Hi all,

Thought it might be helpful to re-cap my experiences with Botox this morning and moving forward, in hopes of assisting other people in a similar position.

I've been dealing with the following symptoms since Feb. 2010, probably due to a work-related repeated strain as I used to work in a mental health facility with restraints.

• When hands/arms are in a raised position, hands become pale and appear to have lack of blood flow
• Weakness in grip and strength (I've lost 2/3 on left, 1/2 on right side)
• Aching in hands and arms (feel “limp”)
• chest pain (in my sternum)
• elbow pain on both sides (more often left side) in the notch between the two bones on the inside of the elbow
• “odd” sensations in pinky and ring fingers on my left side (burning, tingling)
• Pain where collarbone meets shoulder
• Tension and tightness in neck and shoulders (frequent)
• Swelling of hands – veins “pop” out (a few times a day)
• Overall loss of weight and sometimes lack of appetite


I've had x-rays, an EMG, nerve conduction study, a CT scan, and a vascular study. The results have been mixed and inconclusive, so Dr. Donahue at MGH in Boston suggested Botox injections.

I received four injections in total - two on each side: one in scalene and one in pectoral minor muscles.

The preparation took longer than the actual injections. The whole procedure from start to finish was about an hour. There was no preparation I had to do prior to the appointment. Firstly, they used the ultrasound machine to take some pictures and video clips of the muscle groups. Then the doctor marked the injection sites with permanent marker. From there, they used some really strong alcohol sterilizer around the entire area. It was quite potent and left an orange-brown film all over my upper chest and neck area. Then they draped some cloths over the extra areas (such as my face). I received lidocaine injections into each area. I would not say this was painful, but certainly uncomfortable. The doctor informed me of each injection and there was a burning and pinching sensation each time. While the lidocaine (numbing) kicked in, they reviewed the pictures from the ultrasound machine again. The needles for the actual Botox looked quite large (a few inches), but I shut my eyes for nearly all of the procedure. Each Botox injection took about 2-3 minutes as the doctor used the ultrasound photos to guide the needle. I could feel the needle going into my muscle, quite deep. Again, not necessarily painful, but uncomfortable. The pectoral muscle injections were more so than the scalene ones. From there, they cleaned things up and I could change into my clothing again.

Apparently I will not have any idea if things will improve until two weeks. From there, Botox usually lasts for about 90 days, if I see any improvement. The doctor suggested keeping a log of symptoms and calling the referring doctor, Dr. Donahue, with any updates or changes.

The doctor did say that he noticed my nerves are intertwined with my muscles, rather than creating "tunnels" for my nerves. He said this is not necessarily the cause of my symptoms but something he would pass along.

I could have gone into the office today, but my pectoral areas are quite sore and it would have made phone usage difficult. Otherwise, I have been approved for 12 more Botox sessions by my insurance company, so we'll see.

On another note, for those of you in this area, I highly recommend Catherine Wee, OT at Spaulding Rehab. I saw her back in the spring for 5-6 weeks for PT (but it was an unsuccessful intervention), and she has followed up with me over the phone twice since then. She left me a voicemail yesterday to check in about how I'm doing, even though I have not seen her since May. She's just wonderful like that.


Alright, well, I think I've gone on for long enough, and my hands are tired today. I hope this information about the Botox and the associated procedures are helpful to someone here.

Take care, everyone.

So if the botox is successful, and given it can only be done for so many sessions before losing effectiveness - will you elect to do the surgery(ies) ?
Or is this as a hope you can break the spasm cycle? Or? Just curious as to what the strategy here is, short, medium, and long term.

I'm waiting with bated breath just to see if it works!

Thanks for sharing, ladylaura418. I hope you have a good result!

Very interested in results.

I actually had my botox injections approved at MGH, but decided to put it off since symptoms have dimished substantially. Figure I'll save this bullet for when I need it.

Good luck

KY

Thanks, everyone.

A day after the injections and most of the soreness has diminished. I do have some bruising at the injection sites and some stiffness.

Fingers crossed.

One of the other members said that he found the botox worked better if got a massage a couple days afterwards.

ladylaura - Yes, it will take 1-2 weeks to see any effect from the shots. Glad to see that your insurance covers the shots. Mine doesn't so I have to pay out-of-pocket for the shots. I only got about a month of complete relief from the symptoms. By 2 months, it was completely gone. But I think each person is different in how they process the medication.

Chroma - great idea. I was actually thinking the other day about getting a massage and I was not sure if I should. I will schedule one for Monday.

Sheri - I'm glad to hear you have seen positive effects. What sort of symptoms did you notice relief from? Have you had many shots since the first one? What is your treatment plan long term?


Have a great weekend, everyone. Thank you for your support.

I'm in the same boat with having to pay out-of-pocket. Do you mind sharing how much you paid and where you had them done?

LadyLaura - I had the 3rd shot in August. I could have had the 4th shot earlier this month but I'm waiting to see if my doctor is successful getting the insurance company to cover the shot. Due to pain levels, I am regretting the decision to postpone the shot. Long-term treatment - I'm beginning to consider surgery. My other side was operated on about 8 years ago and is so far doing great but I'm still hesitant to go the surgery route.