Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 11-12-2006, 07:14 PM #1
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Default BOTOX shots - what to expect after....

HI - I am new to the site - but not new to pain.

Wondering how any of you have done with Botox shots for spasms? I am a stay at home mama with a 22lb 9 month old - LOL! lets just say it ain't easy carrying her around - hee hee!

What can I expect from the shots? do I need to ice down after? and does it hurt or flair up your pain like a nerve block?

Thanks so much for your input - I am getting them done either this Tuesday or Thursday!
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Old 11-12-2006, 07:34 PM #2
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I had botox done on both sides about 3.5 weeks ago. My experience is that it was not as bad as the nerve block, but I still had to take pain meds...especially to sleep. I didn't ice either time, but I also have two little kids (1 and 3) so it was just too much bother. My 1 yo is 26 lbs, and my 3yo is 35...so I totally understand!!

I also came to this board looking for poeple with experience with Botox. I would really like to hear how it goes for you- I hope you come back to tell.

Unfortunately they haven't done much for me .... : (

My neurologist said he has seen it take as a long as a month to kick in....so I have another few days before I give up.

I am interested to know, did you find the TOS problem came up for you during pregnancy and/or nursing? I think mine is partially due to the relaxing of connective tissue that happens during pregnancy. I understand now that you don't get back to normal until you quit nursing.

Keep us posted,
Johanna
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Old 11-12-2006, 07:37 PM #3
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Thanks for hte quick reply - I was typing to you on your other post the same time you were typing on this one!

I am for sure going to let you know how it goes for me. My muscles are really really bad - since Aug. 2000 (car wreck). It didn't get worse during pregnancy - I think it has been worse after having to carry and hold her.

the older she gets the better it will be though - especially once she can run around! I would rather chase her and lose weight - LOL! than carry her.

Thanks again! and I know about the "bother" aspect of trying to get better - the shots the appt.s etc. Have you thought about trying it again in 3 months? did you get a lot of injections? and did you feel strange after in any way - and can I take my baby to the appt.? and carry her after 0r are you supposed to take it easy ..... ? and how many days after was your pain worse? sorry for so many questions!!!
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Old 11-12-2006, 07:43 PM #4
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I don't know yet what I am going to do...I go back to the neuro on Dec 4...

Truthfully the nerve block didn't do a whole lot for me either, so I wasn't expecting too much from the botox, but i knew I was going to try it before surgery, so I went ahead. All the muscles that he said it would relax are still wound up like rubber bands. I started seeing the chiro 3x per week since, and I am also going to start working with a hellerwork practioner. I have been really trying to stretch and modify my activities...but it is pretty hard not to pick up a baby...the little one was only 6 mo when this happened. I do work, so they are in daycare during the day, but I am on the computer most of the day at work, and that is really hard, too....I do not knwo what the future holds for me, but I don;t see a good option right now. Even if I could quite my job, I sure couldn't manage to stay home with the kids all day.

Did your doc tell you the botox would make it better, or just that it would make the pain go away for a while?

Johanna
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Old 11-12-2006, 07:45 PM #5
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PS, I wish you the best of luck...and hope that you have better success than me!!!
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Old 11-12-2006, 08:28 PM #6
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oh, and as for whther to take the baby to your appt...I did mone under anestesia- so I couldn't even drive myself home after the appt let alone take care of a baby. I am a big fat scardy cat when it comes to needles.

In general, though, I would expect it to be similar or better to your nerve block experience...that's how it was for me.

and once again- best of luck to you.

Johanna
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Old 11-12-2006, 08:55 PM #7
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Johanna -

I have read that the first try with the botox the Dr. uses is a small amount b/c they like to use the smallest amount possible. If it doesn't work well or enough relief then they like to try again in 3 months with a stronger does of botox. So, I know what its like to flair your pain up after things have calmed down - but maybe ---- you could try it again with a stronger dose? I plan to try it every 3 months for a year.

I can tell you that typing on a computer makes me SOOOOOOO much worse. OH the muscles are soooooo tight and burning!! and puff all up - yuck! I am feeling for you working on computer all day - I used to have that type of job - and then quit - opened a tanning salon - sold it after 2 yrs. and now stay at home with baby. I will keep ya posted.

Were you able to care for the kids OK the day after or so? and would you say you were a little better with pain in a few days? (the pain that the shots flaired up).

