Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-18-2007, 09:03 PM #11
tayla4me tayla4me is offline
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Hello and welcome,
Sorry you have the extra worry about the discs. I presume you have had an MRI which will give the neurosurgeon some idea what is pressing on what and whether he will be able to do something to help you.
As carouse said, if there is no cord or nerve compression then often times I believe it is best to leave well alone but if there is some compression then he maybe able to help reduce the pain you don't need to have as well as RSD/CRPS.
My sister had herniated discs between L3-4-5 and was virtually crippled by the intense pain she had, she saw a neurosurgeon who did a disectomy and she has been perfect (back to golf) since.
I realise that her not having RSD has made her recovery much easier, I would hope your neurosurgeon (if you need surgery) will refer you to an anaesthetist who knows about RSD and will know what type of pain relief and anaesthetic you need so as to lessen the chance of a flare.
Heaps of luck
Tayla
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Old 09-18-2007, 09:43 PM #12
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Hi wreta,
welcome! my rsd started with nerve damage in my hip area during surgery, and my primary pain is in my feet where i get the swelling and thus pain galore! so go figure! it is the joy of rsd, to watch it do whatever it wants!!!
Joan
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Old 09-19-2007, 03:00 AM #13
Wreta Wreta is offline
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Default Thank you all!

Well, I met my neurosurgeon yesterday and got to see the MRI. The hernia is small, however it is (or was?) pressing on the nerve root(?). The doctor (female) was not really worried about it, since most of the symptoms related to this enjury have gone away, I do get pain if I tilt my head all the way back but that I can avoid, and the pins and needles I can live with. But, oh joy, I get to have my third Enmg in two years to see if there is something else compressed, she said that this disc can only give me pain in the thumb, not the other fingers. I don´t think they are going to operate, besides, its not like I´m going to get totally healthy anyway, this disc is the least of my problems..

Luckily, almost all of my doctors (neuro- and orthopedic surgeons and painclinicdoctors) are at the same university hospital so they all have the same info about me and can consult eachother. Most people in Finland are sceptical about the state of Finnish healthcare, but I have had excellent care all the way and feel really blessed for that. The taxes here are high, but the one time I had a series of blocks they costed me 6€ each

Septmystic, thanks for the welcome, and you are right, even these first few days here have really lightened up my life!

Carose, three discs?? That must really have hurt in a serious way... We have a saying here that bad things happen in sets of three, but hey, enough is enough! I´m sorry to hear about your... every different pain? But thanks for reassuring me!

Tayla4me, thanks for telling me about your sister, it was good to hear that her operation was a success, every bit of good/reassuring news is welcome here! Thanks for the good advice also, it is really important to know what oneself does not know and what that or this doctor doesn´t know about this disease, to really get the best care possible, having this ***** disease is problem enough. Thanks for the also!

JOAN_M, glad and sorry to hear that I´m not alone with this! I sometimes get a little paranoid about this, since there is no logic in the symptoms, I have wondered many times if I am somehow making these feelings up... I know that I`m not, but isn´t it scary that so many people think that you are? With a herniated disc I have gotten a lot more sympathy than before only because people know what it is...

I have to stop writing now, my arms are hurting, but thanks for caring, I hope that I can return the favor sometime!
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Old 09-19-2007, 09:22 AM #14
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Hi Wreta,
I Have A Degeneration Of L4 And L5, And Had Two Facets Blocks In My Back. I Thought It Was The Rsd Spreading Too But Took A Chance And Went To The Back Clinic In Boston And An Mri Showed It Was Not Rsd. The Blocks And Some Simple Exercises Keep My Back Usable And Fairly Painless Now ... But I Too Got More Sympathy And Concern For That Than I Do For Rsd And That Makes No Sense At All To Me. I Think Rsd Is Just Too Darn Hard For People To Wrap Their Mind Around. I Know I Still Do Not Understand It!
Keep Me Informed On How Things Go. I CARE.
Joan
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Old 09-19-2007, 03:24 PM #15
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Default HI and welcome

Hi , I just wanted to recommend that the surgeon not only know about RSD and be sympathetic about it.. I had port surgery the post operative pain was beyond imagination- later the surgeon said I really should have put a marcaine pump in you because of your rsd. so please make sure the are adequately prepared and willing to take care of your increased pain due to your RSD. Really dont want to scare you but my pain, post surgery, was shocking.Prior to rsd I went through surgery like it was nothing. take care, cz
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Old 08-11-2018, 06:42 PM #16
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Default CRPS W/ L4-L5 herniated disk

Hi everyone. My husband was injured in 2015 had a forklift fall off a Calvert with him in it crushing his right leg. He was diagnosed 1.5 years later with crps. in May they Said he had a herniated disk that was from the accident, they are doing a emg on him but what should I expect? I have been by his side threw it all and the back is what scares me his pain has gotten far worse then i have seen yet he doesn't sleep barely eats, and trying to get workcomp to approve anything is killing him, he hasn't gotten any treatment from april 2017 until April 2018 they wont pay him and he has seen the doctor twice and a mri, they sent him to a spinal specialist and he is ordering all theses test, I'm So scared for him, as its getting hard for him to walk now.
Sorry for the run on I'm not good at writing at all.
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Old 08-20-2018, 02:24 PM #17
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Wreta,
If it helps for you to know, I had brain surgery with CRPS, but I had no choice. I would have preferred not to do it, but we don't always get choices.

Like you I have CRPS in all 4 limbs. The only reason mine is not worse is because I take LDN, I constantly exercise and I go to aqua PT. And I rest.

I found out the hard way that this is not a disease that improves becaused you pushed yourself over the edge, just the opposite you really need to rest after activity.
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Old 08-20-2018, 02:25 PM #18
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Quote:
Originally Posted by Cindyb2015 View Post
Hi everyone. My husband was injured in 2015 had a forklift fall off a Calvert with him in it crushing his right leg. He was diagnosed 1.5 years later with crps. in May they Said he had a herniated disk that was from the accident, they are doing a emg on him but what should I expect? I have been by his side threw it all and the back is what scares me his pain has gotten far worse then i have seen yet he doesn't sleep barely eats, and trying to get workcomp to approve anything is killing him, he hasn't gotten any treatment from april 2017 until April 2018 they wont pay him and he has seen the doctor twice and a mri, they sent him to a spinal specialist and he is ordering all theses test, I'm So scared for him, as its getting hard for him to walk now.
Sorry for the run on I'm not good at writing at all.
See if you can get him low dose naltrexone.
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