Recent Diagnosis

[janana99]

Hello, I was recently diagnosed with CMI. I have a cyst and my spinal cord is full of fluid. Currently, I have horrible head aches, numbness and tingling of my entire right side-almost to the point of paralysis. My surgery is scheduled for January 5, 2010.  As a divorced mother of 3 teenagers, I am wondering how long will I need someone to assist me with my day-to-day activites once I have the surgery.  Unfortunately, I live in one state while the majority of my friends and family reside elsewhere.  I generally recover quite quickly from surgery; however, I have never brain surgery. With the surgery, I am hoping for the best, but planning for the worse. This diagnosis and surgery has really caught me off guard and I am trying to ensure all of my affairs are in order.  I was thinking that I should stagger all of my helpers so that I can have assistance in later weeks.  Also, I was wanting to view a video of the decompression surgery, but have not been successful in finding anything.  As a woman, I am also concerned about how much of my hair will I need to have cut and how does the scarring heal.  Please assist. Thanks!

[selmaS]

HI and welcome to the Chiari forum.

So, it sounds like u have a syrinx(cyst) and chiari...do u know ur herniation and if u have tethered cord...or ne disk issues...or Ehlers-Danlos?

I had surgery in May...I am very slow to heal....and  I have several other issues going on, but my DH was able to go back to work and leave me alone during the day right when I got home from the hospital......we had the weekend and then Monday he went to work.He did call several times during the day to check in and he packed my breakfast and lunch in a cooler right next to the recliner I was living in.

Sounds like u may be a bit younger than me....and that could help u too...but baring ne setbacks....u may be doing more than I am at this point.

Make sure u r checked for all relaated conditions and that u have a true chiari specialist.

Trust me, I was sooooooo concerned about my hair...and I still am trying to figure out how to do something with it, BUT< it depends on the surgeon and the folks that prep u for surgery as to how much will be shaved....I had a lot more than most bcuz I had sink from under my scalp harvested for my patch as I run a higher risk of rejection since I also have Ehlers-Danlos.

I also do not know how this is affecting ur life now, but u must also know this is not a cure, but a way to slow progression.U know ur own body, but this is a major surgery....and there r so many things to take in account.

Again, welcome to our little family here, so sorry u had to seek us out tho .


"selma"

[rod44]

Hi and welcome to our Chiari Community....

Sorry I cant help with the questions on post surgery as I have not had surgery yet. I know that there are many here who will give you feedback on this :)

I am intrested in the cyst in your spinal cord, is it a Syrinx?
I have CM and also have a syrinx witch is a cyst in the center of the cord.

Ray