[labar914]

Can anyone share there experience related to RSD from fusion surgery. I had lumbar fusion 8/08 and did great for a few months, then started with burning pain, the burning moved to both feet, then the legs and within 2 months both arms , neck etc... They did find that I have epidural fibrosis that is around the nerve and resting on the rear of the spinal cord (no compression). They avoided the DX of RSD to begin with because of the scar tissue, but once it moved to the upper body, they could no longer discount it. So the official dx is fairly new to me, but it traveled very quickly to many areas.

My PM doctor has suggested the possibility of Lysis to remove the scar tissue, and reduce some of the pain directly coming from the injury site, but with a dx of RSD I am not sure I want anyone messing with anything unless it will really help.

Anyone have a similiar experience or suggestions?

Thanks,
Shell

[ali12]

Hello Shell and Welcome to Neurotalk - you will meet many great people here who i'm sure will be more than happy to help you if they can!

I'm so sorry to hear about everything that you have been through and are continuing to go through!! I really hope things start getting better for you real soon and please know that you are in my thoughts and prayers!

I can't help you with the spinal fusion as I haven't had one but did want to welcome you to the forum and let you know that I DO understand some of what you are going through!! I have RSD in my left leg and both arms. I developed it when I was 12 years old after an ankle sprain and am now 14. I have tried all sorts of medications, therapies etc to try and help but none have really worked so far.

Surgery isn't usually suggested for RSD and sufferers are usually told to avoid it at all costs if they can. I haven't had surgery since I was diagnosed other than an ingrown toenail removal on my RSD leg and it created even more problems. I developed severe myoclonic spasms/jerks from the spasms and I also had a nerve block which put me in a wheelchair for 13 months.

If you have to have surgery, it is usually suggested that you have a nerve block before and possibly afterwards. They can usually stop some of the post-operative pain and try and stop the RSD from spreading or getting any worse. Also, it is essential that you have a doctor that knows about RSD and please don't be afraid to tell them about RSD - it is really important that they know so that they can help you the best they can.

I'm sorry that I can't help you that much! Just know that I care and if you ever need anything, I am here for you! I'm sure somebody will stop by soon and answer some of your questions if they can!

Alison.

[labar914]

Originally Posted by ali12

Hello Shell and Welcome to Neurotalk - you will meet many great people here who i'm sure will be more than happy to help you if they can!
Surgery isn't usually suggested for RSD and sufferers are usually told to avoid it at all costs if they can. Alison.

Thank you Alison, I have been around a bunch of the boards, but never had an official dx until today.

Funny thing is that I was scheduled to go for a consulation for breast reduction tomorrow, guess I will need to cancel my appointment, thats definetely not worth the risk.

Hugs,
Shell

[SBOWLING]

Hello Shell,
Welcome to Neuro Talk. There are a lot of wonderful people on here. We all have been through a lot and I'm sure you will get lots of advice.
I have full body RSDS/CRPS. It started several months after my disc fusion at C6 and C7 (the neck). The nerve that was pinched by the ruptured disc was the main nerve that goes down the right arm. I have learned it takes 18 months for an injured nerve to completely heal. I was making the bed and pulled hard with the right arm and restressed the, not yet completely, healed nerve. It took about 6 months before the doctors gave in and DX me with RSDS.
If they want to go in and remove scar tissue ask if the area they will be working in can have a nerve block done? So it doesn't aggrivate the RSD more than need be.

I am having a scope done on my left ankle in June. My ortho doc is familiar with RSD and called Dr. Schwartzman in Philly (RSDS research doctor) they are going to block the nerves going into my left leg and hopefully won't set off a flair up when they scope my ankle.

Good luck and take care,
Sherrie

[CRPSbe]

Hi Shell, welcome!

I can't help you as far as the spinal fusion goes, but when it comes to RSD, we can all relate. They always told me never to let anyone operate on my RSD limbs again. Nobody wanted to anyway as it might make the RSD worse.

Hope someone can provide you with more specific answers.

[baseballfan]

Originally Posted by labar914

Can anyone share there experience related to RSD from fusion surgery. I had lumbar fusion 8/08 and did great for a few months, then started with burning pain, the burning moved to both feet, then the legs and within 2 months both arms , neck etc... They did find that I have epidural fibrosis that is around the nerve and resting on the rear of the spinal cord (no compression). They avoided the DX of RSD to begin with because of the scar tissue, but once it moved to the upper body, they could no longer discount it. So the official dx is fairly new to me, but it traveled very quickly to many areas.

My PM doctor has suggested the possibility of Lysis to remove the scar tissue, and reduce some of the pain directly coming from the injury site, but with a dx of RSD I am not sure I want anyone messing with anything unless it will really help.

Anyone have a similiar experience or suggestions?

Thanks,
Shell

Hi Shell,

I had a fusion done sept 2007 L4-L5, another fusion done dec. 2007 L4-L5 and another fusion dec 2008 L3-L5. The reason for all the fusions was complications. I also have permanent nerve damage in my back. I also have scar tissue wrapped around a nerve in my back. I was dxed with RSD of my left foot on 4/8/09. My pain doc is planning on doing a sympathetic nerve block for the RSD then worry later about the scar tissue. Make sure your pain doc knows a lot about RSD and how to treat it. Hope this info helps you.

Kate

[Shelley neck]

Originally Posted by SBOWLING

Hello Shell,
Welcome to Neuro Talk. There are a lot of wonderful people on here. We all have been through a lot and I'm sure you will get lots of advice.
I have full body RSDS/CRPS. It started several months after my disc fusion at C6 and C7 (the neck). The nerve that was pinched by the ruptured disc was the main nerve that goes down the right arm. I have learned it takes 18 months for an injured nerve to completely heal. I was making the bed and pulled hard with the right arm and restressed the, not yet completely, healed nerve. It took about 6 months before the doctors gave in and DX me with RSDS.
If they want to go in and remove scar tissue ask if the area they will be working in can have a nerve block done? So it doesn't aggrivate the RSD more than need be.

I am having a scope done on my left ankle in June. My ortho doc is familiar with RSD and called Dr. Schwartzman in Philly (RSDS research doctor) they are going to block the nerves going into my left leg and hopefully won't set off a flair up when they scope my ankle.

Good luck and take care,
Sherrie

Hi Sherrie my name is also Shelley, i had surgery 8 mths ago for a C5-6, i had a horse accident when i was 14, and am now 38, so the injury is 24 yrs old and had deteriated to fall backwards into my spinal column. It took 6 mts to get a specialist to do am MRI and find the cause for my pain. Another 6mth wait for surgery. So i had my first surgery of just another disc and it fell forward into my throat, so had surgery again 2 mths later with a bigger disc and plate n screws. My place now is i wont to get fit again and off meds if possible so am seeing a pain manage specialist and trying to get into a course for pm, i didnt even know why i was getting the burning in my neck, so some more info on RSDS and DX. thanks shelley