For those of you who have EDSIII or hypermobility

[MightyMouse]

I posted this within my neuro update, but feel it's important enough to have it's own spot so this doesn't get lost. Nina

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There is something I wanted to share for my fellow hypermobile members or those with Ehlers Danlos III.

Teri was talking to one of the orthpedic surgeon's at her hospital about my spinal predicament. She told him about how my first graft failed, and 2nd graft was needed. Then she told him about how I found out I had EDS III aftwerward--at that point he said "OH no, she shouldn't have had a fusion... she's probably in the midst of a disaster now."

I think Teri was a little surprised, but then he went on to say that a person with EDS who has a fusion will then typically have a chain reaction of herniations because the joints are too loose to handle all the day to day stresses.He also said that I would be likely to not have problems much below T1 because the ribs help to absorb some of the stress and spread it out a bit more.

Live and learn I suppose. But I did want to share it with all of you so you wont have to learn the same lesson the hard way.

Nina

[violahen]

Hi:

Thanks for the info. I am also a POTS person with hermobility.

I hope you're ok!

Good luck!

Kristen

[Guest Julia59]

Dr. Milhorat and Bolognese are going to be involved in a studay with EDS---and spinal instability----I'm not sure when---and I can't remember where I saw it. I think I read about it in one of the posts from WACMA via e-mail.

When I was taking my anatomy and physiology classes the Instructor who was teaching was also a MD. I was in the classes by Sept. of 2002 just three months after my surgery. I was just out of my hard collar. His thought was that I would suffer more in the future with more instability, but he never really explained how he knew that.

I was plated in the area that was fused on C5,6, and 7 which helped that area stay stable---preventing the disk collapse much like you went through Nina. BUT unfortunately, I have had a rapid decline in the area's both above and below the fusion. AND I MEAN RAPID! I have herniated diskes between C3 and 4 which hasn't been mentioned much as it is a small herniation. And a bit larger herniation between C7 and T1, and lower in my spine on L5/S1. And of course the cervical/cranial instability at C1 AKA (retroflex odontoid), chiari and cervical spine stenosis--------thus the chain reaction. I was born with the chiari (small posterior fossa) and stenosis, but I think the herniations got worse after my first surgery---as did the cervical/cranial instability.

The major worry for Dr. Bolognese in my case is the cervical/cranial instability, as he in concerned about cranial settling most likely due to the EDS. Right now I am trying to get used to the cervical/thoracic vest-------NOT FUN---NOT AT ALL FUN!!! The rods that go up to the cervical collar are actually pushing my chin---thus stretching the ligiments in the back of my neck further. I am to wear this contraption for three hours a day for a month. And I am to always wear it in the car. Well can't drivee with that on! I'm going to see if he'll let me wear the hard collar in the car instead. I can atleast put around town in that. I don't go far anyway due to all the fatigue.

My EDS was officially diagnosed by Dr. Bolognese in July when I went to the TCI.

I knew I had it, but I was kind of being blown off about it at first in Toledo-------UNTIL they saw me demonstrate. The kicker was when I touched the floor flat handed with my HEALS on. Hurt though---as bending forward always puts more pressure on my neck/cranial area.

Thanks for the information Nina. Hang in there---I hope things will turn out well for you.

Julie :0)

[MightyMouse]

Julie, at 40 I'm still able bend over with my palms completely flat on the floor. I'm also able to do a split with either leg being to the front or back. My pinkie fingers can bend backwards to within an inch of the back of my hand and my thumbs can be bent forward to touch my wrist easily. I've seen the brace that you are wearing in a catalog. Looks unpleasant! I hope that it at least helps you--and that you can go for the hard collar for driving.

I'll be interested to see whatever medical studies come out regarding hypermobility and spinal concerns.

Nina

[violahen]

Yup,

I can do the flat palm heel down thing as well....in addition to several other "tricks"...I was shocked to find out from Dr. Grubb that this was common for POTS/dysautonomia people. Although it makes sense I guess.

