What next

[Marybuzz27]

Well I'm back on here after spending the past month in the hospital for chemical meningitis and severe dehydration. While in there I got an infection in my incision so I had to have a second surgery where the found a small csf leak. It's been almost three weeks since my second surgery and I was discharged from the hospital this pay Wednesday. My problem is that my incision once again isn't healing. I ended up getting a diagnosis of eds while in the hospital. My incision looks like it's coming apart instead of together and it's very sore and painful. I have an appointment with my NS tomorrow. But I was wondering if anyone knows how they will treat it. Will he just stitch up the wound again or does it involve more surgery? Thanks for any help!

[zygy2]

So sorry you feel that way!  I felt the same way for a long time but now as I am getting back to normal I am getting to a point that although I would not want to do it again I am happy that I made this choice.  I hope you get to that point one day!  Keep fighting for help and answers!

[Marybuzz27]

I'm to the point where I really regret having the surgery . My symptoms are worse now then before.

[Marybuzz27]

Thanks for sharing! I don't know what I'm going to do. I have another appointment with my ns on Jan 2. I don't know if I can wait that long . He is a great ns and I trust him completely but if he won't explore the option of patch rejection with me I might have to find someone else and will probably have to go out of state to do it. It's such a frustrating process. No one wants to listen . I know my body and I know when something is off. I really don't think he will open me up for a third time unless he has to . I just can't take spending another month in the hospital. Patch rejection is the only thing that makes sense to me . I'm getting random rashes and break outs and the headaches I have now aren't the same as the csf leak ones I had before . They are more like the chiari headache that starts in the back of the head. Except it stays there and doesn't spread but I feel like the back of my head is going to explode. And I can barely sleep because my incision hurts so bad .  

[zygy2]

Reading this reminds me a lot of my complications!  If things keep going wrong I would do as Selma says and find a second opinion on the patch.  I started with a synthetic patch and had leaks.  They told me chemical meningitis too but who know, lots of things were just not going well.  When I had my patch repaired in the second head surgery it caused more problems because even though the patch looked fine when he opened my head, he could not see that it was stuck to my cerebellum!  When he closed up the leaks it changed the flow of spinal fluid and that lead to it drilling a hole in my cerebellum and an emergency third surgery.  Enough of the old patch was not removed and because of continued leaks I had to have a forth surgery for my head and he made sure to get out all of the synthetic patch and then used my tissue and sealed it really really well.  My head only healed right once I had my own tissue.  I did not know I had EDS or POTS before all of this and it was a 3+ year process with a lot of surgeries ( I also had shunt surgery to try and reduce spinal fluid pressure so that my patch could heal).  Just make sure that if you continue to have problems that someone looks into the patch being the problem.  I hope you feel better soon.  I really feel like if they listened to me with the first surgery and used my tissue that I could have avoided all the complications!!!  They have to start  looking for things like EDS before we have surgery!  -Zygy

[selmaS]

  Here is a link to the EDS group here on MedHelp....u may find some helpful info in there - http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417

[selmaS]

  But u have had a leak already that would be due to the patch....

Are u sure the leak has resolved?

The NS I had used my own tissues to form my dura patch as I was less likely to reject my own skin....and all that tend to have this issue find out they have EDS post op...have had most issues u have had....JMHO...and from what I am observing .

U may want to get another opinion.

[Marybuzz27]

My dura patch is synthetic. I asked my ns about rejection and he said when he did my second surgery he looked at the patch and it was fine. I'm still not convinced. I've been having random breakouts on my chest and neck area where my incision is and I'm having terrible headaches in the back of my head.

[selmaS]

  Hi....EDS is one of the main reasons we have these set backs post op....u will want to contact soccero as she has had many issues with the incision not closing....and can share what she found to help.

Her mom did some research into things I had never heard of and right now can not remember,,...but I do know she is the one u need to talk to.

With EDS the skin is fragile and will tear open with each attempt to close....

This is y I am always saying rule this out b4 surgery as it can affect how u feel and heal post op.

May I ask, what type of dura patch do u have?