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Old 11-13-2006, 12:01 AM #8
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Conster-
I was able to function...and I managed to get the kids in to daycare...but that was about all I tried to do in the first three days afterm. I find that lifting them makes my neck and traps burn way too much. Of course, I have two and they are both squirmy. These days I change the little on e on the floor, and have been considering moving her to a regular bed instead of the crib just to limit the number of times I have to lift her in a day. (We have bunks waiting for them where the bottom bed is actually on the floor) Again, though, it was all a little better than when I had the nerve block. I was seeing stars after that.

Hopefully with one you can manage to just let her hang out with you on the floor all day...that is the only was I can do it.


My doctor didn't say anything about starting with a small dose. It will be interesting to see what he has to say when I go back. I hope that's the case and there is still hope for me. I am lucky that my insurance covers the procedure, but I think (i could be wrong about this) the doctor i have chosen is the one who originally developed the botox process for TOS...and so he is rather in demand and does not participate in any insurance.

As for work...well my Dragon naturallyspeaking software is ordered but not arrived yet, and I am also getting a second monitor so I can reduce the amount of mousing i do and spread out my windows a bit. I hope that helps. If it doesn't I am not at all sure what i will do long term. It is all very weird to have to think about since I always figured I would stay at my current job forever....

Though I would love to stay home with my kids...I don't envy you having to do that each day when you are in pain. It is TOUGH...I can't do a whole day with both of mine right now. They just need so much. I am lucky to also have an older one (14) who can be very helpful. Of course, being 14, she can also be exceptionally NOT helpful, too : )

ah well I am rambling. I have had so many thoughts running through my head. It was only late september when my neuro impressed upon me that though he could make me feel better, I would probably never really be 100% again. I wasn't really ready to hear that at 33...and I am really struggling with it. I mean, I know it isn't the end of the world....but not being able to hold and cuddle your babies is pretty hard...and coming home from work hurting and being grouchy with your whole family because of it is hard. I really have to find a way to come to an equlibrium.

I hope that your procedure goes well and that you can manage with your baby. If it were me and it was possible, I would get some help...at least some backup help that you can call if you get stuck. Nothing is worse than counting on being able to do it and then finding you can't.

talk to you again soon,
Johanna
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Old 11-13-2006, 09:15 AM #9
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It's so nice to find someone who understands! I am 36yrs. old and have been in this pain since 2000. I know I will never be 100% but I keep chasing it anyway! My two nerve blocks really helped but now my muscles - boy..... I kinda feel like I have a noose below my adams apple but around my entire neck and it tightens up like a collar its not a great feeling..... and also my left ear and jaw down my neck to my shoulder boy oh boy........ that is tight and burns.

From what I have read the botox should be helpful. I have looked for a dr. to do this treatment for over 2 yrs. We just moved from S. Florida to Texas so I don't know anyone here for help - and my husband travels for business constantly - its awful. I finally found a sitter for this coming saturday - (get botox on thursday) so I am hoping I feel like doign something come saturday night. Maybe if she works out she can help me after she gets out of school here and there while my husband is gone - maybe I can run out and get groceries while she sits for me.

Anyway - sorry for the ramble. I was goign to tell you - that it takes about 90 days to get approval for my insurance for botox - I didn't want to wait to start - so I am paying out of pocket for it and hope to get reimbursed once its approved - but...... if I don't .... my Dr. is only charging me $400 for an entire bottle - and that should work for a few times - and you can only get the injections every 3 months. So maybe it will be $800 a yr. if my insurance doesn't cover.. but if it works its worth it.

I would rather get these than the never blocks (sounds that way anyway). that would be nice wouldn't it? a way to control our pain and only go every 3 months???? wow.... what a dream. I am sure though that if we do things that aggravate our shoulder/neck muscles it will flair up.
I have two labs that SHED bails of hair every day - this is my biggest problem - and I have to vacuum - every day sometimes twice a day b/c daughter is on ground - etc. and this is the WORST thing for me. I truly should try to find my dogs a new home but we have had them for 6 yrs. its hard.
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Old 11-13-2006, 10:56 AM #10
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Default posture brace

Also...... Johanna - you should loook into a posture correction brace - really really helps with typing

www.reliefmart.com
is where I got mine.

xxooo Conster
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