A good NL that is paired with a chiari dr should be able to give u the initial dx, but then u have to go to a geneticist after seeing a Rheumatoid Dr that specializes in EDS.
It is a lot of Drs, but I knew for yrs, I bruised easy, and was slow to heal, I just never knew y....the NL at TCI gave me the dx when I went for my surgery eval.
Hi! thank you for clearing that up. Could you please tell me how someone gets diagnosed with EDS? For about 3 yrs now I have pain in my right hip and my shoulders have been making a popping sound. I also have a tiny cut near my left ankle that won't go away.
I am sorry, I keep forgetting not everyone knows...EDS = Ehlers-Danlos....it is a chiari related condition that affects many aspects of the body....joints is a biggy.
Last reviewed: November 7, 2010.
Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels.
Causes, incidence, and risk factors
There are six major types and at least five minor types of Ehlers-Danlos syndrome (EDS).
A variety of gene mutations (changes) cause problems with collagen, the material that provides strength and structure to skin, bone, blood vessels, and internal organs.
The abnormal collagen leads to the symptoms associated with EDS. In some forms of the condition this can include rupture of internal organs or abnormal heart valves.
Family history is a risk factor in some cases.
Symptoms of EDS include:
Easily damaged, bruised, and stretchy skin
Easy scarring and poor wound healing
Increased joint mobility, joints popping, early arthritis
Premature rupture of membranes during pregnancy
Very soft and velvety skin
This may sound stupid but what does EDS stand for? The pt I have is wonderful, I had her before I was diagnosed with Chiari with syrinx and when I came back she had done research on my condition. The only thing she works on is my balance and does ultrasound and massage therapy on my shoulders. If anything hurts or if I get tired she tells me to stop and rest.
I spent approx. four weeks in inpatient neuro rehabilitation. My case was pretty extreme but I did Occupational therapy, physical therapy and speech therapy daily. Occupational therapy was very helpful for me, but I was learning how to live in a wheelchair. I did do a lot of work on my arms and my shoulders and it was helpful very quickly.
The other issue is if u have something like EDS u can not do many of the things the PT has u do for strengthening, like the elastic bands it is not good for an EDSer to do that type of exercise as it is not good for the joints.
Make sure that all ur conditions r addressed not just one!!!
I am an occupational therapist and have chiari and I would agree with selma that you need to make sure you have someone that knows chiari. My neurologist didn't want me to do PT or OT for fear that they would hurt me more. I think that OT would be great for strengthening but really make sure they know what they are doing. Best of luck!!
All my neurosurgeon said was that my balance is getting better and I still need more pt and he wants me to have occupational therapy to work on my arms and shoulder. about two weeks after my surgery I had an ot come to my house but she only came twice then discharged me.
I had twice a week for 6 or 8 weeks I think. I think it was about 5 months after surgery and it did help but at one visit I had a huge pain and my first post surgery Chiari cough headache pain with one of the things they had me do and it resulted in a HUGE headache, I have just been found with a pseudomeningocele and I really keep wondering if it could have been happened that day??? I know I will never know and it did help with getting my neck a bit better but I wish I had been clearer on telling them I wanted someone really familiar with Chiari! I am doing my second surgery next month and I keep wondering if I will do PT again!
Hi, I was supposed to go and didn't...partly bcuz of cost, and how to get there as I still am not able to drive. And at my 6 month post op exam found it was good I did not as I had a bulging disk prior to surgery that had slipped further and PT would have made matters worse.
OT is a bit diff, and depending on what they r trained to help with...it may prove beneficial.....make sure they know about chiari....I went to PT b4 my chiari dx and not one of the PT's noticed I had EDS, I would think they should be able to recognize it.....
Did ur NS say what or why he feels u will benefit from this type of therapy?