Best course of action

Hi All new to the discussion boards. I am finding more information here than I wanted initially. I came here out of concern for helping my wife but finding help for myself as well.

I think my wife has EDS. Things started shortly after we were married. In 1980 she underwent surgery for severe 92 degrees of Kyphoscoliosis. She had 18 bone graphs, tefflon discs, Lukie rods and cables. We thought then that things would be good there after and they have been for her back.

Six years ago she underwent a radical histerectomy for uterine cancer and at that time had to correct a huge hernia that must have developed after her c section with my daughter. At that time the incission did not want to hold together very well and we ended up back in the hospital.

Two years ago she had a bilateral knee replacement and at that time the surgeon said he had not seen more deterioration in someone as young as she was.

Friday she had foot surgery on her left foot and the surgeon ended up putting in 36 titanium plates and screws to fuse the foot from the ankle all the way to the big toe. The surgeon's comment way that he found way more instability than he had ever seen before and had to keep going. He said there was very little really keeping things together. Her right foot is more stable but she has a huge bunion on that foot and hammer toes on both feet. Her thumbs are now arthritic and deteriorating. She is 52yo.

Before we were married she had teeth braces but they had to spread the roof of her mouth to make room for her teeth. She takes extra care of her teeth but still needed a root canal last month.

She bruises easily and the scars from previous surgeries have spread very wide and are purple.

She has had a life long weight problem even though she has been low on calories. Over the last 12 years she has lost about 130 lb. She has had a lifelong problem with constipation. She now has a lot of hanging skin and vericose veins.

The present surgeon after seeing the kind of instability she has suggested there might be a genetic link but did not say what yet. Surgery was just day before yesterday.

There has been no diagnosis to date of EDS. What steps should we take from here? She has been regularly exercising but I am questioning some of her diet practices on bone health. Soda pop, artificial anything that will make something taste better without calories,

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Hi Pierre, you sound like a wonderful partner and husband. Your wife is fortunate to have such an advocate.

First-- the annual national conference is in Cincinnati aug 9-11-- meaning, this weekend coming up. If you can attend at all, you'd get great resources and meet great people.http://www.ednf.org/ But if you can't, you'll get a lot from this board and from local support groups.

No one can diagnose at a distance and I'm not a doctor. But it certainly sounds quite possible that your wife has some form of EDS or other connective tissue disorder. Frankly, they can manifest in very varied ways even between siblings, so many of us don't fit into a neat diagnostic category. In other words, with so many things wrong it might be that a knowledgeable diagnostician would say "it's some kind of connective tissue disorder" or "some kind of EDS" but there might not be an exact match. That's OK. Then you just proceed based on practical ways to deal with your particular issues.

It sounds like she really needs to find a doctor familiar with EDS. Your best bet is to contact a local support group. http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ cincy-support-group-1/
or http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ july-cincinnati-eds-meeting-west-chester-area-conf-volunteers/

Dr. Brad Tinkle is one of the best in the country and has been in Cincinnati for years but is moving to Chicago and not seeing any more pts in Ohio. I know he has trained colleagues but your local support groups can tell you more.

There is a very rare form of EDS which includes kyphoscoliosis manifesting within the first year of life. But folks with hypermobile type also get kyphoscoliosis. (links below)

You might give your wife's doctors one of the medical summaries from the EDNF.org site, or
http://www.ncbi.nlm.nih.gov/books/NBK1462/
http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
http://www.ncbi.nlm.nih.gov/books/NBK1279/

Finally, surgery on a person with EDS doesn't always have the same outcomes. The rule of thumb is that bone surgery tends to go well but soft tissue may have a poorer result than in non-EDSers, and stabilization surgery can sometimes exacerbate instability in surrounding joints. Though for some folks it has been VERY helpful.

Please look at the PT cautions on this board.

I know it must be very distressing at this moment, but once a person knows they have EDS or something similar, they can arm themselves with knowledge. Most of us had medical treatments that were unexpectedly complicated before we knew what we were dealing with. There is a wealth of info on this board, and many fine resources. The two of you are not alone any more.

Good luck, speranza

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PierreR, I just want to say they I really feel for all you and your wife are going through. As Speranza says, there are several different types of connective tissue conditions out there. With EDS it seems it can be exacerbated by certain events such as trauma to the body (car accident, a bad fall, etc), for women hormonal changes such as puberty, childbirth, menopause can exacerbate symptoms. From what you have written it sounds like events like these have really impacted your wife. You can read on the EDNF.org site about dental care for folks with EDS as well as PT, as was mentioned. As for diagnosis, if you can't find a specialist in EDS in your area, look for a rheumatologist. There is something called the Beighton scale that is used as a diagnosis tool for hypermobile EDS. You can learn more about it on the EDNF site, or go to YouTube to see. A good rheumatologist should be familiar with it as well. I know this must all seem hugely overwhelming, but you have started the journey to find the answers and that is great. Keep looking and know there are many here that will try to help. This week, as the conference in Cincinnati approaches, many are busy preparing for that. You may get more response once the conference is over. Whether your wife has EDS or another condition, there is good support out there. Take care, and let us know how both of you are doing.

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