Ariana, post-op question

[Guest guest]

Hi all,

Well, the past month has been a roller-coaster that has felt very fast and like

a year at the same time! I'm updating mostly on CaringBridge for those

interested (www.caringbridge.org/arianaj4jesus) because I don't have the energy

to update more than one place. However, I'm overdue posting an update there as

well.

In short, Ari had her decompression and cervical fusion in NY with Dr. B on

November 30. It was expected to take 8 hours and took 11. Once he got in there,

he found that her cerebellar tonsils were completely wrapped around the artery

of her brain stem! It took hours to free them, and then he was able to cut them

off completely! He told us he needed to change his underwear after that (any

wrong move could have killed or paralyzed her). He then had to do the fusion

twice because her skull was too thin to hold the screws in the first area, so he

had to start over and anchor it higher up. In the end, he was very happy with

the results.

This first two weeks post-op were a nightmare. She was basically unresponsive

for days, and finally when I insisted to the nursing staff and residents that

something was wrong they did an emergency CT and found that she had brain

swelling and hydrocephalus. After a couple of days of Manitol and Decadron,

there was little change, so she had to go back to OR to have a ventricular drain

put in (basically the same as a shunt but draining into an external bag instead

of internally). It still took a few more days for her to be more alert, and then

she was in extreme pain and irritable (understandable of course but hard on the

nerves of sleep-deprived parents).

Gradually she became more alert and started eating like a dinosaur. She had

never eaten so much in her life! The doctors said it was because of the

steroids, but the appetite has continued now almost 4 weeks post-op, and she has

gained 10 pounds! Dr. B said all along that her life-long feeding issues could

easily have been caused by both anterior and posterior compression!

Even though Ari was more alert, she was still in extreme pain, and various pain

medications didn't help much, and she was only able to get out of bed to a chair

once a day. Then one evening there seemed to be a crisis after she was in the

chair and back in bed. She started screaming and couldn't move. Then blood

started coming from her brain, filling the drain bag! The residents refused to

do anything, and Dr. B was in the UK (which he had informed us of). We were able

to email him in the middle of the night, and he ordered another CT. By then,

everything looked fine on CT, and the bleeding had stopped. We're convinced she

had had a clot in there that wasn't showing up and passed because the next

morning there was a miraculous improvement (plus, the blood had to come from

somewhere). She was completely alert, talking, moving around, and even

laughing! They removed the drain, and two days later she was discharged! She

only required the help of a walker once before walking independently, even going

up and down stairs. It was a shocking turn-around. We stayed at RMH for two more

days and then flew home. We were in NY away from our other three kids for 3

weeks total.

Ari is now almost 4 weeks post-op (Wednesday). The most notable improvement is

that she hasn't had a single tic since surgery! These had become almost

non-stop and were a source of emotional and physical anguish for her. She's also

still eating tons and hasn't complained of much dizziness.

However, other improvements that are surely present are masked by her

personality change (for the worse ). Before surgery, she was often but not

consistently irritable. Many people said this was likely from her CSF blockage

and/or pain. However, most of the time she was considerate, happy, and

compassionate, and the words most people used to describe her were funny and

positive. Since surgery, we have a different daughter, and I'm actually

dismayed. She is constantly agitated, argumentative, calling people names,

yelling, belittling, etc. She has even used some pretty vulgar profanity that is

not used in this house. It's pretty shocking, especially coming from someone

who that is not typical for. I'd love some encouragement, thoughts, or ideas

from others who have experienced this AFTER surgery in themselves or their

children! We were not expecting this at all, and I have to say that none of us

are reacting to it well. I suspect some of it may be due to the Dilaudid (which

is a pretty low dose and we're weaning anyway), but I don't think that's the

only explanation.

Physically, she is doing amazingly well for the most part. Dr. B used plastic

surgery technique and material to close her incision, after her skin wouldn't

come together. Everything is internal, and aside from a few scabs that are left,

the incision is hardly noticeable! I've never seen pictures of anyone else's

that look this good. The incision itself is also relatively short, about 6

inches. Her hair is growing VERY fast and is already hiding the incision pretty

well. She's able to go up and down the stairs and pretty much anything else in

moderation and is doing PT exercises daily.

The other question I have is for people who have had fusion themselves or whose

kids have had it. Her head/neck is quite significantly tilted to the right. She

is able to hold it straight but only with concerted attention. This still

happens even in the brace that she wears all the time except to eat and sleep,

which is also odd. Something doesn't seem right about that. Is it a temporary

muscular thing, or is it possible due to positioning in surgery that the

hardware on that side is uneven? I've always heard reports of necks being more

stable and straight after fusion. I've never heard of the head being crooked

afterwards (she did not have a tilt or droop at all before surgery).

I guess that's all for now. Thanks for all of the encouragement and support for

all these years, and watch for updates on CB.

Beth, Mike, and Ari (age 13- prior 22mm herniation, EDS, TC, scoliosis, RO,

cranial settling, now with PFD and CCF to C-3)

Sent from my iPhone

[Guest guest]

My head tilted significantly toward the right and down for a year after

decompression. In my case, it didn't start to correct until I changed my

muscle relaxant from Flexeril to Zanaflex and had nearly a year of physical

therapy, and I'm not sure exactly what was responsible for the correction.

In a message dated 12/27/2011 6:35:37 A.M. Eastern Standard Time, " Beth

Culp " _avidforlife@..._ (mailto:avidforlife@...) mommybeth2six

writes:

The other question I have is for people who have had fusion themselves or

whose kids have had it. Her head/neck is quite significantly tilted to the

right. She is able to hold it straight but only with concerted attention.

This still happens even in the brace that she wears all the time except to

eat and sleep, which is also odd. Something doesn't seem right about that.

Is it a temporary muscular thing, or is it possible due to positioning in

surgery that the hardware on that side is uneven? I've always heard reports

of necks being more stable and straight after fusion. I've never heard of

the head being crooked afterwards (she did not have a tilt or droop at all

before surgery).