Home From TCI...Long

[Guest guest]

Hi Everyone!!!

We got into Utah about 5:30 pm tonight. We had a good trip. We met more

new/wonderful CM patients at VH. As well as their family and friends. Dennis

was great to us as usual. We even got an opportunity to drive out to the tip of

the Island and see an old light house that was built in 1796.

It's been 18 weeks since my PFD Revision/Fusion surgery. That's just over 4

months. It seems like it was a year ago.

Dr. Kula was great. I've never had an appointment with him. Even though we've

met before. He really spent a lot of time with us. I have to clear up a miss

understanding.

I said I had an infection on the rt side of my neck after my Surgery. I

thought that's what told me. I miss understood what she was trying to

say. Dr. Kula very kindly explained that it wasn't an infection that I had.

It was a fluid collection in that spot. I wanted to clear that up.

I went back to TCI because of the issues I've had with my neck. Dr. Kula said

that my MRI showed that I had a bulging disc at the C6-C7 level. It's

something we need to watch. Now that I'm fused C6-T1 will be taking the brunt

of everything from now on. He asked me a couple of times if I'd fallen or had

some kind of accident.

I finally remembered that I had hit my head probably 4-5 times after surgery.

Right on the top and the sides. I kept hitting it when I got in and out of the

car. Also I hit it on our hatch back. A few times I hit it really hard. I

had the bulbing disc before my Fusion. It's worse now.

He said I need to up my muscle relaxers because my neck is about as hard as a

rock. I'm not kidding. He says between the muscle spasms and irritation

from fluid collection my neck needs the right kind of PT as well.

He sent me out for flexion-extention X-Rays the next day. I've not heard yet if

there is any problem with my Fusion or not. I did get to see my X-Rays. It's

pretty cool seeing all that hardware in MY head. My best friend is a nurse who

works with Neuro. patients. She can't wait to see my X-Rays. She's never

seen a Fusion like what I have.

One new thing that TCI is doing that I was very excited about is that they are

working directly with a Physical Therapist on Long Island. They have been for

about 8 months now. Dr. Kula had Ellen set up an appointment for me to see the

PT the next day.

(I had to stop in the middle of my message so this is a continueation from the

message I started last night.)

The whole point to it was that the PT were getting CM/SM patients from TCI.

They felt that the Scripts TCI was writing were too vague. So they went to TCI

to learn more about the right things as well as the wrong things to do for CM/SM

patients after surgery.

Many TCI patients live out of state so when they go home to their PT who know

very little if anything about CM/SM no one really knows what a CM/SM patient

needs as far as a PT program that enables us to heal and function better.

So I met with the PT on Long Island. He did a very thorough medical history

on me as well as a very thorough Neuro exam. He spent over an hour with me.

He gave me his card so if I or my PT has any questions we can call and talk to

him. He gave me some exercises that I can do.

He told me that ultra sound heat was not good on my rods. That was good to

find out because I've had a lot of that. He showed me how my PT should message

my incision area and what he shouldn't do. He said my neck is so tight and

hard. I only have 5% ROM. I need to have 20%. That's a goal I can work

towards.

I have pt today and can't wait to give all this info to him. I know he'll be

grateful to have it. I just hope and pray this disc doesn't burst and that we

haven't lost precious time as far as getting the right type of PT.

Dr. Kula told me that if things got worse to go back in 3 months if not I can

go in 6. He said the next time I see them they'll order a Flexion-extention MRI

to see how that disc is doing under all the weight of my head etc. That was

amazing to me. I had no idea they could do that with MRI's.

He wants me to do the muscle relaxers and see if my PM Dr. would change my

meds. To see if this nausea I'm having is due to my meds. I'm on Morphine. I

know when I was in the hospital the first time for my PFD. They would give me

the Morphine then follow that right up with nausea meds.

He put his hands around my neck to shut off my Jugular Veins. He asked what I

felt. I told him I felt pressure in my head. Then he looked in my eyes. You

know how they turn out the lights and look at your Optical nerve. He said it

looked ok. He checked them again. This time he pushed on my eye a certain way.

He said that he could elicit a pulsation of my Optic Nerve. He told me it

could be high ICP. He said that doesn't happen in everybody. He told me to do

the other stuff first( muscle relaxers med change etc.) to see if it rids me of

my headache. If not it could be ICP and they could put me back on Diamox.

All in all I'd say the trip was well worth it. I learned a lot of stuff I

needed to learn. Ellen was very encouraging and so was Dr. Kula. They all

said I was for the most part coming a long pretty good. Dr. Kula said I

shouldn't get discouragedd I was doing Ok. It was good to hear that.

I do have a question about ICP. When I was in NY the head pain/pressure was

tolerable. I even did a little walking on the beach at the end of the Island as

well as in the hospital. I went to visit one of our CM sisters. Even thopugh

I felt it the next day it felt good inside to be able to do that.

What I'm concerned about is on the way home we had a lay over in Denver. As

soon as we hit the runway to land. I felt a smashing head pain in the back of

my head. Then the pressure was so intense. I couldn't help squirming.

I really wanted at the moment to crawl right out of this body. I told my

husband about it. He said that it maybe was the altitude. He said Denver is

about 1,000 feeet higher than Salt Lake.

Any way ever since we've been home I have more pressure and the intense pain

off and on during the day. Along with more dizziness. I feel the pressure on

my neck incision. It feels at times like it could pop.

I want to know if you can have high ICP and not always have the pain. Also

what if my pressure is bad here but not in a lower altitude.

I mean you can't put in a shunt and then say well I'm going to NY time to

take it out. I'm not saying I'm getting a shunt. I'm just speculating about

all that.

Well I know ths is way long so if you got this far. Thank you. Again the

trip was not a waisted one at all as far as we are concerned. I'm very glad we

went.

Maybe someone would be so kind as to answer my questions.

Hope you all are having a reasonably comfortable day.

Lord Bless you all and,

Take Care,

Regina

ACM1 11mm SM C6- T1

Decompressed Oct.15, 2001

TC Surgery @ TCI Oct. 4, 2007

PFD Revision/Fusion @ TCI Dec. 5, 2007

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