Cheek injection surgery

Has anyone had this done? I has atypical neuro. and my dr. feels this is the best way to go. I would like to cut back on some of these meds that I am on. I am having a hard time walking. I am falling over alot. I also repeat the last thing that I am looking at or someone else has said?? weird! I am still having double vision, which my dr. said is from the high dose of my meds. Any suggestions would be great. Thanks, Kristin

Hey Kristin,

I haven't had this done, but there's a good description of it in Striking Back. Hope all goes well for you. It would be good to ask the doctor how many procedures he's done and what the success rate is.

Take care,

Norma

That is a good idea. THanks for writing back to my question. I will ask my doctor those questions, Thanks.

Norma C. Murray said:

Hey Kristin,

I haven't had this done, but there's a good description of it in Striking Back. Hope all goes well for you. It would be good to ask the doctor how many procedures he's done and what the success is.

Take care,

Norma

One other note: There are three different types of percutaneous (through the cheek) surgeries that people sometimes confuse with "injections". If your doctor is talking about a Glycerol Rhizotomy (injection of a form of alcohol into one of the cavities within the skull through which the trigeminal nerve runs), then I would advise you to STOP! This procedure has a much less consistent record of positive outcomes than the other two forms. RF Rhizotomy is used to cause a small, controlled lesion on the nerve by heating up a restricted segment with RF energy via a probe. Balloon Compression causes a similar lesion by mechanical compression. Both are known to have a higher rate of initial success and longer average periods of pain reduction or remission, than the glycerol procedure.

A fourth technique involves an injection through the cheek of Phenol or another anesthetic (Lydocaine) into one of the nerve ganglia (a branch point). Such nerve blocks are sometimes successful in blocking pain for periods of months. However, more than one such injection may be needed to obtain relief. So it is indeed wise to ask the proposing doctor about the details of his or her successful outcome statistics. Few general practitioners are trained deeply in this class of procedures and many are not aware of the need to consider a series rather than a single administration of the block.

What meds and doses are you on, please? Double vision is fairly common as a side effect of Tegretol.

Regards and best,

Red

Thanks for the interesting info. I am on tegretol 1600mg/day, neurotrin 1800 mg/day, wellburtrin 300mg/at night. It is the Glycerol Rhizotomy. They also highlighted a brochure which called it Radiofrequency thermal lesioning? Is this the same thing? The last MRI I had done said there was no compression on the nerve. My neuro. said this would be a good option or the gamma knife if needed. This doctor said the glycerol injection would be a good option. Is this because they do this at there hospital? I wonder. My head is spinning from all of this. Stress makes my face hurt worse? Is that weird or uncommon? My face seems to be getting worse. I can’t take any more meds or I won’t be able to work! Thanks again, Kristin

Richard A. “Red” Lawhern said:

One other note: There are three different types of percutaneous (through the cheek) surgeries that people sometimes confuse with "injections". If your doctor is talking about a Glycerol Rhizotomy (injection of a form of alcohol into one of the cavities within the skull through which the trigeminal runs), then I would advise you to STOP! This procedure has a much less consistent record of positive outcomes than the other two forms. RF Rhizotomy is used to cause a small, controlled lesion on the nerve by heating up a restricted segment with RF energy via a probe. Balloon Compression causes a similar lesion by mechanical compression. Both are known to have a higher rate of initial success and longer average periods of pain reduction or remission, than the glycerol procedure.

A fourth technique involves an injection through the cheek of Phenol or another anesthetic (Lydocaine) into one of the nerve ganglia (a branch point). Such nerve blocks are sometimes in blocking pain for periods of months. However, more than one such injection may be needed to obtain relief. So it is indeed wise to ask the proposing doctor about the details of his or her successful outcome statistics. Few general practitioners are trained deeply in this of procedures and many are not aware of the need to consider a series rather than a single administration of the block.

What meds and doses are you on, please? Double vision is fairly common as a side effect of Tegretol.

Regards and best,

Red

Yes, RF Rhizotomy is sometimes referred to as RF lesioning. However, FYI: Gamma Knife has a generally much poorer record of persistent pain relief than either RF Rhizotomy or MVD. Likewise be advised that it is common for surgical investigation preparatory to MVD to find nerve compressions that are not revealed in even the best resolution MRI pictures. Compressions are not as reliably found in cases of atypical TN with its background of constant boring, burning, grinding pain, as in typical TN with its volleys of sharp lightning strike electrical shock pain...

