NeuroTalk Support Groups - RSD and Kedamine Trials

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD and Kedamine Trials (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/129969-rsd-kedamine-trials.html)

General,
Thanks for the info.

And I do think of them. We have a grandson that we raised who is in the Marine Corp. He just came home from Okinowa & will be going into infantry training again before being shipped to Afghanistan next year.

I have seen a doctor who wants to try a lower extremity lumbar sympathetic ganglion nerve block with Botox in it it. That will be after I have an EMG next Monday, which btw I am NOT looking forward to, to make sure I don't have entrapped nerves in my feet. I have to pay for the Box.....about $250 to $300 for a tiny vial.

DebbyV

Quote:

Originally Posted by Debby (Post 684857)

The nerve block can actually be a pseudo cure if your RSD is diagnosed within the first 3-4 months. Here's the catch.... the good doctors are reluctant to diagnose RSD feeling that it is a dumping ground for anything an MD cannot figure out. After these months the likelihood of a block being effective drops exponetially. I have not had the box placed in my lower backand am reluctant to have any hardware instally with only a 50/50 chance of any success. They do however place the "spinal stimulator" outside your back for the first week or so and if it doesn't work they can remove it. My RSD is in my foot and I am scared stiff of them spreading it to my other leg in the process of conducting this treatment.

My best advice is stay as clear of pain meds for as long as possible and look into Ketamine trials in your area. Contrary to what you've seen on this board the 1-2 day coma IS being conducted. I know because I had it last month with great success. Now it's just how long will it last!

Good luck and God Bless.

General

Quote:

Originally Posted by SandyRI (Post 684466)

Dear General,

Congrats on your recent success with ketamine. I was aware that there was ketamine available in Rutland, Vermont - Jim Broatch of the RSDSA includes that location in his ketamine doctors list. How incredibly interesting that there is a group involved in Burlington with ketamine that is willing to do a short term coma on an experimental basis. I have not been able to discern from your posts (or maybe I missed it?) whether or not your insurance covered the procedure. Are your doctors going to bill you for it or were they willing to do it for free in the event it is denied? I am assuming that you have Tricare (which is so much better than my lousy United Healtcare!!). Since you went through the ER did the authorization for the procedure automatically get approved? Is the hospital part of a military base or is it civilian?

By the way, my dad is a retired 2 star general - USMC - he was a fighter pilot, but was in the reserves until he got activated for the first Gulf war. It's funny that you call yourself that, I am "home" visiting with my mom and dad now at their beach house in NJ for a few days, everyone around here calls my dad the "General"....

It's always so great to hear success stories from others. I've have 23 low dose ketamine infusions (I'm at 150 mg), I started the 10 day outpatient protocol with Dr. Getson (who I LOVE) in April of this year. I am off all opiods and have returned to my FT job after a one year LOA. But I still take Fiorcet for head pain on a regular basis and will likely need my second occipital block soon - owwww. It's a battle - I am not perfect and pretty nervous about my future. Right now I am taking one day at a time.

Detox for me from Fentanyl was tough - I took Suboxone for about 10 days or so in May after I tapered down to the lowest dose patch available, but it still took me at least another month or so to feel good - I lost my appetite, felt miserable, had zero energy, etc. I hope NEVER to touch that stuff again as long as I live. I am extremely envious that you were able to "rapid detox" in just 1 day. That sounds pretty cool (except for the losing your memory part).

Wishing you the very best of luck - I truly hope that your pain relief lasts a long time, and that you regain the full use of your foot back.

XOXOX Sandy

General was a call sign given to me within the squadron and amongst friends. Most of my friends are pilots as I was a Flight Managers for the same squadron for 16 years. I always try to qualify my callsign with the caviat that I mean no disrespect. I have been doing this so long many of the pilots I grew up with are either retired, full bird Colonels, Generals or more. The Adjutant General for VT is a close personal friend and his brother, also a pilot and close personal friend has been lieutenant Governor for years and running for Governor this year.

Good luck with your treatment and you'll be in our prayers. God Bless.

General

Dear General,

My dad's call sign was "Spook"....and absolutely no disrespect was felt on my part. I'm just one of his kids (he and my mom had half a dozen of them...)

Do you happen to know what your dose was over the 2 day period? Just curious. And I'm also REALLY curious about the insurance part - is Tricare (or another plan) covering this for you, are you in a VA or other military facility (I remember you said the doc was being re-activated soon), or was this done in a regular medical hospital? So many of us have struggled for months and months (and many unsuccessfully, unfortunately) with insurance issues over ketamine treatments that it would be truly amazing to discover that a 2 day coma would be a covered benefit.

Sincere thanks for any additional information you can provide.

Sandy

Quote:

Originally Posted by General (Post 685716)

In re-reading your posts I'm wondering if you were part of a trial?

Quote:

Originally Posted by General (Post 685716)

Quote:

Originally Posted by SandyRI (Post 684466)

Do you have the list your mentioned above from Jim Broatch? What about doing this in Germany? My mom is in Tel-Aviv, so Germany may be easier - especially if dealing with booster shots.

Thanks,

Talmon

Quote:

Originally Posted by General (Post 685713)

My mom has been [likely] diagnosed with RSD following a hand surgery (Carpal Tunnel Syndrome) less than 2 months ago. So looks like we're still in that "golden period". What should I do next? Do you think this is the right time for nerve block? Is there a chance that this will send her into permanent remission?

Quote:

Originally Posted by Duras (Post 687368)

Duras, now is the time to get aggressive with this condition. My undstanding blocks will give temporary relief and also can indicate or diagnose the condition as RSD. I'm vague on this because my wife refused them for three reasons. One is it is tempory and it can cause havoc if not done properly and can cause the spread of the disease. Also, overtime it becomes ineffective but it does give relief to many for a short time in most cases. I would have her visit the best pain specialist in Israel that she can find and through them gather all info on ketamine treatments. My wife, who has RSD, had this treatment (infusions and boosters) but here in the States there are several methods. My feeling is the more ketamine delivered in the early stages of this disease the better the results can be but not guaranteed. Germany does have an extensive treatment using Ketamine. My understanding it there was a recent death of a woman using the ketamine coma treatment causing this treatment to be on hold at the moment. My understanding there is an age limit on the coma treatment of around 50 and under but I could be wrong about this. I hope your mother well.

Hi Talmon - Jim Broatch is the Executive Director of the RSDSA. You can communicate directly with Jim Broatch at the RSDSA via e-mail. His e-mail address is jwbroatch@rsds.org. Hopefully he will have some advice for you. The ketamine doc list I have is at least 6 months old, and does not have any European docs included (just one from Australia).

Good luck. Sandy

Quote:

Originally Posted by Duras (Post 687366)

I am looking at getting the same 5 day moderate ketamine with spinal cath and extensive therapy in Chicago. Dr. Lubenow from Rush hospital will being doing the treatment. I am wondering if anyone has had Dr. lubenow and how many boosters has anyone had so far.