My 8o year old mom is considering a RF Rhizotomy at a major Boston hospital. She has atypical TN and they are planning on making the lesion on V2. We are meeting with the neurologist next week to discuss her concerns. She is primarily worried about her face drooping and facial and eye numbness. We realize there are no guarantees with this procedure, but we have to try something. If there is numbness, will it feel like you had a novacaine injection? Does the numbness last forever and do you ever get used to it?
She has been dealing with this for 3 years and does not tolerate medication well.
The following table is extracted from an article in the late 1990s by Dr. Ron Apfelbaum, (University of Utah) title "Neurovascular Decompression - Procedure of Choice?" It provides a summary of outcomes observed following RF Rhizotomy for TYPICAL TN, drawn from multiple literature sources. I presently know of no comparable data for ATN. The term "rcr" appears to be "Recurrence". The numbers to the right side of the table are percentages.
TABLE 10
Comparative Results ‑ RFL [Radio Frequency Lesioning (Rhizotomy)]
Series |
# |
Av. f/u |
Rcr |
PR |
MP |
OP |
CA |
DY |
AD |
Siegfried (53) |
1000 |
5‑7 |
21 |
98 |
25 |
4 |
2.8 |
24 |
3 |
|
Tew (41) (with curved electrode) (43) |
400 500 |
4 9 |
14 20 |
98 98 |
22 7 |
2 0 |
20 3 |
19 11 |
0.3 0.2 |
Moraci, et.al. (54) |
568 |
2‑10 |
16 |
96 |
11 |
0 |
0.6 |
21 |
0.3 |
Fraioli, et.al. (55) |
527 |
5.8 |
10 |
98 |
3 |
0.2 |
3 |
15 |
1.5 |
Menzel (56) |
315 |
12 |
80 |
97 |
50 |
|
|
93 |
2 |
Sweet (39) |
274 |
4 |
22 |
91 |
43 |
0 |
9 |
2 |
1 |
Apfelbaum |
109 |
8.8 |
19 |
92 |
|
0 |
1.2 |
26 |
2 |
|
Taha & Tew (43) (Literature review) |
6205 |
2‑9 |
23 |
98 |
24 |
|
7 |
24 |
1.5 |
PR = Pain Relief, MP = Motor Palsy, OP = Oculomotor Palsy,
CA = Corneal Anesthesia, DY = Dysesthesia, AD = Anesthesia Dolorosa
f/u = follow up period in years.
I had a Radio frequency lesion done a month ago. The surgery took a little over one hour and then about 2 hours in post op. I had numbness as soon as I woke up and still have numbness in my lower left jaw/cheek/ and left side of my teeth and gums top and bottom. The numbness has decreased by maybe 50% now, but from what I'm told, the numbness is what determines the relief. I'm pretty much used to the feeling and don't really have any problems with droopy face or other problems.
Although my biggest issue is I received NO PAIN RELIEF! I was told by the neuro surgeon that I had a really tough nerve and he gave me the maximum frequency he could. He also said I was in the 10% that the procedure just didn't work for. I was very disappointed! I'm sure the surgery will help most people and I'm hopeful it works for you.
I was told the relief could last up to four years and can be done again at that time, but the duration wouldn't last as long next time.
Good luck and I hope this helps, John
Thanks for the reply. Sorry to hear that you didn’t have a great outcome. Can I ask you to explain the numbness as my mother’s biggest fear is that she will always feel like she just had novacaine. My mom wants to go ahead with the procedure, but wants the surgeon to be on the less aggressive side if that is possible.
The numbeness for me was the worst just after the procedure and seemed to get better for the next month. It does feel like you've been to the dentist and the novacaine is wearing off. Some tingling also. I hardly notice it now after a month and it didn't bother me after a couple of weeks. I was told that the degree of numbness determined the success of the procedure.
