Hi Debbie. I made the original post. I live in a suburb of Chicago. I don't know how far from Chicago you are?
I went through similar problems. I had an orthopedic surgeon inject kenalog into my groin, without ultrasound guidance. It did nothing. Without ultrasound, the doctor is just squirting liquid blindly, around a very small thing: a nerve. I got 0 relief.
The only thing that has worked for me, is an ultrasound guided steroid shot, not to the spinal nerve root, but in the hip/groin region where the nerve exits the pelvis.
What worked for me was to find a doctor called a Physical Medicine & Rehabilitation doctor, or PM&R doctor. You have to find one who does ultrasound-guided injections. I have found one at the local hospital I go to, and it's a lot closer than Washington, D.C.
I think the doctors might be scared to do surgery on your daughter if she is "too young". But I'm sure you know, we who suffer this pain don't care how old we are, we just want it gone. I would have gladly let someone cut my lateral femoral cutaneous nerve in half.
You haven't tried all the options yet, but that is not to say that the doctors you have seen seem to know what that is. I would say try to find a PM&R doctor who will do a steroid injection to the LFCN where it exits the pelvis. A steroid is an anti inflammatory, not a numbing agent. If your daughter's nerve is not inflamed near the nerve root at the spine, a steroid shot there won't help. Has she had an MRI of her spine already to check for bulging discs pressing on the LFCN?
The place where the nerve often gets rubbed on, trapped, etc. is where it exits the pelvis near the Anterior Superior Iliac Spine, or ASIS. You can even find videos on youtube of ultrasound guided steroid injections to the lateral femoral cutaneous nerve. Here is just one example:
I'll have to type out think link because I only have 2 posts, and this forum won't let me include links unless I have 10 posts.
go to "youtube" "*edit*
You can also find youtube videos of people who have had nerve resection surgery to their LFCN, and have had good outcomes, with no more pain, only lack of feeling in their thigh.
Here is one: *edit*
remove the space between youtube and / to get the link to work.
I hope this works.
paperbag
Quote:
Originally Posted by DebbieK
Thank you for the quick reply.My daughter had a cortisone injection into the nerve without an ultrasound.She had an ultra sound guided epidural block in the lumbar region at the base of the nerve last week. She felt the medication going into the nerve we had hoped it would work.Doctors seem unable to treat this condition.It is so frustrating.
Why is surgery discouraged? No one has told us why just that they won't.I have read online that it can help.Knowing what you know,now after living with M P many many years would you have considered surgery? Do you know of a specislist who has knowledge of
M P ? I have scoured the internet looking for answers.I found John Hopkins in Maryand and a DR Ducic in Wasington D.C.Any knowledge of these doctors? They are both very far from Indiana where we live. I just can't bear to see her suffer she is so young. Thank you for listening we are struggling so much with this horrific condition.As her mother I wish I could just take the pain and carry the burden for her. Debbie K
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