Hi I am new to this site. Really appreciate the time people take to listen and learn. Spending most of the am looking for something on Botox. I developed Rsd after being bitten by a dog in hand infection following. Diagnosed 8/07. After 27 Stellate Ganglion Blocks, 2 RF Blocks(all gave me short term relief) Dr. convinced I had nerve entrapment in scar tissue from bite/infection triggering my RSD. Sent to Surgeon who performed 2 more blocks, w/general anesthesia. Repaired 3 nerve damaged spots. Hospitalised with a marcaine drip that ran for a week to keep me absolutely pain free. When sutures removed marcaine removed. Hand/arm/shoulder went into remission. I am however left w/ severe spasms/intermittent and unpredictable. He fears that my RSD could return if left untreated. I am having swelling and sweating returning. But a lot of the other RSD pain is still at bay. I am so confused as what to do. My dr. is a nationally known doc and I believe he knows what he is doing. He carefully and methodically thought out a plan for my surgery to have the best outcome. ( i have the type CRPS that is caused by a definitive injury to nerve...i can never remember which one it is)Although I feel need to know more.

I'm glad to hear you have some good Drs. Hopefully you will be able to keep the pain into remission.

I still have spasms but am pain free. I have been pretty much painfree for months. Knock on Wood. LOL

I don't know anything about Botox but I did want to say hi and welcome you to the forum.

There will be others come on and help you soon.

Ada

Hi and welcome,

I recently ran across something that you might want to take a look at. It is a dystonia case report that you can access by googling: clinical improvement of secondary focal limb dystonia in neurodegenerative disease following a five-day lidocain infusion.

Also, I wanted to share the following in case it might be of help. I have a neighbor who has suffered from cervical dystonia (not RSD) for many years. Because of this her head turns constantly to the side. We have a mild hyperbaric chamber in our home, and I told her that she was welcome to try it if she had her doctor's approval. Amazingly, after only three treatments, she was able to turn and hold her head in a forward position. I would definitely recommend trying hyperbarics if at all possible.

Wishing you the very, very best,
Jeanne

Thank you for your response. How does one purchase a hyperbaric chamber or wher does one get to try this? I will definately google that site. You and previous person so nice. I have 3 weeks to do my research. So I am on it!

Wishing you and everyone here kind thoughts,
Debbie

Hi Debbie,

You would need to go to a free standing hyperbaric clinic as RSD is not an "approved" application, basically meaning that your insurance will likely be able to avoid paying for treatments. If you send me a private message indicating where you live, I will try to help you in your search.

Jeanne

Hi, Thank you for responding. How long have you had rsd? What helped you go into remission? Are your spasms without pain also? Hope not to many ?s for you. You are giving more hope when I need it!

fondly'
debbie

Hi Debbie--
I have RSD/CRPS in my abdomen (my CRPS is a result of trauma to my nerves during abdominal/pelvic surgery) and just had my 3rd set of Botox injections done yesterday.

For me, Botox has been a Godsend. My neurologist first suggested it October, when the diagnosis of CRPS came to his mind-- after I'd had had 2 unsucessful Lidiocaine/cortisone injections into my abdomen for "post op inscion pain" done by my Ob/gyn. Being that I was pretty miserable-- having "hot", burning, nerve pain and other CRPS symptoms, and not getting much relief from anything else (I am Neurontin for another neuro condition, which does help some with the CRPS pain, but has a lot of side effects at high doses), I was willing to try it. So, and this is what I would recommend to anyone thinking of Botox, before I had it done my neurologist had me "draw" on my tummy during where it hurt the most and "how" (as in little dots for stabbing pain, streak marks for radiating pain, etc); then take a few pictures of it and bring it with me to when I was having it done. Sounds kinda strange to draw on yourself, BUT, by marking and pin pointing the pain locations gave us the best places to do the injections, how much to use, etc. Anyway, I honestly wasnt expecting much from Botox, but, much to my suprise-- and delight, within a week my main was considerably better and I was able to walk around and do normal, life things easier and without as much pain. It didn't take things away completely-- but it was helpful.

My first set of injections lasted about 7-8 weeks; my 2nd set didnt work as well-- we weren't able to pin point and get the same spots we did the first set, but the effect it did have lasted about 8 weeks, and like I mentioned at first, I just had my 3rd set done yesterday. I *believe* we pin pointed the location much better and got closer to the sources this set (vs my 2nd set) and think I'll see similiar results as my first set. Botox are usually done every 2- 4 months-- depending on the person and location.

As for the exact procedure, basically its just a series of injections right underneath the skin. How many injections and how long the procedure takes just depends on the area--- because we do my abdomen, mine involve at least 20 injections and takes about an hour. HOWEVER, while, admittedly it is uncomfortable, its tolerable, and unlike a lot of medications, the side effects are few to none. I am usually in pain, uncomfortable, cranky and run a sligh fever for a few days. Each person is different, and it doesn;t work for everyone, but, if it does work for you, you'll begin to see results and experience some symptom relief withing a few days (my neuro says some of his patients notice a difference immediately..... ).....

I'd be happy to share my experience with it, and how my neuro explained to me how Botox works-- its mechanism of action, why, etc. It would also be neat to swap experiences and thoughts with some one who has CRPS due to a trauma/nerve injury...... PM me if you'd like to talk more.

