so I had cyberknife treatment a year ago here in austin, texas.
it is stereotactic radiosurgery. basically they shoot radiation into your head to try to cut the nerve.
I don’t feel any lessening of any of my types of facial pain, but I had one of those dumb facebook memories come up and was reminded that the doctor said it wouldn’t reduce my pain so in that regard it was a success! lol.
I had thought it was a waste of money, but later, when I gave it more thought, I realized that the tazerlike lightning strikes in my head which I had frequently, even with gabapentin and carbamazepine and tramadol and tizanidine were either all but gone, or not as tazerlike as they were before. now I couldn’t tell you if it’s because the carbamazepine just got more effective after 5 years or if it is because of the radiation treatment, because I sure ain’t about to do an experiment and cycle off of the carbamazepine, but I thought I would at least throw my followup story out here in case someone had ever considered it.
all my other pains are still present. EVERpresent. I have a mixture of tn1 and tn2. I have had a 24hr a day 7 days a week perpetual ache in my head and face for about 6 years now with no abatement.
botox injections have been helping with my newest symptom where I started to feel like someone was burning my face with a cigarette, so yay! for botox.I get it done every 3 months.
tramadol has reduced my eye pain about 70%. I take 25mg every 3 hours, and 50gm at bedtime. so, yay for tramadol, the non-addictive opioid AGONIST that still gets treated like an opiate-opiate even though it doesn’t get you high. I no longer want to take a melon baller and scoop my eyeball out.
my lidocaine ointment rx doesn’t help that much but it does a little so I keeps puttin it on. mix it up with some thermacare and that capsaicin in it might burn a little but that burn causes a bit of a nerve distraction and the outer pain diminishes but it doesn’t really last for about as long as it takes to dry off.
I tried baclofen and amitriptilyne but they didn’t do a bit of good, but hey! the amitriptyline made me literally leap out of bed at night and it gave my hands spasms so bad I thought I was getting cerebral palsy, and it sent shocks up my arms for a couple of hours after I woke up. how do I know? cuz I quit it cold turkey and none of that has happened since. easy. easy. my doc said it was ok for me to just up and quit
I think the doc is about at the end of her suggestions, although she didn’t say so, so she recommended that I go to a pain management clinic, a specific one because she doesn’t consider it a pill mill.
I go to work every day, never call out sick, cuz I can’t give in. I can’t give up. I just tell the coworkers who hear me scream randomly, or see my head jar to the side like I got whiplash, to just ignore me.
it could be worse, right?
I have never replied to a comment so you are the one. Maybe I’ll come out of seclusion. I feel, burning, eyeball pain and tazershock. All common denominators. I have Atypical TN, AD and migraine headaches. I wondered about Cyberknife to get to the point. I have read it will almost for certain do further damage such as create burning numbness which I already have thanks to MVD surgery gone bad. Though for a year or so I didn’t get shock pain. It’s back And the worst thing is when it hits my eye. I know what you mean about little scream. I am sure people at times think I’m spastic. It’s odd how we jerk away from the pain. Actually that might be very normal. Do you feel like it actually did anything long or short term to help your symptoms? Just curious.
Fight on fellow Warrior
JT1
I didn’t think so at first. with allll this stuff, it’s so hard to say until you quit something or you start back up again. it just one day dawned on me that I wasn’t having lightning bolts through my brain like I used to. I still get darts of pain, but not like I used to, and I don’t know if it was due to cyberknife or due to the anti-seizure med. I’d have to stop taking it to assess that properly and I’m afraid to! cyberknife can cause anaesthesia dolorosa, but it sounds like you may already have that, so the big worry there is really HOW EXPANSIVE IS YOUR POCKETBOOK, amirite? I was to the point to where I thought, I’m a single guy, I don’t drink, my car is paid off, why the hell not? lol.
doesn’t the MVD put a little pillow in between a blood vessel and the nerve? well cyberknife is supposed sort of just slice it off completely I thought. I was given that as a choice rather than MVD because they couldn’t find any place to put the teflon pillow to keep the nerve from “sparking”.
as for your eyepain, it couldn’t hurt to try tramadol, could it?
