Hi, I'm new here! - Reflex Sympathetic Dystrophy Message Board

Lindaa · 10-28-2003, 04:47 PM

Hi, I'm glad I found you all. I've had RSD for 3 months (started in my thumb). I've been icing it, I found out that was wrong. I'm reading as much as I can about it now that the doctors are saying it is RSD. Extremely painful, had an MRI last night, then the pain flared up more. I have an appt with a pain doctor for blocks tomorrow and I'm scared. Can anyone tell me about their experience? My prayers go out to all of you. I never even knew about this disease. I don't know how you all do it.

cattys · 10-28-2003, 05:19 PM

Linda,

Welcome to our RSD family.

My RSD started out with a broken wrist and I had the ganloin blocks that you will be getting. That is the first step in treating RSD so your dr is doing the right thing in sending you for these.

The stellate blocks worked for me at first then after a while they stopped working. Everyone reacts differently to treatments. You just might be a lucky one who the blocks put you into remission. Don't give up if the first block don't work somtimes this happens.

When I would have a really bad time with my RSD I welcomed the blocks. I would practicly call the dr. and beg for one.

Some dr's will sedate you for this. Ask the Dr. doing the block about this option. I never even knew this until I was through with my blocks.

I wish you luck with your first block. If you ever need somewhere to go and ask questions or just to vent we are here. There is always someone here who can try and help you.

((((Gentle Hugs))))
Cattys

sharon1030 · 10-28-2003, 07:03 PM

Hi Linda,

Welcome to the boards. I've had RSD for 17 years. Most of my blocks have been for the lower extremity. I've only had one or two of the type your going to have tomorrow so I don't have much experience to share with you on that. It was also a long time ago that I had those blocks so it's fuzzy, but I can tell you that they're not that bad. As cattys said, some people get sedation which, I assume, would make things a lot easier. I never got sedation, but it has to make it an easier process. I hope you get relief from the block(s). Let us know how you do tomorrow.

Sharon

AngeInBoston · 10-28-2003, 07:52 PM

Welcome to our Board, Linda!

I'm sorry it's under such sad circumstances, but you are still at the beginning of the disease and have the best chance of beating this into submission....I hope your block goes well!

My husband swears by having sedation for his spinal blocks, but I don't know how much different they are down at the bottom than at the top, I'd imagine it would still be more comfortable to get sedated...but they don't offer it unless you ask, at least that happened to Joey the first time, and he was in SO much pain during the procedure! He told his Ortho about it and he told him he needed to ask for sedation or else the wouldn't give it (cheapo's!!)

My husband Joey has RSD in his left ankle/foot after surgery in late March, and it's been a rough 7 months...we've gone through alot of Dr.s and not enough blocks or Physical Therapy at the beginning like we should have, and now it might be spreading to his other foot.

What I recommend to Newbies is to become as informed as you can, get aggressive, because if you don't the medical world will run right over you....if you don't ask for adequate pain meds, they usually won't offer them! Demand an aggressive treatment plan, and ask about Physical Therapy, as much as it will hurt, it should also help to keep your hand from atrophying.

And don't be afraid to tell them you are a member of an Online Support Group with RSD'ers from around the globe...some may scoff and try to say there's so much misinformation on the Web....but stick to your guns that we are a large community of REAL sufferers who exchange stories and medical info and medicine side effects, etc. Information really IS power! For instance, most Dr.s and Nurses will have old info and tell you RSD doesn't spread to other parts of the body, but we know it DOES! They're just behind the times, because it's such an obscure disease, although it really isn't, they say there's millions of us???

I also recommend you get a notebook right now and start recording every phone call, conversation, what meds you're on and how they make you feel, since everything will keep changing and then you'll have a timeline and record of what you've tried, what works and what doesn't! I sure wish I had, because 7 months later it's hard to remember what's happened completely with the right timeline....

Hope to see you here often,

~Ange~

Horsie Nutt · 10-28-2003, 07:59 PM

Hi Linda, welcome to the board, I'm glad your doc caught the rsd early! I've had the stellate ganglion blocks, with sedation, and they are nothing to fret about. A bunch of people here have had them w/o sedation, so it just depends on your doc, but if you want sedation, let your doc know beforehand. It almost takes longer to start the IV than it does to do the block. Make sure that no-one ever puts an IV or draws blood from your rsd arm. That's a no-no.

When I had my blocks, after the IV was started and the doc got there, the nurse gave me a short acting sedative. My doc pushed on my throat, which to me was the most uncomfortable part because they have to push on your trachea. Some docs will numb the area before inserting the longer needle needed for the block, but my doc only did that for the first of my 10 blocks. Anyway, then he'll insert the needle in your neck and push the meds. You'll feel pressure as the meds go in, and hopefully your arm will start to feel a warmish sensation, the temp of your hand will increase (they should stick a temp strip on it), and your pain will go away.

Afterwards, you should get what they call 'droopy eye' if the block is successful, and your neck may be sore for a few days.

One thing no-one told me about was that occassionally, the medicine can spread to your throat. It happened to me with my first block, and since no-one had told me about it beforehand, it scared me when I suddenly discovered that I was having trouble talking and swallowing. I wanted to let you know so if it does happen to you, you'll know it's just a temporary complication that sometimes happens, and it'll wear off and you'll be okay. Do let the nurse, and your doc know of it does happen though.

How long the pain stays gone varies greatly from patient to patient, but the idea is to get them to last longer with each block. If the pain comes back, call you're doc and get another block. My doc did a test block to see if it would help, and then we scheduled a series of 5 blocks... 2 per week. Pre-schedule your blocks if you can, that way, you won't have to wait weeks for another if your doc has a full schedule.

I hope this helps you relax some about the blocks. They really only take a couple of minutes to do and they aren't painful. You may or may not feel a little discomfort from the pressure I mentioned, but that should be it. I'll be keeping my fingers crossed that your block is extremely successful, and please keep us posted with how your block went.

Take care, and have as pain-free a night as possible.
Cathy