Parsonage turner syndrome *

Had another appointment at USF last week and my husband was in such severe pain, he could not make the drive.
The doctor told me it was the worse case of idiopathic Brachial Plexopothy she has ever seen and she could offer nothing more. She wants us to see another neurologist to see if he thinks a spinal tap may show something. Only problem being his first available appointment is July 5th. Doctor said she would see if she could get that moved up. She also mentioned, long term it could take 3-4 years to for Parsonage-Turner Syndrome to dissipate. Not very hopeful news.
Also, due to blood clots, he cannot do OT or PT and cannot use compression sleeve at this time. Have appointment for a new ultrasound on February 27th to check status of the clots.
Very disheartening at this point but we will never give up!!

Arlene,
I can only imagine how disheartening your appointment must have been last week. But I'm encourage by your statement "we will never give up." Do you have to travel far for the ultrasound appointment at the end of the month?

It does take long to heal but that's the longest I've ever seen a doctor convey. July is too long to wait and unless the other doctor has highly specific experience I question the value. It would be worth going to Miami if necessary. It was my insurer that actually helped find the right specialist. Can you speak with a case worker at your insurance Co?

Thank you, Colleen. No, our local hematologist is close to the house and our local hospital, where the ultrasound will be done, is only a few blocks from our house. I am anxious to see what the test determines and hopefully, it will be good news. Still waiting for the swelling in Marks arm to decrease so we can resume PT and OT.

Thank you for your input; it never entered our minds to check with a case worker at our insurance company. I will try that avenue and see where it takes us.

Hi All - so glad I found this group. Just finding my footing after 5 level posterior cervical spine fusion. 2 1/2 months into recovery I was diagnosed with Parsonage Turner Syndrome. Doctors think it is not directly related to surgery but this area was still healing so vulnerable to this rare virus. Seems like it’s diagnosed by eliminating what it is NOT. I had an EMG which was abnormal. To me this test was uncomfortable but not painful. Also MRI of brachial plexus also images C5-T1 so you can see the spinal nerve roots. I was told it is self-resolving 4 months-1 year and to be patient and I am working with a pain doctor to manage the pain. Currently Percocet and Gabapentin. So little known about this and incredibly difficult to manage the PTS on top of neck which is barely healed and still so stiff and sore from surgery.

So sorry to hear you have PTS along with. All the other stuff. I've been plugging along with it for almost 18 months, a very long time. I found heat ,and positioning,helped with the pain along with meds. Hang in there, it is different for everyone and no doctor really knows anything, only what the very few patients have told them. I acquired mine after surgery, it's a long recovery, I'm happy to help any way I can

PTS is very painful for my husband and he has lost use of him right arm/hand. But, it is unusual for women to be diagnosed with PTS.
We have found all doctors we have consulted to be baffled and do not offer much in the way of treatment; just be patient, it takes time. One neurologist even mentioned a period of 3-4 years
I've found it difficult to take any further action at this time, as my husband developed blood clots is his arm and getting rid of them is our top priority right now.
Has anyone thought of stem cell therapy? Our prayers & thoughts are with you all.

My husband and I are struggling with the instructions I was given to “take these pain meds and be patient!” My whole life is turned upside down! I was prepared for the very difficult 3 month recovery from the posterior cervical fusion. I was not prepared for the debilitating PTS afterwards. I can’t even travel to be with my daughter who is giving birth to our granddaughter any day now and I have been an absentee grandmother to my 18 month old grandson. Why? Because of pain. Then surgery to correct pain. Then pain after that. And drugs that make me feel like i’m only half there. And yeah the docs are pretty sure it’s the brachial plexus but are they POSITIVE it’s not the cervical spine? Am I waiting for nothing? These questions keep me awake at night.

I really am so sorry, the pain is relentless, I know, I still struggle numerous times a day, but it subsides, time is all I can tell you. It is the worst the first couple months, denervation and atrophy set in on the affected arm, I do pilates with an amazing instructor who is helping me retrain my brain to override the nerve damage and strrngthen that side. Read all you can and advocate for yourself. Dont give up, its a very long illness, i have a 3 level fusion with hardware, the symptoms are very similar to radiculopathy, times 1000! I got through the worst of this with a doctor open to whatever she could do. You are not alone, you found us here, bless you, I'll keep you in my prayers.