Parsonage turner syndrome *

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

For what it is worth, my parsonage Turner was apparently directly related to something called a thymoma, a very rare form of cancer. It is quite treatable when caught early. You may want to mention that they should image your thymus. The oncologist at Penn see these two conditions so rarely there is no medical information available and so there are no studies endorsing any form of correlation here. But thymoma is typically related to an autoimmune condition, and parsonage Turner is just such a condition. The chances may be small, but it was what was causing my condition. Once the tumor was removed the pain was gone.

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

My 19 year old daughter was a promising volleyball player. She had been recruited to several colleges and committed to playing. However, in January of her senior year of HS she developed what we thought was a pulled muscle on top of her trapezoid by her neck. She had had a very busy few weeks as she had played in two tournaments rarely seeing the bench for a rest. The first tourney however she was quite sick with a fever and flu like symptoms so she sat out the first two days. A month later the knot on top was gone, but the soreness and stiffness remained and she would often be seen rubbing on top of her shoulder or near her neck. We saw our chiropractor initially then moved on to the physician who assured us rest would help. After a few months the pain now radiated into her shoulder. She saw an ortho doc to rule out any impingement or rotator cuff issues. She had MRI and it came back clear with some tendinitis near the shoulder. Rest and ice. She went off to play in college still having pain. Three a day hell weeks pushed her over the edge and she was having constant pain. A month later she came to visit and her scapula was winged WAY out on the same side and she was now feeling scapula pain. She has now been seen by three ortho surgeons, a neurologist who performed EMG who now say she has Parsonage Turner Syndrome.. they think. It’s been 20months now since the initial lump. She has quit volleyball and has ongoing pain radiating from her trap down into her scapula and shoulder. She has nerve damage on several nerves and weakened muscles. I wouldn’t allow them to put her on pain medication except for ibuprofen so that’s all she’s taking. BUT.. there are times she is in a lot of pain and can’t use the arm to reach for things. Rarely picks things up, has problems using that arm and hand to open things. We have tried PT for the last year. Cupping seemed to help the most. I’m just at a loss as to what to do. NONE of these doctors offer hope or even direction for us. Just... she doesn’t need shoulder surgery. We were told it would take two years for her to be well by the neurologist, but it’s almost that time and I don’t see that it’s improved much. It still wakes her sometimes. She can’t travel for hours in the car without her arm aching for weeks in the future. She said writing notes in class is sometimes a chore. Does ANYONE have ANY advice or hope or direction. I cry thinking about my 5’10” beast of a hitter to a girl who has a hard time raising her arm. She’s in college for nursing and I wonder sometimes if she will even be able to perform the tasks in her career future!! I will mention two things also that seemed random and non related but sometimes I wonder... when she was 17 she developed “trigger finger” and had to have tendon release surgery. They stated it wasn’t an uncommon thing for basketball and volleyball players to get since they “jamb” their fingers. Second thing is she had weird stuff happen in high school like sweating an enormous amount even just sitting in a normal temp room. She also passed out a few times (both was the first day of her period) and we were told it was her heavy blood
Loss and her body’s response to fight or flight. The sweating we were told was just a kid who sweat a lot. That’s all.. if anyone has any offering I would be so grateful to hear.

Hello @texasmama, welcome to Connect. I'm sorry your daughter has to deal with this disease at such a young age. I know it's hard for you also and I thank you for being an advocate for her. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @ethanmcconkey to see if he is able to offer some other suggestions or possibly move your post this discussion for more visibility.

Groups > Brain & Nervous System > Parsonage turner syndrome *
— https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@texasmama has your daughter's doctors discussed any treatment plan or suggestions to help your daughter?

John

My 19 year old daughter was a promising volleyball player. She had been recruited to several colleges and committed to playing. However, in January of her senior year of HS she developed what we thought was a pulled muscle on top of her trapezoid by her neck. She had had a very busy few weeks as she had played in two tournaments rarely seeing the bench for a rest. The first tourney however she was quite sick with a fever and flu like symptoms so she sat out the first two days. A month later the knot on top was gone, but the soreness and stiffness remained and she would often be seen rubbing on top of her shoulder or near her neck. We saw our chiropractor initially then moved on to the physician who assured us rest would help. After a few months the pain now radiated into her shoulder. She saw an ortho doc to rule out any impingement or rotator cuff issues. She had MRI and it came back clear with some tendinitis near the shoulder. Rest and ice. She went off to play in college still having pain. Three a day hell weeks pushed her over the edge and she was having constant pain. A month later she came to visit and her scapula was winged WAY out on the same side and she was now feeling scapula pain. She has now been seen by three ortho surgeons, a neurologist who performed EMG who now say she has Parsonage Turner Syndrome.. they think. It’s been 20months now since the initial lump. She has quit volleyball and has ongoing pain radiating from her trap down into her scapula and shoulder. She has nerve damage on several nerves and weakened muscles. I wouldn’t allow them to put her on pain medication except for ibuprofen so that’s all she’s taking. BUT.. there are times she is in a lot of pain and can’t use the arm to reach for things. Rarely picks things up, has problems using that arm and hand to open things. We have tried PT for the last year. Cupping seemed to help the most. I’m just at a loss as to what to do. NONE of these doctors offer hope or even direction for us. Just... she doesn’t need shoulder surgery. We were told it would take two years for her to be well by the neurologist, but it’s almost that time and I don’t see that it’s improved much. It still wakes her sometimes. She can’t travel for hours in the car without her arm aching for weeks in the future. She said writing notes in class is sometimes a chore. Does ANYONE have ANY advice or hope or direction. I cry thinking about my 5’10” beast of a hitter to a girl who has a hard time raising her arm. She’s in college for nursing and I wonder sometimes if she will even be able to perform the tasks in her career future!! I will mention two things also that seemed random and non related but sometimes I wonder... when she was 17 she developed “trigger finger” and had to have tendon release surgery. They stated it wasn’t an uncommon thing for basketball and volleyball players to get since they “jamb” their fingers. Second thing is she had weird stuff happen in high school like sweating an enormous amount even just sitting in a normal temp room. She also passed out a few times (both was the first day of her period) and we were told it was her heavy blood
Loss and her body’s response to fight or flight. The sweating we were told was just a kid who sweat a lot. That’s all.. if anyone has any offering I would be so grateful to hear.

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

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