FYI. If your sugery is the same as mine, the Dr. woke me up during the procedure and poked me with a needle to see how much numbness I had. Don't let him go too lightly or it may not work. Good luck and ask any questions you would like. John
Hope your Mom has good success with the surgery. I had that in 2004. My whole left side is VERY numb, plus my eye, teeth, tongue, gums. Also have major burning of the eye with any kind of light, to the point that my eye would close because of the burning. Had to have special Scalaro Lens made for my eyes for protection. Made in Boston at the Boston Foundation for Sight. (WONDERFUL DOCTORS) Did have a MVD done in 2010 to help the eye problem. Still have burning and all the other problems, but my eye doesn’t close with light. I’m sorry to say I have had the worst experience with that particular surgery, but I do know many have good success. Make sure the Dr. has done many of these surgeries. Good luck to your Mom and wish you well.
Thanks for the reply.
So far, I haven't heard from any one who has had success with this surgery. Her doctor, Dr. Eskander at MGH, has a great reputation, so hopefully she will have a good outcome.
Is your numbness feeeling equivalent to a novacaine feeling?
I'm sorry that it didn't work out for you.
boydotwo said:
The numbeness for me was the worst just after the procedure and seemed to get better for the next month. It does feel like you've been to the dentist and the novacaine is wearing off. Some tingling also. I hardly notice it now after a month and it didn't bother me after a couple of weeks. I was told that the degree of numbness determined the success of the procedure.
FYI. If your sugery is the same as mine, the Dr. woke me up during the procedure and poked me with a needle to see how much numbness I had. Don't let him go too lightly or it may not work. Good luck and ask any questions you would like. John
Farmerbuz said:
Thanks John
boydotwo said:The numbeness for me was the worst just after the procedure and seemed to get better for the next month. It does feel like you've been to the dentist and the novacaine is wearing off. Some tingling also. I hardly notice it now after a month and it didn't bother me after a couple of weeks. I was told that the degree of numbness determined the success of the procedure.
FYI. If your sugery is the same as mine, the Dr. woke me up during the procedure and poked me with a needle to see how much numbness I had. Don't let him go too lightly or it may not work. Good luck and ask any questions you would like. John
One footnote to the discussion, please: we tend to hear more negative reports on outcomes in a forum like Living With TN, than occur in the population at large. People who are no longer dealing with daily pain tend to drift away from venues in which that is the daily agenda. Please place that thought in the balance as you arrive at conclusions concerning the advisability of surgical procedures.
Regards, Red
Thanks, I’ll keep that in mind.
Richard A. “Red” Lawhern said:
One footnote to the discussion, please: we tend to hear more negative reports on outcomes in a forum like Living With TN, than occur in the population at large. People who are no longer dealing with daily pain tend to drift away from venues in which that is the daily agenda. Please place that thought in the balance as you arrive at conclusions concerning the advisability of surgical procedures.
Regards, Red
Red, I agree with you completely. It seems that most of the time people come here to educate and research the TN problem. I know from experience, that I was here frequently looking for answers when I was in pain. When I started to feel good from the meds, I tended to spend time doing things that I was unable to do when I wasn't feeling well.
I'm certainly begining to understand the frustration and even at times the hopelesness of the disease. This is a brutal and unpredictable problem that so many people face not knowing from day to day, hour to hour and even minute to minute what pain lies ahead. After the Radio Frequency Lesion didn't work for me and the thought of knowing a crainial exploration might not take care of the pain, the thought of taking medication the rest of my life just isn't that appealing. But for now, anything is better than the ruthless and insistant pain I was enduring. But I must say, that knowing there is a website like this to get answers and talk to folks with the same problem is very satisfying. John
Richard A. "Red" Lawhern said:
One footnote to the discussion, please: we tend to hear more negative reports on outcomes in a forum like Living With TN, than occur in the population at large. People who are no longer dealing with daily pain tend to drift away from venues in which that is the daily agenda. Please place that thought in the balance as you arrive at conclusions concerning the advisability of surgical procedures.
Regards, Red
Red, that is a really informative chart and I haven’t seen anything like that before. It’s very telling. I’d love to see a more current one if you ever run across one. Great information!