CRPS better post op

[Faith]

I am beginning to believe I have CRPS\RSD. Those who have this and have had decompression surgery did the surgery help your CRPS even if your PN pain was unchanged?

[nyt]

I have CRPS in both of my legs. I had a 4 hour infusion of Ketamine during my right-sided decompression surgery with Dr. Hibner. It did help the extreme hypersensitivity I have in the medial aspect of my thighs and some of my leg pain. I am 8 weeks post-op and it has pretty much worn off. So far the surgery has made no difference in my CRPS symptoms in my legs. Might be too soon to tell plus I have multiple pelvic and leg neuropathies and maybe in my case none of the CRPS symptoms would resolve until all the underlying causes are fixed. On the other, I might have so much spinal cord wind up that no surgery will fix CRPS in my legs.

[Lernica]

Faith,

I'm sorry to hear about this development. It is one of my greatest fears. What makes you think you have it? Lately I have developed very tired and achy legs, a new symptom that my pain doc/neuro cannot explain. Is this something that you experienced?

NYT, I'm sorry that you have RSD in your legs. How would you suggest avoiding it from developing?

[nyt]

Lernica, sadly there is almost absolutely nothing known about what causes CRPS/RSD. One of the reasons it became caterogized into CRPSI and CRPSII is because CRPSI there is no known cause for the development and CRPSII there is an injury such as a surgery that started it. There are thoughts out there and some scientific evidence that suggests it is mediated by the immune system and that is why it can spread to other limbs from the site of origin. This is one of the reasons individuals with CRPS are very reluctant to have surgery. Some think there might be a genetic predisposition. The only thing the dr.'s think might help decrease the likelihood of CRPS is early treatment with medication and PT but no hard scientific data to support these general observations by pain specialist, at least from what I've read and gathered from discussions with pain dr.s. Currently, all treaments for CRPS are palliative and there is no known cure.

[Faith]

Faith,

I'm sorry to hear about this development. It is one of my greatest fears. What makes you think you have it? Lately I have developed very tired and achy legs, a new symptom that my pain doc/neuro cannot explain. Is this something that you experienced?

Lernica,

My biggest symptom is burning in my feet and most recently my legs (especially my calves and knees). Sometimes my feet are tingly and feel like they are asleep. My legs have huge knots in the muscles and if they are massaged it seems to help my burning pain a little. After standing for a few minutes the burning increases. Sometimes I will get swelling in my feet/ankles after standing for a while too. And my knees will get almost a mottled look to them turning reddish/purple with little white dots. As for tired and achy, My legs do get tired and achy, but my pain is much much more than that. But unlike NYT I don't have any hypersensitivity. I've read some people with CRPS can't even stand to have pants touching their legs. But I can take (and like) deep muscle massage in my legs so maybe mine isn't CRPS. But I've been told I have central sensitization by several doctors. I thought maybe I had fibromyalgia because I have muscle pains all over my body (but not tender spots), but the more I think about things and my history I think CRPS makes more sense. I sure hope I am wrong though.

There are thoughts out there and some scientific evidence that suggests it is mediated by the immune system and that is why it can spread to other limbs from the site of origin. This is one of the reasons individuals with CRPS are very reluctant to have surgery. Some think there might be a genetic predisposition.

I worry about that as well and don't know if I would ever go through surgery because of it, but I am only 29 so I can't imagine not at least trying something. I have thought about a sacral nerve stimulator a lot, but I think I'd rather try surgery first and then do a stimulator if it fails. I don't know. I tend to think CRPS is more of a genetic predisposition personally.

NYT, could you explain what all the abbreviations mean in your signature. I have been wondering that for a long time. Or could you share more how you first developed these neuropathies? How did you get diagnosed for the neuropthies in your legs?

[Violet M]

Faith, here is a link to an article on central sensitization that you might find interesting. I believe that is what I had.

Oops, sorry, that link didn't work -- maybe you have to have a medscape account. Here's a paragraph from the article:

Thus, the major features triggering inflammatory pain include damage to the high-threshold nociceptors (peripheral sensitization), modifications and modulation of the neurons in the nervous system, and amplification of the excitability of neurons within the CNS. This represents central sensitization and is responsible for hypersensitivity, in which areas adjacent to those of the actual injury hurt as if injured. These tissues also can respond to stimuli that ordinarily do not produce pain, such as a touch, clothing, light pressure, or a hairbrush, as if they are painful (allodynia).

I had shooting abdominal pains, burning, numbness, and shooting pains in my legs and thighs, severe allodynia to where I did not want anything or anyone to touch my butt or pelvic area, and hypersensitivity to noise so that I would jump when the phone rang. PNE surgery has taken most of it away although I still wake up in the night with burning in the sacral area sometimes but if I get up and move around it goes away.

[nyt]

LAVH - Laprascopic assisted vaginal hysterectomy; TOT - Transobturator tape bladder sling; IL- ilioinguinal nerve; IH - Iliohypogastric nerve; GN - genitofemoral nerve; PN - pudendal nerve; BLL - bilateral lower extremeties; RSD - reflexive sympathetic dystrophy (old name for CRPS); LFCN - Lateral femoral cutaneous nerve. I think I got all the abbreviations.