Also, I am a professional musician (violist-which is like a violin only a little bigger) and the hypermobility issue has come up frequently due to the physical nature of playing. My fingers are all super loose...which in a way is both good and bad for musicians....I am very flexible, but sometimes to a fault and I need to struggle against the flexiblilty throughout my body.

I also tend to dislocate joints frequently....knees, hips, shoulder, limbs....not fun.

Glad to know I am not the only one....

Kristen

[danish]

I have a question for you guys. I can do all of these things that you guys are talking about-- splits, bending my thumbs back to my wrists, bending my pinkies back, touching my hands flat on the floor w/ straight legs... Isn't it possible to just be flexible? I used to iceskate pretty seriously and also dance, so I just always assumed I was very flexible, plus I'm young. I've never dislocated anything, so does that mean that I probably don't have Ehlers-Danlos? Or should I bring it up with my doctor?

Thanks,

Sarina

[MightyMouse]

Yes, it is possible just to be hypermobile. There are specific criteria for EDS, which you can find on the EDS website. http://ednf.org/nosology.html

My dislocations and sprains didn't start until my mid-twenties. Nina

[Guest Mary from OH]

Nina -

I was just thinking the same thing. My drs have always told me I was extremely flexible. All the things you mentioned, I can do. I am going to go the website you mentioned, but I'm afraid...

I TOTALLY blew out my right knee when I was in college. I was on the gymnastics team and landed doing a simple dismount and BLEW out EVERYTHING!! I tore EVERY ligament and have no meniscus left. I now have my middle third of my pattelar tendon functioning as my ACL and have two screws and 2 pins holding my knee together. I was in PT for a solid 1 1/2 years. I also blew out my R ankle at the same time, but chose never to have surgery.

I have constantly dislocated things since childhood. Still do.

Also, I dance for 13 yr+ as a child and when it came time to move on to pointe shoes, I couldn't because my joints were too "loose" and my teacher explained that I would injure myself constantly. I was devasted. I never danced ballet again.

Now... I'm a little worried.

Maybe I'll get up enough courage to look at the site.

[Guest Julia59]

Yes, I also think it's possible to just be flexable. I did't even think about EDS until I started to dislocate things myself. My dislocations have just been within the last year---year and a half or so. Very recently it's been pretty bad. My right shoulder blade seems to be the one that is most frequent. I felt my whole right hip start to dislocate, but it popped back---that would have been real ugly.

My hands are not that flexable----but they are also big. My thumb almost touches. My shoulders, hips, ankles, wrists are giving me problems as far as stability goes---and of course my spine---mostly the upper neck area-and cranail junction. Another thing I notice is when I press down on a table with my fingers---)especially the middle), they sometimes pop or partially dislocate.

The thing that freaks me out the most is how quickly this has all happened. Doesn't seem real. I know I have been flexable all my life---splits---and all the fancy yoga moves folding up my legs, putting them behing my head ect.----but it seems rather sudden to be having this dislocating stuff going on. Even though I knew I had EDS---at the same time i'm wondering if I made a mistake. I think it's a form of denial because of how rapidly the symptoms of EDS kicked in. When Dr. Bolognese confirmed the EDS I was still surprized, even though I knew I probably had it----does that make sense?

I do think that people are a little different in their symptomology regarding flexability--and dislocating issues. Meaning that while two people have EDS III, they are not always affected the same. Nina has more flexability in the hands---as I do not, but we are both diagnosed with EDS III.

Just recently I read in one of my WACMA posts that there is a study going on regarding EDS---I think NIH. I'll try to find it. I deleted thins morning, but I can try to e-amil the person that wrote it.

Julie :0)

[MightyMouse]

Actually, I was told that my hypermobility had prevented me having a tib/fib fracture when I sprained my ankle. Apparently, most people who have their ankle rotate the way mine did will have a break just below the knee from the ligaments pulling on the top of the bone when they are overstretched. Mine stretched so much that the bone didn't snap, but I did have bruising in the area below my knee.

