I have a few questions so bear with me and my apologies for the length.
I have EDS (naturally).I have Hypermobility type.I have never dislocated anything,but do injure easily which is what led to my diagnosis at age 52.I just turned 61 last month.I have always brusied easily,have always had very soft skin that started sagging by 11yrs old.I was diagnosed with Kyphosis by age 9.I have 76 degree bend/bow.My mother,brother & sister all have Kyphosis.My son also,but I got him treatment immediately upon seeing the signs.He wore a body brace for over yrs.My mother never got treatment for me which causes chronic pain. I know my mother has EDS from all her surgeries and other things athough she denies it.She’s almost 90 so I just let her believe what she wants.
My first injury at age 24 I almost snapped my coxys bone off my spine from sitting down too hard on a concrete step. I had a successful cervical fusion on 3 discs,my left knee rebuilt after landing wrong when thrown into a pool and everything ripped off the knee.I have 3 screws left holding my knee together. I have numerous various sized Lypomas on my hips,arms and thighs and had three removed.I’ve had 37+ surgeries since a toddler. Nine from 3rd degree burns at 14 months and varies others as an adult. Surprisingly except for my knee and until the my shoulders & hips mentioned below I have always healed fast…faster than most people in fact.Long before I ever heard of EDS we just thought I was a very fast healer.
Now the present. Both shoulders have torn rotary cuffs for approx 13yrs. Both hips have torn Gluteus minimus muscles for a good 12yrs although it’s only been about 6yrs that I was diagnosed correctly.I was constantly told it was tendinitis until I changed Orthopedists.The new one finally ordered a MRI when he heard I had EDS. I have had steroid shots in both hips/thighs and shoulders over the years.They help for a few months-somewhat. I use Flector patches, Lidocane patches or Voltaren Gel.I’ve been through PT numerous times and refuse to do that anymore.It only aggravates things.My new Ortho agrees. In March I had same day surgery on the left hip. They go in like lipo suction.A small hole and suck out all the bad/extra stuff from the torn muscle that is causing problems and pain. It should have helped or lasted a good 3/4 years,but within 3months it was as if I’d never had surgery. Today I saw my Ortho surgeon again.He has told me in the past that due to having EDS surgery on my shoulders would not work.I got another steroid injection in my left hip and right shoulder,the worst two of the four areas. He said he was going to call around the country and try to find what other options he can to help me.He is not satisfied with just giving me steroid injection every 3 months he wants to do more to help me.Although he is educated in EDS and I am not his first EDS patient I am his only one right now. I do trust him 100%.I was in the medical field.He has never steered me wrong nor done a thing that has harmed me or pushed me to do anything without making sure I was fully educated first. He was very disappointed to discovery the hip surgery did not last long at all he is trying to research further.I do not blame him at all.I understand it is the beast of the condition not anything he has done wrong.If in doubt I would leave his care in a heartbeat.
I live 22miles outside of Philly,PA.There are numerous EDS specialists,but they are all Pediatrics.There is one of the top EDS specialist in the world in MD not that far away me,but she will not take any new patients at all. I have been checked by a Cardiologist who although not a EDS specialist knows a lot about it.Thankfully all cardiology tests come back normal.I went to my husbands Cardiologist a top in Philly,she also ran test.Cardiac wise I am perfectly fine.My issues are all joint. I went to another Orthopedist who claimed to know all about EDS,but when I asked basic question he had no idea what I was talking about.My husband called him a liar and we walked out refusing to pay the bill.So finding specialist who really do know EDS is almost impossible.My present Ortho does know and is trying his best to help me.
I did tell my Ortho specialist I was going to post and he was all for it.He would love to hear back if any other patients had the same issues and what their Dr’s did for them.Anything to help me he is game for he said.He will educate himself as much as he possibly can to help me further. So has anyone else had the same problems? Other than steroid injections, patches and creams what else has helped long term? Typical surgical repairs I know are not an option for me. I have never had genetic testings due to insurances will not cover it,but all my doctors except one Neurologist said it is not important since it is very obvious I have EDS.Once my skin and joints are examined all Dr’s are in agreeance to a EDS diagnosis.
Please feel free to ask any questions.I will answer to the best of my ability. I thank you all for your time and help.