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?

@jjspokane61

Here's my input on PT for hand issues related to PTS. When I first went to my hand doctor my index finger was in a rigid state – I could only touch my thumb and index finger together at the very tip – with the index finger STRAIGHT! My grip strength was greatly reduced. The hand doctor did a steroid injection directly into the base of the index finger on the palm side. After the injection I waited for some great improvement – after 10 days I could make the tiniest of bends occur in the outer digit on the finger. I was so disappointed! But then I started with the hand therapy. I did 8 weeks of therapy, 2x's per week. First thing they did was the buddy loops. The real CORE of the therapy is the manipulation of the hand/finger by the therapist. Each week he would massage and slowly exert more pressure against the finger to get it into the bent position. I'm not going to lie… it was very painful at times. I was VERY motivated to make this work so put up with alot of pain to get there! Also there was ALOT of desensitivity training. Here's a list of things I did over that time: fluidotherapy – this is a machine with heat that is filled with corn "husks" – just little flakes of husk and get blown against your hand. Warms up your hand and gets it used to this feeling. Electric Stimulation in a water bath – this was like a tens unit giving mild shock. Was suppose to reduce inflamation? Did ultrasound on the finger and hand. As I started to get movement in the hand I did things like: picking up marbles with index finger against thumb, picking up "puffs", running hand through bin of plastic pellets, using clay — either pushing fingers into it, or pinching it with index and thumb. Using tiny vibrator on the finger. Did mirror box therapy… that was interesting… you put the bad hand in a box that has a mirror on the side. Then you place your good hand beside the box. You move BOTH hands through the motion of making a fist. You look at the mirror – so what you see is the mirror image of your GOOD hand making the fist. Although your bad hand (inside the box) is not able to make the fist you trick your mind and slowly your bad hand will move further than it did before. Not sure how effective this was, but very interesting!

I want to also add to this that during this time I also had 2 injections of steroid's in my spine (for suspected neck issues). While it wasn't for my hand, the Dr told me that steroid injected anywhere in the body with work on inflammation anywhere in the body. So its possible that extra steroid helped me get good results.

At the end of the 8 weeks, the therapist was finally able to get the index finger into the FULL flexed position. Once he was able to do that, I started doing it myself 2 or 3 times a day and then exercising the hand from fully opened to closed. Only a few minutes after having it fully closed I again can't make it close. But so much better than before!! I continue to have hand issues and I'm still on gaba… but I force it closed daily. I'm going back to the hand dr next week – I'm guessing he will do another injection. My hand is at 85%… I want it back to 100%!! My strength greatly improved once I was able to make a fist again as well. The hand doctors opinion is that my hand issues are caused by tendonitis that was brought on by the swelling during struggles with PTS. After this 2nd injection there is still potentially a "tendon release" procedure that can be done if I still don't get full hand function. I'll keep this blog posted on my progress!!

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@jjspokane61 – thanks for providing this information about all the therapy you've undergone for your hands with the PTS. I'm sure this will be very helpful for other members.

Was your doctor hopeful that you might get your hand function back to 100 percent, @jjspokane61?

I also wanted to ask @survivingpts in this PTS discussion to talk more about the acupuncture experiences mentioned that helped with PTS-related pain.

@vgottlieb24 – I believe you were saying you think that having acupuncture at a spa might be related to the start of PTS for both you and your sister?

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@lisalucier

@jjspokane61 – thanks for providing this information about all the therapy you've undergone for your hands with the PTS. I'm sure this will be very helpful for other members.

Was your doctor hopeful that you might get your hand function back to 100 percent, @jjspokane61?

I also wanted to ask @survivingpts in this PTS discussion to talk more about the acupuncture experiences mentioned that helped with PTS-related pain.

@vgottlieb24 – I believe you were saying you think that having acupuncture at a spa might be related to the start of PTS for both you and your sister?

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Update: I had the 2nd steroid injection in my hand 1 week ago. This 2nd shot was NOT nearly as painful as the first (I think because it was less swollen so there was more room for the extra fluid). As of 3 days ago, I am ABLE to make a tight fist now! The tendons are still tight – but less painful than before. I keep opening and closing all day long… so excited to be able to! I will continue with the gabapentin for now… maybe if all is still good with the hand in a couple of weeks I'll start another attempt to get weaned off the drugs! 2018 has NOT been a great year for me… excited to keep getting better and hoping for a much better 2019! So… the take away from this is… if you have the fixed finger issues due to PTS… make SURE you go and see a HAND specialist. Tell them to consider that this may be tendonitis caused by the swelling in your hand. I'm so pleased with my outcome at this point… I want that for everyone else suffering out there!!! Merry Christmas!! JJ

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@jjspokane61

Update: I had the 2nd steroid injection in my hand 1 week ago. This 2nd shot was NOT nearly as painful as the first (I think because it was less swollen so there was more room for the extra fluid). As of 3 days ago, I am ABLE to make a tight fist now! The tendons are still tight – but less painful than before. I keep opening and closing all day long… so excited to be able to! I will continue with the gabapentin for now… maybe if all is still good with the hand in a couple of weeks I'll start another attempt to get weaned off the drugs! 2018 has NOT been a great year for me… excited to keep getting better and hoping for a much better 2019! So… the take away from this is… if you have the fixed finger issues due to PTS… make SURE you go and see a HAND specialist. Tell them to consider that this may be tendonitis caused by the swelling in your hand. I'm so pleased with my outcome at this point… I want that for everyone else suffering out there!!! Merry Christmas!! JJ

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I’m so glad that the injection in your hand has had such positive results! That’s great you can make a fist. I hope it stays that way. I hope 2019 is a better year for you and for all those suffering with pain. Merry Christmas and a Happy, Healthy New Year!

