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.

Update: I will be going back to Boston to also get the median scalene muscles Botoxed. I only had the anterior done before. The reason being that The median are really hard to get to with the needle, and it does not provide as much relief as the anterior scalenes do when Botoxed. I am going to get them done to help with lingering pain toward the outside of the shoulders.

In addition to the botox I will be doing lots of PT that will primarily be the myofacial release to stretch and move scar tissue to a more comfortable place. Now that the botox has relaxed the anterior scalenes it feels a bit like the scar tissue along my sternum, clavicle, in center part of the lower ribs is pulling a bit.

My hands fall asleep at night, but they didn't the first week after the botox. Hopefully these additional shots will help with this.

I'm guessing that I will have to go back for more botox three months following these new shots for more botox. After that I may be able to lengthen the time between shots. Eventually, I may not need them Any more if the muscles atrophy enough. Or need them less frequently, like every 8 months or every year or so.

I am trying to talk a doctor here in Nebraska to get in on this botox as a treatment option, that way I don't have to keep flying to Boston. However, a quick cost benefit analysis tells me that flying to Boston is still less costly than not. I think I have spent nearly $10,000 on massages alone over the past ten years, and that was just to function. Never mind medicines, doctor appointments OTC creams, lotions, tests, er visits, loss of wages from missing work, loss of earning potential from not doing certain types of work ie. waitressing, varies devices to support my shoulders, keep my hands down at night, electric massaging devices, heating pads, braces, poor health from not exercising because I felt bad, etc., etc., etc.....you guys know.

I'm actually kinda wondering why botox along with intense pt isn't the first treatment plan for this stuff.

Great to hear the botox has been working. I remember reading somewhere that after a few injections, muscles stop responding to it. No idea if this is true though.

I would guess that such a response would depend on a combination of the dosage amount and the interval. But in any case, I'm sure @Eight's doctor who administers the botox can say more definitively.

I will continue to sing the praises of Dr. Donahue, as he truly gave me my life back. In 2011-2012, I had two rounds of Botox at MGH, followed by two rib resections and scalenectomies. Now more than two years later, the advantages to surgery for me have made a world a difference. I can't say enough great things about Dr. D, he is absolutely wonderful.

Yes. I remember that as well. I found that post as a deterrent to botox last fall. However, botox should weaken the muscle over time. The body shouldn't build an immunity to it, but even if it did, the muscle should still weaken from lack of use.

When I lean over like I am going to touch my toes, but grab my calves and pull my torso toward my legs, my spine pops or cracks like when a chiropractor adjusts me. It feels sooo good.

Tonight I sat outside and was able to put my hands behind my head and just relax like that for about five minutes before I felt some draining and tiredness on my hands.

One day I want to lay in the grass with my hands behind my head for an hour and watch the clouds.

Also, I started getting these funny sensations on my arms today, it tickled like a spider crawling on me or something. Today I figured out what it was. Hair from my head that has fallen out and landed on my arm. I kept looking for a bug or something on me. Haha, then I found hairs on me a couple of times.

I think it would be if more insurance would cover it. More docs seem to be doing it than were a few years ago.

Hello, my friends! So, I am back in Boston, and thought I would give an update. It is 6 1/2 weeks since I had the anterior scalenes Botoxed. Two days ago I got the middle scalenes Botoxed. It can take up to four weeks for the full result. No such dramatic results as the first go round, but I did wake up early and feeling well rested and energetic yesterday. Haven't woke up feeling like that in at least a few years. Spent the day site seeing And feeling good. More tired today and no significant change.

Dr. Donahue wants me to do botox and Pt to see if that will help, but if it doesn't I will need surgery.

First botox shot seemed to have stopped working last night. Called and was told it isn't supposed to just stop like that, may just be a flare. Anyway, I'm ready to have surgery....