I wouldn't worry too much about having EDS or not having EDS unless you're already experiencing major issues with your joints/spine. For many, it's mostly just a nuissance and causes some joint aches and pains and contributes to the low blood pressure problems because the veins and arteries aren't as taut as they should be, making it harder to get blood back up to the upper body from the lower portion.

Also, knowing you have EDS gives very little information about what treatment will help you with your dysautomia. I suppose the most important thing is to know that healing time after surgery may be longer, and it's important to keep your muscles in good shape to keep your bones and joints stable.

Nina

[sally]

A person can be very flexible and not have EDS. Ehlers Danlos is usually suspected when there is a collection of problems or signs presenting themselves as listed in the EDNF.org site. The earlier the diagnosis of EDS the better though especially if you are young and involved in sports, dance or many physical activities because of the importance for proper splinting for many individuals. This is to avoid constant dislocations or subluxations and lending to the possibility of permanent damage to the joints and surrounding areas and making the joint pain worse.

As in our daughters case, we didn't know about EDS and years of dance & heavy sports playing caused terrible bone bruising and damage to multiple joints and alot of permanent pain that was unnecessary if we had just known that she had this problem we would have handled things differently as far as proper spinting, supporting the joints while playing and specific exercises to build muscle in those areas needed. Doing these things after the damage is done is just strictly damage control at that point. Also during any PT or occupational therapy it gives the therapist better knowledge of what they are working with to build up what muscles for support of the joints that the ligaments are not capable of doing and for the patient to maintain strength in those areas.

Also anyone diagnosed with EDS it certainly does not hurt to have an Echo done to evaluate the Aorta and valves. Depending on the type of EDS it can be a problem even within the type IIIs they have found problems in that area.

[anemone]

I posted this within my neuro update, but feel it's important enough to have it's own spot so this doesn't get lost. Nina

=================

There is something I wanted to share for my fellow hypermobile members or those with Ehlers Danlos III.

Teri was talking to one of the orthpedic surgeon's at her hospital about my spinal predicament. She told him about how my first graft failed, and 2nd graft was needed. Then she told him about how I found out I had EDS III aftwerward--at that point he said "OH no, she shouldn't have had a fusion... she's probably in the midst of a disaster now."

I think Teri was a little surprised, but then he went on to say that a person with EDS who has a fusion will then typically have a chain reaction of herniations because the joints are too loose to handle all the day to day stresses.He also said that I would be likely to not have problems much below T1 because the ribs help to absorb some of the stress and spread it out a bit more.

Live and learn I suppose. But I did want to share it with all of you so you wont have to learn the same lesson the hard way.

Nina

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[anemone]

Nina

Hello, I am new here and have jopined so I can help a friend with MSA by learning all I can to help him through this horific disease. He soon will be reaching a more advanced stage of MSA.

The reason I am replying to this post in particular is because I have first hand knowledge of spinal fusions myself and belong to an online support group where there atleast another 150 people that also had failed spinal fusions. If it would be helpful to you please do contact me and I will give you more info on fusions and other associated problems such as the domino effect which is the natural progression of instability of the vertabraes above and below a typical fusion.

Meantime

Good Luck to you anbd I do hope your pain is at an acceptable level today!

anemone

I posted this within my neuro update, but feel it's important enough to have it's own spot so this doesn't get lost. Nina

=================

There is something I wanted to share for my fellow hypermobile members or those with Ehlers Danlos III.

Teri was talking to one of the orthpedic surgeon's at her hospital about my spinal predicament. She told him about how my first graft failed, and 2nd graft was needed. Then she told him about how I found out I had EDS III aftwerward--at that point he said "OH no, she shouldn't have had a fusion... she's probably in the midst of a disaster now."

I think Teri was a little surprised, but then he went on to say that a person with EDS who has a fusion will then typically have a chain reaction of herniations because the joints are too loose to handle all the day to day stresses.He also said that I would be likely to not have problems much below T1 because the ribs help to absorb some of the stress and spread it out a bit more.

Live and learn I suppose. But I did want to share it with all of you so you wont have to learn the same lesson the hard way.

Nina

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