrunching up my nose trying to get rid of the 'feather'. As annoying as these things are, they are nothing compared to the pain I was in. I firmly believe this was the best thing for me and my situation. Give your wife my best wishes. It's certainly not an easy decision.
35

Alice had her radiofrequency rhizotomy on March 17, at Victoria (BC) General Hospital; Dr Sun was her neurosurgeon.

The procedure went with textbook precision, numbing only a portion of the face/mouth served by the V3 branch of the trigeminal nerve, centered on the area where she had experienced the TGN stabbing pains. The numb region is below a line extending from the left corner of her mouth towards a point about two inches short of her ear, then extending down past her jawline to a point about 2 inches onto her underjaw, then parallel to her jawline to a point below the centre of her chin, and thence up to the middle of her lower lip. I delineated this area using a feather-like touch. It is apparent that Dr Sun was utterly precise in positioning the tip of the RF needle. He is a superb neurosurgeon.

Although this is usually an outpatient procedure, because her OR time was late afternoon, she was admitted to hospital overnight, and seen by Dr Sun Friday before we returned home to Nanaimo (about 100 km north of Victoria).

Since the rhizotomy, she has experienced only twinges (numerous), which Dr Sun says is a normal post-op experience, and that these twinges should ease off in frequency over the next week or so. Alice has not had a pain strike post-op.

Although, of course, her inside cheek and half her tongue are numb, she has not had particular problems eating; but she has 'nipped' her lip a couple times, but nothing serious. Obviously, she must take great care for a while in chewing her food. She is preferring the right side, and will not eat anything that requires a lot of chewing (eg, steak) for the time being. If she wants anything that normally requires a lot of chewing, she'll cut it into small pieces.

She had been concerned that her head would be tightly clamped (which caused her some post-op pain when she had her unsuccessful microvascular decompression two years ago), but, in fact, the head constraint was quite gentle, causing no post-op discomfort whatsoever. Also, the needle puncture points through her cheek and her palate have not caused her any noticeable discomfort, post-op.

She will be maintaining her full pre-op daily dosages of Tegretol for the next three weeks, then she'll start the weaning-off process under the care of her GP.

Overall, Alice says, "It feels weird", as any of us who have had freezing in a dentist's chair could attest. But there is not even a trace of facial sagging, or speech impairment. If this RF rhizotomy puts an end to three years of near-unbearable pain strikes that have occurred almost at random, sometimes pulsing, and sometimes lasting an hour or more, then I'm sure she'll agree that a little "weird" will be a very small price to pay.

I will post weekly updates on Alice's post-RF-rhizotomy experience.

I would like to thank everyone who has contributed to this thread for their comments, advice, and support.

Art (and Alice)

1 Like
36

I had RF done Dec 13-It also left me with AD. I am now scheduled for the implant of a motor cortex stimulator at Mayo in May. The RF worked well to stop the terrible TN symptoms I was having so it was a god send and I would take the AD over where I was before it but if you are not in constant, acute pain-considering the Gamma or Cyber knife is an option you should consider. They have made great strides in being able to pinpoint the exact strand in the nerve and with a good radiation surgeon you can get good results but results from the procedures take 2 weeks-2 months so it is not an option when you are in an acute situation. Best of luck

37

Hi Kevin, if you’re still out there, I just had radiofrequency rhizotomy 2 days ago and my left eye is completely numb. I didn’t expect this at all, since my neurosurgeon was going after the second branch only, but seems to have gotten both the first and second branches (almost my entire left face is numb). My vision has changed since the procedure. May I ask: what were the signs that your eye was getting sick? Thank you and I hope you remain pain free.

38

I can’t offer a first-person experience with rhizotomy. What I’d like to offer is my daughter’s take on radio ablation. When Emily was 25, her neurologist recommended severing her trigeminal nerve to eradicate an intractable case of TN. Because Emily was only 25, and because she had seen her grandfather experience post-stroke numbness that resulted in an unsightly drool, Emily did not want to pursue this surgical option. It bears noting that Emily’s TN was about as atypical as a case could be. Hers was bilateral and involved both the first and third branches of the nerve. The involvement of both those branches is so unusual that it does not appear on the pie chart of nerve branch involvement shown in Striking Back. During a flare-up, the corner of Emily’s mouth would turn down, so she suspected that she would be left with the same kind of difficulties that beset my father following his stroke. As a young woman, this outcome was undesirable. You may wish to consider what pattern of nerve branch involvement you have and what your age is. It is my fervent hope that you receive the best possible outcome.

39

Fastartcee: (Art & Alice)

I had Radio Frequency Rhizotomy for my right side TN V3 operation about 6 weeks ago and I want to share some of my post op symptoms I am experiencing and compare with Alice experience and subsequent progression. How can we get connected on this platform? Appreciated your reply and supports.

Snowboot