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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Has anyone ever heard of a T2 burn? The PM doc suggested that my husband, who has RSD in his right hand get a T2 block and if that works, get a T2 burn. I am sure there is a technical name for it. I researched it using various terms and what I came up with is that it's RADIOFREQUENCY ABLATION of the nerve. Isn't that a sympathectomy? From the very beginning of my research almost 2 years ago the one thing that was pretty consistent was do not ever have a sympathectomy. This is frustrating. Why would a doctor suggest this? If this is a sympathectomy has anyone had that done and what were the results? My husband is scheduled for acupuncture tomorrow afternoon. Has anyone had that and what were those results? Thanks!
From what I have learned about Sympathectomy its used to destroy the collection of sympathetic neve cells in a specific areal along the spinal cord. Its know to carry cetain ricks and the outcome may vary from pt to pt. . Its usually used as a last resort treatment.. I would carefullly weigh the risks and benefits before undergoing this procedure.
Which one are they considering, the Chemical or surgical Sympathectomy?
I've also learned that the potential candidates for this treatment should consider it only if their RSD pain is sympathetically maintained pain..
Just something to think about..
Good luck and let us know how he does
Michelle1
[COLOR="Blue"]Hi,

I think there are some docs who still use sympathectomy for RSD, but there are others who don't anymore because they know it doesn't work and could make things worse. I asked my doc recently if they do them anymore for RSD and they do not. I had a surgical sympathectomy in 1991. Besides being THE most difficult surgery I've been through, it did nothing for my pain except make it worse and it left a whole bunch of other side effects that I didn't have before the sympathectomy. If it worked, it would all be worth it, but it didn't.

I think your researching "radiofrequency ablation" sounds like the right thing to research based on what your doctor told you (it sounds like the same thing). Good luck with whatever you decide.

Sharon :)[/COLOR]
I think what you are reffering to is also known as RFTC Radio Frequency Thermal Coagulation. I was offered this treatment as a temporary fix. Usually when they do this procedure it will sever the nerve from 6 to 18 months. After Workers comp denied it my PM told me she was just doing that to buy me time before going to a more invasive modality. Hope this helps a little :)

Jon
Michelle, Sharon and Jon,

Thanks for you input. He is not going to have a sympathectomy. What I've read so far about this is they heat up the area to destroy the nerve but it can also destroy adjacent nerves. I am not sure if his pain is SMP or SIP. I'm also not sure if they are talking about chemical or surgical. It sounded like they would go in through his back.They would do the block first and if that worked they would do this permanent thing. This has just been a nasty road that we would love to get off. He now has a severe headache. Is that part of RSD too? Jon, I will be looking into RTFC. He has an appointment with Dr. Schwartzman in Oct. We will probably just hang on until then to see what he has to say.Thanks again guys.

Tracy
Yeah I forgot to ask what type of pain does he suffer.. If he is SMP than the procedure could work. But if its not than I wouldnt even bother with that one. I remember my PM telling me the procedure had a 40% chance at helping some. On finding out wether he has SIP or SMP I know the Blocks performed help indicate that.. I responded really well to the blocks with a unusual temp increase with a huge pain decrease so mine is SMP. I hope Schwartzman helps you like he does everyone else with this disease. Good luck with him I wish I could see him! :)

