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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

What can I expect?

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Old 09-14-2004, 11:29 AM   #1
Join Date: Jun 2004
Posts: 59
cuvanni HB User
What can I expect?

Friday I have an appt. with a pain management specialist. My Orthopedic Surgeon has referred me. I am still having pain associated with a bunion osteotomy and hammertoe surgery in May. The OS said I am having more pain than I should have at this point. I believe the pain specialist is going to check for RSD. What can I expect on my first visit? Any information would be appreciated to help me prepare (mentally) for this visit.....Thanks....

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Old 09-14-2004, 12:09 PM   #2
Join Date: Jan 2004
Location: Coffeyville, KS
Posts: 275
msdrea83 HB User
Re: What can I expect?

when i went to see my pm's for the first time, they pretty much just asked a bunch of questions, see what kind of info u give them as far as what's wrong, and then checked out the affected area. nothing too exciting, let them know what kinds of meds you're on or have taken for the pain... what works what doesn't. they should have all the info from your os so i doubt they'd run any tests. my pm's have never ran any tests, rsd doesn't really show up or not show up on any particular test.the appointment should be a breeze, nothing to worrry about or be nervous over. hopefully it'll be something other then rsd, but if not jump on the treatment because the harder you attack it at first the better.

Old 09-14-2004, 05:11 PM   #3
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Join Date: Jun 2004
Location: Wisconsin
Posts: 47
despnhurtn HB User
Re: What can I expect?

Hi Cuvanni - I'm Beth, I replied to one of your posts over on the foot board this summer when you were told to weight bear and I gave you a few exercises to try. Remember? Anyway, I had a bunionectomy (Austin) and baby toe lift on March 23, 2004 and through months of pain I saw another foot Dr. that dx me with RSD, also my great toe met head was not totally healed. I saw a pain management dr. for first time last week. My case is
a little complicated because this pain Dr. is trying to get me in to see an
orthopedic Surgeon that also specializes in RSD, he is booked solid for next five months. But they believe my first dr. pulled the tendons too tight during the bunionectomy, plus I have scar tissue issues and my met head still needs some time to heal. Because the tendons and scar tissue would normally need surgery (they are causing horrible pain on top of the RSD that is in whole foot) my pain Dr. says I can not have surgery due to RSD will probably get worse and/or spread. He wants me to see this special OS to see what we
can do outside of surgery. But anyway, my pain management Dr. gave me about 20 pages of questions about my pain. He mailed it to me one week
before my appointment. Then he spent the first 20 minutes of our appointment looking over my answers and my previous exrays. I have terrible osteoporosis that has already set in. He could see it worsen in each of the
8 exrays taken between 3/23/04 and 7/12/04. My signs and symptoms are
pretty classic RSD. My foot burns and turns purple, etc. So my first visit
did not spend any time wondering if I had RSD, I had all the signs. So Pain
Dr. started me on neurontin, licodaine patches, sent me for special support
hose that they measure you for etc. to help keep blood from pooling in foot
when I sit. He has me Hydrocodone for the acute part of the pain for my
deep bone pain in great toe. I will not remain on this once we can have
the OS take care of that issue. So I believe your Dr. will be asking lots of
questions to determine if the symptoms are there for RSD. Not everyone has them all so he'll need to ask lots of questions. My pain Dr. and his staff, meaning I was with him or his nurse or his intern for a total of almost 3 hours. They were very thorough even though I brought in their packet
filled out ahead of time. Sounds like you are getting caught early which
is good. What kind of pain are you having? I am having two issues
with pain: Bunionectomy: Toe is still half stiff, big bone under toe has horrible pain throbbing in big toe when weight bearing, can only be on it about five minutes if I don't flex toe, RSD: nerve pain in foot, circulatory problems with
aching, foot turns purple, Burning. Drs goal will be to determine what pain is
from any issues of the toe and what issues are RSD. Let me know if I can
help with anymore to you...Beth

Old 09-15-2004, 06:31 AM   #4
Join Date: Jun 2004
Posts: 59
cuvanni HB User
Re: What can I expect?