I have been in every traditional Med used for TN and then some. Including Tramadol. Nothing helps the burn except klonipin a little bit. If nothing else it helps me sleep. When I had MVD he found a few small blood vessels in the nerve and padded them with Teflon. My nerve is losing the Mylen sheath. The surgeon wrapped places in Teflon for that and in handling the nerve caused AD. So I’ve been told. He striped the nerve in places and wrapped it according to the Op notes. He was Japanese and had very broken English. He came highly recommended but it was difficult to communicate. I was desperate! I am fairly stable now though long way from pain free. Mostly effected by weather, stress and just whenever the nerve flares for whatever reason. The burning is hard to deal with and the numbness in my mouth. My teeth hurt all the time. Feels like pressure on them. I get shocks in my cheek and eye the worst. Typical issues. I’m in pain mgt at Duke Medicine right now. I tend to be allergic to anti seizure meds. Plus I enjoy having my cognitive ability functional. At one point I was in so much Tramadol and neurontin that I felt disconnected from life. My limbs and hand jerked and my mouth was unbearably dry. Then my mouth started swelling. I’ve had all kinds of crazy reactions to different drugs. I have good insurance but I have no idea if they cover gamma/cyber. They covered the MVD surgery and all the nerve block injections I’ve had. For someone who has never spoken on here I sure have gotten chattie. Thanks for replying and I hope you have the best day possible
what exactly does a pain management clinic do that my regular neurologist can’t? do they give you the hard stuff cuz they’re paranoid about it? I am feelin you on the dry mouth and the twitching. at least the gabapentin has helped with the tooth pain mostly for myself. it’s just that CONSTANT DULL ACHE I can’t seem to overcome, no matter how much goop I put on my face. the capsaicin does help, like I’ve said, but only til it dries up a bit. and woe betide you if you accidentally touch your nethers or the eye and you forgot and touched your face beforehand lol. have a good evenin
Hi Egoiste
Thank you for your update.You are always so brutally honest.Amitryptiline makes my hands go dead numb at nite.
I have found that clonazepam,with gababapentin and a tiny amount of codeine numbs me down as much as he 90 mg of codeine that I was taking before.
I am glad you have a wicked sense of humour.I have found the pain clinic useless-no one wanted me to try clonazepam as that was not my problem-but what the H-they don’t even know what I have.
Have you tried mint oil on your face?It will make you smell purty.
Hi, This is my first time writing, also. Due to three years of constant “atypical facial pain”/TN2, after many, many drugs from several neurologists and a pain management clinic, I was desperate and tried the gamma knife surgery (Newport Beach, CA). So far, (since last October), no miracles have occurred and am still in constant pain and on a mixture of gabapentin/indocin/fioricet (with codeine), along with topomax for migraines. I tried Botox, but that didn’t work. Just recently, I tried using what someone else on this list mentioned (an UltraSonic device), but find that I must use it constantly to get results, however, it does seem to help. So perhaps I just need to resign myself to constant (ie, hourly) UltraSonic treatments (it’s cheap and drug free). I just get depressed, with feelings of helplessness.
the botox only helps me with the cigarette burn pain I have that always feels very exterior, and with some of the tension pain I get from the stress of enduring all the other pain, if that makes any sense. I consider it bleedover and tangential.
it has also helped over my lip. I have a tendency to touch my face there which I knooooow I shouldn’t be doing, but 50 years of habit is hard to let go of.
I get some across my lower jawline too which helps.
but for that internal, gnawing, aching, constant pain? yeah. nothing. but I’ll take it.
ellen, my doctor is reluctant to let me try either xanax or valium because she says it can make pain worse.
when I tried kratom, though, it was the sedation that made me feel better. I don’t know how it works on the brain, but it could also be that it latches onto the opiate receptors to block pain. I think it’s a combination of both.
I tried doing benadryl during the day to see if that would help with the sedation aspect, but you and I know that benadryl plus any kind of codeine derivative is gonna leave you seriously dehydrated and wishing your bathroom visits were more fruitful winkwink THANK YOU docusate sodium capsules at night
I started tai chi and that has really loosened things up.And I am inept at it-but it has made things just swoosh right out the back door.