Regards,Red

Kristin I also had to cut back some of my med’s due to I could not walk with other problem,s took high dosage for two year’s .I also have tried nerve blosk injection’s not much luck in it so far . And still giving it a Try through pain management. I alco Was very dizzey double vision. Im Not having these symtome’s since I cut bak on Med’s that’s when I started trying more facial injection’s. Hope you get some relief soon I Know for me Dizzey and double vision was some thing I just could not do. Hope you find some thing that helps with this talk to your Nerologist aboute this. Because for me it never did get better till I cut back My med’s. I gave it more then a try tried high dosage of med’s for two year’s.Hope you find what work’s best for you in finding pain relief. Also I noticed. (Red) comented on this page He offer’s good info on facial injection’s . and other Info Thank’s Red. Shirley

I have suffered from TN for a little over 3 years now. I had the MVD procedure on 2/5/2009 and felt absolutely no relief from that procedure. I lost health insurance for a year and had trouble getting coverage due to the pre existing conditions that TN brought along. I finally got coverage and went back to my neurosurgeon this past Thursday. Within a matter of 20 minutes I was told that I had the Atypical TN and that the next step was to have Radiofrequency Thermal Rhizotomy performed and that he had an opening for me on Friday morning. After 3 years of living in misery I jumped at the chance to have some relief....sadly it didn't occur to me to ask exactly how I would feel afterwards. I had an oral surgeon that had done a nerve block on my left cheek several months ago and it was the only day that I had any relief from the pain and it was heavenly even if it was just for 8 hours. When I mentioned this at the neuro appointment I was told that it was a wonderful sign that I responded to the temporary block and that the RF should work just as well. I went in Friday morning and everything went very smoothly. I woke up feeling hopeful for the first time in months...went home and waited for the numbness from surgery ease up so I could assess how it was going to feel long term and I am sad to say that none of the numbness has gone away at all. I cannot feel the entire left side of my head. From the middle of my lips, my tongue, the left side gums, roof of my mouth, inside my left cheek, my left eyebrow, left eye, left ear, left hairline from my forehead down to my chin...nothing. Occasional painful bruised feeling that shoots up my left side next to my left eye...other than that no feelings....just a miserable numb, tingling feeling that is like half of my head has died. This is not how the short term block felt and to be honest I am scared to death that this is not going to get any better...that for the rest of my life half of my head will feel like it belongs on a dead person.

Is there anyone out there that has had this procedure that can tell me how I am suppose to feel??? Please contact me or leave a comment...I am pretty freaked out and I am not really comfortable calling the neurosurgeon until I hear some other opinions...he is not overly approachable. Thanks guys!

I am now scheduled for the MVD surgery on April 20th. I hope this ends some of the pain! A couple of weeks ago I had an attack to where I couldn't even talk at all. It would set the pain off immediately. I answer phones and ring up people at work and I had to stay in the back in tears. That episode only last a day and a half that god. I had a dull pain on my right upper tooth also, would that be from the pain also? I still have ear pain, I can't sleep on that side to much? Anyone else dealing with this?

I am so nervous to get this done! Everyone is praying for me. I hope everyone else finds pain relief also.

Hi Kristin,

I have had TN for about 4 years now. It is horrible and I have the same problem with stress being a trigger. Unfortunately I work in a hostile environment and management is the problem. I had the glycerol injection at Hopkins in Baltimore. I was pain free for 7 months. In the past couple of months I have started with pain again. Worse yet, now I am getting the pain on the right side of my face as well. Until now, it was just on the left. I cannot drink or eat anything cold, really cold. I did use Lyrica before the injection and was mainly pain free. I still had moments but not every day. They now told me that narcotics don't do anything for the pain because it is a nerve pain and those are designed for soft tissue pains. You could try the Lyrica. I wanted a baby and it is NOT RECOMMENDED to take that. Well, God blessed me while I was on it still and delivered a healthy baby girl. I would not recommend doing that though. It was a timing issue, I went in for the surgery to find out I was pregnant. I tried to stop the Lyrica but the pain had me doubled over. Hence, they kept me on the Lyrica. I wish the best of luck to you. I wish they could find a cure or a way for us to live a normal life but I am thinking that won't happen. Not anytime soon anyway. Take care. Lisa

Have you thought of having the MVD done? It seems to have a better sucess rate. I also want to have baby. I need to get off my meds first. I am glad you were blessed with a baby girl. It would be nice to find a cure for this.

Good luck and God bless.

dear kimkow - i was so frighened to read your post : ( please call your docor who did the surgery and ask him. i think that is what my doctor wanted to do to me (next week maybe), and i know he mentioned numbening of the side of the face - and i think he DID say it will pass away - but can take month. but it will pass away . but of course we hear so many things... one can not assure - but i do know i read it can happen - and can pass even if it takes a while.



Shirley - did the meds help at least to eleminate the pain at that time ? how do you handle with the great pain now without the meds ?


Kristin - i know what you mean - i'm having an attack today for HOURS and it can last . i don't belive i'm even sitting here writing this. i know what it is to be in an office answering phones with that pain. it's unbelievbale. do you also have 24/7 pain ? mine never goes away. i wish you luck on the surgery. i think that's the right thing to do. can't sit on the fence with these kinda pains :(