I forgot I also did a booster at St. Lukes under a Dr. Ronald Hertz he was very nice but I don't think I would do a 5 day inpatient. Just my opinion. Dr. Hertz was very nice but I just felt they were not equip, but I have heard it has changed. You have to check this facilitie out.

I did only go back to work Part Time and at a much less position then I had before, but at least I went back part time.

As far as metabolism it has slowed down tremendously and I have gained a lot of weighted. The metabolism theory is only my opinion and I am hypo-thyroid but I have been hypo-thyroid all my life and been on synthroid since I was 7 and I am 40 now.

I hope I answered all of you questions....

Gabbycakes

hopefull
I had only 3 blocks done,,the dr openly admitted that he missed on the 1st one,,,,he didnt think that they were going to help me ,so he decided to not do any further shots,,I asked him to reconsider doing a series of shots as,most dr's do,but he refused,,either way,I think the last shot sent me into a flare anyway,So i figured that God was protecting me ,,,I was told that if you are SIP then the shots would aggravate the rsd,,But if you still in SMP, the shots would help,,Im not 100% on this info,,but I believe it is accurate,,good luck and remember that we all respond physically different to procedures,,,Id try them and if you get relief,,continue,,if the shots send you into a flare,,stop,,,,,,,,,best wishes,,,,,,,,,,,,,,bobber

Hi Hopeful,

I have had 7 stellate ganglion nerve blocks (SGB) for my upper right extremity, one lumbar block for my right leg and 3 lidocaine infusions. Its hard to believe when I write that that I've been sick that long! I was diagnosed June 2008 and had my first nerve block on Christmas Eve 2008. I go to Dr. Joseph Reyes at Caritas St. Elizabeth's (affiliated with Tufts) in Boston for all my care, he is awesome. I wish he had ketamine, it will be really hard for me to have another team of doctors take care of me, because his are just so great. The "tone" is set at the top and when the the guy in charge is sincere, caring, thorough, top-notch, etc that is how his team learns to operate.

Anyway - the SGBs worked really well at first, but didn't last long. Overall, the series of blocks allowed me to continue working for about six months. After the first 2 blocks I could actually lie down and sleep on the back of my head, which is the source of my worst RSD pain. That was just great! Because they also work on central nervous system they can help to reduce your other symptoms as well over time. I remember driving to work one morning and almost feeling like the old me.

It's really important, IMHO, to have the blocks done by a REALLY good practioner who knows what they are doing and hits the "spot." Nerve blocks are risky, especially the SGB which is done in the cervical spine and go into the front of your neck. I wouldn't let anyone in RI touch me for one of those.

I started lidocaine infusions in mid July of 2009. I just had my third a week and a half ago. The first 2 worked really well on my right leg pain, which is where my RSD spread last spring. I also had a lumbar block on Sept 1st that helped, but I think the lidocaine worked really well, too. The infusions make you tired so that you sleep better. I thought the first 2 impacted me much more than the 3rd one did. I wish the infusions had worked on my head pain, but they didn't, at least not that I could tell. They are very relaxing and lidocaine isn't risky (like ketamine), except that during the 2nd infusion I did have a reaction when the drip rate was turned up too high. I was fine once they turned it back down.

If I didn't answer all your questions please let me know. I am really surprised that you would have ketamine infusions done PRIOR to trying these other modalities first. Wow. You're lucky because ketamine has a much higher success rate.

I saw Dr. Ronny Hertz at St. Luke's on Friday and will be starting ketamine there in a few months. In his opinion the FDA will soon approve ketamine for RSD and it will become much more available. When that happens your insurance company should back off.

Take care, XOXOX Sandy

Hopeful,
I have had 17 left lumbar sympathetic nerve blocks for my RSD- is this the type of nerve block that your doctor is suggesting? There are several different types, that's why I am asking.

It's a minor procedure, and you are not put out, only light sedation, so you don't "freak out". My procedures last about 45 minutes, but I have heard that is a long time, and my doctor told me my lumbars don't always like to cooperate, plus my BP doesn't always cooperate either (it drops suddenly, and I have low BP to begin with), so sometimes we have to play with the drugs before we can even start!

