Is anyone familiar with low dose naltextrone for RX..also Botox in a lumbar block?
 

Hi all,
I am wondering if anyone is familiar with low dose naltrexone treatment for pain control...Naltrexone is an anti-opiod but apparently in a very low dose it has proven to help with pain..

Does anyone one have experience of having botox included with the mix for a sympathetic lumbar block...(along with the lidocain, etc) in the injection?

These two treatments have been discussed with me, but I am not familiar with the added botox and the low dose naltrexone, their effect, side affects, etc.

These unknowns are scary...:(

Thanks for any information or advice!
Hope4thebest xox

Hi. Per my pain dr. at USC, the FDA has yet to approve ANY potentiated opioid meds, except for a couple of combo pills used in opioid withdrawl, but the % compositions are not what you would want for maximum analgesia, even though it's possible to run narrowly tailored PubMed searches and pull up over 2,000 possible hits. Obviously people are working very hard in this area, but outside of the studies, the only parients who have apparently benefited thus far are those with pumps, where their doctors have quite a bit of freedom in adjusting the exact mix of the broth in which they are then stewed.

As far has Botox in blocks are concerned, I can't recall hearing anything offhand (which desn't mean much) but would be concerned by one issue in particular: what happens if the toxin inadvertantly enters an organ or tissue that you don't want to put into suspended animation for 4 months or so? E.g., liver, heart, etc. Potentially very bad news.

Mike

Bilateral sympathetic block with clonodine????
 

Hi Mike,
This Thurday, I am having a lumbar block with possibly some clonodine in it ..this will be my first time with clonodine....my 7th lumbar block...
they also might want to do a bilateral block (both sides..) yikes....
I've never had a block done on both sides, only my left.....
I'm entering into uncharted waters...I need some water wings
Hope4thebest

Good luck --- H4TB --- you are in our thoughts and prayers always. I take clonodine every day for my blood pressure and my RSD, I'm pretty sure its a beta blocker. I never had HBP before all this...in addition clonodine is used for RSD also by some docs. XOXOX Sandy

Ldn
 

Hi I have been on LDN for months. When I first came down with the frozen shoulder that started this I was put onit. I started very low. Compounded by McGuff pharmacy in California. It needs to be done by one of the pharmacies listed on the lowdosenaltrexone.org site. I have mine done in a liquid to titrate. It took 50% of my pain away over night and that is when I was systemic pain. All I can say is it has helps calm this. The Lyme disease community and autism/fibro/MS people all use it .

naltrexone
 

Hi sk8ter: My daughter has RSD. She lives in OC. I do all the research as she is in a complete state of fear right now. I had taken her to a wellness doctor to try something different than nerve blocks and ketamine (they don't seem to work very well for her, and the pain specialists are trying very hard to insert an SCS already). He had prescribed naltrexone in pill form and also wanted to do DMSO IV's. She had started taking the naltrexone. Unfortunately, the pain specialists convinced her this doctor is a quack and now she is scared and won't take or try anything coming from him. I do believe that the naltrexone was helping her but she didn't stay on it long enough. I need to be able to convince her to try it again for a longer period of time but I need support and apparently you live in OC also, CA. How come nobody is talking about DMSO?????? Can you explain to me what you mean by you have it done in a liquid to titrate? Maybe that would work better for her. Who is your doctor who prescribed it? Can you tell me? Is it allowed on this site? I am new here, but will try anything to help my daughter who has a 5 months old baby (was diagnosed during pregnancy)

Hi sk8ter and elmodo and NT friends,
Thanks for your info and experiences regardng LDN (lowdosenaltrexone).
It has been suggested to me by a university hospital pain center and has been authorized for a 6 week dose by the insurance.
I visited a LDN website with several testimonials of success...particularly for fibromyalgia. The dose is very minimal from the dose of its intended use as an anti-opioid.

Sk8ter!
I am encouraged to read that you have experiened a 50 % reduction in pain! I am wondering if there are any side effects associated with it, or any change in mental processes..I have a very detailed job and I have to be able to think straight!!! I'm curious as to how yur doc got the info and the validation to use this med!! It would help bolster my confidence to use it! I am so glad you are getting relief..is your dose more than 4.5 ?
I hope you continue to have relief!

