Hi, I am new to this forum, and basically new to forums in general. I have never done this, although I have been in Technology since 1978. I am a 57 grandmother who use to be very active, getting up at 4:30 every morning to workout for 40 minutes. I have a very stressful job in Infrastructure Technology, working around 50-60 hours a week. Last March, 2006, I was involved in a car accident. A lady cut me off and we collided. My beautiful new 300z convertible had around $16,000 worth of damage. Anyway. my pain revealed that I had Spinal Stenosis. Never had pain down my leg before, always only disk and muscle (not to say this isnt painful also). Well, I was told that I needed surgery. Postponed till I couldnt walk anymore. Wasnt a candidate for epidurals. Had 5 level lumbar laminectomy L2-S1 on Oct 30. Spent 8 days in hospital (was told it would only be 2). Had some many complications. Was told by surgeon that 2 weeks after surgery I can start walking and getting back to work. So I went for a short walk, and all hell broke out. That's when the excruating nerve pain started in my right thigh. I get very sharp cutting pain (like Edward Scissorshand is having fun), along with painful pins and needles, and burning. I cant even touch my thigh without causing more pain. Couldnt do anything. Went back to surgeon, took MRI, was told that his surgery was successful, didnt know why i was in pain, go figure it out myself, BYE BYE. Then went to Neurologist, took EMG (THE most painful test ever, had more pain after). He told me I had RSD, and dont get depressed, and get pain management and pt. Went to Neurosurgeon, told me that I should of had only a 2 level surgery, my recovery time should have been 6-8 weeks of doing nothing, I didnt need more surgery (every time I twisted or bent I get a very sharp cutting pain in my leg and then cant walk for a day), had chronic pain, go seer pain management and pt. So now I'm getting pain management (on Lyrica, Kadian, and Percocet). Had 3 series of 6 nerve blocks, all which left me in more pain. Tried PT, which caused me more pain also. Its 3 months now. I was released to work from home. Dont know how I'll be able to go back into the office. Cant walk from meeting to meeting. I am an A type personality that bounces off walls.

So, basically, HELP!!!! Has anyone been in my situation, any suggestions? I really dont know where to go from here. I guess I am getting depressed from all this. I'm not use to just sitting or being in so much pain. I was the one who yelled when people smoked, or took the elevator. My daughter is having my 3rd grandson (she lives in San Diego), and I CANT go there to help and see him. Both of my other 2 grandsons (10 and 4), I saw them at 5 minutes old. I held them, I helped out. Now I cant. This is NOT FAIR!!!!!!


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Today, 09:02 AM

Hi Their,
I want to welcome you here. Hugs. Roz

Hi, Laurie:

I don't have RSD, but I do have spinal stenosis in my lower back and
degenerating discs. I also have pain in my left leg. It starts in my
groin and goes down to just above my left knee. I've been to Pain
Management and had an RFA done, to cauterize the nerves in my
lower back that are causing the pain. My back feels much better
(not 100%, but at least I can get out of bed/chairs without falling
on the floor ). The doctor was only expecting a 50% reduction
in pain after the RFA, anyway. I can live with that.

I recently found out that the pain in my groin was a problem with
my hip flexor (sp?). So, I'm starting PT again and hopefully things
will work out much better than the last time. I also found out that
I have some bursitis in my right hip,from the way I walk when my
hip flexor acts up-which is most of the time.

Right now, I'm using a quad cane to get around and the Physical
Therapist I went to earlier in the week suggested that I get a
second one (one for each hand) to help with my balance. I had
tried a walker, but it didn't help and the hallways/doorways in
this house are too narrow for the walker, anyway.

Ask your Pain Management doctor if you're a candidate for the
RFA procedure. It really did help me with the pain in my back.
If it weren't for the bursitis and the hip flexor, I wouldn't be in
as much pain as I am now.

Good luck!

Welcome!! This forum is great- so many helpful people here!

In was recently dx with RSD, too (dx in Nov. '06).It's hard, but hang in there!

Welcome laurie,
Nice to meet you - I hope we can help, and we can always give support.
Sometimes we need to adapt and become type C instead of type A.
But we usually go thru the 5 steps of grief/loss on our way to adapting.

Have you had any physical therapy or a evaluation by an expert PT ?{or expert chiro}

There are alternative therapies also that might help for the pain-
HBOT, Low level laser, TENS...

much info is listed our useful sticky thread -
http://neurotalk.psychcentral.com/showthread.php?t=247

I was doing physical therapy for 2 weeks. they used different methods to desensitize my thigh (it hurts just to touch it. any clothing or blankets hurts). They did massages (which hurt like hell), TENS, and stretching exercises for my quad and hamstring. When I did these, I couldnt walk for days. I think this pain cam from my surgery site which I think I have instability. But it then agravited my RSD in my thigh. At this point i am not going back. What I am going to do is more research, and then look for specific pain management and pt that specializes in RSD, not just any pain or therapy. I dont think the group I went to really understood what I have and their therapy was not geared to my specific pain.
I just found this website, and I am going to make use of the information and support.
I going to be putting specific questions in, but right now, I wanted to just say hi, and thanks for the support.

Hey

just wanted to welcome you here - it is a brill site to be part of (though we all wish we weren't here!).I have full body RSD after a fall 5 years ago.

Hope that you find the info you are looking for here

Rosie xxx

Hi and Welcome,

I have RSD also. I was diagnosed after a sports inquiry and many surgeries to correct, which was corrected, but was left with a somewhat serious case of RSD. I am with an excellant Pain Dr. who specializes in RSD among other pain conditions.

I also had a go,go,go type personality before all this, it's hard to get adjusted to.

My suggestions is, to seek a Pain Dr. who has experience with RSD. Depending on what part of the country you live in try to seek out teaching hospitals. I see Drs in NYC and also PA. THere are many good RSD doctors just don't go to any Pain Dr. Use the phone don't run around to a lot of appts. To stressfull.

If you live on the East Coast of course NYC, Boston Mass-General, John Hopkins-MD,Tampa-FL( I don't know to much about the FL group). In the MID-WESt of course Mayo-CLinic,MN,AZ and FL branches, CLeveland Clinic-OH. I hope this helps. I have had RSD for almost 4 years and I have done a ton of research.


I truly wish you the best.

Ann

Thanks so much for your responses. Right now I feel like my Pain Mgmt group doesnt really have much experience with RSD. Yes, they tried Nerve blocks (none worked), have me on Lyrica (I think my dose needs to be increased. taking 200 mg twice daily.), also on Kadian. They sent me to pt, which only agravated my pain.

So, does anyone know of a good pain management doctor in palm beach. I live in Lantana.

hi laurie,
i feel your pain. i am a 54 year old gramma of 6 boys and i know all about losing the person you were and becoming something you are not happy becoming.
i was a very busy icu and post op nuse for years and then came to a dead stop.
that was 10 years plus ago and some days i accept it and some days i don't and i think i will always feel that way.
we can only adapt and do what we can, some days more than others.
your personality will make you more frustrated but it will also give you the push to stay active and fight the good fight.
i am glad to meet you and hope you find some help and support here.
joan