Dr. Donahue is looking through my chart again and then will decide if he will do my surgery. I also got a copy of my nerve conduction tests from when I was a baby because I had a brachial plexus injury in the right side from being born. I got all better, except I hold pencils kinda funny, that is the only remaining possible sign. I did just read it today and it said that my c5 and c6 nerve roots were damaged outside of the spine, I don't really know if this matters or not. Anyway, I've never noticed any problems, lol, not that I would know what I was supposed to feel like if that is the way I had always felt....This birth injury is part of the reason that Dr. Sanders decided to cancel the surgeries I had scheduled with them last February, which means there is a tendency to cherry pick since I am a "difficult" case.

For one whole week when I had both the anterior and median scalenes Botoxed I felt really good. I had energy, like someone who is normal must feel like. It was nice. :). If Dr. Donahue won't do my surgery, he is willing to continue my botox indefinitely it seems, so becoming a homeless person in Boston is still an option. :)

On a happy note, my boyfriend has agreed to come with me for my surgeries and help pay part of the expenses!!! I was pretty sure he would, but just for shits and giggles I sent a group text message earlier today to my parents, brother, and sister to see if any of them would come with me for my first surgery....none of them responded at all.

Nurse Julie said she would call a social worker if I didn't have anyone to come with me so than arrangements could be made. It's a relief to know that's an option if needed.

Surgery is scheduled!

congratulations! That must feel good!

Well, it is the third time I've had a rib resection scheduled. Once with a doctor in town that I decided not to go with. Then once with Annest/Sanders who decided they weren't going to do it nine days beforehand after plane tickets had been bought and all arrangements had been made.....

With Dr. Donahue? Apparently people say he's used to complicated cases, so you shouldn't fear getting dropped then.

Eight - This was my experience with botox on the side that I had severe nTOS (positive EMG/NCV, obvious muscle atrophy, etc.). The day it wore off it was like going from 0 to 100 in 10 seconds flat. For three glorious weeks, I had absolutely no symptoms and then it came back with a vengeance. My doctor also told me that it's not supposed to wear off like that. I decided to do surgery and glad I did as I am still symptom free nearly 10 years later.

Good luck with your upcoming surgery!

Okay, so I might have found a doctor 50 miles from me that does the botox. He is a pain specialist. My arm started going cold and I went to the ER in that city, well the vascular surgeon in the ER told me not to have the surgery. Hey told me he would send some emails and his office would call me Monday morning. Well, the next day he called me with the name of a guy, Dr. Peter Piperis whose website says that he does "scalene block with fluoroscope". I will call first thing Monday morning.

In that case I will probably put off my surgery, for at lest one year, and hopefully indefinitely.

Have an appointment Friday. We will see....

Hi there Glad ur seeing some light at end of tunnel.
Was wondering if u got botox for tos or pec minor? Do u know if Dr. D. Treats or Dx peck minor syndrome?

Yes, both I believe. He made a special note that they weren't going to botox the pec minor because I had the pec minor release done in December 2013.

I found. Doctor here that does botox, but only as a diagnosis. They are going to do bilateral anterior scale botox at 90 days from the first shots. I still have surgery scheduled. Surgery is sort of dependent on my finances at this point.

:confused:[QUOTE=Eight;1082919]Yes, both I believe. He made a special note that they weren't going to botox the pec minor because I had the pec minor release done in December 2013.

I found. Doctor here that does botox, but only as a diagnosis. They are going to do bilateral anterior scale botox at 90 days from the first shots. I still have surgery scheduled. Surgery is sort of dependent on my finances at this point.[/QUOTE

So, did Dr Donahue do your Pec minor release? Do most drs use Botox just for dx vs. maintenance? What about PT for TOS?
I saw a Dr Lee a Hand/BP nerve Ortho Specialist at mgh recently & told him what Dr Sanders says that 75% of people who have tos also have Pec minor syndrome.
Dr Lee said that's bunch of bull!!!! He only did this surgery on one pt.
Who do u believe?
Is all this info. On google just to get your business, makes u wonder!
Thanks tor the info.

Let's start with I have bilateral TOS from a car accident in 2003. I also had right side Erbs Palsy at birth which resolved itself by age three months. I think I also may have had Klumpkes Palsy.

