My pre-surgical consult went well, as well as these things can go anyway.
The surgery is about 6 hours long, 4 day stay is accurate unless there are complications, and I will lose about 90% of the mobility in my neck and shoulders.
No left/right turning of my head, my shoulders will also be fixed.
He's doing a full laminectomny, no new disc installation, but he will be installing new titanium rods from C2 to meet up with the top of my current fusion at T3.
He says the new rods will just hook on to the top of those rods kind of like tinker toys.
That they just attach a piece, and slide the new rod in, and twist to lock it in place.
After this, I will be permanently fused from C2-S1.
That's a huge fusion,
They will be shaving my hair off from the base of my skull down.
I have a lot of hair, so he has to do it, and it will grow back.
I keep telling myself it will grow back, it's just hair.
But I love my hair. *sad face*
He thinks I have something called Riley Day Syndrome.
I don't fit all of the criteria for it, but a good number of the symptoms.
I've never had a seizure to my knowledge, and I do feel pain, believe me, I feel pain, but I do have the low muscle tone, the bowel issues, the smooth tongue, high blood pressure, excessive sweating which gets worse when I eat, and when I do vomit, it lasts for awhile, and will go on for hours.
# Irritability # Insomnia # Worsening of muscle tone
Those are things which have gotten progressively worse over the years, I have very bad muscle tone in my lower legs and feet, I have an unsteady gait etc etc.
I suppose that after surgery, I should probably see about having this test to find out if that's what this all is.
I'm adopted so the whole Eastern European Jewish ancestry thing is a possibility.
It would possibly explain the amount of body hair I have too.
"With advances in diagnosis and treatment, survival continues to improve. Currently, a newborn with Riley-Day has a 50% chance of reaching age 30."
Well I beat that part of this eh?
Anyway, it's going on as scheduled, just my physical tomorrow, hoping Dr. Ford clears me because the more Doc Moreno talks about this and keeps repeating the whole "sudden death" thing, the more anxious I'm getting.
If she doesn't clear me tomorrow, I may have to kill her.
Then Thursday, I have the actual surgical testing, ekg, blood work ups, heart tests, neck brace fitting, and the signing of the papers, Will and DNR.
Then Friday, the mammogram and then Monday, surgery.
But right now, I need to get something to eat.
It was a long day and I'm wicked way hungry.
====================
The surgery is about 6 hours long, 4 day stay is accurate unless there are complications, and I will lose about 90% of the mobility in my neck and shoulders.
No left/right turning of my head, my shoulders will also be fixed.
He's doing a full laminectomny, no new disc installation, but he will be installing new titanium rods from C2 to meet up with the top of my current fusion at T3.
He says the new rods will just hook on to the top of those rods kind of like tinker toys.
That they just attach a piece, and slide the new rod in, and twist to lock it in place.
After this, I will be permanently fused from C2-S1.
That's a huge fusion,
They will be shaving my hair off from the base of my skull down.
I have a lot of hair, so he has to do it, and it will grow back.
I keep telling myself it will grow back, it's just hair.
But I love my hair. *sad face*
He thinks I have something called Riley Day Syndrome.
I don't fit all of the criteria for it, but a good number of the symptoms.
I've never had a seizure to my knowledge, and I do feel pain, believe me, I feel pain, but I do have the low muscle tone, the bowel issues, the smooth tongue, high blood pressure, excessive sweating which gets worse when I eat, and when I do vomit, it lasts for awhile, and will go on for hours.
# Irritability # Insomnia # Worsening of muscle tone
Those are things which have gotten progressively worse over the years, I have very bad muscle tone in my lower legs and feet, I have an unsteady gait etc etc.
I suppose that after surgery, I should probably see about having this test to find out if that's what this all is.
I'm adopted so the whole Eastern European Jewish ancestry thing is a possibility.
It would possibly explain the amount of body hair I have too.
"With advances in diagnosis and treatment, survival continues to improve. Currently, a newborn with Riley-Day has a 50% chance of reaching age 30."
Well I beat that part of this eh?
Anyway, it's going on as scheduled, just my physical tomorrow, hoping Dr. Ford clears me because the more Doc Moreno talks about this and keeps repeating the whole "sudden death" thing, the more anxious I'm getting.
If she doesn't clear me tomorrow, I may have to kill her.
Then Thursday, I have the actual surgical testing, ekg, blood work ups, heart tests, neck brace fitting, and the signing of the papers, Will and DNR.
Then Friday, the mammogram and then Monday, surgery.
But right now, I need to get something to eat.
It was a long day and I'm wicked way hungry.
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