Originally Posted by SandyRI

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. ...
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

Originally Posted by hopeful

Hello,
I did have the 2 week 5 day ketamine treatments with Dr. Schwartzman at Drexel. I have had 3 sets of boosters and am scheduled for another in Nov. I was so scared of having them and they were not as bad as I thought. They give you meds to help with the hallucinations and want you to take Ativan before bed and in the morning while you are having the treatments. I did have some mild hallucinations. Nothing really bad.

I can say that I got some relief. I don't know how to describe what was happening to my arms. I said it felt like is was itchy. I use to scratch until I was brusied. I would wear lidocaine patches to bed. That has stopped. The first 2 week treatments gave me quite a bit of relief but it has not put me into remission. My arms symptoms have not returned though so that is quite a relief. Dr. S. thinks I would be a better canidate for the 5 day in hospital high dose treatment.

I do have a PPO (Blue Cross) and they are now refusing to pay. They would only pay for the outpatient but now say that the treatments are experimental/investigative and want the money back they paid for the first so many treatments.
I paid out of pocket for the last boosters. I have a hearing for my 2nd appeal on 10/8. I am hoping I win the appeal. I wish I could get them to pay for the inpatient treatments. I think at this point I would try anything to get rid of this pain.

The staff in the infusion room at Hahnemann were great. They really give you the best of care. I wish I could say I came away pain free but that is not true. However, I have met many patients at the infusion room that have had remarkable results.

Good Luck and hope they work if you decide to have them.

I have a question for everyone. Have any of you had a nerve block or Lidocaine treatments. Are the Lidocaine treatments infusions? I have an appt with Dr. S. in Oct to discuss a nerve block I would like to know if there are any other treatments I should be prepared to ask him questions about. I need something to stop the burning any suggestions?
Thanks!
Hopeful

Originally Posted by bbpoolgurl

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!

Originally Posted by bobber

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

Originally Posted by gabbycakes

Dear SandyRi,

HSS doctors all have different rules there like sub-contractors for the hospital. I believe the the only 2 doctors who do the 5 day in-patient ketamine is Dr. Richman, who is my doctor, and Dr. Walden. I would call them direct. The web-site is www.hss.edu you can look them up by name. Dr. Richman really is strict on the insurance he will take and it has to be a PPO he does not participate with any insurance company and ops out of medicare. If I was going to have this procedure I would do it at HSS the care is really superior, I also had many surgeries to fix my inquiry and each had semi-long stays 4,5,6 days each time.

Good Luck...

Gabbycakes


QUOTE=SandyRI;571157]Hi Gabby,

The HSS told me that they weren't taking new RSD patients. I later found out that I was denied because they don't accept WC. I wonder why they just didn't tell me the truth?

I will likely go to St. Luke's (but I am still waiting for Dr. Getson of Marlton NJ to get back to me, I sent an application to him also). Do you know anything about their facility? I did get an e-mail from one person who has been there.

What happened to your metabolism?

Did you return to work?

I want ketamine not only because I want to become painfree, but also because I want to return to work. If I can get rid of enough of my symptoms so that I can get off most of these meds it would be awesome!!

Thanks for any additional info you can provide to us, and feel well (borrowed that expression from Pete)

XOXOX Sandy