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Living With Facial Pain

A2m Treatment

#1

Has anyone tried this A2M stuff for typical facial pain.I was told that it may rebuild the myelin sheath.
It looks like they withdraw some blood-process it and then inject it-not exactly sure.
Just wondering whether anyone has tried it.
Thanks

#2

Hi Ellen6. I hadn’t heard of it before now, but at this point, I’ll try just about anything. Please post if you do end up trying it or know of anyone who has. My best to you.

#3

I will let you know.

I had Botox last week on my jaw.Done by a maxiofacial guy who did not think it would help.It is doing something-on the right side.

Touch wood that it helps as it is much cheaper than the A2M-which is about 2 grand-but supposed to repair the myelin sheath.

#4

I’ve never heard of this, Ellen - it sounds really interesting. I’m going to look it up. Please do tell us about it if you find out anything else or decide to try it. Is it a ‘legitimate’ medical treatment as done by doctors, or is it an alternative one done by alternative health practitioners?

#5

Hi

It is an official medical doctor kind of thing.

I had never heard of it before-but I just had an appointment at one of the larger hospitals in Toronto and the doctor suggested it.It is not done in hospitals-as it is not covered.But he does work out of my private pain management office so I would get it done there-if it comes to that.So far,touch wood,the botox is helping me to reduce my pain meds by a third in one week-which just proves to me that I am taking them for pain-not because I am addicted to them

From what I understand the A2M is something akin to stem cell treatment.

#6

I would offer a word of caution about A2M – right now it’s vaguely considered a possible next generation arthritis treatment. A2M is specifically used to promote tissue growth, prevent the breakdown of cartilage, and support the overall restoration of an affected joint. Which, really, has nothing to do with nerve damage. Although they do make the claim that it can also be used “with other degenerative conditions” – which sounds entirely too vague and broad-based to me.

The A2M gene is implicated in Alzheimer’s disease – which is also very far away from TN/ATN.

The fact that it’s not covered and being offered for cash payment is also a red flag for me. Could it be a money maker for the office? I can’t find any evidence that it helps nerves in any setting, and, based on the studies so far, having the treatment done doesn’t seem to be risk factor for adverse reaction, it just won’t work outside a joint. At least as far as I can tell, keep in mind I’m not a doctor.

#7

I am seeing that ,too-but when they went into the back room to look up what might be available to me it came up .Possibly something to do with my waardenburg Syndrome.They said that could cause demyelinization and the a2m might repair it.

Much in Canada is now being offered in private clinics-so I would not be worried about that aspect.

Whether it is a money maker-pretty sure it is-I would not be doing physio,chiro or a whole host of other things waiting for them to be “covered”.

Thanks for your opinion-would like to see if anyone else has been offered and tried this therapy

#8

Hi ellen6,
I had the A2M treatment yesterday at my neurologist’s office/treatment center. She charged $2500 doctor fee and $400 for the facility charge. I’ll let you know how it goes. So far, nothing has had any lasting effect on me, so I thought I’d give it a try.

#9

Hi Hollywood girl

Thank you so much for letting me know.

What country are you in?

My neurologist made me go back to my dentist yesterday and t was like -well what do you want me to do.Can you do a pain block of the masseter muscle?.Ok\How does that feel(just dental freezing)it made the tooth numb but the pain is gone-can you give me a cortisone injection -no-nothing.

Just started crying like a baby.

t is so humiliating to have to go through that -I do so hope the a2 m works for you.

Please let me know .Did they say when you might feel a change?

1 Like
#10

I’m so sorry your neuro sent you on that chase for ???. It seems to me that ‘practice’ really fills the bill when it comes to TN and medicine. It’s bad enough to waste people’s time but squandering hope is a terrible thing. My last face to face with a physician, he asked me where I went to school and why I carry water in a glass bottle - sigh. He looked like a kid at Christmas when he said “I hate to tell you this but you are pointing to the left side of your face” as he winked knowingly at the intern. Have I sighed yet?

