Back in October I was diagnosed with a collagen elasticity disorder by my geneticist here at the children's hospital in Denver. I am now waiting for hip surgery and have two options; the more thorough open surgery and a less invasive and less thorough arthroscopic surgery. My parents and I are worried because I have such a problem healing and my orthopedic surgeon isn't really addressing our concerns. I have seen lots of talk about Dr. Francomano, I was wondering if she is willing to do email or phone consultations. I am sure that the wait time to get in to see her is astronomical and I am hoping to get it over with sometime in the next month, the genetics department here only does basic diagnoses and it takes 6 months to talk to anyone. If you have any recommendations for anyone else to talk to who could help me out that would be greatly appreciated. Thanks!

Reading this made me very concerned. EDS patients often do not have typical surgical outcomes-- I would really hope you could have someone with expertise have some input before the surgery. Not only are skin and incision healing correctly a concern, there is also sometimes an issue with the PT to recover. And, the way joint function for some EDSers is unusual enough that sometimes the surgeries themselves don't work.

I'm not criticizing your orthopedic, but I really want you to have a good outcome!

OK, enough mom-type worrying for tonight.

***hugs***

Liz

We are trying to get another opinion from "the only other qualified hip surgeon in the state", however the clinic he works at is a 5 hour drive from home and I don't think that's going to be very pleasant after hip surgery. We are kind of short on time too because we need to do it before the end of the year so that we won't have to pay anything out of pocket, and I can't go on like this for much longer. My mom is going to call her rheumy tomorrow and see if he can recommend anyone.

Etyrnity...

You could if need be transfered to a hospital nearer home by ambulance just before you should be discharged, so that it is a much shorted trip by car when you are discharged...

Travelling lying down will be more comfortable for you that travelling sitting up etc...

Good Luck with finding a surgeon and getting the surgery soon and with the surgery itself and the recovery afterwards...

***hugs***

Yes, I agree, we can't have our spoonies suffering, so I understand about the need to act soon (and avoiding out of pocket expenses is important, too). Here are some extra spoons to help you keep going while you work towards a resolution.

Perhaps the other hip doc can give an opinion about which surgery would be better.

Thinking of you,

Liz

Everyone is different, but I would really try to see someone familiar with EDS prior to determining surgery type.

Here are some things to think about: Have you ever had surgery before? If so, how was your healing time? Do you have the wide, atrophic scars and skin involvement typical of C-EDS? How elastic is your skin? If you haven't had surgery, have you ever cut yourself and needed stitches? If so, did they comment that it took longer to heal, or that you scarred more than expected, or anything like that? What about wide stretch marks for no good reason (striae)?

A friend of mine was originally typed H-EDS but when she saw a geneticist, and the geneticist saw her scarring patterns from several failed attempts to repair her shoulder, she reclassified her as C-EDS, even without so much of the classic skin stretchiness/elasticity on exam. This same geneticist saw me and said that while it's good news that I haven't had to have any surgeries, and while so far I don't show signs of C-EDS, the typing system is far from perfect and I should still avoid surgery if at all possible, and if I get stitches, to get two layers instead of one: one at the muscular level, below the surface, and another on the skin, and to always allow twice as long to heal.

If you can't get your insurance to cover an ambulance transport to another hospital (which is an excellent idea, but I know how insurance companies can be), perhaps an alternative would be for your driver/family member to rent a different kind of automobile like a van in which you could safely lie down. Let them know you have a long drive and be sure they give you adequate medication to take care of any anxiety, pain, and nausea you may have on the long trip home. If you could be sedated and more free of pain and nausea, it would probably help make the distance much shorter.

Please keep us updated and I hope you can get the best possible care and recovery.

Thanks guys. The idea about a different type of transportation home is a good idea, I will look into that. I did have arthroscopic knee surgery 3 years ago and took ages to heal from it (my scars still opened up for 2 years afterwards). I do also have the wide scars and some elastic skin as well as wide stretch marks for no reason. We are hoping to get a geneticist that will actually work with us on board before the surgery. Do you think I could get the number of the Dr. your friend saw so that we could see if she would do phone or email consults?