I would love to try Kratom-but I don’t know a good source.
Have you ever tried growing your own poppies.They are very pretty.Seeds can be got at the bulk barn or where-ever for very cheap.
Just an idea-chew on a pod every now and then.
The things we got to do.
No one wanted me to have the clonazepam-but they do not know what I have and so far it s helping.
The Ativan I was taking at nite never made the pain worse.And I doubt I could convince anyone to give me a trial of valium-but I am thrilled with the clonazepam-it has taken the major part of the pain in the tooth away and makes it just feel dead.Maybe you could get a script for just a few and see if it helps.As it is not something that needs to build up in your system
I cannot believe that you are working through all this.
I too suffered from all the same horrible symptoms. Then… a miracle. Spirulina! (an herb… get it from Springtime herbs if you decide to try it.) At first, I took a fairly high dose… 4000mg 3X per day. I was gradually able to reduce it to 3000 per day.
To make a long story short, I discovered spirulina because my horse has the equine equivalent of TN. Believe it or not, there is SIGNIFICANT cross over between horse and human medicine. Vets often speak at medical conferences and vice-versa. There is a world renounned vet at UC Davis who has been studying horse TN (called equine headshaking) for over 30 years. Spirulina is on his list of things of things to try. It saved my horse’s life! If you want more info, I am happy to share. All I can say is that I have my life back and live 95% pain free all due to taking spirulina. No other drugs or surgery. I have several friends who also have TN or GN, and they are finding significant relief by taking spirulina. Dosage and where you buy it is critical since the manufacturing process for supplements is not strictly regulated. Email me if you want more info. ■■■■
You are a total inspiration to me!!! Going to work daily. All these medication make me dizzy.
Last night I injectied lidocaine into my face, as I am a dentist. Everyone find an oral surgeon to go to. They will numb up your face on a bad day. Long acting lidocaine lasts 8 hours. Go on a good day just to meet the doctor. I go on my breakthrough pain days, and boy oh boy does it help!!!
Hi, wow I feel for you . I know just what yu are going through. I had Cyber K and it lasted about 2 weeks then I went to SRP and it lasted about 3 weeks and then I want to MVD and I am so sorry about that. I know have the shooting electric shocks eye pain,it made me deaf in the right ear, I can not control the right side of my face I can’t hold food in my mouth nor open it far enough to get a bite of a hambuger. And on top of all that it is starting to come back as it was before the MVD. SO the down play they said ,"Well it was because of all the scaring from other procedures that you are now with the deafness and lose of feeling and etc, etc. etc, and so on. Well why didn’t they tell me of all this before the operation??? They had all the information in my chart. So. it seems to me that NONE of these doctors know how to help us. They take a shot in the dark and hope it does enough good to be lauded for it. I understand that we have to try something but be very sure to ask LOTS of questions before you try any thing suggested. ASK here and everywhere, your doctor who may tell you the truth but here is where you get an answer to someone that has “been there done that”.
exactly! when my surgeon suggested MVD (without even looking at any MRI’s or anything) I had a fight with him over it and told him after LOTS of reading up about it on here, that I was not going to crack open my skull just to maybe have about 2 years of respite, with 6months of that 2 years just in recovery from the surgery! it was not worth it to me. you have to do the homework and you can’t just try it because doctors suggest it. I must admit I was at a low point when I tried cyberknife and was willing to do anything. it was non-invasive and only took about as long as it takes to run out for a cup of coffee so I figured what the hell. why not? I had the money.
but yes, they are literally shooting in the dark, but that’s all they can do, because it’s all a mystery, and every patient is its own mystery
Hi, Thanks for writing. I wished I was as smart as you were. But I had a few things against me. One the Nuro was supposed to have done 100’s of these. I was drugged shocked out. And Desperate as most of us are when an attack hits us. So I now live with happened but I try to warn others that we US are the only ones that really know what is best thus the “ASK LOTS OF QUESTIONS” thing.
Thanks again for the note I really appreciate knowing that three was at least one person that read it.