My problems started immediately after my hysterectomy and bladder sling. The bladder sling was done at the same time as the hysterectomy. The neuropathies in my legs were diagnosed by EMG's, nerve blocks and distribution of pain.

There is some published literature that individuals with carpal tunnel and CRPS that when the carpal tunnel entrapment is relieved by surgery the CRPS symptoms dramatically improve or resolve. Dr. Dellon had an interesting retrospective publication on patients that were diagnosed with CRPSI and by definition there CRPS should not be the result of nerve entrapment. However, he found that 80% of them had improvement in their symptoms after surgery suggesting they really had CRPSII. Some patients in this group had multiple surgeries on the same limb to relief all of the entrapments. Since I know my CRPS is not type I, I am hopeful that if we can get all my neuropathies under control, most likely by surgery, that I will see improvement in my CRPS symptoms.

The molted color and swelling are two classic signs of CRPS. CRPS is classified as neuropathic pain but I told Dr. Hibner's NP that CRPS pain is very different from the neuropathic pain I have. It gets extremely painful and quite quickly if I stand too long. The CRPS pain is very hard to describe and wish I could put it into words for people. I am impressed you can have deep massage so keep it up. You want to prevent any hypersensitivity. The hypersensitivity in my legs is better than what is was 3 years ago. I can wear sweat pants now, no jeans. For almost 1 year while I was still working I mostly wore dresses. Just not because of my legs but I couldn't stand to wear underwear. My husband liked that I am at the point that I use a wash cloth on my legs and perineum every day in the shower to try and keep worse of the hypersensitivity at bay. I'm not sure I will ever be able to tolerate deep massage on my legs. I get my legs iced once a week from my massage therapist and it is wonderful. CRPS patients will tell you know ice but I have not found any published literature that states no ice so I'm not sure where that comes from.

I know Dr. Hibner and Dr. Antolek are quite aware of the CRPS/RSD issues. Dr. Hibner has been very, very proactive with trying to keep my CRPS under control and I am forever greatful for his recommendations. If you decide to have surgery make sure who ever does it is aware there is a possibility that you have CRPS. If you don't have a pain specialist that is treating what you are seeing, take yourself to the dr. and get an appriopriate work-up and diagnosis for the CRPS. If you ever need to be disabled you will need this in place for disability.

[Faith]

get my legs iced once a week from my massage therapist and it is wonderful. CRPS patients will tell you know ice but I have not found any published literature that states no ice so I'm not sure where that comes from.

Yeah, I ice my legs all the time and it definitely helps. That, rest, and massage are the best things I do for it.

If you don't have a pain specialist that is treating what you are seeing, take yourself to the dr. and get an appriopriate work-up and diagnosis for the CRPS. If you ever need to be disabled you will need this in place for disability

I have a pain doctor who did my blocks, but he seems to be mostly interventional. I have seen several doctors about all my "other" (non-direct PN) pain, but they just say central sensitization. How do you get an appropriate work up and diagnosis for CRPS? Is that something Dr. Hibner would/could diagnose? I see him in about a month and a half. I haven't seen a doctor for several months and am just trying to hold out till my appt with Hibner because I'm tired of wasting money/time on doctors that can't help me. Thank you for your help and advice. I am afraid I may end up on disability soon. It's hard to imagine as I'm only 29, but the inability to stand for very long and sit makes working very hard (especially work as a nurse!)

[nyt]

The diagnosis of CRPS is based on symptoms. Dr.'s are divided on the use of bone scans for diagnostic purposes. Some dr.'s, mostly chiropractors, use thermal imaging for diagnosis but most dr.'s don't consider this valid. Don't know what type of nursing you do but any of the residents or attendings helpful?

My massage therapist diagnosed me with CRPS/RSD and it was probably another 1.5 years before I got the "official" diagnosis from Dr. Howard after showing him the color of my legs at one of my visits.

When I saw Dr. Hibner I was standing when he entered the exam room and we did the usual greeting. I told him right at the beginning of the conversation I would like him to look at my legs because I really needed to lay down. I pulled up my skirt and showed him my slightly swollen molted reddish/bluish/purplish legs. I then handed him pictures of a heat rash I get that runs along the nerves of my legs when the shower gets too hot. He said to me, "Oh no, you have RSD in your legs." I then said, "I need to lay down, my legs really hurt." Of all the pain specialist I have seen Dr. Hibner has been the most pro-active in trying to figure out how to get them to settle down, for which I am thank ful.

I do not know the difference between "central sensitization" and CRPS, if any.

[A's Mommy]

I would have to just add my two cents: Dr. Hibner IS VERY PROACTIVE with helping us with ALL aspects of this disease, including CRPS/RSD. Next time I go to Phoenix, I will be all better and take him and his anesthesiologist, Dr. Peterman, out to dinner. Oh, and I will SIT cause I'll be ALL BETTER! I just love them. Request Lynda Peterman for your anesthesiologist if you have to have any procedures that require general anesthesia. She is a wonderful, Christian woman.

Things to check before you go to Phoenix:
1) Does your insurance cover potential Ketamine infusions
2) Does your insurance cover Botox injections
3) Buy extra seats. Don't mess around.

Praying as always ...

A's Mommy