1 year post-decompression update (long)

[Guest guest]

Hello Folks,

I just wanted to write and give a little hope in the form of a year

post-op update.

I went in this day last year to be decompressed. This family makes

Chiari look genetic. My daughter was dx'ed first at 9 years and

subsequently decompressed on April 13, 2000. She is coming up on her

2nd year anniversary. After much run around my son and I were also

found to have Chiari and he was decompressed on August 22, 2001.

I was taken back to the OR at 1:30 pm on April 2, 2001 and was in the

recovery room at 5 pm. I went to the neuro floor the next day at

around 12 ish.

I could feel the relief as soon as I was awake from the decompression.

My head felt a little heavy, and of course I was very tired. I slept

most of the first 24 hours. I did want something to drink in that

period of time as I was VERY thirsty.

After I went to a regular neuro floor I was ready to sit up, and

possibly get out of bed. I did get out of bed, and I started to walk

around the floor. That wasn't enough so I started to walk around the

hospital with the assistance of my hubby.

I left the hospital approximately 38 hours after my surgery (7am on

Wednesday 4/4/01). I wanted to heal at home. I don't like to stay in

hospitals if I don't have to.

I should have taken pain killers for a little longer than I did. I

took them for a week. Two weeks would have probably been better.

Those first two weeks were a bit difficult regaining strength, and

range of motion of my neck /back of head. Finding a comfortable

position to sleep with stitches in the back of my neck / head were

also a bit of a challenge. I drove about 2 1/2 weeks after the

procedure. I still felt a little disoriented (like I was going to

pass out) for about 5 months post op. I only have had about 3

headaches post-op and those were total fool days where I over did my

physical limit.

My symptoms pre-op were:

1. headaches: several different types (positional, migranious like,

exertional, head pressure, different places)

2. hand pain, numbness, weakness, loss of control of strength (loose

grip on things, couldn't open jars or bottles)

3. bowel and bladder borderline incontinence

4. Insomnia

5. Fatigue (probably due to low blood pressure swings)

6. Passing out feeling upon standing....that got worse to the point I

would feel like I was going to pass out...even when sitting

7. severe pain in my face

8.pressure in my eyes, and where my sinuses should be (no sinus

infections)

9. floaters, flashing lights, and grey outs visually

10. difficulty negotiating steps, dips, or uneven ground

11.severe sensitivity to light, noise, and some smells

12.pain and numbness when I sat for more than 10 minutes in my legs,

and butt

13. my legs would give out on occasion (not funny...stop laughing! tee

he he)

14.new meaning to the word crabby... (not that isn't #1!!!!!!!!!)

15. depression

16. lack of interest in sex (gee I wonder why?)

17. dizziness

18. nausea

19.complete lack of appetite that was progressive (meaning it wasn't

that bad when it began, but later it was so bad....I would not eat all

day.... and be somewhat hungry at dinner.)

20. palpatations in heart area (I discribed this like my heart racing

around my chest)

21. spina bifida oculta in my lower spine at S1 (another bony defect.

If you have one it's not uncommon to have two!)

22. ringing, popping, and whoosing in my ears

23. cognitive foggy feeling, and lack of ability to " think " clearly.

very forgetful

24.hiccups/deep sharp breath in after certain drinks (my kids tease

me... NOT FUNNY!)

25. snoring (unbelievably loud)

26. restless sleep (legs going a mile a minute, talking in my sleep)

27. muscle twitches, and trembling

28. heart racing

28. I'm sure I've missed something: I do have Chiari! ha (I'm still

slightly forgetful, but really nothing compared to previous to

surgery!)

I was told I also have something called prominent central cord. I

didn't find anything on prominent central cord for the longest time,

and then I finally found some literature suggestive of it being a

pre-syrinx state... where the cord dialates getting ready for the cyst

to grow.

Post-op I have none of the pre-op symptoms except for when I use my

hands over time, and then the pain that I do get is very minor

compared to previous to surgery.

After surgery I wrote and requested all of my records that were

written during my stay for the decompression. In the interoperative

report it states: " It was noted that the bone was extremely thick and

was very restrictive at the level of the foramen magnum. ....... The

remaining layer of the dura was very thin and one could see the

tonsils through the dura... " (Usually you can not see through the

dura.) This makes me wonder if one day I would be walking around and

just spring a leak?

I was previously mis-dx ed with Carpal Tunnel Syndrome (which I

actually had repaired), Migraine, depression... If I had compained

more who knows what other mis-dx'es would have cropped up. Even after

I knew I had Chiari (from the films) some of the doctors I saw did not

believe all of the symptoms I was experiencing could be related. So I

went directly to a neurosurgeon, and asked what I kind of already

knew: If I were to be decompressed could I possibly loose symptoms?

He agreed, and the rest is history...

My daughter (11 years now, 9 when decompressed), at almost 2 years

post-op, still says, " That surgery was the best thing I ever had

done. " My son (13 years now, 12 when decompressed) still has

lingering headaches, and it is noted that his ventricles are

asymetricle [thought to be a variant of normal!]. He doesn't regret

having surgery, and knows he did benefit from it. We will be

addressing his lingering problems in May at the Chiari center in NY.

I hope everyone is relatively well, and the newer Chiarians hang in

there..... Don't give up! It may be a long frustrating road, but

there are doctors who understand and can address this problem.

If you need to contact me please do so privately at

nnaugle@... Thanks!

Have a good day,

N--->CM 1 successfully decompressed 4/2/01, mom to 11

years Budd-Chiari successfully decompressed 4/13/00 and Noonan

Syndrome = heart, eye, gastro/growth, and bleeding problems, and Glenn

13 CM 1 quasi-successful decompression 8/22/01, wife to Bob - the

computer geek....in NJ.