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Hello @texasmama- I'm so sorry to hear that you and your family have been brought to a halt by this. My sisters all played volleyball in school and in college- it's their life and they live for it. I imagine its been extremely tough.
Have you thought about traveling to Mayo orthopedics and getting another opinion? I can imagine the cost and frustration with putting time into explaining her symptoms to yet another physician but I believe in Mayo Clinic and the cases that the physicians see are sometimes things they have seen before with other patients that have also made the journey as a last resort. As well as the access that Mayo physicians have to other specialties within the same facility. Keep doing research, read the medical journals, look for information within Mayo's YouTube, Facebook pages, read and reach out to the others here on connect at the link John gave you in the above post and research pages. You are bound to find someone to give you some answers.
From one mama to another- strength and peace. Please come back and give us an update. Future parents looking for information will thank you!
I will move the conversation to the already existing PTS conversation taking place.
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