While it's outpatient and a minor procedure, it's no walk in the park either. It's a 12 inch long needle that goes in from your side, all the way up to your spine and the nerve. If you are only beginning them, then you won't have to worry about scarring in the muscles and all that- that's when it really starts to hurt me, because she has "pop" through the scarring to get to where she needs to be. It's uncomfortable, sometimes really painful, but they give you IV pain meds to help.

For me, the beginning ones helped tremendously. Then, the effect started to wear off. Now, I usually only have them if I am flaring- they do wonders for me of getting me out of the flare-up, and bringing me back down to "normal". Sometimes, the relief is longer than others, and I have had two which have brought my pain levels down enough that I was able to be off meds and working. So, there is something to be said for it.

If you are really thinking about doing them, I cannot recommend my doctor enough. She is WONDERFUL and known for doing Nerve Blocks. Dr. Ginger Chiang, of Delaware Back Pain. Really, she's awesome, and I cannot recommend her enough if you are planning on going this route.

Let me know what you decide, and feel free to PM me if you have more in depth questions. Good luck with whatever you choose!

Hi Gabby,
I don't know if each state is different but I have a PPO (BlueCross) and all of a sudden they decide they are not paying for my ketamine infusions anymore. I hate insurance companies. The first neurololgist I was wanted me to get IVIG treatments. They denied them too. He told me he was actually on the phone with the ins. company doctor and they had screaming match. They told him he worded something wrong when he filled the pre-authorization form out and now could not change it and they were denying the treatment. The best was the MD who worked for the ins company was a pediatrician making medical decisions for a neurology patient. I remember always being told Blue Cross was the best ins. I don't think so anymore.
Sorry, didn't mean to go on about ins companies just venting. I am thinking about getting a third opinion and I was wondering if you know if Dr. Richman is taking any new RSD patients? I love Dr. Schwartzman but my daughter says maybe I need to see someone else also. She says ketamine is really Dr. Shawartzman's baby and since my insurance is no longer paying (I am fighting) that possibly another doctor with another treatment may help.
I'd appreciate any infor you may be able to give me on treatment options
Thanks
Hopeful
Hopeful
[/QUOTE]

OK I am probably going to sound really uninformed but what is SIP & SMP
Hopeful

Hi Sandy,
You are right I was very lucky to have gotten in for ketamine treatments as early as I did. I think the first 2 weeks worth worked much better than the boosters. I do think that if I had the ability to have them more often or go in hospital and have the 5 day treatment I would be much better. I did just hear that new research is coming out that will leave the insurance companies hard pressed to not pay. Dr. Schwartzman is getting ready to publish a research study and I was told me it proves they work. I hope the insurance company decides they will cover inpatient.
Thanks for the infor. I am trying to gather as much information as I can for my next appt.
Hopeful

One of the very best places for info on RSD is the RSDSA.org website. They have libraries of info on all sorts of stuff, and its really very good. I especially like the treatment info and have printed out many of the articles by Schwartzman. It could literally take you several days to get through their database. They also have links to many other informative sites.

SIP is sympathetically independent pain. SMP is sympathetically maintained pain. Your pain is SMP at first and is more easily treated with nerve blocks but once it becomes SIP it is much harder to treat.

I think I got that right. If I didn't then others on the board will jump in and straighten me out.

XOXO Sandy

Dear Hopeful,

I did here that he was not taking any new RSD patients on because it was to difficult to manage all the RSD patients on a full time basis, but he might just take you on to do the 5 day ketamine infusion, he does not do boosters,you can go to Dr.S for your boosters and then you can go to your regular pain dr. for regular maintenance .

You can look Dr. Richman up on www.hss.edu .

Good luck...

Gabbycakes

Hi Everyone,
I want to say thank you to everyone for all the information. I helps a lot to know I have others out there that understand. The people around do try really hard but I think unless you have RSD it is hard to understand. I have and don't completelyl understand it! I'm still pretty new to all this. I was dx'd almost a year ago.
Thanks
Hopeful