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Chronic painful Bone Marrow edema (BME) bilateral feet
My daughter has struggled with pain in her legs for years. In fact, folks often comment on how she walks as if she's barefoot and going over sharp gravel and that's even while she's got shoes on her feet. She's got Pten Hamartoma Tumor Syndrome which means her body likes to make tumors.
They did an MRI in 2019 looking for an AVM that may have been the cause of the pain but didn't find anything but bone marrow edema. Nobody made a referral to ortho at the time. Fast forward to Oct 2022 and she just had another MRI ordered by her genetic cancer oncologist. No AVMs were found but more significant bone marrow edema was found. We can't get in to ortho until December.
She's never broken any bones and hasn't had any sort of impact injury to her legs. She will often tell me 'Mom, my legs hurt' and it seems to be getting worse. It used to be that tylenol and a hot rice pack would bring relief but not anymore.
What can I do for her? It will be months before we ortho. She's got masses on her thyroid that we are scheduling for a biopsy next week. Would a mass in her bones be causing the edema and pain? Do I push for a more complete scan of her body? Pten means her body cannot shut down the growth of tumors benign or otherwise. Is there a different kind of specialist I should look for? Does anybody have a doctor that has helped with bone marrow edema in the Phoenix area?
I'm just desperate to help her. I don't want her to have a lifetime of struggles with pain and pain/killers. I'd like to find the source of the pain and resolve that.
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@julesj Welcome to Mayo Clinic Connect. I am sorry to hear you have had such a life style turn around the last couple of years. and loss of quality of life. It's really tough to step through this on a daily basis, isn't it?
I have linked a couple of great articles, one from WebMD, and one from Cleveland Clinic, for you to look at. Being in the Sacramento area, as you stated, have you considered UC Davis, a great teaching hospital in your area? I have a friend who accesses that facility, and is very happy with her care received there. https://health.ucdavis.edu/medicalcenter/ When I lived in Southern Califirnia, I used a facility that was connected to UCLA, and was considered a teaching facility for residents. I feel it made a difference in my level of care, having some sharp young doctors willing to look outside the boxes!
Bear in mind that having other health issues/concerns can combine to make a challenging case! I am here for support.
https://www.webmd.com/arthritis/bone-marrow-edema
https://my.clevelandclinic.org/health/diseases/24622-bone-marrow-edema
Ginger
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2 ReactionsThank you Ginger.
Yes every day is a challenge as extreme depression/ anxiety have played a huge role now in the loss of my life.
Thank you for the insight. My insurance will not pay for UCDavis / Stanford / Ucsf however I have spent about 80k out of pocket for treatment for the accompanying CRPS /BME with consults and alternative / main stream treatments .
I have not looked into ucla and have not gone to Mayo or Cleveland but I have read their info. Thank you most for your support here!
Best to you,
Jules
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1 ReactionHi @julesj, you'll notice that I removed your personal phone number. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.
I also merged your discussion into an earlier discussion about bone marrow edema (BME) so that you can more easily connect with fellow members like @samiasibley @contactbrady @rileygirl96 and others.
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1 ReactionOk!
Hello, I'm so sorry for everyone on this post. I have been losing my mind for over a month now. My foot and ankle started swelling one day at work( I've had swelling in both feet/ankles before for several years prior though) but mostly just my left foot. I was in a boot in my right foot from February through end of July maybe beginning of Augus5 and I'd only been out of the book for 2 weeks when my left foot started hurting.
I just bought brand new shoes since I only had one other pair which were totally destroyed inside. I figured it was my shoes that were the issue since both of my ankles were actually hurting a little but and a little swollen, but my one of my foot doctors said no. He thought it was heart or kidney related.
Long story short, I was in the emergency room twice after that once right after he saw me for the swelling, all tests were ok, and once 2 weeks after that as I got severe pain in my foot when I stood up at work to leave and could not walk on it at all. I went back to the ER and they took more tests and found a bakers cyst behind my left knee and said I had a bine sour in my left heel.
I figured that was it, the bone spur. I went back to the foot doctor he told me NO and to get an mri. I got the mri it said nothing about a bine sour but showed bone marrow edema involving the posterior 2/3 of the calcaneas ans extensive subcutaneous edema of the lower leg and ankle.
Both foot doctors said that should not be what is causing al of my pain but told me nothing else and gave me no other remedies.
I take motrin to help me sleep but other than that, I'm just in pain most of the time and use crutches to get around the house and don't go out unless it's physically therapy or a doctors visit or tests.i took a leave of absence from work because I just can't do it anymore.
Trying to figure out what a tops to take next. Might go see my oain management specialist, but I want to know the underlying condition as to what the issue is.
Looking for help and guidance anywhere at this point.
Bone marrow edema? that sounds very serious in my opinion