So fed up

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lionessdoe
lionessdoe Member Posts: 780
edited June 2014 in Lymphedema

My pain management doctor, who was also my son's psychiatrist for 15 years died suddenly at the age of 58. He was a part of our family for 15 years because he was also my son's psychiatrist. The grief and loss is palpable. Prior to that my husband almost successfully killed himself. It's a miracle he survived let alone all of the organs that shut down and the heart attack he gave himself. Everything revived and came back to normal, even his heart! Totally miraculous! Shortly after that my son had two pulmonary embolisms and almost died. Couple months after that I was in an automobile accident, lived but I'm still seeing a chiro. Couple monthes later, we were on a much needed vacation, we ended up driving all the way from Michigan's upper peninsula to Detroit Receiveing Burn Center because my son's hand caught on fire in a grease fire and he had to have a skin graft. He is healing very well thank God!

So here I am today seeing a new pain medication doctor for what I know is Radiation Induced Brachial Plexopathy and she wants to test for RSD instead and is pushing a pain stimulator implant. First of all they only reduce 50 % of the pain and the possible complications sound like a recipe for lymphedema flares. Plus she sent me home with no pain meds!

So I'm asking if anyone with lymphedema is a candidate for a pain stimulator implant? Sounds far too risky to me! Can anyone advise?

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited May 2012

    Lionesse - you've had quite the roller coaster of a year!  I'm so sorry.  I cannot answer your question about pain stimulators, but I can stand by you and care that you have gone through so much.  I hope you can find a solid answer to your pain difficulties. 

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  • KS1
    KS1 Member Posts: 632
    edited May 2012

    Lionsdoe, To paraphrase the title of Judith Viorst's chilren's book, what a Terrible, Horrible, No Good few years you have been having. I also don't know anything about the implant, but based on symptoms (pain, weakness, parasthesias, and sudden changes in color and temp of hand), a neurologist and pain doc originally diagmosed me with RSD. A physiatrist later did EMG testing and diagnosed me with surgical and radiation induced brachial plexopathy. I've always kind of assummed that the RSD was caused by the plexopathy. 

    For me, the pain is not constant, but comes in waves. I find counter-stimulation (stroking etc) helps somewhat with the pain. Also, I have discovered that if I am having a bad period, putting on my night garment (a solaris Tribute) can stop the cycle. The first couple of minutes of wearing it make the pain worse, but after 15 or 20 minutes, the shooting electric shocks subside. My theory is that the Tribute provides gentle all-over stimulation, but it's just a theory. (By the way, daytime garments do not have this effect and during a bad wave, make the pain worse.)

    For me, the truly awful, can't-stand-it, want-to-jump-out-a-window electric shock pain pretty much subsided within 6-12 months of surgery to be replaced with a pain that is kind of like when a limb is "asleep" and it "waking up." Now, I just get the electric shocks a few times a day and the Tribute stops it. I don't know how common this is, but maybe it will happen to you as well. good luck with all that is dumped on your plate. KS1

    PS There is a thread on RIBP that is pinned on the top of the LE forum that you might want to read.

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  • lionessdoe
    lionessdoe Member Posts: 780
    edited May 2012

    KS1,

    Thanks so much! I've been to the RIBP discussion board lots, but not lately. Will review for fresh posts later tonight at home! My pain is worse at night. I can't wear clothes unless they are extremely lightweight and inside out! The seams kill! I have become less and less tolerant of being able to wear sleeve and hand compression garments during the day because of burning skin pain. But my LD is mild (so the so called experts say), so I let it go when I can. The worst part of all of this is the muscle weakness and fatigue of my affected arm and hand. When I try to do my MLD, I no longer can manage the "Light touch" for the lymphatic circulation massage and my arm tires too quickly for the rest. Achy tired. Like I had over worked my arm all day long when clearly I haven't.

    In my reseach today I did find that even TENZ is contraindicated w/lymphadema because it stimulates lymphatic flow. As I'm sure all of us know, TENZ is electric stimulation outside the body, rather than inside implants. So I guess I found the answer to my question. I'm trying really hard to remember the Gentleman's name with the blog from Lymphedemapeople. Thought I'd bring it up with him! I mean this is scary stuff! And I think we should all be aware of it and the complications or whether it is contraindicated or not should some unknowing physiatrist suggest one of these implants to any of us!

    The idea of someone's arms blowing up because some Rehab doctor just wanted to help with pain ......... well, I think it just needs to be addrressed properly.

    BTW, I've never had any sudden changes in color. Temp changes are triggered by handling something cold, or by being in the cold. I have a special thermal glove my hubby got me that I wear to warm that hand back up again. But it can literally take hours. Cold being the relative term! It can happen in the 60 - 70 degree outdoor temperature just by exposure! My sister has RSD. But the feeling that someone ispulling on my hand and stretching on it all the time causing me to feel like my shoulder is falling out of it's socket has nothing to do with RSD. Good Lord, please tell me it's not possible to have lymphedema, RSD and RIBP at the same time!

    Hoping for something better!

    Kcshreve,

    As long as I can still keep at this keyboard ......... I can still say thanks! Thank you!

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