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My Journey With Chiari Malformation

Posterior Fossa Decompression Surgery
Home
About Me
Diagnosis and the Doctor Search
Consult with Dr Milhorat
Symptoms
The Chiari Institute
Posterior Fossa Decompression Surgery
Another hurdle
Surgery 2, and Life After!
Contact me

After my initial consultation with Dr Milhorat, and his determination that Chiari was in fact causing my symptoms, we  tried medication therapy (see symptom page to find out what I was on).  The agreement was I would try the medications for a number of months, and then decide if my quality of life was good enough for me, or if I wanted to try surgery.  The medications DID ease the severity of my symptoms, but my condition continued to deteriorate, and I decided I was ready for surgery.

First:  pre-surgery testing.

Taking into consideration the tests that I already had done here at home, and what they specifically wanted to see in me, the following tests were scheduled for the week before my surgery date.

3D CT of the head (to map out what my skull looked like)

CINE MRI of the Brain

(CINE pronounced sin-ny, like Minny. this MRI has additional software that shows movement of CSF with every heartbeat)

MRI of the cervical spine

MRI of the lumbar spine

(thoracic had just been done at home)

Tilt table test

Neurology consultation

After the results of these were finished, a consult with Dr Bolognese was scheduled.  He showed me in no uncertain terms that my Chiari was completely blocking all flow of CSF to my cerebellum. (the CINE MRI showed this) I was pre-syrinx. My tilt table test was mildly positive. We discussed all risks associated with this surgery.  I was ready and raring to go!  I wanted my life back. Dr Bolognese explained absolutely everything, almost giving me too much information.  I saw pictures.  I knew exactly what was going to happen. 

The following Monday, I did the pre-surgery check in and blood work at North Shore.  On 2-12-02, I was to report to the hospital at 6:30 am. Dr B met me in the pre-op room, asked me again if I was sure.  I was!  Off to surgery.  Every one on the surgical team was very nice, introduced themselves, etc.  Dr B had on a teddy bear surgical cap.  Absurd.  The anesthesiologist asked me what color I wanted my nails. (!)  I said blood red.  (Probably everybody says the same tired joke)  I was put to sleep. 

 

My Surgery consisted of: suboccipital decompression with a titanium mesh plate. tonsillar shrinking, duraplasty, cranioplasty, laminectomy of C1, dura patch with sterilized cadaver material (yuck) intraoperative SSEP and Color Doppler monitoring. (and I ended up needing dura repair, see below) 

Five hours for my ex-husband to wait.  For me, it seemed like five minutes. I woke up, threw up (charming) went back to sleep.  When I woke up again, I felt better than I had in months.  I could think again!  The brain fog was gone, the headache was gone(I was also on a pain button, that might have something to do with no headache).  Besides being weak, I felt GREAT. My now ex-husband said I had my "sparkle" back. My CSF flow was NORMAL. 

There was a complication during surgery.  My dura was worn as thin as crepe paper from my herniation. (yes, the same "insignificant" herniation that all those other docs said could not possibly be causing my symptoms, and that I didn't even HAVE) (QUACK QUACK QUACK)

Ahem, anyway.  My dura needed repair which they did during surgery, causing me to be on the lumbar drain for four days after surgery instead of the normal two.  My herniation ended up being forked, with one side 10mm and the other 8mm.  Other than that, my surgery had gone smoothly. Both doctors visited me in my room quite often. The staff took very good care of me in the hospital,I stayed in 10 days, then the hotel a couple more days, then flew home. We were in NY for over 20 days total.

Recovery went well, but I was astounded at the loss of strength from just a few days in the hospital bed.  I was weak as a kitten.  After about 5-6 weeks, I started water therapy.  We went very slow.  I made a great recovery, my hair grew back, my scar is very neat and skinny. 

On the Yahoo boards, we call ourselves zipperheads, because this scar is shaped like an upside down zipper. 

I was told to call NY for any reason, and to have a six month follow up MRI.

 

I have made some modifications to my life to accomodate my Chiari.  I try not to lift more than 10 lbs. (a carton of milk is 9 lbs) I still sleep on a 7 inch foam wedge pillow, available at medical supply stores or JC Penney. I combine this with down pillows, it works for me.
 
Right after surgery, I was using a cane (you can't look down, your neck is very stiff). I stopped when I found myself forgetting to use it! I also used a shower stool, and needed help washing my hair, as I was not supposed to lift my arms above my head for a month. I did not use the stairs for a while.  If you are thinking about after-surgery care, you will want someone to help for a week or so.  Write to me for more information. (see links page)
 
I did not drive until I was able to turn my head comfortably. This is all common sense stuff, Dr Milhorat says to try to keep yourself out of harm's way. 

PS, NO I do not set off metal detectors!!!  :)