My boyfriend had a C5/C6 fusion in May 2009 after a car accident. He was on the road to recovery, but always had chronic pain in his neck.

His doctor recommended a cervical epidural - that happened ~Jan 10, 2011. The next day or two, he said he felt tingling in his shoulder blade.

After 10-14 days later, he was shoveling snow. As we drove an hour later, he pulled the car over saying that it felt like a screwdriver was stabbing him in his left shoulder blade. In the days\weeks since, he began having tingling down his left arm. His neck continues to hurt. In the past 3 months, his pain has gotten so severe and has started with the same issues in his right shoulder blade and tingling in right arm, but less severe. He has had several “spasms” during the day\evening – he said it doesn’t feel like it’s his muscles, but his nerves.

He is in constant pain! Since the pain got so severe, he had trigger point injections in his neck, shoulder blade and underarm (near rib cage). He also had facet injections. He is on Gabapentin, Vicodin, Ibuprofen and Amitriptiline.

Last week, his severe pain got even worse and his spasms were not several times a day, but constant, throughout the day\evening. He said it’s much more comfortable to have his head a bit forward and to the right, which is why one doctor said possible dystonia. When I look at the websites for dystonia, he looks nothing like this. If you looked at him, you may not even notice his head tilting forward – it just looks like he’s stretching his neck.
I called a friend who is a Neurologist, and he said to look into RSD\CRSP. I haven’t read that this occurs in your beck\shoulder blades, but moreso a limb. He has the extreme tenderness where his pain is out of proportion with the touch of his muscles. He doesn’t have any of the temperature changes.

While I want to get his pain under control, I want to understand if this is RSD/CRSP, possibly dystonia or something else?? We will work with his doctor on other pain meds for comfort, but I’m seeking advice on possible disorders\causes\treatments for this. We see a new neurologist this week and I want to bring up ALL possible causes so we can look at everything, not go down one path then find it isn’t working.

Thanks for any advice, help, thoughts….

I'm sorry to hear your boyfriend is experiencing the discomforts that you have described.
It does sound like it is possible that he is experiencing symptoms of CRPS. There are tools that Sr's use to assist in diagnosing CRPS and a few of those tests include bone scans (bone loss happens in alot of cases), sympathetic nerve blocks, sweat test, oxygen levels in affected areas, blood flow imaging (usually in CRPS blood flow in the affected areas is decreased).
It is important that the Dr's rule out other possibilities as you want the correct treatment for whatever is fueling his symptoms.
As for additional info relating to the other questions you had I can do my best to help by sharing my experience with CRPS. My case started with a simple injection but during the administration of the injection the needle damaged a nerve (sciatic) in my right leg. The pain on the right side started in the buttocks and hip area and over a year it progressivly worsened and spread throughout the entire right limb. During year two my left side began showing the same symptoms and within the end of the second year the disease spread through the entire left limb from hip to toes. I did not have color changes, tempature changes, hair growth and nail changes until having this disease for 1.5 years. The muscle spasms are constant.
If your boyfriend does have CRPS treatment timing is extremely important as the odds of remission decrease dramatically after 6 months to 1 year.
Please let the group know if you have any questions as I know myself and the others are willing to share our knowledge relating to CRPS.
I hope you and your boyfriend find some answers as soon as possible.
Sincerely,
Sarah

Sarah -

Thank you for sharing your story. It was helpful to read as my boyfriend does not have the temp\color change or the hair\nail growth symptoms. As I was reading the info on the disease a week ago, I was wondering if he had CRPS or not. Based on your not having those symptoms either, it makes me think even more that he has this.

He has an appt on Thursday and I'm hopeful that we get on a path to correct. The good news is that this only started 3 months ago, so we have some time to resolve it before we hit the 6 mo\year mark.

I do have two questions. What is the best type of doctor to treat this - a neurologist? Any recommendations on the best hospitals or Dr names who specialize in this? I'm in the Philadelphia area, but could reach NY, Maryland, NJ etc.

Thanks again!!

Stacy1122

One of the top doctors treating RSD/CRPS is
Dr. Robert Schwartzman (he does have a long waiting list though you may be able to get in with one of his associates)

Primary Practice information:
Drexel Neurological Associates
219 N. Broad Street 7th Floor
Philadelphia, PA 19107
Phone: work 215-762-6915
Fax: fax 215-762-6914


You can also contact Jim Broatch at www.rsdsa.org for other doctors in your area.

I sincerely wish you and your boyfriend the best.

Abbie

Hello There stacy
Im a new member and so this is my first reply.
Im sorry to here about your boyfriend.
I had an accident in 2007 and had to have cervical fusion c-5,c-6,c-7.
It went pretty good then about 2 years ago starting haveing arm,shoulder
and hand pain on right. My neck is killing me and hand is shaking. My neurosurgion just dimissed me and and said everything looked good. Thanks!
thought I was going crazy. finally went to a pain management doc. Found out
I Have RSD from the surgery. He gave me a stellate ganglion block and the
first two time nothing happened but on my fifth shot it helped and my arm feels about 50% better. My neck is till hurting though. Found out its scar tissue in my neck.
I know how your boyfriend feels constantly in pain. And I know how terrible
you feel seeing him go through all that wanting to help.
Maybe he needs to see a pain management doc and find out if he has RSD-nerve pain.. I love my doc. Taking baby steps on thing at a time. But Im so
tired of the shooting pain and taking drugs!
I hope things get better and Im here to talk anytime.
I may not of helped but know theres help out there. Take care
Will pray for you and your boyfriend