A Million Questions

[pr1nsis]

Hello!  I am 25 years old and was just diagnosed with Chiari on Tuesday.  So I'm sure all of you who have been there and done that know exactly where I am.  Overwhelmed, confused, and full of questions.  I went to the neurologist for migraines and these 'different' head pains (that happen when I would laugh, cough, strain, etc...) and he apparently knew right away what it was.  He sent me right away for an MRI and within a week I had a diagnosis.   I have had these pains since the birth of my daughter.  Apparently, my neurologist believes that labor, pushed (no pun intended) that last piece of the cerebellum into place causing my chiari to be symptamatic.  So although I have suffered since the birth of daughter, within the week of finally getting my butt to the doctor, but within a week of going to him... I have a diagnosis...

I meet with the neurosurgeon on January 6 to discuss the surgery but of course I can't wait until then to get some answers.  Now I know, the answers I gather from here and the internet may be different from what my surgeon says but its nice to have some kind of idea of whats going on.  

Some of my questions are listed below.  I would love to have some answers from anyone who has had the surgery or knows someone who has...

1.  I have a very active almost 2 year old.  How soon after can I take care of her myself?  I know I can take care of her a little bit, but im concerned about getting her in and out of her crib and putting her in her booster chair at the table.  

2.  I only work part time (2 1/2 days) as an office assistant.  I'd like to go back soon.  (Not before I'm ready - but the money flow is needed).  How soon?

3.  I also teach dance (tap, jazz, ballet) 1 day a week at a preschool.  How soon until I can do that again?!  I know I wont be able to jump around with them right away - but just being there and leading them?

4.  Surgery - how long was the hospital stay?  

5.  Will my husband be allowed to stay with me?!

6.  Honestly, how much hair is removed?!  I've always had long hair and I know it sounds silly, but I am such a girly girl that scars me almost as much as the surgery!

7.  How long until your back to 'normal'.... living a normal every day life again!?

I have a million more questions - my 'active 21 month old' is waking up!!  

Thanks for reading and anyone who has time to respond!!

~jb

[pr1nsis]

I can not say thank you enough to all of you to posting!

I had never heard of this crazy thing and then to find a place where there is a forum of people where we ALL are going through it (just adding our own 'twist'), it's amazing!!

I hope to be talking to you all more!

Thanks again!!

[selmaS]

HI and welcome to the Chiari forum.

I see u have had several answer ur many questions...and I am sure by now u have noticed u can have several answers to one question....like how much hair will u lose?...Well it all depends on the dr and the person that shaves u.....and what is going to be done.I had a PFD and I also have the condition Ehlers-Danlos which put me at a higher risk for rejection, so the patch had to be my own skin.My NS harvested the skin from under my scalp.....so I have a much larger scar and had a larger area of skin removed.

So, that is only one question, but u see, it will depend on alot to answer all ur questions and ur NS is best qualified to give u the parameters of his typical surgeries and from his experience what he feels may be ur experience.

We can and will share our experience with u, but keep in mind ur experience may be totally different than mine, or Megs, or Devin's, Lizzy's......ect.

The younger u r the better and faster u may rebound from this...I am 6 months post op and not back to doing too much....but I do have some other things going on as well and I am older than u.....it is much harder to push myself, but I did push hard at ur age and a mother's desire to take care of their child gives them such strength, I am sure u will be just fine.Just remember to listen to ur body u may need to nap when ur child naps and know u may have new limitations even after having surgery.


I was in the hospital 5 days...in ICU 2 days.....I have heard others that had a much shorter stay.

I must agree with Ray as to having a NS that is a chiari specialist not just a NS that knows chiari. But u have to be comfortable with ur dr and trust what he has suggested for u.

Glad to have u as a part of our chiari family....sorry u had to seek us out tho : )

"selma"

[merlot3106]

Hi,

About the hair removal. I have seen so many differnt pictures of peoples hair after surgery and sometimes they remove a lot of hair but I had my surgery on Nov. 23, 2009 with Dr. Heffez in WI and he did a wonderful job in not removing too much hair. I also have long hair and he only removed about an inch in width and about 3 inches in length. You can't even see my scare. I think it has to do completely with the NS you choose.

Make sure you write down all of your questions for the NS before your appt. so you don't forget what to ask when you see him.

Good luck with everything!!

Meg :)

[ULMMom]

.  I have a very active almost 2 year old.  How soon after can I take care of her myself?  I know I can take care of her a little bit, but im concerned about getting her in and out of her crib and putting her in her booster chair at the table.   My 18 year old had surgery on the 10th of November and feels great.She was zero mobility when she came home for 1 week (7days). She started moving more after that she was independent totally after her 2 week check up. prior to that I was assisting with baths and helping her get dressed etc. Now the NS told us recovery was 3 weeks to 6 months. Yes that is very very vague. But everyone heals differently your body reacts to the trauma of sugery differently. I feel we have had an extremly good luck and except for hair loss you cannot tell she had surgery.  


3.  I also teach dance (tap, jazz, ballet) 1 day a week at a preschool.  How soon until I can do that again?!  I know I wont be able to jump around with them right away - but just being there and leading them? Marissa is jogging and will start weight lifting in Jan and training for spring soccer so she wil have taken 2 months off.

4.  Surgery - how long was the hospital stay? 5 days she was  

5.  Will my husband be allowed to stay with me?! Call the hospital and see if they allow. I know most adult ICU allow short visits.

6.  Honestly, how much hair is removed?!  I've always had long hair and I know it sounds silly, but I am such a girly girl that scars me almost as much as the surgery! It was not real bad and honestly my dd felt so good that she said she did not care once it was done. A lot of tears though before. I will say shockingly how rude people are they talk about her scar as if she is deaf! She has always had long hair and she is getting it cut to her shoulders. She is ready for a change we are trying hard to not make it look like Kate Gossielins cut!~



I

[rod44]

Hi jb and welcome to the Chiari Forum :).
It is hard for me to answer some of your questions as I have not had Surgery myself as of yet...
The surgery is not a cure as such, it relieves the symptoms and frees up the flow of the CSF (fluid around the brain and spinal cord)....
others here will be able to help with the question of lifting. Have you had a full spinal MRI to rule out a syrinx and other related conditions?, a CINI MRI to check CSF flow?
The stay in hospital is usually 4 or 5 days, you will be in ICU for a day or 2....

It is important to have a NS who is experienced with CM with is relatively uncommon....some doctors have never heard of it!!
Hope this helps

Ray