Hope this helps a little

L2L

Ps-- if you do decide to try it, make sure you get a neurologist or pain specialist who has experience with it

Thank You every bit of info is usefull and very much appreciated. I do have a dr. that is very qualified. Fortunately all but 2 have been top notch. The PM doc I have had is awesome. From what I have read there are some people who have not been so lucky.

Thanks Soooo Much! Like your user name......I too!

RSD friend..........Debbie

Welcome,

If your CRPS is caused by a defined nerve injury, then it's CRPS type II (which I have, resulting from venipuncture nerve injury).

Following are abstracts of two recent research articles dealing with treatment of neuropathic pain with Botox:

(1) Ranoux et al, 2008, Annals of Neurology, "Botulinum toxin type A induces direct analgesic effects in chronic neuropathic pain"

OBJECTIVE: Botulinum toxin type A (BTX-A) has been reported to have analgesic effects independent of its action on muscle tone, possibly by acting on neurogenic inflammation. Such a mechanism may be involved in peripheral neuropathic pain. METHODS: A possible direct analgesic effect of BTX-A pain processing was investigated in 29 patients with focal painful neuropathies and mechanical allodynia using a randomized, double-blind, placebo-controlled design. Patients received a one-time intradermal administration of BTX-A (20-190 units) into the painful area. Outcome measures, evaluated at baseline, then at 4, 12, and 24 weeks, included average spontaneous pain intensity, quantified testing of thermal and mechanical perception and pain, allodynia to brushing (area, intensity), neuropathic symptoms, clinical global impression, and quality of life. RESULTS: BTX-A treatment, relative to placebo, was associated with persistent effects on spontaneous pain intensity from 2 weeks after the injection to 14 weeks. These effects correlated with the preservation of thermal sensation at baseline (p < 0.05). BTX also improved allodynia to brush and decreased pain thresholds to cold, without affecting perception thresholds. There were sustained improvements in the proportion of responders (number needed to treat for 50% pain relief: 3.03 at 12 weeks), neuropathic symptoms, and general activity. Most patients reported pain during the injections, but there were no further local or systemic side effects. INTERPRETATION: These results indicate for the first time that BTX-A may induce direct analgesic effects in patients with chronic neuropathic pain independent of its effects on muscle tone and suggest novel indications for BTX-A in analgesia.

(2) Yuan et al, 2009, Neurology, "Botulinum toxin for diabetic neuropathic pain"

BACKGROUND: Diabetic neuropathy is a common complication in diabetes, with patients typically experiencing diverse sensory symptoms including dysesthesias in the feet and usually accompanied by sleep disturbance. There is still no comprehensive understanding of the underlying biologic processes responsible for diabetic neuropathic pain. Thus, the current symptomatic therapy remains unsatisfactory. Recent experimental evidence suggests that botulinum toxin type A (BoNT/A) may not only inhibit the release of acetylcholine at the neuromuscular junctions, but also modulate afferent sensory fiber firing, thereby relieving neuropathic pain. METHODS: A double-blind crossover trial of intradermal BoNT/A for diabetic neuropathic pain in 18 patients was conducted to evaluate the effectiveness. RESULTS: We find significant reduction in visual analog scale (VAS) of pain by 0.83 +/- 1.11 at 1 week, 2.22 +/- 2.24 at 4 weeks, 2.33 +/- 2.56 at 8 weeks, and 2.53 +/- 2.48 at 12 weeks after injection in the BoNT/A group, as compared to the respective findings for a placebo group of 0.39 +/- 1.18, -0.11 +/- 2.04, 0.42 +/- 1.62, and 0.53 +/- 1.57 at the same timepoints (p < 0.05). Within the BoNT/A group, 44.4% of the participants experienced a reduction of VAS >/=3 within 3 months after injection, whereas there was no similar response in the placebo group. At the 4-week postinjection stage, improvement in sleep quality was measured using the Chinese version of the Pittsburgh Sleep Quality Index. CONCLUSIONS: This pilot study found that botulinum toxin type A significantly reduced diabetic neuropathic pain and transiently improved sleep quality. Further large-scaled study is warranted.

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Botox is the commercial preparation of Botulinum toxin type A produced now by Allergan Pharmaceuticals. Although well-known for cosmetic uses, Botox is also used for the treatment of various severe spastic muscle disorders, and has been for a long time. Botulinum toxins bind to neurons at neuromuscular junctions and block the release of neurotransmitters, effectively paralyzing muscles. Basically, it binds to nerves in a specific manner, preventing them from telling muscles to move. It's also the toxin responsible for the foodborne disease botulism, which results in an overall paralysis, and potentially death. However, if injected in small amounts into a target muscle, the toxin will paralyze that muscle. This can be advantageous for dystonias and other spastic muscle disorders where muscles move uncontrollably.

Potential medical uses of botulinum toxin in the future are numerous, and treatment of neuropathic pain by the toxin is fascinating. I'm assuming there are numerous additional funded projects in the works.

Ironically, I've worked in a research lab with botulinum toxins for many many years. Because it's so potent, I'm immunized against types A-E, and thus treatment of my CRPS by Botox would be useless. Guess I'm destined to have a lot of wrinkles as well when I get older.

It's a fascinating toxin.

Thanks so much Annie Poo,

This is great info. Iwas told by my surgeon that this has been used on nerve muscle disorders for quite a few years successfully.(before it was used for wrinkles) maybe he can fix my laughlines while I am there! Actually I love my laugh lines....I earned them I keeping them!

Wishing your Crps AWAY TOO!
DEBBIE