Thanks for the replies. Beth, yes I do remember you from the foot board. It's terrible that you have to wait 5 months to see a doctor. My OS is a well known foot and ankle surgeon but I guess he is not an expert on RSD so that is why he is referring me to a pain specialist. About a month or so after my surgery my foot would turn purple and my toes would turn almost black. Now I only have a slight redness. I have certain areas on my foot that burn. My foot does not burn all the time. Mainly when I'm limping around but sometimes when I'm just sitting. I also have a hard time getting going after sitting for a while. My foot is extremely stiff and aches. I have been in PT for 2 months. Actually today is my last visit. The PT is getting with the OS to see if they can petition the insurance company for more PT visits. The PT said the range of motion in my foot is unacceptable. The OT also mentioned that he was concerned with the appearance of the bone on my last x-ray. Did you ever go to PT? I'm also trying to avoid additional surgery for the scar tissue. I'm so over this not be able to get around like I use to. The past 4 weeks we have had to evacuate twice due to the hurricanes. Even though Ivan is going to hit the central gulf area we may still have a problem with high tides here today and tomorrow. We're on the water about 80 miles north of Tampa. Frances really did a number on our yard and caused minor structural damage. I'm so frustrated because my hobby is gardening and I can not physically get out in the yard and start cleaning up. With another storm right behind Ivan I guess it doesn't matter anyway.......I'll let you know what happens at my appt. on Friday.

Old 09-15-2004, 10:13 PM   #5
Junior Member
Join Date: Jun 2004
Location: Wisconsin
Posts: 47
despnhurtn HB User
Re: What can I expect?

Wow Cuvanni, you sound so similar to myself. I don't always have burning either. I'm stiff and range of motion is not nearly enough. My problem began with my first foot dr. not diagnosing me properly. Yes, I had 3 1/2 months of PT, both my dr. and PT kept thinking I just needed aggressive PT and time. Both missed all the signs of RSD. Not so upset with PT, but really upset with DR. as purple foot and osteo progressively getting worse every two weeks on
Xray plus the awful pain with no sleep are all signs. I don't swell anymore. My toes were gray, never to black. My skin sensitivity is much much better. My RSD dr. says we should not even have a needle put into our RSD foot so
be very careful. Whatever Dr. recommends, check it out with this board and
educate yourself from all the info on RSD. It really sounds like you have it, but that it has "simmered down" just as mine has. Yours sounds exactly like mine. I'm still waiting to hear if the good OS will see me to see what he decides what to do on this stiff toe issue, I don't know what they can do
for tendons too tight if they don't do surgery. I have had so much PT I can't imagine pt doing anymore good. I will be curious what your new PM dr says
on Friday especially what he will recommend to your OS to take care of your toe issue that will not reaggravate the RSD. Like a cat chasing its tail, we
are darned if we do and darned if we don't. I will keep you briefed on everything in hopes it will help. Today the Dr. said I should keep weight off
Met head, which is hard and still be up. I borrowed a boot that keeps weight on heel of foot. Got it from my sister, her OS gave her one when she had
hammertoe surgery. I had one with my fractured Met Head, but it went to
my knee and was heavy and inconvenient. I love hers as it is more like a shoe than a big boot. My PM wants me walking as much as possible to get
my circulation going- he says this is vitally important. Will get my specially fitted support hose that will help blood from pooling in foot (causes foot to
go purple). So between keeping weight off met head with special boot, taking neurontin (anti-convulsant for RSD nerve pain), special hose, taking Oxycontin for pain(DR. switched me from hydrocodone today) and being up as much as possible, this is supposed to handle the RSD. WE will see....maybe you could see about a shoe/boot that keeps weight on heel until your great toe pain can be dealt with. That will have to be figured out
or we will never get a full handle on the RSD. Let me know how it goes FRiday, will be interesting to compare notes....Beth

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