Elmodo!
First, I am so sorry that your daughter was diagnosed with jRSD during her pregnancy...Pregnancy should be a time of joy and anticipation and my heart goes out to her in having to deal with this diagnosis. I hope you share Sk8ter's positive outcome of using LDN with her, and she might want to visit the website that gives thorough info...if you google low dose naltrexone you can access the website. It has been recommended to me by a university hospital in California by pain management specialists.. I am sorry your daughter was discouraged and convinced to halt the medication when she was actually getting relief..I hope she is able to give it another try. It is given by mainstream pain specialists....not just alternative wellness doctors...
I, too, am fearful of meds, but I'm getting to the point where I am considering the LDN, at least for just 6 weeks...
I don't know what DMSO IV's are..I hope you can share some info about this treatment.

I had my 7th lumbar block today with clonodine in the mix to make the marcane (sp) last longer....it did warm my leg up a bit, but thus far..(7 hours later) I really don't have any relief.....and my back hurts like h--- :eek: I think so much of my pain is from entrapped or damaged nerves in my foot.

Sandy and Mike,
as always thanks for your support, information and friendship......I thought of the board while I was getting the block today (without sedation) it helped me through...:hug:

hope4thebest xoxox

Ldn
 

Please make sure you use only one of the pharmacy on the LDN site. You need to start low ..like 1mg and go uo .5 every 2 weeks or so. Sleep can be affected for a few weeks. I did not have this and actually slept better. Do Not go over 4.5mg as this can then have a reverse affect. Everyone's body is different . I am very sensitive and can only take 2 mg. If you have low blood pressure it can drop it to but will level out for most. I hope this helps. Try to find a dr that has used this. I think on the LDN there is a dr referral if not call one of the pharmacy on the list and they can tell you one near you.
God Bless:winky:

Article on use of botox in blocks
 

I know this is late - but I received this information from a news service that I subscribe to:


Sympathetic Blockade with Botulinum Toxin - A Promising New Treatment for Reflex Sympathetic Dystrophy

Reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS) Type I, is a complex, chronic, pain syndrome that can affect any part of the body, however, it occurs most frequently in the extremities - hands, feet, arms, legs, shoulders or knees. It has been recognized by many clinicians as a distinct clinical condition for over 100 years and has been known by various names including algodystrophy, Sudeck's atrophy, causalgia, and sympathetically maintained pain.

Reflex sympathetic dystrophy is characterized by:

Severe, chronic, pain - often described as stinging or burning
Sensory abnormalities - allodynia (extreme sensitivity to touch)
Motor changes such as tremor or stiffness
Edema (tissue swelling) and hyperhydrosis (excessive sweating)
Progressive changes to skin, hair, nails, muscle, and bone
Increasing dysfunction of the affected limb
Sympathetic nerve block injections have long been used for the treatment of RSD, however, pain relief is achieved for only a short period of time for many patients. Surgical or chemical sympathectomy is also a widely used treatment for RSD but, in general, also has not been found to provide effective, long-term pain relief for many people who suffer with RSD. Clearly, there is an urgent need to develop more effective, long-lasting pain relief treatment options for patients with RSD.

In an article published in 2009 in the Annals of Neurology (Volume 65; pp. 348-351), investigators from the Stanford University School of Medicine in Stanford, California, reported on the results of a pilot, randomized, controlled study in which they evaluated the efficacy of sympathetic nerve block injections with botulinum toxin type A (BTA) for the treatment of RSD.

Because this was intended to be a pilot (preliminary) study, only 9 patients were recruited for inclusion in the trial. Seven (7) of these 9 patients eventually completed the trial and served as the basis for the data-set analysis of the study. All 7 patients had sympathetically-maintained pain of the lower extremity cause by CRPS type I (RSD). All of these patients had previously failed to achieve adequate pain relief with analgesic medications that are often prescribed for patients with RSD (such as anticonvulsants and tricyclic antidepressants).

At the initation of the study protocol, all patients received a standard lumbar sympathetic nerve block injection of 0.5% bupivacaine (a local anesthetic). If, after 30 days of receiving a standard lumbar sympathetic block, the intensity of pain had returned to "baseline" levels (same level of pain as before receiving the standard injection of 0.5% bupivacaine), the patients received a second lumbar sympathetic block injection of 0.5% bupivacaine plus 75 units of botulinum toxin type A. (BTA). The preliminary end-point measured by the study was the time to return to baseline pain intensity, which was then considered as "analgesic failure". Patients were required to keep daily records of pain intensity using a visual analog pain intensity scale, starting at 7-days before the first injection and continuing daily for 30 days, thereafter.