Jon
Jon,
The blocks that he has had...4 stellate ganglion...have done very little with the pain. The first one he had the temp. did not increase. The edge that the blocks do take off only last for about 24 hours. Does that mean his pain is SIP?
Tracy,
Iam a pt of Dr Schwartzmans.. I was just in the hospital with him for a lidocaine infushion.. It was my second treatment.. I had positive results from the first one.. My second not so great.. I ended getting sent home early do to an allergic reaction.. I see Dr S in May.. Were talking about the ketamine treatments.. How do you and your hubby feel about DR S? Is he the one who suggested this treatment for your hubby? What other treatments has he offered you?
Iam just trying to get a feel for him This is my 3rd yr with him.. Sometimes I just feel like a number with him.. Its very aggravated. I have noticed you live in pa so your lucky you don't have to travel very far.. I've been searching for another RSD specialist in PA.. I've had no luck so far.. Everytime I call someone they say our only suggestion is to go see a dr named DR S down in Philly LOL.. Thats where Iam going. and they say well your seeing the best.. So, If you have any luck tracking a dr in PA.. I would love to know.. There are drs out there that are willing to see me.. I ask them if they are up on ketamine treatments etc.. alot of them never heard of it. I chose not to see them cause they will just end up putting you on drugs.. I don't want drugs.. The lidocaine treatment I had first helped me out alot.. When I came home I noticed little by little I didn't need to take my pains anymore.. It lasted a while.. This is why I went in for the second.. EVen though the RSD has spread.. The pain level has never been as bad as it first was when I was first dx..
When you see DR S.. mention the lidocaine infushion.. most insurance co will pay for it unlike the ketamine.. Its a great treatment. I know other pts who have had it and they are feeling alot better.
Michelle1
Michelle,
My husband hasn't even seen Dr. Schwartzman yet. When he was first diagnosed in May 06, we called to make an appt. with Dr. S. and they said it was a 2 year wait. Well, not knowing a lot at that time about RSD we didn't make the appt. I guess we thought he would get better. This June, after his SCS stopped controlling his pain he called again and was given an appt. for Oct. 2008. I don't understand how they can make an RSD patient wait that long. Ketamine is what we want to look into. His PM is in Abington, Rosenthal, et al. Nice people, but I think they have reached the end of the road. They are the ones who suggested this T2 thing. I too have looked for doctors who have knowledge of RSD. No luck. I live 30 miles west of Philly. There was Dr. Harbut I think his name is in Hershey but by the time I found out about him he had already moved out of Pa. I wonder if my husband's PM can/will do lidocaine infusion. What is that like? Inpatient? Side effects?
Tracy,
When I was first dx from my orthopedic, the first thing he did was call DR Schwartzman.. Dr S is the one who started all my pain meds, he put me on Neurontin, lamical and tylenol with cod.. In the mean time I was to make an appt with him.. I had to wait two yrs also.. Most of his pts do see a PM dr in between.. So keep up with you PM even though you see him.. I think DR S main goal is to treat the RSD so you don't have to take pain meds.. He will not prescribe any pain meds.. So please keep you PM dr..
As for the lidocaine infushion.. It was harmless. Its a five day in the hospital.. Down at Hannamen in philly.. (spell?).. I am sure you know.. You have to see a cardiologist first just to make sure you hearts ok.. The lidocaine does lower you heart rate and this is why your hospitalized. YOu have a heart monitor hooked up 24/7. All it does is make you tired.. You still take all your pain meds while getting the infushion.. You start out at a lose does and throught he five days the up it everyday.. Then your sent home.. You are also sent home with oral lidocaine.. Alot of pts feel the differance right away.. some don't feel it until they get home.. Dr S and his team of drs visit you everyday.. They constantly evaluate you.. Like I said before, I had such great relief from it. WAs off all meds. I just wish I didn't have a bad reaction this time.. I got half way through before I started breaking out in hives..
YOu said your hubby goes to Abington.. I live about 10 mins from there.. My primary did tell me there is a DR in Abington that treats RSD. He wasn't sure if he was up with the newest treatments. Like my priamary says.. Dr S is the King of RSD in this area. Sometimes I feel like Iam just a number with him.. Remember he's is reserarching this also.. And every single case is different. He feels I will benefit with the ketamine since I did so good with the lidocaine.. As for your PM doing Lidocaine.. He probably doesn't.. Whats so sad is that we need more DRs to take the time out for us RSD Pts.. The way Dr S assistants were telling me.. RSD is with neurology. And its such a small portion of neruology compared to everything else such as stroke pts etc.. I guess were nobody.....
Iam looking for a PM dr myself.. I don't want that procedure though.. I might look into the one hubby goes too..
