Botox for CRPS in ankle

[AKManda]

My husband was diagnosed with CRPS in July of 08.  Since then he has been in excruciating pain most of the time.  He is on a med list pretty long which he is prescribed by a pain management doc and he goes to physical therapy 2 - 3 times a week.  His PM recently told him about Botox for this and that it could relieve him of his pain for 3 - 6 months.  Previously she had told him about a neurostimulator, but my husband (and myself also) was a little reluctant to jump to that yet.  I've read a bit about this, and most of my findings are on muscle pain and botox with good outcomes, not nerve pain.  Is this something that is really used for nerve pain or will we just be causing more pain or a flare up?  He would give anything to be pain free for any amount of time, but I'm afraid to take the chance of him becoming incapacitated again.

[momofrsdkid]

Any news on the results of your husband's botox injections back in April?  I haven't visited this site since then and am still looking for ways to possibly help my son.  Anxious to hear!
-Momofrsdkid

[obsolete]

I have CRPS (since 08) and have had a great number of stellate ganglion blocks and biers blocks with limited success.  I have therapy daily, have tried almost all that has been suggested to me (except for the spinal implant) and will have my first botox injection tomorrow.  I am quite scared about the amount of pain the actual injection will cause, as previous experience has seen this usually 'fleeting' discomfort as unbearable unbearable pain.  I'd love to know how your hubby went and if the botox has helped him.

[AKManda]

Baseball2005, I also forgot to mention that physical therapy gave my husband a TENS unit, which I believe is a neurostimilator.  It's worn on the outside of his ankle, but works similarly to a neurostimulator that would be implanted.  He loves it and is so happy to have it.  I don't know how I could have forgotten to mention that to you.
Also, my husband had his botox injection yesterday.  We are just waiting to see how it works for him.  The doc said it could take up to 2 wks for him to feel pain relief from it.
We'll see!  Hope you are getting some pain relief.

[bev62]

I just went last week to be evaluated to see if Botox my help me.  I have suffered from chronic pain in my neck, shoulders and headaches, since I had a two level cervical fusion two years ago.  My pain doctor has tried everything and nothing has helped.  So he suggested we look into it.  My pain is both nerve and muscle pain.  Workers comp has approved it, believe it or not.  I will let you know how it goes.  The doctor said that a small percent of his patients are worse afterwards, that kind of scared me. But at this point I have to try something.

[Tuckamore]

Thank you Momofrsdkid for sharing your knowledge and experience with us. It is very much appreciated as we all learn from one another.

Does the physician you spoke of do Botox? And I didn't understand if you son has tried it or not. Thanks again for the info.

And AKManda I am glad that your husband has decided to have the Botox. I will look forward to your updates.

[momofrsdkid]

I'm the Mom of a 19-year old who has endured severe chronic pain 24/7 since age 14 1/2.  Eventually diagnosed with RND (subset of RSD), which I think now is classified as CRPS-I, he (we) have tried almost everything except the most-invasive stuff.  His pain is in both knees.  His best results have come from physical therapy.  He does 2-3 hours of a specific program daily just to maintain function; it does not reduce the pain at all however.  We've tried acupuncture, biofeedback, gluten-free diet, anti-depressants, anti-convulsants, topamax, sleeping pills, etc., etc. - all to no avail except side effects from the meds.  There's definitely a circulatory issue associated with the condition which means that ice is a big NO.  Although it does provide some numbing at the time, it only aggravates the problem over the long run!  Look up a Dr. Rhodes in Corpus Christi Texas.  It's a non-invasive procedure that he offers with no side effects, and he's had a lot of success treating various severe pain issues.  We are in the midst of using his method and it's reduced our son's daily nausea by at least 50% and allows him to fall asleep faster and stay asleep for longer stretches.  (He actually slept five hours all the way through one night and he hasn't done that since he was a freshman in high school!)  No pain reduction yet, however.  Unfortunately, regardless of the method tried, our son seems to always fall in the smaller percentage group that experiences absolutely no benefit.  I'll be anxious to hear if the Botox treatments do anything for your husband.  I'm always looking for new treatments since hope is all I can offer my son at this point.