Lately, I’ve been running around like a headless chicken squawking about a study… Who exactly would be willing to get off of their meds to play guinea pig when there’s a 1 in 2 or 3 chance they’ll draw the placebo card? However, in my muffins (auto correct - was trying for ‘musings’ - muffins made me laugh) it occurred to me, when was Gabapentin studied for TN or any of the other go to pharmacopia? If it has at all, there hasn’t been much or many. So, in the morning, I’m going straight to the horse’s mouth and reaching out to Dr. Senelick in San Antonio. Somewhere on this planet is a physician who will entertain the idea of trying stimulants under strict control. It really isn’t that far fetched after all, once upon a time doctors used to ‘let the bad blood out’. What if the meds have been going in the wrong direction all of this time?

#11

I guess you got to pass thm a few bucks to make sure you get the good drugs(just joking,I think)

#12

I have had atypical trigeminal neuralgia for 9 years. It started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant and moves around. It’s mostly moderate to severe. With the pain I have ringing in my ears, noise sensitivity, twitching (usually not visible, but I can feel it), burning eye (right side only), and depression. I have received something like 18 different diagnoses ranging from TMJ to cluster headaches.

I’ve tried a lot of different medications. Most didn’t work and they all had side effects. One put me into the hospital 2 weeks from falling on my knees due to dizziness-Carbamazepine. Finally what worked for four years was 10 mg of oxycodone every 4 hours which was the only thing that made me feel somewhat normal again. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of the new DEA and government rules and my Neurologist’s panic.
Interesting is sent to outpatient rehab. Took only 4 days to withdraw. People like us usually don’t get addicted, our bodies do get dependent. Look up painkiller in the dictionary and statistics of addiction for real patients in real pain.
Have tried for Trigemninal Neuralgia II:
Acupuncture
Acetaminophen
Botox
Biofeedback
Carbamazepine
Cymbalta
Gabapentin
Ibuprofen
Lanocaine Patch- (Primary Dr said NO NO!)
Lyrica
Marijuana (Had legal card, Made headaches worse)
Oxcarbazine- (nearly killed me)
Oxycodone-(worked)
Savella
Special Diets
Toporox
Vibryrd

#13

Hi Ellen6,

I forgot to ask when I might know whether the A2M is helping or not. I can tell you that I had more pain during the week afterward, likely because the injections are straight into the most painful part of the nerves and are fairly excruciating during the actual treatment (which lasted only 15 or 20 minutes, thankfully). Yesterday was the first day I started feeling back to status quo (my usual TN self).

I’m so sorry for your pain and frustration. I know it all too well. So many times I feel we are seeing doctors who know far less about our condition than we do. I do believe a breakthrough will come, and there are some interesting drugs in clinical trials. Hang in there.

#14

Hi Larry

That is quite the list!

looks something like mine.

I have found that narcotics work the best for me.

When my doctor tried to put me on 12 hour morphine I had to explain that he would have to double the dose as I don’t take narcotics at nite-so that ended that tylenol3 (brand) and 1 codeine along with gabapentin and baclofen and an over the counter muscle relaxant.With milk thistle

I have found the CLONAZEPAM also works-which really tells me mine may be muscle related.

you tried that one yet?

What a way to live.

I seems that in Canada the doctors are prescribing morphine instead of oxy’s.

I hope you get a doctor to prescribe what helps with your pain.

take care

#15

Hi Hollywood Girl

I am so sorry that it has made you sorrer.

I hope it kicks in.

I am having an appointment at the pain clinic this week and will try to ask some questions about it and let you know.

I am going to see if he can do Kenalog in the masseter muscle and also a script for topical with muscle relaxants in it.

Darn-I wish you had said that you were pain free and flying through the air blowing bubbles on all of us.

#16

Thank You Ellen,

FYI I do take 1 2mg CLONAZEPAM at night after the oxy wears off too sjeep.

Larry

#17

Hi Larry

I am glad that you are back on the oxy and that you have 2 mg clonazepam to sleep.I doubt my doctors would get that high for me.But my face pain is different than yours.I just found out that the a2m treatment might not be available anymore in Canada since it was grey market-not in main hospitals but in the pay for service pain clinics.So Hollywood Girl might be the only brave one to try.