Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

@arlenej

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!!

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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?

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@arlenej

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!!

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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?

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@arlenej

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!!

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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.

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@arlenej

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!!

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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.

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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.

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@dingdarling

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.

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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

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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.

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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.

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@dingdarling

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.

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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.

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@dingdarling

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.

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Thank you for sharing your experience @adriennes I am so sorry for your suffering. When I manage to pull myself off the pity pot, I have been looking at yoga (which I have done a little but many of the positions rely on shoulder & arm strength which I do not have), and meditation. Interesting idea about training your brain to override nerve damage – I will definitely follow up on that. The mind-body connection with regard to healing is amazing. Started reading Dr. Gary Kaplan’s book Total Recovery: Breaking the Cycle of Chronic Pain and Depression, which looks promising. Do you practice mat or reformer Pilates?
I agree – pain is very similar to, but much worse than radiculopathy! I went thru a terrible period of “oh no I feel so much worse than before surgery!” This was my 3rd cervical spine surgery and he had to go in thru the back which makes for a long and difficult recovery. Although when I got the diagnosis of PTS I was happy I wouldn’t need surgery, I was hoping for a quicker fix.

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Big day for me! First solo drive since my Oct. 30th fusion and it is to the hair salon!! Of course. The only places I’ve really been is to the doctor’s-doctor’s-doctor’s or for an MRI or X-ray. A couple of short trips to the grocery store and once to the diner with a friend. Someone else has always driven. Last week (on the way to the doctor’s) I drove with my husband riding shotgun. I needed to test my ROM on my neck with all the hardware – 2 plates, 2 rods and 18 screws! Yikes – how is there even room for all of that? We take for granted the quick head movements and twisting and turning of the neck and upper back it takes to drive. And now there is the added pain and weakness in my left arm and hand from the PTS. On top of all that I have to time my pain meds just right so I can actually be clear-headed enough to get to the salon!! Managing pain takes a lot of effort!! Wish me luck on what for most people is an ordinary task…

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I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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The only thing I can advise is to rule out Thymoma. My PTS seemed to have been related to this very rare cancer. Once that was resolved so was my PTS.

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@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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Sounds about right, some days are much worse than others, my thumb drives me crazy as well as my arm. Ive been doing mat pilates and cadillac exercises, i use an oov too, cross training weak side to strong side, retraining my brain to desensitize these crazy nerves. I don't know if it works but when I'm with my instructor I forget about the pain and concentrate on strengthening the deficits. I got my neurologist to write me prescriptions for pilates and massage therapy,

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@kimee

I had my onset almost six months ago. I have bad pain in the palm of my hand when I stretch my fingers and especially bad pain in my thumb when I use it. Some days it is worse than others. Does anyone else have this or should I be pressing my doctor to look for a separate issue (perhaps from a bulging disc) that is causing this?

Adrienne, my experience sounds similar to yours 🙁

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Insurance may not pay but you can write it off at tax time for uninsured medical expenses, I moved to personal trainers because I used up all my PT, I found someone who works with ME patients, she's amazing

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