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Hello,
I have also been diagnosed with PST. The question I have with this diagnosis is I am not experiencing any pain. The main problem I have is numbness in the face, head, feet, especially the face, why is this? The facial numbness cause other issues such as a feeling of imbalance, runny nose, get hot and a little sweaty. It really gets bad. Doctors tell me they can't do anything about nerve damage. Really Docs? It's really unbearable at times

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I am so sorry for your diagnosis. I was diagnosed almost two years ago. It is a nasty disease with no outward signs so friends and family suddenly do not understand. Unfortunately it was the excruciating pain that brought me to the Drs. After some testing 1 neurologist said I has PTS, then a specialist in ultrasound for diagnosis (can't have MRI due to medical shrapnel in my belly from gallbladder surgery in the 60s) he said it was absolutely not PTS, but mono Neuritis multiplex. Then their was fights between these two on who had the right to tell me what I had. Ok so I have PTS, neurologist said she would send a letter to my primary care Dr. When I went I asked her about the diagnosis. She confirmed she had received the letter so naturally I'm firing questions at her. THEN SHE SAYS…..IVE NEVER HEARD OF THIS DISEASE IF YOU WANT TO LEARN ABOUT IT YOU WILL HAVE TO GOOGLE IT. BUT I PROMISE, we will keep you comfortable. In 2 years my medications have never been adjusted. There is nothing that really works for the pain. I have spinal issues and was already on Gabapentin. Bad bad drug and it does nothing and I have been trying to wean myself off but no success. I take 9mg of hydromorph contin at 9 am and pm. Time release. 2mg dilaudid for break through 2x a day. Prescription is for 4 pills a day but it doesn't work well enough for pain to go through the worst constipation. If you were told there is nothing that works for pain management or disease control it is pretty well true. You are fortunate not to have pain and I pray that continues. My hands feel like they are in boiling oil. When move my shoulders it feels as though someone is twisting the shoulder forcibly. I have a patch on my right hip that burns like my hands. My dad also had this with no pain just numbness and what he described as his hands felt like sandpaper. Good luck as you live with PTS. I continue to pray for all with neurological diseases that some day there will be help for us. I'm now preparing my brain to be commuted to long term care as I'm now in a position where I require 24/7 care.

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@lisalucier

Hi, @adriennes. I’d like to add my welcome to Mayo Clinic Connect. I am sorry that you went through agony, and I’m glad to hear that you can function now.

Glad you have now met @johnbishop. I also thought you’d like to meet two of our other volunteer mentors who are knowledgeable about brain and nervous system disorders, @kdubois and @kariulrich.

Are you finding anything that helps with the weakness, numbness and pain?

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I have not found anything that has helped alleviate my numbness. My numbness is mainly in the face which causes other issues, such as: Runny nose,feeling hot and borderline sweaty, blurry vision etc. This gets really bad sometimes. When I raise my arms at shoulder level or above, that is when it gets bad. Face becomes more numb, hot, sweaty and a feeling of loss of balance. Why is this?

Doctors tell me that I have nerve damage in the C4/5/6 in the neck. Okay, I had cervical stenosis surgery in July, that did absolutely nothing. The numbness in my face never goes away, it's there 24/7, my feet get numb as well. I have had several MRI's, scans, whatever, doctor tells me that there is nothing they can do for nerve damage. I think it's more a lack of concern and effort on their part. Meanwhile, I just continue to suffer.

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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I was diagnosed Parsonage Turner about 8 years ago. I mostly recovered but still have problems with fine motor skills in my hand.
2 days ago out of nowhere my same shoulder started hurting pretty badly. Movement made it worse. Pain radiates down my arm. The pain is a bit less now but still there. I was wondering if Parsonage Turner has returned. What I do notice and I am not sure if that is a symptom of it is that a spot on the back of my shoulder is very tender to the touch, it hurts when I lean against it. I remember I had that 8 years ago too, when I was diagnose with PT.
Can anyone tell me if that is a symptom?

Thanks!

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I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I’m hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for “parsonage turner syndrome” and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

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@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I’m hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for “parsonage turner syndrome” and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

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I am in week 9. I am only not in pain when heavily medicated. The pain has been the same throughout.
I have never done this before but I hope for other suffers they are not alone.
I just don5 understand why I am not better yet. The weakness and muscle wastage I cam cope with

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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Hi, @painful — welcome to Mayo Clinic Connect. Glad you found us. In addition to the members here on this thread, also wanted you to meet @andylevine and @confused1955, who’ve also talked about Parsonage Turner Syndrome, as well as @rosemarya and @sandytoes.

You mentioned being in week 9. Is this the amount of time since your diagnosis?

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@johnbishop

Hi @adriennes, I noticed you also have a post for parsonage turner syndrome under the Brain & Nervous System Group and have not found anyone else that shares the same symptoms with PTS. I’m hoping someone will jump in but until they do I thought I would suggest searching in Google Scholar to see if you can find some information that may help. I use it a lot for medical information searches. I did a search for “parsonage turner syndrome” and sorted it by clicking the 2017 link in the left to show the newest links/articles. Here is the list of links:
https://scholar.google.com/scholar?as_ylo=2017&q=parsonage+turner+syndrome+treatment&hl=en&as_sdt=1,24&as_vis=1
Hoping you find some answers soon.

John

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Has the pain been continuous for 9 weeks? Have you been to a neurologists?

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