Dr. Annest and Dr. Sanders did my Pec Minor Release. I scheduled the pec minor release surgery, and then went to Denver for both this surgery and to meet Dr. Sanders, Dr. Annest, and Dr. Machenic for the first time. I had bilateral pec minor syndrome and I have bilateral TOS. Dr. Sanders was the first one to see me, and after examining me and giving me first a pec minor block with lidocaine on the left side and then an anterior lidocaine block on the left side diagnosed me with the fore mentioned.

Dr. Sanders told me that I needed both the pec minor release and the first rib resection and scalenectomy bilateral. He offered me the choice of waiting and having it all done at once in February, which was the next available opening, or to have the Pec Minor Release as scheduled in two days when I was there and coming back in February to have the first rib resection and scalenectomy done then. I chose to have the pec minor release then and the rest in February.

I did not recover well from the pec minor release. This was done in December 2013. It was not that the surgery itself had any problems, it was just that my recovery took much much longer than expected. Also, I forgot to tell them that I had Erbs Palsy at birth. This resolved itself, but this shows up on my nerve conduction tests, and it cannot be determined if this is from the current injury or my injury at birth. These two reasons combined are the reasons that Dr. Sanders and Dr. Annest cancelled my other surgeries. Dr. Sanders called me in April because I had called the office requesting the surgeries again, so I guess he may have been reconsidering my surgeries, but by then I was scheduled for botox, CAT scan, office visit with Dr. Donahue at MGH, so I didn't push the issue.

To answer your question about PT, I have done PT on and off for ten years with the primary focus being my poor posture. The pec minor release fixed my poor posture instantly. I still have issues with head forward position, but my shoulders are literally 3-4 inches back from where they once were. This was amazing! However, I had all kinds of neck pain, because it was a HUGE change in my anatomy. For ten years I felt like a complete failure in PT working on exercises to strengthen muscles, but not until I had the pec minor release scheduled did anybody do anything to help relax the pec minor. I had a PT dry needle my pec minor within a month or two of the surgery, painful as hell but it did give me some symptom relief.

My big question for you Rhonda, is why did you go to MGH and not see Dr. Donahue, lol?

Okay, so to give an update on my journey to the promised land....

My first bilateral anterior scalene botox was done on May 5. On June 19, I had bilateral median scalene botox. Felt pretty awesome for about ten days, kinda overdid things, had a flare, and it felt like the anterior shots went away. Scheduled surgery in September on left side. Found a doctor close to where I live that does anterior and median scalene botox as a diagnostic procedure only. Talked him into doing the anterior scalene botox, this is scheduled in the middle of August. He said if that botox goes well he will do the middle scalenes four weeks later. He is going to get my records from Dr. Donahue in the meantime.

My original plan was to get 3-4 rounds of botox, and do PT during that time to see if it will rid me if symptoms so much so as that I do not need surgery. When I felt as though the first shots wore off so quickly, I decided to just have surgery.

Today is 76 days past the first botox shots, aka the day I felt my fingertips, lol. Botox is supposed to last between 90-180 days, with the duration of effectiveness increasing over time.

At this time, my left anterior scalene is tight again. The left side is my bad side. I can feel it, and it is very very hard. The right side is not as bad. I can feel its hardness when I push in, but it does not stick out and push into my clavicle like the left side. In case anybody is wondering, I feel the anterior scalene by looking away from the side that I am trying to feel while siting or standing. So to feel the left anterior scalene, I turn my head to the right, so much so as to look over my right shoulder.

At this time, I am giving consideration to continuing the botox shots and postponing surgery. At this point, I am hopeful that I might be able to not have surgery on the right side, but think I almost certainly will need it on the left.

Postponing the surgery is primarily due my finances and not getting fired from my job due to missing too much work as I only have 7 weeks of FMLA left, and was told I will be off work for three months following the surgery. Being a single mom, not working for so long isn't really an option. I have applied for disability, and if I am approved, I will happily move forward with the surgery as scheduled. Hopefully, in the meantime I do not have an artery rupture, because a stroke or a hand that doesn't work won't help my finances either. God bless the Social Security Disability system!

