hey thanks Jules and fellow Eagles
would you believe the tinnitus is back? and the whoosh whoosh, I think it is the swelling to be sure, it has only been a day and a half.
I just now managed to eat and swallow some soft cereal at almost 5am aussie time, been unable to manouvre my tongue to eat successfully since.
some of the numbness from the long lasting “caine” type anaesthetic has begun to wear off and is allowing more movement in mouth.
I have real concerns about the weakness in my mouth. As mine is bilateral vascular ES, I was stressed to the max about head position during surgery as I feared having another small stroke during surgery if my head was turned. Now, my mouth is lopsided. I cannot smile as the left side just gapes open and can’t talk properly. I really tried to get this across pre-surgery but had the feeling that my concerns about “vascular” were not heard or taken on board as much as I would have liked.
So, the surgeon is supposed to be calling me today sometime, and to organise a wound check prior to me flying home on Thursday. I have to fly as my accomm will run out and I don’t want to pay for a hotel to be on my own so will fly home and at least be able to stay with a friend and then tee up some support if I need it at my place over the weekend.
it was not going to be a straight-forward, dream patient, kind of deal for me, and I think this contributed to the surgeons reluctance. I have considerable neuro deficits from, what I believe to be untreated tia’s and some small strokes, all these years leading up to the ES dx and surgery. On top of that, am living with chronic pain and such from EDS - have been on fentanyl patch for 18 months so you can imagine I wasn’t sent home with anything stronger than panadol.
I have had terrible fevers and chills today, managed to shake most of that off I think by now. My wound site got very red and been trying to keep ice packs to the site but so sore that the pressure of the ice pack is a bit much to bare.
So not your average patient, not a textbook presentation when all the other stuff has clouded the mix for me. I do know, and have done now for months, that the vascular ES has been at the middle of all of this and literally beating the hell out of me full-time now for 4.5 years and prior to the head/neck injury that brought that on, part-time for 5 years. Horrid to think it was there on the imaging and nobody noticed. I was having tia’s and vascular accidents then the accident in 2012 nailed me and was, I believe, having very small complete strokes which show up as lesions on my mris.
I really tried to discuss this with the surgeon and he was reluctant to accept it I think, since it had been missed and misdiagnosed all these years, saying “functional neurological disorder” which just, as far as I can tell, is a fancy way of saying “we don’t know/it’s all in her head”… you know the drill fellow eagles, being mismanaged for so long, it’s really hard to face yet another white coat who could dismiss or worse, mistreat. So… one hellova journey, one that has fundamentally changed me, pushed me and broken me so many times…until I figured it out!
so, I hope the call goes well with the surgeon, that I get some answers, if I still have the new mouth weakness when I get home I will see if I can get into a neuro apt at the public hospital up there to assess for stroke. Not what I had in mind for recovery but…gotta be done if this is the case.
I knew, at the grand old age of 48, will all this under my belt, that I would need a little support and help for a week following surgery, as I have some support needs physically beforehand. I use wheelchair and mobility aids and live alone ya know?
will keep you alll posted and thanks so very much for the opportunity to air and share