If you have anymore questions, Iam here for ya.
Take care,
Michelle1
Hi Michelle,
My hubby was diagnosed by his orthpedist too. My hubby's doc is at the Abington Surgical Center on Blair Mill Rd. Like I said, I really like Dr. Rosenthal's personality I just don't think he knows what else to do. I read somewhere that RSD is about a 5 minute footnote in medical school. My husband...his name is Marc.... just did a 4 day stay in Abington Hospital with the epidural with fentynyl. Great, while the epidural is in. That was his second one. He has also had what I thought was an infusion with marcaine, but maybe that's not exactly what it was. He was at the surgery center for several hours with the thing in his back. Same thing...great while it was in. If you don't mind me asking what age were you diagnosed? Marc was diagnosed at 46. Thank you so much for taking the time to talk on here. It is so nice to know there is someone dealing with this who is very close geographically.
Martra1025,
How are you and how is your hubby? I just have another question for you.. Is Dr Rosenthals a Neuro or is he an ortho.. Iam getting confused.. Iam really thinking about seeing another dr while waiting to see DR S... I live only 8 mins from there.. How perfect is that..
I was in the accident when I was 35, not knowing I had RSD.. I was being treated for herniated dics (which I do have).. It started in my neck and quickly went to all four extremities.. I was dx at the age of 39.. Kind of too late .... I really do feel alot better ever since I had the lidocaine infushion.. Iam not working right now.. I haven't since 2005. Its very hard financially.. I can't collect disability..
How long has Marc had RSD for? How did he get it?
It must be so hard for you.. I see what my B/F and kids go through.. I would love to hear your feelings about this.. I often wonder what goes through my Boyfriends mind.. He's probably thinking, what the heck and I getting myself into.. LOL.. No, he's a great guy.. I do feel bad for him.. I depend on him totally for the financial end of it.. Plus I have my three kids here.. I know he gets tired of me saying Iam in such much pain..Then I always say to him.. No you don't understand... He says he does.. We go back and forth with this all the time.. Enough of me... lol lol.. How are you handling it? Iam sure it takes a toll on you also.. I try to put myself in yours and my b/f shoes.. I am not sure I would be very good at it... Love to hear your thoughts..
Yes your right, its good to talk to someone who lives nearby... I wish you could get in to see Dr S sooner.. This is why Iam looking for another dr.. He has to many pts..
WEll take care, and I hope you hubby is having a good day.
Michelle1
Michelle,
Dr. Rosenthal is an anastesiologist with S.E. Pa. Pain Management, Ltd. He is at the Abington Surgical Center. There are multiple doctors in the practice. Any of the doc's we have seen are all very nice. Let me know if you see them. I am not sure if they know everything there is to know about RSD. They can suggest treatments and the patient can decide for themselves. I just don't llike that they suggested something that sounds like a sympathectomy. We're going to see if we can keep the appt. on the 7th and instead of the block discuss what else we can do. Why aren't you able to collect disability? My hubby cut the tip of his ring finger almost off. Within 3 weeks the pain had spread to his middle and small fingers. He had a bone scan and it showed changes that suggested RSD. He was diagnosed and treated early but it didn't stop the progression. Keep your chin up and talk to you soon.
Tracy
Martra,
Thats sounds so painful.. Iam sorry to hear that.. The thing is I need a PM dr.. one who will take auto insurance. All my medical bills are paid under that.. The only other insurance I have is medicaid. And medicaid won't cover the RSD.. ITs hard to find a dr that will take the auto.. The all ask for secondary insurance.. This is going on 6 yrs. It gets old.. What good is it to have auto insurance then when you need it you can't use it...
I think with PM they're only there to deal with the pain.. There not there to cure it.. Thats where Dr S I guess comes in.. We are in a no win situation Were stuck not much we really can do. I will call and ask to talk to them before I go.. I want to know how much knowlege they have with RSD.. Iam waiting for a call from my primary tomorrow. He had mentioned and RSD doctor at abington Hospital.. I'll let you know what he says...
well, take care..
Michelle
Dr. Rosenthal might be ok with just the auto insurance. My husband only has workers comp. No secondary ins. When he was having the stimulator implanted Rosenthal needed a neurosurgeon there to do the procedure. The neurosurgeon at first wanted a deposit of 1000 dollars because he was afraid he wouldn't get paid by comp. He might as well have asked for 1 million. We didn't have 1000 dollars. Rosenthal talked to the neurosurgeon that day while we were still at the appt. with the neuro and the neurosurgeon agreed to do it and run the risk of comp not paying. I am assuming comp did pay though. Rosenthal is good about that. Give them a call.





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