This is the geneticist my friend and I both saw (she recommended her to me):

Geneticist:
Jodi Hoffman, MD
Tufts New England Medical Center
Boston, MA
(sees adults and children, even though they're in the Pediatrics listings)

PM me for contact info, I know we're not supposed to post that directly on the board.
Or go to this website
http://www.tufts-nemc.org/apps/FindAPhy ... fault.aspx
And type in her name in the appropriate fields.

I don't know if she does stuff by phone or email, but she might know someone in your area even if she doesn't.


I would DEFINITELY tell your new surgeon (and any geneticist you get to work with you) about your healing/scars reopening process from the arthroscopic knee surgery. That is probably a very good indicator of how your body reacts to these kinds of things, and will be helpful in "typing" or narrowing down your EDS as well. (I know this because it's part of the questions I was asked during the diagnostic process).

You might also try ednf.org (Ehlers-Danlos National Foundation); I believe they keep a list of doctors by region who work with EDS patients. (Though the site is far from perfect.)

Also, I used to be on a mailing list (well, I'm still on it, but set my preferences to "no mail" because I have too much to deal with as it is) through yahoogroups called 'EDSers' . You could try posting there (and again here, in a separate post, with a more specific subject line looking for a doctor) asking for EDS experts within your area.

This is the link to that mailing list; right now it has ~500 members, I think:
http://health.groups.yahoo.com/group/edsers/

Good luck.

Here are some links I just looked up and found which might be helpful as well; they are on EDS and Surgery etc...

http://www.ehlers-danlos.org/Info%20She ... _scars.htm

http://www.ehlers-danlos.org/Info%20She ... urgery.htm

http://arthritisinsight.com/medical/surgery/eds.html

Hope they help...

I saw my PT today and we discussed my options and we are going to make sure that my rheumy is involved and will try to find a geneticist to talk to before then. We did discuss my healing problems previously and decided that the benefits outweigh the risks. We are scheduling it tomorrow. On the plus side, my PT agreed that getting a new wheelchair that is light enough for me to manage on my own is a good idea and is writing a letter of recommendation to my doctors so that hopefully insurance will pay for it. We were originally planning to pay out of pocket so this was a nice surprise. We also discussed more joint friendly options instead of crutches for recovery and that she will talk to my surgeon and help manage my recovery so that I can go at my own pace. She has been working with me off and on for the last 4 years.

Thank you thisgrey for your recommendation I will work on contacting her tomorrow!
Thanks for the links Shaz they look quite helpful.

I'm glad you're able to get a treatment plan going. It won't be easy I'm sure, but it does sound like you're making informed decisions as a *partner* in your treatment, and in the long term, I'm really glad you'll feel better for having the surgery. And congratulations on being one step closer to a wheelchair you can manage on your own.

Let us know when you can hook up with a geneticist, too. I don't know how much Dr. Hoffman will be able to help but I know she's good locally and might know someone out there to recommend.

May I ask what you're going to switch to instead of crutches (is there something other than the lightweight wheelchair?) My physiatrist just wrote for my first lightweight rollator...I'm new to all of this (not new to feeling bad, but new to the diagnosis and having coverage)... it has a basket and a seat so I can stop and rest... this is the one she picked out for me:

http://www.alimed.com/ProductDetail.asp ... id1=&oid2=

(I have a bum hip, too, in addition to a lot of other things...not quite like yours, but I'm curious to learn how people manage these things, don't mean to be nosy...)

I'm sorry if I missed it, which type of the surgery did you decide on then? I am glad to hear that you were able to find someone to listened to your worries & was able to help you weigh out the pros & cons.

We decided on the open surgery. It is to fix my hip impingement, a labral tear, and to reshape my femoral head. She is going to have me try forearm crutches and a some different kinds of walkers while in the hospital, I'll let you know exactly what I tried and what worked after. We are going to try calling the geneticist I saw, but I think we are going to get me in to see Dr. Francomono if insurance will cover it (after the surgery).

EDIT:
I am scheduled for September at 7:30 I have to check in at 5:30