Botox injections for Chiari headaches

[SaratogaNurse]

Hi All.

It's been a while since I've posted, but I wanted to let you know the latest.   I'm working with my Neurologist to try to put off surgery for a couple of years and avoid becoming addicted to all the narcotics everyone seems to throw at Chiari patients.   My Neuro Doc suggested we try botox injections for the head pain that has been my biggest and worst symptom....  Constant 24/7 pain in the back of my head.

Anyway, I had the botox injections on Dec 17th.   I was warned that it might work, it might not.   It can start to work two weeks after the injections are done, but it might not start to work until you go back for the next session three months later...  this is still pretty experimental for headaches.  

I haven't had a headache for 7 days!  At first I was afraid to say anything because I thought I would jinx it...  and we're not even sure how long it will last (we're keeping our fingers crossed that it will last until my next session in 3 months).   I still get the pain when I sneeze, cough, etc, but the 24/7 headache is gone..   OK.  Technically, it isn't gone, but I can't feel it.

   The botox works for headaches the same way it works to smooth out wrinkles...  it paralizes the nerves.    I understand that this in no way cures me or makes me better, but I don't need to take pain meds that I'll need rehab for later (and they didn't work anyway).   The process wasn't a lot of fun, it involved 36 injections, they circled my head like a halo, then went down the back of my neck and into my shoulders.  

   I don't know how long this will work or if we'll be able to hold off surgery (having Cine MRI next week), but I'll keep it posted here..  so far, for me at least, this has been exciting and wonderful.   I was able to laugh with my daughter last night and it didn't hurt..  she said it was the first time she had seen me relax and laugh like that in 5 months.  

   My Neurologist has used the Botox for many migraine and brain injury patients....  I'm the first Chiari patient he's tried it on...  Can you say Guinnee Pig?  LOL  But in this case, I don't mind.

PS:  The back of my head is as smooth as a baby's butt...  I may shave my head.  LOL  ;-)

Penny

[dsan0696]

Hi, I notice it has been 6 mo. + since you started this & botox injections.  Would you mind updating it?   I found this when I did a search and I know myself & others may be interested.

Currently my #1 issue is the severe headache pain & upper neck.   I did though just start a new P.T. regimen with upper massage 3xs a week and I have went 2 days with no severe pain.   WOW, but not getting my hopes up and still doing research.   I have thought of botox because it can 'stick' with you longer.   Want to ask my dr. about it, but still 'investigating' it more too.

THANKS
Denise

[dermarfx]

thats great that you have some relief....

[SaratogaNurse]

Thanks all.   I'll keep you posted.   I've been warned that my head will tell me that my injections are due before my calander does.  I'm already scheduled for it and approved by my insurance company.   I'm hoping the effect lasts that long.  My NL said he might be able to get approval to go every 10 weeks instead of every 12..  but that would take "fancy foot work"(his words)..  I told him to start dancing.  LOL

I'll update here as I go.   :-)

Oh...   my 42 year old forehead is also oddly smooth..   you know how you raise your eyebrows and your forehead wrinkles?   The top inch of my forehead stays smooth and the rest of it wrinkles!    

[greeneyes247724]

I too have had the Botox injections and they do help with the headaches!!  I agree with what the last post says.....you can tell when the dose is wearing off cuz the headaches will start coming on pretty strong and you know the 3 months is up and it's time for another round of shots!!    

[608lion]

That's awesome that it working for you!! I had it done about six or seven years ago but did nothing for me(other than a youthful forehead). My Dr only did three shots in the forehead and six in the back of the neck. I had three treatments of over nine months(maybe they didn't give me enough shots at each treatment?). One other point I wanted to tell you was after I stopped treatment I started to get a sharp pain in my left temple close to my eye that I never experienced before the shots, which I still get quite often. The Dr didn't believe it was related,but who knows!! Anyways I hope it keeps working for you!!
God Bless!!

[not_all_tonsils_are_in_your_throat]

My daughter has had 2 rounds of injections at the local VA hospital for headaches from her chiari.  They are helping.  She can tell when the original dose is wearing off, the headaches pain is "deeper" and stronger.  She is a believer.

[youngwife]

Thanks so much for sharing your success with us!  I am thrilled that you've gotten relief, and I can't wait to hear about the long term.

Blessings of pain free day for you,

Rebecca

[selmaS]

Hi Penny and welcome back !!

SO glad this appears to be working and i pray it continues to give u positive results.The only other person I know of that got botox injections was for a voice issue...so this is indeed new!

LOL on the baby butt similarities to the back of ur head.....too funny.

Look forward to updates : )

"selma"