[AKManda]

My husband does plan to have it done, he has an appointment next week, and I will let the forum know how it works out.  We decided to go with it because it seems fairly non-invasive (compared to a neurostimulator or pain pump) and his doctor seems pretty optimistic about it.  We feel our pros and cons are about 50 - 50.
I have just read so many small blogs here and there talking about how it doesn't really work for nerve pain and only muscle spasms that I decided to try and reach out for more information directly related to our situation. If it's not really meant for this type of pain then it's just not worth the possibility of more pain.  
Anyhow, I will keep searching and keep posting.  
Thanks!

[AKManda]

  I meant to say that he wears the lidoderm patches for 12 hours on and 12 (not 2) hours off.  Sorry about that.

[AKManda]

We have not had any injections as of yet.  He has had several nerve blocks though.  He had them right at the beginning of his pain when the docs were trying to figure out what was going on.  They did help, but only temporarily, like a few hours.  We haven't tried accupuncture or accupressure, but we are in the process of researching it and finding a clinic for it.  He does use the lidoderm patches and they help to relieve some discomfort.  He wears them for 12 hours on and 2 hours off.  He also uses A LOT of ice.  The ice dulls the pain and relieves some discomfort also.  I think he probably uses ice more than anything else.  We always have a re-usable ice pack of some sort with us.  Most recently he found a large gel freezable ice pack that stays very flexible and comes with a soft cover and velcros around his ankle.  He says it's the best yet.  We found it at Wal-Mart.  I do think that the physical therapy has helped.  Not too long ago he wasn't able to wear an ankle wrap of any sort because it hurt so bad, but just the other day he decided to try again and it was like a miracle!  He was able to put it on and wear it almost the whole day, and it was a pretty bulky lace up ankle brace.  I don't know if you have trouble with it at night but he does.  It flops around and it keeps him awake because it hurts from being in an uncomfortable position.  He was able to get a night guard sort of brace for that.  It's kind of a hard plastic brace that holds his foot in place without hardly touching the ankle.  It's hard on the bottom and up the back of his leg about 10 inches or so.  Then the front and top of his foot are just straps.  That helped a lot.  So that's all I can think of right at the moment, but if you have any other questions feel free to ask, also if you find anything that works particularly well for you, please let me know.  Thanks and stay positive!  

[Tuckamore]

Hello AKManda,

I am so sorry to hear about your husbands pain. But I am glad that you found us at MedHelp.

We have been getting more and more questions regarding Botox for pain in the last several months. I think it is gaining in popularity and hopefully success. You may want to check our archives. And though there has been a lot of questions on the procedure I do not recall anyone coming back to this site to let us know if it was successful.

When presented with a new treatment I always research it and weight the pros and cons. I make the best educated decision I can based on the information I have gathered. If I have nothing major to lose than I always try it. I am willing to do whatever it take to decrease my pain and increase my functioning level as long as it will not make me worse. Though I can't speak for others I do think that's how most chronic pain sufferers make their decisions on procedures/treatments.

Others will post with their comments and suggestions. I do hope that if your husband decides to have the Botox you will let us know how this works for him. He is blessed to have such a supportive and caring wife. Best of luck to you.

[baseball2005]

Hi AKmanda,

I am very sorry to hear about you husband's RSD(CRPS).  Has physical therapry helped his  CRPS?  Have you tried a cadual injection, sympathetic nerve block, acupuncture, and lidodem patches.  If so what has helped and what has not helped your husband's CRPS?  Has the CRPS spread to other parts of his body?  I was just dxed with RSD(CRPS) in my left foot 4/8/09.  Any information you can provide on what has or not helped your husband would be helpful to me. Thanks.  and I wish you both good luck