LIST YOUR SURGERY DATE - PART 2

[selmaS]

Hi all,

As you are scheduled for surgery please add it to this thread so we know when it is.Please also have a contact person update us on ur progress until u r up to rejoining us.

[Rahe28]

Ok....Let's try this again....

June 7th is my new surgery date....
I am asking everyone to please pray that this it and that surgery will actually be on this day. I at least get to be at my little girls review and get her dressed myself. However, I can't get put off again...it is miserable right now and I am desperate for some kind of relief. ...

[selmaS]

  Ehlers-Danlos Syndrome is a connective tissue disorder and too many only look to see if u r hypermobile, but there r many types of EDS and many with chiari have it.

It can cause u to heal slowly, bruise easy, and be hyper mobile of the smaller joints and larger joints, u can have fragile skin, very soft velvet like skin, stretchy skin, skin that scars easy, tears easy, and for those reason u want to know b4 surgery as it affects how they approach closing, and the dura patch as we  also tend to be prone to rejection of foreign matter. See the EDS group here on MedHelp for more info, there is a thread with links to video clips by a EDS dr who also has it-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

I took a big fluffy pillow and sat in the passenger seat with it slightly reclined
to help balance out the pillow so u r upright, and the pillow keeps ur head from bobbing all over.....I had a good 4.5 hr ride home as we had to stop at te pharmacy.

Surgery is always our choice unless our health is in danger ....so some have had emergency surgery.

[STAINEDMASH70]

What is a Ehlers danlos? I will be ICU for 1 day and then a step down room.  I should be in for only 2 days as long as I eat and use the restroom; but she said I will be able to stay longer if needed.  She didn't say what kind of pain management yet because at my last visit is when I was told it was my choice about the surgery and to let her know.  My NS is 3 hours away.     I'll know more at my June 18th visit.   Any advise for the car ride home?  

[selmaS]

  Hi...the best advise I can give u is be sure u have the right Dr.....and all the testing for related issues were done...like for a syrinx in all areas of the spine, disk issues, ehlers danlos, sleep apnea,

Ask as many questions as u can about ur surgery, what is planned, type of surgery, lamenectomy, with dura patch if with a patch which one?

How long ur Dr typically keeps patient in the hospital, does he place them in ICU...will u have a pain pump,the more u know the better u will feel.

  Look at our Heath page of tips for the hospital stay, as u will want to get a pill box with days of the week and times on it to sort out ur pain meds, stool softeners, and the like so u do not forget a dose....get some  J&J baby shampoo as it is gentle and should not dry the healing skin out.

Get some one dish meals made in advance and in the freezer  and help for a few weeks for house work as u will not be able to lift, bend, push or pull......

[STAINEDMASH70]

No I don't have anyone to do that. I just got a new cell phone so maybe I can do that for myself.   I getting kind of nervous; but my hubby has been my biggest supporter. He was the one that really suggest the surgery. He pointed out all the signs and symptoms to me and noticed them more that I did.     I want to say that our families suffer from this disease as much if not than than we do. Because they can only watch.  They are only helpless bystanders; who want to help. But are not sure how to help.

If there is any advise you can give to me before my surgery.....please give it to me!!!!!!!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

Congratulations on ur surgery Date! For many of us it is a long journey to dx, and finally treatment so this is a big long awaited step.

Do have someone post updates on ur progress post op : )