How do i write without crying?! Complex Regional Pain Syndrome (CRPS)

Posted by tylerj @tylerj, Sep 11, 2023

Ok few.
My name is Tyler, My wife Lisa. 2 years ago on my property lisa fell down. This fall would seem like nothing if you saw it.
Lisa fell and broke both arms in 2 places, she also landed we think on her hip. What with 2 brokwlen arms her hip was overlooked at the time. We have since had surgery on one arem 2xs.
The arm has developed what is known as C.R.I.P.S.
A nerve damage issue that makes her mind think her arm is still broken thus it feelslike it is still broken though it will never go away.

Deep breath, ok so knowing that we find a way to get threw it.

I had the last 2 years all typed out and it disapeared. I dont know if i can finish it all again right now ill have to come back. If you have red this please cone back when i can finish. I really need help for my wife.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Ill finish in the comments soon thank you anyone.

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@tylerj Tyler, thank you for writing this through your tears. Poor Lisa has gone through so much and you have been there with love.
I have never heard of C.R.I.P.S. before, and based on your description it sounds devastating.
Is it possible that a neurologist or pain management doctor could help her? I’m sure you’ve seen a neurologist…I was just wondering about an ablation.

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@SusanEllen66

@tylerj Tyler, thank you for writing this through your tears. Poor Lisa has gone through so much and you have been there with love.
I have never heard of C.R.I.P.S. before, and based on your description it sounds devastating.
Is it possible that a neurologist or pain management doctor could help her? I’m sure you’ve seen a neurologist…I was just wondering about an ablation.

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Please come back when you can ill add more details

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Continued,

Ok so we discover the arm issues, for the next few months we do many injections we do kedimean treatments we do have a pain managment dr that we see regularly and have been for 2 years now. After the first 2 arm surgerys and one to remove a bulg in her spine betewwn 2 lower disks we now drcide that an inplant to stimulate the nerves will be our best bet. This takes 2 more surgerys and now the arm is manageable however her hip/pelvis that everyone seams to think is fine now even after an mri last week now she canhardly stand on it shes bound to fall over soon. Im convinced she has a broken pelvis that is not being seen and getting worse for 2 years now. We dont know were to go or who to talk to. Shes clearly in pinbut simon med says they see no problems. Second opinion? But from who? Is there a pelivs dr? Were lost. Lisa is so close to giving up. This is not like her. She has been a nurse for years a paramedic in detroit and ran a major hospitals ob. She was teaching doctors online whenthis happened now on disability she struggles daily to keep fighting for solution and instead looks for a way out. I dont know what to do. Who to talk to how to get her help.

REPLY

@tylerj I can see through your writing how very worried and frightened that you are. For you and your wife to go through 2 years with all that you’ve shared is heartbreaking. Since you are in Michigan I’m going to assume that Lisa has already been seen at Henry Ford or U of Michigan? Do you know if your/her insurance will allow her to go out-of-state of another opinion? You’d have to call your insurance company to ask that question.

Mayo Clinic is an excellent and caring clinic that more that meets its well-deserved reputation. You are a one day drive from Rochester, MN - a long day but doable in my experience. You can ask Lisa’s doctor to make a referral (this is preferred) however she (or you) can make the request yourself. Here is the link that explains how to request an appointment at Mayo Clinic.

Request an appointment at Mayo Clinic:
http://mayocl.in/1mtmR63
I know I asked this question above, but what other clinics has Lisa been seen in Michigan? Henry Ford? U of Michigan?

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Prayers for both you and your wife. I am sure you suffer as much as her just dealing with all the pain she has must be taxing on you. Please put it in Gods hands . He will guide you if you just ask… G

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@tylerj

Please come back when you can ill add more details

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@tylerj I’m back and I will read the rest of your message

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@tylerj
Lisa’s medical knowledge and her intuition are a very important factors. She knows there’s a problem. Lisa, with your help can get a second opinion from an orthopedic specialist.
The doctor who read her test at Simon-Med probably missed it for various reasons.
Pain has to be respected! There is something wrong when people have pain as you described for Lisa.

An Orthopedic Specialist is most likely the best place to start.

Tyler, you are a wonderful husband!
Bless you and Lisa

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@SusanEllen66

@tylerj Tyler, thank you for writing this through your tears. Poor Lisa has gone through so much and you have been there with love.
I have never heard of C.R.I.P.S. before, and based on your description it sounds devastating.
Is it possible that a neurologist or pain management doctor could help her? I’m sure you’ve seen a neurologist…I was just wondering about an ablation.

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...sorry to read this .. wish I could help with some useful information but am not familiar with it, but great to see so many people trying to help this nice man and his wife... I was curious and looked up C.R.I.P.S. and wonder if it is: Complex regional pain syndrome (CRPS)
Hope this couple gets the help they need.

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@naturegirl5

@tylerj I can see through your writing how very worried and frightened that you are. For you and your wife to go through 2 years with all that you’ve shared is heartbreaking. Since you are in Michigan I’m going to assume that Lisa has already been seen at Henry Ford or U of Michigan? Do you know if your/her insurance will allow her to go out-of-state of another opinion? You’d have to call your insurance company to ask that question.

Mayo Clinic is an excellent and caring clinic that more that meets its well-deserved reputation. You are a one day drive from Rochester, MN - a long day but doable in my experience. You can ask Lisa’s doctor to make a referral (this is preferred) however she (or you) can make the request yourself. Here is the link that explains how to request an appointment at Mayo Clinic.

Request an appointment at Mayo Clinic:
http://mayocl.in/1mtmR63
I know I asked this question above, but what other clinics has Lisa been seen in Michigan? Henry Ford? U of Michigan?

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Im in scottsdale or we are

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