[lostmary]

Hi all,

Went to my pm today to get the results of the mri on my back. He said my lower back is fine, and that the pain has to be from the spread of rsd. Yeah...I told him it was, he didn't believe me. I also now have 2 names of drs that do the morphine pain pump. I really think that is the way I'm going to go. I do't want another scs. 2 was my limit, and as rsd is spreading up my back to both shoulder blades, I think the pump is going to be the answer. I'm hoping to hear something from one of the drs in Richmond sometime this week. I just had everything faxed to him this afternoon, so I hope he can look at it and let me know if he can help. I'm really happy about the mri results but not that it has started to spread again.

Hugs
Mary

[GalenaFaolan]

It's nice the docs actually caught up with what you already knew! lol It's also good to know as well that there's nothing else going on, especially in the back. Sorry it's spread. I know others who have the pump and they love it. They say it's the best thing that they ever did. I'm sure it'll be just as good for you.



Karen

[SBOWLING]

No one knows our bodies like we do. You know what the RSD pain is like and you knew it had spread. It sounds like you have a plan and I hope you get the relief you deserve.
May God bless you as you work to manage your pain.
Take care,
Sherrie

[Jennelle]

Sorry to hear about that spread. I know that the dr still doesn't believe mine spread to the other arm...he is putting me through all the horrible tests again just to make sure (bone scan, EMG, etc...) Why is it that they don't believe us when we know our bodies better then they do! As a peds nurse I always told the parents that they knew their child better than I did and if something seemed off to let me know. Wish all dr would take up that theory. I even told him it was all the same symptoms!
I am sad to hear that this means a harder time for you but I guess it is better to know then not. I didn't know that a morphine pump was an option over the scs...is it harder to get them to do than and scs as far a approval? I think I would be more up for it too. I did talk to a scs rep. and he said that they are getting smaller and smaller. He also said that he knew a guy who water skis every morning with his scs and has never had a problem. I guess the big issue is letting it heal enough that your body forms a scar around the electrodes to keep it in place.
Hope all goes better for you....you're in my thoughts!
Jennelle

[angelrsd]

hi mary
im sorry that your RSD is spreading hang in there hun!!!
i dont know if you know i have a pump its not morphine but fentanyl because of a severe allergy to morphine. the pump has worked for me it has helped me be able to do more. granted that i do still have pain and i knew from the beinging that it wouldnt be a cure by far. but it has helped me be able to things that i couldnt do with out it.

on to the surgery this is a Major surgery period its a long recovery the first time they put it in. there is a trial just like with SCS so they get the med combo right they can use all kinds of things. i have had mix of fent and colonidine this helped but the drs i had inbetween clinics messed it up so it had to come out . anyways you can pm me anytime you want to ask questions.

i havent had an problems out of my pump. and there is less likely hood of something going wrong with the pump vs. SCS in my own opioin.

hope this helps

carrie

[dealingwithtos]

Hi Everyone,

Mary, I've also been having problems with my back. I had the SCS implanted in Nov 08. You might have read from previous posts, but I also have horrible pain, sensitivity in my back. I just went to my pain specialist/surgeon who implanted the SCS and she said that RSD doesn't spread that way - only to limbs. I told her I have the same symptoms as my RSD. She thinks that I atleast sprained my back and possibly have a compression fracture. I have a CT can today.

I suppose I'll get to the same place as you where the tests come back normal - thus hasto be RSD. I come out doubting myself and how I feel. I end up saying "I'm not the doctor." It just seems that there are others out there - you, Denny (another member), that have RSD in the back. How can they say that it's not possible? I really wish there was more literature out there that is accurate and not just that this disease is in the limbs.

I'm sorry that you have RSD in your back. I really hope that you find the right person to implant your pain pump and that it helps. Please keep us updated.

[lostmary]

I didn't have any real pain in my back until I got the scs implanted. Now that I have it out, it hurts (rsd type) where they implanted the battery, (2 places), and where the leads were. They had opened my back due to the infection of the 2nd one. I have scars from where the bra goes across the back, down to the tip of my toes. It has also now spread to my should blade area. It really burns a lot. My dr was the same as yours. This is a pain spec. How they don't know it spreads is beyond me. He said it does spread, and checked both of my feet, where it started. They were both cold as anything, and I had heavy socks and athletic shoes on. once he saw the mri was clear, he had no other option then saying that it was indeed the rsd. I felt so happy to hear that. Not that it spread, but that I was right. Now I'm looking to get the pain pump. It is supose to be really good, and it works wonders for the back pain.

Hugs
Mary

[dennyfan]

Dealingwithtos, I am sorry your doctor is making you doubt yourself. Let them run their tests. Then they will see that you were right & they were wrong. My doctor has never said to me that RSD doesnt spread that way. He actually will ask me where the pain has been the worst. Right arm & shoulder ( where it started (fyi), back, left arm or right hip buttock). The worst part now is my right shoulder & my back. Its surpassed my right hand which is the sight of the original injury. I have CRPS Type II. I had a severe right hand crush injury. I told you I think they redamaged a nerve in my neck during the trial. They found it during a nerve conduction study. I kept telling them I had pain & numbness down myleft arm. MY PM doc didnt belive me my Primary did. The PM doc did the study & couldnt argue anymore with his own findings. He felt so bad. He knew exactly what had happened. Hang in there. You will be proven correct. You know your own body better than anyone. Take care.
Hugs, Denny

[CRPSbe]

I'm sorry about the RSD spreading. My RSD spread in 2008, from both legs to both arms and hands. I am undergoing treatment with calcitonin. That's what they usually prescribe here, at first. Luckily it's under control with the calcitonin, but so far it hasn't gone into remission yet.

I hope they find something that will stop it from spreading!

[Em68]

Originally Posted by lostmary

Hi all,

Went to my pm today to get the results of the mri on my back. He said my lower back is fine, and that the pain has to be from the spread of rsd. Yeah...I told him it was, he didn't believe me. I also now have 2 names of drs that do the morphine pain pump. I really think that is the way I'm going to go. I do't want another scs. 2 was my limit, and as rsd is spreading up my back to both shoulder blades, I think the pump is going to be the answer. I'm hoping to hear something from one of the drs in Richmond sometime this week. I just had everything faxed to him this afternoon, so I hope he can look at it and let me know if he can help. I'm really happy about the mri results but not that it has started to spread again.

Hugs
Mary

Mary

I have RSD and mine spread throughout my body. I have RSD for the past 17 years. I just had a spinal cord stimulator put in 19 days ago. Is that what you had 2 times (scs)??

Emily