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janekhloe
@janekhloe

Posts: 2
Joined: Jun 30, 2018

HELP!! PLEASE!! Dent and Extreme pain in Right leg

Posted by @janekhloe, Sat, Jun 30 5:52am

Hello,
So I have had this deep dent in my right thigh, just a little above my knee, for about three years now. It is almost like a gap in my quadricep muscle. No doctor seems to know what it is and physical therapy has not helped. The pain is getting worse and keeps me awake at night. To the pain almost feels like I have a tight belt being pulled tighter and tighter and then the circulation in my lower leg stops, (It hurts, starts tingling, and my toes next to my pinky toes gets cramped up and stuck). If I am laying down in bed and bend my leg inward (touching my foot to left knee) my leg will get stuck and the pain is miserable. I have had MRI’s, X-rays, Sonograms, nothing has come up. It is hard for me to walk long periods of time, drive, swim, sitting with legs bend.

I have Ehlers Danlos Syndrome, which my doctors are not familiar with, so therefore I am unsure if this could be stemming from that.
*I have one kidney due to kidney failure
*Previous Heart Failure
*Born with Microtia
*Scoliosis (Just diagnosed 2018)
*Raynuad’s Disease (Diagnosed in 2015)
*I have had broken bones, none to the right knee
* I have unknown lump on right side by my ribs that swells when I exercise or walk for a long time (Doctors do not know what this is either)
* August 2017 I torn ligaments and tendons in lower back and right hip, I was unable to walk for 3 months. However, this pain and dent started before this.

I am trying to give a decent medical history therefore someone might be able to shed some light on what this can be. The pain is so bad I am about ready to tie off my leg and get rid of it. (I can tolerate pain very well too, I had my jaws surgically broken in 27 pieces and no pain medication was given due to medical history,)

I need this pain to go away so I can get back to living life the best I can.

I will attach photos of the dent/gap in leg and the lump on right side of ribs.

Any help or suggestions of how to get this fixed would be greatly appreciated.

~Khloe

REPLY

Hello @janekhloe. Welcome to Mayo Clinic Connect! I'm sorry to hear you are in pain with your leg and the other medical issues you have been faced with. Please know that here on Connect we are not medical professionals and can not give medical advice. However, we can surely try to help connect you with a community member that has possibly experienced something similar. You will notice that I have shared your post with members in the Bones, Joints and Muscles group in hopes to reach members there.

Have you considered seeking medical attention at a large facility that attends to patients who need multidisciplinary care? such as Mayo Clinic?

@jamienolson

Hello @janekhloe. Welcome to Mayo Clinic Connect! I'm sorry to hear you are in pain with your leg and the other medical issues you have been faced with. Please know that here on Connect we are not medical professionals and can not give medical advice. However, we can surely try to help connect you with a community member that has possibly experienced something similar. You will notice that I have shared your post with members in the Bones, Joints and Muscles group in hopes to reach members there.

Have you considered seeking medical attention at a large facility that attends to patients who need multidisciplinary care? such as Mayo Clinic?

Jump to this post

Hello, okay thank you.

Yes actually I have been trying to get into the Minnesota Mayo Clinic since January, into the genetics department because they have an EDS specificalist. My doctors and specialist have sent in report and letters and they still will not call me back. They told me to stop calling and they will call me.

I have also tried UCSF, their genetics doctor for EDS and their waiting list is completely full.

I’m just getting by everyday, the best I can.

I have something fairly similar on my left higher outside thigh. Know I have fatty tumor hip/thigh area where is 2 different colors. Can be painful, but nothing like you have described.
I have nerve damage in pelvis, with muscle & nerve damage in my lower right abdomen, that's whole different ball game as far as pain, totally debilitating at times.

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