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What Causes Hirayama Disease?
Question: We just got back from the Mayo Clinic in Minnesota. We spent 6 busy days there. The neurologist is 90% sure that XXXXXXX has Hirayama Disease. None of the MRIs showed any damage or compression. He is wearing an XXXXXXX neck brace. The doctor said that the damage is in C8. She does not recommend surgery. She said he could end up paralyzed. They fitted him with a splint for daytime and a splint for night. He doesn't feel that either of the splints are beneficial. The Mayo doctor has only seen one other Hirayama patient in her career. I am trying to contact the KU Medical Center to see if they have ever seen a Hirayama patient. I still want another opinion on everything. I really appreciate your help.
Brief Answer:
Splint use will take time to give results.
Detailed Answer:
Hello again XXXXXXX and thanks for asking directly.
It is true that Hirayama disease is a rare condition and not fully studied.
Splints or cervical braces are the main treatment possibility, so, in my opinion, it will need time to see the splint application results.
Having a second or a third opinion by a Doctor that is more experienced in this disease is a good thing.
Hope this helps.
Greetings.
Splint use will take time to give results.
Detailed Answer:
Hello again XXXXXXX and thanks for asking directly.
It is true that Hirayama disease is a rare condition and not fully studied.
Splints or cervical braces are the main treatment possibility, so, in my opinion, it will need time to see the splint application results.
Having a second or a third opinion by a Doctor that is more experienced in this disease is a good thing.
Hope this helps.
Greetings.
Above answer was peer-reviewed by :
Dr. Prasad
Have you treated any Hirayama patients? If so, how many? Are you coming to the United States any time soon?
Doctor Spaho, the Mayo Clinic said that they were unable to see anything wrong from Sam's MRIs, not even in the neck flexion MRI, but the neurologist is 90% certain that it is Hirayama Disease. She has seen only 1 case before in her career. If I could get a copy of the MRIs could you look at them? Thanks.
Doctor Spaho, the Mayo Clinic said that they were unable to see anything wrong from Sam's MRIs, not even in the neck flexion MRI, but the neurologist is 90% certain that it is Hirayama Disease. She has seen only 1 case before in her career. If I could get a copy of the MRIs could you look at them? Thanks.
Brief Answer:
Follow up.
Detailed Answer:
Hi again XXXXXXX
As I said before, Hirayama disease is a rare, or underdiagnosed disease, I been part of a staff that evaluated one patient with this probable condition that raised too much discussions, but in the end immobilization with cervical collar was recommended and some improvement of symptoms resulted after few months.
I live and work in Europe, and I don't think I will come to USA soon.
However, I am in your disposition to answer your questions.
If you will upload the MRI of your son's cervical spine, I will certainly give my honest opinion.
Greetings.
Follow up.
Detailed Answer:
Hi again XXXXXXX
As I said before, Hirayama disease is a rare, or underdiagnosed disease, I been part of a staff that evaluated one patient with this probable condition that raised too much discussions, but in the end immobilization with cervical collar was recommended and some improvement of symptoms resulted after few months.
I live and work in Europe, and I don't think I will come to USA soon.
However, I am in your disposition to answer your questions.
If you will upload the MRI of your son's cervical spine, I will certainly give my honest opinion.
Greetings.
Note: For further follow up on related General & Family Physician Click here.
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
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