The results of this pilot study demonstrated that the duration of pain relief was extended significantly when botulinum toxin type A (BTA) was added to the standard 0.5% bupivacaine lumbar sympathetic block. The mean time of pain relief with the standard sympathetic block of 5% bupivacaine alone was less than 10 days. In contrast, the addition of BTA to the standard sympathetic block extended the mean time of pain relief to 71 days (10 weeks). The only adverse event recorded among the patients who received the BTA-supplemented sympathetic block injection was nausea and vomiting in one patient which resolved spontaneously after 2 days.

In conclusion, this pilot study offers preliminary evidence that lumbar sympathetic blockade with a combination of a local anesthetic (0.5% bupivacaine) and botulinum toxin type A (BTA) may be a reasonable treatment option for the management of sympthetically-maintained pain in patients with CRPS type I who have failed to respond to other treatments. The authors noted, however, that since only a small number of patient were included in this pilot study, nevertheless, the promising results obtained warrant further evaluation of BTA-supplemented sympathetic blockade in a larger cohort of patients with RSD.

the article follows . . .
 

Sandy,

Thank you! That was obviously news to me. :o (Worse yet if I saw and forgot it.) So running the names of the priciple investigators on the next study (see below), here it is:

Carroll I, Clark JD, Mackey S., Sympathetic block with botulinum toxin to treat complex regional pain syndrome, Ann Neurol. 2009 Mar;65(3):348-51 FREE FULL TEXT at http://www.ncbi.nlm.nih.gov/pmc/arti...ihms140157.pdf

Abstract
Complex regional pain syndrome is a refractory pain condition with few tested therapies. We hypothesized that botulinum toxin A (BTA) would prolong analgesia after sympathetic blocks in patients with complex regional pain syndrome. We compared the duration of standard lumbar sympathetic block (LSB) with bupivacaine to LSB with bupivacaine and BTA in nine patients with refractory complex regional pain syndrome. Median time to analgesic failure was 71 (95% confidence interval, 12-253) days after LSB with BTA compared with fewer than 10 days (95% confidence interval, 0-12) after standard LSB (log-rank, p < 0.02). BTA profoundly prolonged the analgesia from sympathetic block in this preliminary study.

PMID: 19334078 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19334078

And if you go on the RSDSA site, one of the first things you'll see on the homepage is that enrollment in the follow up study is now open ! http://www.rsds.org/3/research/Stanford_BotoxStudy.html Drs. Ian Carroll and Sean Mackey are apparently the lead investigators. You will see the same form in the STANFORD SYSTEMS NEUROSCIENCE & PAIN LABORATORY (SNAPL) website, at http://snapl.stanford.edu/botox/ along with its "secure screening questionnaire" for the new study https://med.stanford.edu/survey/botoxsn/

Note one thing in both the news release and the abstract, it says that the addition of BTA to the standard sympathetic block extented the mean time of post-block pain relief from "less than 10 days . . . . to 71 days (10 weeks)," thereby implying that a good number of the controls were still in the acute phase, otherwise they would be highly unlikely to get anything approaching 10 days of relief from a standard block. When going through the article, it is a little cryptic about the range of time folks had CRPS prior to entering the study: "All patients . . . had: (1) spontaneous pain rating greater than 6 of 10; (2) duration of pain at least 6 months; . . . ." That said, I note that "How long have you had pain in this area?" is a field in the new "screening form." [Translation: if length of affliction is not explicitly noted in the report of the first study, then it really must be in the next, especially if they are using any particular duration of pain over six months as a screening criteria.]

Among the many possibilities this work raises, is the following: If, in at least the acute phase, an LSB+ will buy 10 weeks of relief, how long could you keep it going by scheduling the procedure every two months? The notice of the new study doesn't suggest that it's going in that direction (intermixing the test juice with the control in apparently all subjects) and the consent form spells it out: all subjects will receive two blocks four week apart, one a basic block and the other with BTA, double-blinding the order in which they are delivered. http://snapl.stanford.edu/botox/Consent_11-17-09.doc

But perhaps later on. Then again, the article notes something that suggests this is not for the squeemish:

Adverse Events—One [of ten] patient experienced significant nausea and emesis that started 5 hours after her BTA injection and lasted 2 days; it resolved spontaneously.

Mike

W.C. Insurance is now playing 'games'....
 

Hi friends,

This will be brief as I am so tired...but more so I am angry, frustrated , and scared..

I was notified today by Stanford that WC did not authorize two out of three appointments for next week...... the two slated for march 16th ( a complete physcial therapy eval by a doctor, and a pain psych eval by a PhD specialist) were not approved..

The apointment scheduled for Friday March 19 was authorized. Ironically (or with calculated WC manipulation) that is the appointment when my new pain doc and the other two specialists were going to conference with me for treatment strategy...except my new pain doc won't have any info from his team.......

