you have certainly been through a helluva roller coaster ride girl! I bet you're tired of feeling like a human pincushion!!!
I'm curious, with EDS, when you have fevers, does your skin hurt to the touch? I know I've read about the different levels(for lack of a better word) of EDS which some firms do mention what you're describing...
I know Selma will have a much better answer for you, as she does so well. But it does ring a bell to me.
I know that when I have a fever, 1st thing I know (I can tell befote I get the fever) is that my spine feels like a swollen brittle tree trunk-AND my eyelids burn horribly. As well, my skin hurts everywhere...like electric shock of someone touches. Even a soft blanket hurts.
Keeping you in my prayers & thoughts..you're one tough chic!!!!
Please keep us posted! And your shunt revision surgery is on Feb. 16th for sure, yes?
<3 <3 <3
Just thought, so you had a bovine patch for your dura? How long have you had that? I know that those w/EDS often reject foreign materials (mesh, implants as well as other tissues, such as bovine). As such, NS's will harvest your own tissue so as is your best chance of not rejecting it. I know that b/c of my auto-immune ...and b/c my NS said he always prefers to use the persons own tissue, as he did w/mine.
Could the fever, nausea, etc. be sx. if rejecting that? But, you also have a shunt to contend with & your body "accepting" that.
Again, you're one heck of a trooper!!!! And I cry over my brick!!!!
Just thought about this (dura patch) after I posted above.
I have EDS and my NS knew so but still gave me a bovine patch and a mesh plate. It's been 6 months and I've had issues ever since. Not sure if having a reaction to the patch or not. Didn't you originally have a harvested patch and then replaced with bovine? That's really strange. But nothing really surprises me lately! I hope you get to feeling better and can go ahead with your revision surgery soon
Hi...the color on your sclara is related to EDS, I have it as well....and it could be the dura patch that was used your body may be rejecting it....and could be the reason they thought you needed the shunt....could be they need to replace the patch......
It is very confusing as to what is going on as we all react differently to so many things it is hard to say if you have EDS a bovine patch will not work....just as the Dr can not say I used them others with EDS and they had no issue so you won't either....sigh....
As for the low temps....I always have had low temps, low BP....as long as I can remember,,,,it is a common thread that ties us all together it seems...
Were you DX'd for or tested for POTS?
There is no stupid question and even tho it is high jacking her thread, I was asking you and not beat about the POTS.....
I do use the member's name b4 each post....doesn't it show?
I also have a low temp. It's usually 97, so like all of you, anything higher than that I start to feel sick. And also the low BP. I have orthostaric hypotension diagnosed from a tilt table test but no one mentioned the word POTS to me. Of course that was way before the chiari diagnosis. It really does seem strange that all of us have these common factors huh ladies?
Deff see a cardiologist to make sure your heart is ok and also look to your families medical history....but we all should have POTS ruled out if we have the symptoms and you do. A tilt table test is a start for this.
From what I understand the BP change flux with change of positions....blood pools in the lower extremities which causes the dizziness when standing or changing positions......
I do not have POTS...my niece does....and a few of my friends....but you seem to fit the criteria for it.
Just reading this now, don't know why I'm not getting notifications in my email on posts, but anyway, to answer your question Emme, I didn't have my thyroid removed. It was very swollen when I first went to see my endo but the right meds (Synthroid + Cytomel) have helped that, and stopped the hair from falling and some of the bad brain fog. (So hard to know what is from what, for sure!)
My T3 was a bit high the last few times but I am so tired I begged him not to lower the dose so we are staying with that dose for now. I am not even convinced that what I have is Hashimoto's. He dx me with it even though my antibodies were not raised. Then he said the flattened pituitary isn't affecting my thyroid hormones, so at this point I'm kind of confused lol.