I can feel my fingertips for the first time in ten years - Botox, Dr. Donahue
 

It is amazing! I got the bilateral botox injections at 10 am on Tuesday. By noon, my right lung was breathing deeply, around 1 pm I got this strange bilateral tingling in my quads that lasted for two seconds, and then my left lung immediately kicked in breathing deeply.

When I got on the plane to go home around 4pm I took a strong muscle relaxant to help with the trip home. Within 20 minutes I could feel all of my fingertips (not as much with the pointer finger and thumb, and I have been able to feel the ring fingers since December following a bilateral pec minor release). I was so happy I started crying. This guy sitting next to me actually moved seats because he, I am sure I looked like a loon smiling with tears streaming down my face while touching my fingertips intently.

Spent part of Wednesday calling the jackass doctors in town who said it was all in my head letting them know that the botox helped. Partly for self satisfaction, and partly in an effort to prevent them from doing the same to someone else.

Went to work yesterday (desk job typing)made it until 45 minutes prior to going home okay (not great, but manageable discomfort) then became completely exhausted went home and slept 12 hours.

Stayed home today, hoping for more improvement over the weekend. Fingers are hypersensitive. Grasping muscles in hands have clearly atrophied. Heavy doors are not so heavy. Actually opened one particular door in a public place twice because I had always dreaded it, and it was so much lighter than in the past, I just wanted to double check it then walked away smiling because opening that door and finding it manageable was just awesome. Finding myself confused with the sense of touch. I feel like the blind man given his sight back.

Awesome news!

Great to hear, thanks for sharing!

Thanks for sharing.

Which muscles got the botox? How much?

Were there any particular tests or exams to determine that?

Bilateral anterior scalenes.

I got my pictures taken in Dr. Donahue's CAT scan. I will talk with them next week to find out the results and report on the botox.

I have since gone back and forth on the fingertip feeling since this weekend. It stayed it place from Tuesday to Friday constantly. My feet tend to fall asleep more now that started Tuesday night, it happens about every other day but it is not as painful as when the hands do at night. Yesterday the left side of my face fell asleep. Weird! My left side is worse. I have had quite a bit of nerve pain. Yesterday my left had turned a little bit bluish (new symptom). I laid down with my heating pads (yes plural) for a bit. Then my left hand and arm got warm, the blue went away, then the left hand looked maybe a little swollen, and got very warm for the rest of the evening. I could feel strange sensations on my whole left side all evening. It was good though, like things were trying to return to normal.

Today the whole left side is cold, and achy. Fingertips feeling is still there in some of the fingers, but not all. The achy part feels like nerve pain. It is still morning though. Everything is always worse in the morning.

My work is sitting at a desk typing and aggravates my symptoms significantly. Needless to say, my attendance has been lacking.

My goal is to be. "Fixed" one year from now. After ten years of this crap, I am finally open to surgery - everything got really bad last fall.

Anyway, Dr. Donahue is awesome. I am glad I went to see him. I wish I had years ago.

Thanks for the info.

Back when my hand would turn blue I could fix it by using the opposite hand to reach across and shove my rib down while tilting my head towards the rib (to create slack in the scalenes). In case that helps.

I use a tennis ball to shove my rib down. I lay on it and move my arm up and down slowly. I saw it off a link someone posted.

So now both of my feet have a strange crawling sensation, from the inside! It is strange.

That's fantastic that botox is working for you!

Well, the fingertip sensation is stayin intact. I was getting to the point where I was feeling almost okay, but then they had me go off some of my meds, specifically neurotin, skelaxin, Flexeril, and lidocaine patches to see how I did without them. I've got some pretty severe nerve pain, especially on the left side. Still get the strange crawling sensation like there are ants crawling out from inside my feet sometimes, again more in the left, and nerve pain in the left leg, especially lower left leg. Hands still fall asleep at night - this had stopped for the first week following the botox shots.

I will talk with the nurse later this week.

Overall, I am so far hoping that surgery is an option for me. At regeneration of one inch per month, hopefully the nerves would regroup and the pain be gone in a couple of years??? I hope.

Oh, and grip strength has significantly improved in left side, not so much the right side. I have a metal plate and eight screws in my right humerus which was from a car accident two years prior to the TOS car accident. Also, my right arm didn't work at birth due to either Erbs Palsy or more likely Klumpke's Palsy, so that may also play a role in the weak grip, idk, I hold pencils funny. Also, I bend my thumb when pinching something between my thumb and pointer finger, always have. Kudos to Coop for the thread on Wartenburg Syndrome, i now have a name that explains why I hold my pencil funny.