I am so upset, crying, and now wondering what else they won't approve....
Then Stanford will begin to wonder, too....and won't take my case seriously because approval is unreliable...

I won't give up ...I e-mailed my attorney and he is going to try and help me through this...he thinks they are now playing games.......
How horrendous is that...playing with people's struggle for relief...........

The information from all of you (Sandy, Mike, and Sk8ter) sounds so promising and hopeful..thank you for the research and the time it took to review it and pass it on....I am so grateful to you. I read trhough all of it and these innovative treatments can provide some relief..

Writing this has helped ....I have to try and regain balance as I am so upset, scared, and furious..

Thank you for being there..
I hope you are coping with your challenges as i feel them in my heart.
hope4thebest :grouphug:

Dear H4tB -

Unbelievable. I'm so sorry you're going through this.
:hug:

Mike

Use your regular insurance
 

Dear H4TB,

Do you have personal health insurance? Whenever WC denies my treatments or meds, which is often, I use my United Healthcare. It is a valid claim if it has been DENIED. Usually The Hartford starts playing games when a new doctor or treatment plan is on the horizon. When I switched from using a RI doctor to a Boston doctor last year, the harrassment was severe. And again this year, when an application for ketamine treatments was submitted, the harrassment began again. Meds that I have taken for over a year have been denied at the pharmacy, my lidocaine infusions in Boston have been denied, and of course, the ketamine treatments have also been denied.

So because I dared to dream of maybe getting better with ketamine, I am being punished now by WC by not being approved for ANY medical treatments at all while we wait for the courts to act on my case, which could take weeks or months.

I have also shed many tears over the cruelty of the WC system. My adjuster and her team are truly evil individuals who have wasted an incredible amount of money on legal fees and have caused me enormous suffering. I just don't get it.... There honestly has got to be a better way to run things. Until I got sick I had no idea what "WC" was all about. This is insanity.

If you can, pull out your personal insurance card and just hand it over to keep your plans intact. And let your attorney handle the rest. Try not to get too uptight. And console yourself with the thought that God must have special plans for evil insurance adjusters who prey on older sick people who continue to work in spite of their pain.

Love and peace, Sandy

Another issue for either a good worker's comp. lawyer or an attorney who routinely sues insurance companies in general, is whether, as a form of "insurance" created and not simply governed by state law, a carrier is subject to a claim of "first party bad faith" under state law.

I know such claims against a heath insurance company, whose "IRS qualified" benefit plan is made available to you through an employment relationship, is subject to ERISA pre-emption: federal law takes over. The potential distinctions here are that (1) workers comp exists solely because of state law and varies from state to state, and (2) the employee may be deemed to have opted out of his/her ERISA pre-empted company health insurance by filing for WC in the first place.

On account of which, there may - to the extent that the WC legislation doesn't bar claims against carriers in it's own right - be a higher standards before state bad faith law as applied to WC carriers can be found subject to federal pre-emption, e.g. a statement of express intent in the federal legislation as opposed to what we have now, Supreme Court caselaw, made out of wholecloth, that ERISA constitutes a complete "occupation of the field" in matters pertaining to employment benefits.

It might be worth asking about anyway.

Mike

I called Stanford yesterday and left a voicemail for the person who called me to say the two appointments were denied. I e-mailed my attorney...After many phone calls back and forth today.. my last call to Stanford had good news....

She said that WC told her that WC had made a mistake........
that the appointments on Tuesday were authorized ....and that they told Stanford they were not authorized...in error
If I had not made calls and e-mailed my attorney, etc, those two appointments on Tuesday would have fallen through the cracks....the appointments were re-instated for Tuesday..

My heart goes out to people who don't know how to navigate the red tape, and the duplicity...
"Hmmmm, let's make a "mistake" and maybe no one will question it..."

I am hoping this was not the case...I am hoping that indeed it was an error.

My left foot and lower leg are off the charts with burn and are beet red(can lidocain patches cause this)...it is getting worse daily....and spilling over to my right limb..I hope the new team can help, and the ins. cooperates.

Sandy, you are on a treacherous path with your situation and I hope you have enlisted an attorney who will support you, is knowledgable, and is a warrior, ready to battle for you..
The irony is that we try to remain peaceful and find equanimity, while having to pounce at any moment to protect ourselves...

I cannot believe that WC has halted any treatment for you while you wait....
Can Mike's information re: "first party bad faith" apply to your situation?
Dear friend, I am by your side...especially on Tuesday..

