I'd be very hesitant too. What does the coma treatment have to do with what she is offering you? Sounds like she's pressuring you. It doesn't sound right.

Has she worked on other RSD patients and if so can you talk to them?

My German medical contact says that he has good success with this treatment for other ailments but it is not a cure all. Most importantly to me he said he would not apply this treatment to an RSD patient.


Listen to your gut instinct CZ.

For what it's worth personally I'd want far more evidence that this can be used safely and successfully for RSD patients before I would ever consider it.

MsL

Msl,
I can not thank you enough for the extensive time you have spent researching this for me. I have been feeling pressured from many areas about this.

And your right my gut has been telling me this could be a disaster for me.

For example, today I have an emergency requested appt. with my pain management doctor. I have been having bone pain so intense, that it feels as though I am trying to stand on a fracture.
I wanted to mention this as I remember your post concerning bone pain. If anyone has broken a bone, they will know exactly what I mean. There is a unique feeling. I have suffered with bone pain for sometime, however this is a new type of bone pain
Every time I think something can't get worse with this RSD, it does. So in tying this to the neural therapy, my original injury is on my right chin, right on the bone, in fact the bone was exposed. so the thought of needles going right there is a worry, Especially since I am having this new dilatating bone pain.

Thank you again. I am going to pass on the procedure. I will let you know about my x rays today at the pain management doctor- my leg bones are being x ray to see what is happening. Thank you again so much. CZ




Listen to your gut instinct CZ.

For what it's worth personally I'd want far more evidence that this can be used safely and successfully for RSD patients before I would ever consider it.

MsL[/QUOTE]

HI CZ,

I was shocked when both my x-rays and bone scans came back with very little conclusive evidence about the specific cause of such a dramatic increase in my bone pain. The lack of mechanical evidence can really only lead us back to the neuropathic component as the cause.

My family doctor thinks the trigger was caused from me stopping my Ibuprofen for a few days, that and an increase in the colder weather. I have few options for meds and Ibuprofen has been my first line of defence taking a minimum of 1200 mg per day. I was having lots of stomach pain that's been happening off and on for over a year so I wanted to see if reducing my Ibuprofen would stop that pain. It did sort of but then I ended up in worse shape so I'm really in a pickle now because I'm allergic to most anti-inflams. We're trying some medications to counter the stomach issues pain but I'm not having much luck with those either. I've been referred to gastroenterologist but that appointment isn't available until January.

I know totally what you mean about feeling like you have a broken bone. Sometimes when I just try to step out of bed in the morning it feels like I my bones are so brittle that they will break if I put too much pressure on my foot. The weekend that I finally caved in and went to emergency it felt like I had a machine gun inside my foot and the trigger was being pulled every 2 to 5 seconds for 36 hours straight. Man that was the worst I've ever had.

I can't imagine what it is like for you to have this in your chin and I really feel for you. I know someone who has this in her face too and it is debilitating in a completely different way from a limb. She's been referred to the Ketamine coma treatments but I don't think she wanted to do it. Have you tried lidocaine infusions?

When we see things that offer so much promise and hope its so very hard not to want to try them. I've been there before many times and probably will be again. I always draw the line at anything invasive especially the SCS that I was apparently the perfect candidate for. I was also the perfect candidate also for the bunion surgery that caused my RSD. I certainly wasn't so lucky with some of the pharmaceutical interventions which ended in serious allergic reactions.

I declined the ketamine coma in Germany because the doctor there recommended I try Lidocaine infusions first, thankfully, because it did give me an extended period of fairly good quality of life. Still does, just not in the same way.

I'm glad you decided to put this neural therapy on hold for now. There are other options for you and I hope your doctors are able to help you find the relief you need.

Be strong my friend and hang in there.

MsL

Hi CZ,

I live in Tampa and I have not heard of this doctor. Do you know where they are located? It would be interesting to see if they actually work with RSD patients.

Thanks,

Sandy

Hi Sandy, I will get the phone number and send it to you in a pm ok. as well as her name as I do not have permission to post it. Especially since I have decided not to try it. it will probably take me a day to two to find again but I will send it to you. take care, first name is Brenda, I can remember that much! cz