Okay, well I put in a request for three months off work to have surgery. We will see how well that goes over. Yikes!

pec minor release
 

Dr. Donahue often does the pec minor with the first rib resection and scalenectomy is my understanding. Did you not also have this done? Six months isn't that far out, I think it really takes a year to return to "normal". What are your symptoms? I got "costrochondritis" basically just from all the shifting around from the pec minor and then the botox. How are you worse? Also, what is new vs. old? I have surgery coming up, very soon....

I frickin' diagnosed myself with pec minor syndrome off of info from these boards and the internet. I sent my records to Dr. sanders and scheduled a bilateral pec minor release. I went and then was officially diagnosed by Dr. sanders, but again, this is after I had already scheduled the surgery...two days before in fact. I flew to Denver for this surgery.

The St. Nicholas House Hotel is across from the hospital and is for hospital guests at $58.00 per night. If you fly in, you will probably need to rent a car, especially because Dr. sanders and Dr. mechanics offices are not located by the hospital, not in walking distance. You could probably take a cab, but the airport is away from the hotel/hospital.

Oh, they were both out of the office for the past three weeks. I would try again. :)

Update: I got a second round of botox on 9/2/2014 on the right middle and anterior scalene. This time it took a full four weeks to kick in, not four hours. I just wanted to share this so that nobody gets discouraged if it doesn't work right away.

I had surgery 9/3/2014 with Dr. Donahue for scalenectomy and first rib resection on the left side. There was scar tissue on the artery, brachial plexus and T1 nerve root that was all removed as well.

I've been doing well, but overdid things one day like an idiot because I got some water in my basement. My whole hand went numb, and face started twitching. The hand is better, but the face still had issues.

Update: botox injections received again on right side. Botoxed side had more sensitivity than surgical side, but surgical side has less tightness in the traps.

I was told it would be 1-3 years before the nerves grow back and heal. It took 10-11 years to get this bad.

Right side aka former Erb's Palsy side is scheduled for surgery in February.

Facial Twitching is likely hemifacial twitching at this point and unrelated to the TOS, will look into this and rotator cuff issues more after TOS surgery.

11 days until my next surgery!!!!

Hello, everyone! Turning this thread into my personal blog I guess. When I was deciding on a doctor/treatment, I was following people's posts on here, but their posts were all spread out. Hopefully, keeping some of my updates here will be helpful.

Okay, Thursday was 4 weeks post my right side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 7 months post surgery on my left side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 15 months post surgery for a bilateral pec minor release. (Drs. Annest/Sanders).

So my right side surgery went smoothly. I have numbness a the end of all of my fingertips and the 4th and 5th digits. It is slowly getting better since surgery. However, being able to compare the two sides has been an great thing, because I can tell that the left side usually feels better than the right.

My left side is more cordinated than my right side at this point with all gross motor skill. I am right handed.

I currently that whole, "they took a bone saw to me" feeling in the rib (which a lidocaine patch to the back seems to help alot - along with hydrocodone and advil). I know from my previous surgery that this feeling really starts to go away at 6-8 weeks when the rib bone has capped itself off. I was also given Soma, by the neurologist, I think mostly so that I would sleep and recover.

However, nerve pain is definately going to be a lingering problem for me. Nerves regenerate at 1 inch per month. I am guessing that it will take about 3 years for my nerves to regenerate and I won't have the nerve pain anymore. My left side is already less painful than my right as far as nerve pain goes, but it is still pretty intense.

I quit taking gabapentin because I gained 60 pounds on it (stopped this sometime in November 2014 and have already lost 15 pounds just laying around, so that's happy). Tried Keppra, but it made me dizzy, now trying Tegrital.

I also take r-lipoic acid, b-12, multivitamin and use a TENS Unit with gloves every day for at least 20 minutes.

Typing sucks - my fingers are all confused - 4th digit is about two letters behind all the other fingers on both hands.