Mike, I will keep your information at hand in case additional "little errors" at the 11th hour surface over the next several weeks..I know you go through a lot of effort and time to excavate the information we need..you are incredibly kind..

Hope4thebest :grouphug:

Great news ... your persistance paid off. A terrific lesson for all of us.

My lawyer's office response to my situation is that "it's just comp." These are the games that they routinely play. Especially the Hartford, which is the worst of the worst. I will definitely follow up on Mike's suggestion. TY Mike.

H4TB, I'm sorry your legs and feet are getting worse. Another type of pain patch that I use, in addition to the Lidoderm, is called "Flector." It's got a Motrin type substance in it called diclenofac which helps reduce swelling. Have you tried them yet? Diclenofac is also the active ingredient in Voltaren gel. Perhaps you could discuss a script with the docs you are meeting with this week? I also find Skelaxin, which is a muscle relaxer, very helpful at bedtime.

XOXOX Sandy

Dear H4tB -

Now I remember why that abstract re the Stanford BTA blocks looked so familiar, because I posted on it back in Novermber!!!

See, LSB with botulinum toxin to treat CRPS or Stanford Pain Med., the good and the ugly at http://neurotalk.psychcentral.com/sh...d.php?t=109277:

In the article, the authors explain how this unfunded pilot study took just under three years to recruit 9 subjects who met the author's rigid inclusion criteria (essenetially people who had had lower extremity CRPS-1 for at least six months, failed other therapies, and yet still had at least a 50% reduction im pain, lasting 4 or more hores to conventional sympathetic blocks) and while they hade been hoping for ten subjects, they finally cut it off at 9. And of those 9, only 7 of the subjects could be used in the end. Yet out of the 7, statistically significant results were obtained . . . .

So what's the Stanford UGLY? Something that appreared in the htlm copy of the article, but inexplicably didn't make it to the [PMC] pdf file I've shared with you. Immediately after the Conclusion and before the References, the html copy has the following:

Footnotes
Potential conflict of interest: The authors report filing a patent for the use of botulinum toxins in sympathetic block.

Additional Supporting Information may be found in the online version of this article. [Empahsis added.]

[A couple of typos cleaned up in quoting from the prior post.]

http://www.ncbi.nlm.nih.gov/pmc/arti...ool=pubmed#FN3

There's more re the issue of patents on medical procedures, including the case now under submission in the Supreme Court, which may well be an end of term blockbuster.

But the fact that I entirely forgot about a thread I put some time and energy into less than 4 months ago just blows me away. And it's almost as creepy as the notion of medical school professors being, shall we say, circumspect, in describing their selection criteria, as in greater than 6 months (but just maybe less than 9).

Mike

Hi Mike,
I checked back to the post of November!! There it was: lumbar blocks with botullinum toxin to treat RSD!
I probably didn't retain it because back in November, the treatment hadn't been suggested as yet...

I also probably didn't retain it, because things are slipping through my brain like a sieve and disappearing...

Fear not, you probably didn't recall it as you have posted so much information for all of us, it's hard for your head to keep a current and updated file!!

I printed the information and will review it in detail before my appointment on Friday...At this point I doubt that I would be a candidate, as the lumbar block they gave me a couple of weeks ago with just bupivacaine and clonidine did't really have an effect...in fact, it seem to flare and stir things up. Therefore, I couldn't provide a baseline of relief to compare a subsequent block with BTA..
This will be an interesting week...

Sandy:
I actually have a couple of flector patches that my foot doc had given me that have not yet expired...I hadn't tried them, as I was using the lidocain patches ..I'll try one tomorrow..thanks for the recommentations, and I will bring them up on Friday..
Please let us know how your Tuesday appointment goes..I will be thinking of you!


Hope4thebest xoxo

It would be so nice if you could get ketamine approved right away. Once the blocks stopped working for me, and I was experiencing spread, I moved on to the lidocaine infusions. I've now had 7. They do work for a little while (like a week, at about 30% or so) for my pain, and they seem to build on each other. My first infusion was in July 2009.

Ketamine is the most effective treatment (70-80% complete success rate) to date for RSD. You might want to bring that data with you to your appt. (Dr. Schwartman's and The Netherland's double blind studies that were performed in 2009). There are a number of places that have ketamine in California - 3 in LA and 1 in La Jolla, according to a list that I got from Jim Broatch.

XOXO Sandy

I know that most docs are saying that a SCS can help and I wouldnt recommend it just from my experience. Especially if they are wanting to implant this via surgery because surgery usually gives the rsd a chance to pop up somewhere else. It does work for some people but for others not so much.