Living with Chiari 1 malformation

Hi,

My name is Stephanie and I am 34 years old and was diagnosed with Chiari 1 malformation with a syrinx of about 5mm around 5 months ago. I have been living with the neck, shoulder, back and head pain for years now but never knew until I was diagnosed what was causing it, just thought it was stress since I am ALWAYS stressed out.  I was in a car accident about 10 years ago and another one when I was 16, both involved me rolling a vehicle (both not my fault believe it or not!), so I always thought I was hurting because of the accidents (especially the last one).  I came out unharmed but a few years after started having pain in my jaw and neck and left side especially, so I believed I got TMJ from the accident which they say can happen.  Finally I started having a lower left side back pain last year (I also have endometriosis so at first they thought that had spread), and finally went in and had 5 MRI's until they found the Chiari. They said that the syrinx was pushing on the nerves in my back and causing the pain.

I went to my PCP through this and he referred me to a Neurosurgeon in Washington D.C. who is supposed to be good.  I went into the appointment and he really didn't say much, just that he thought I should have the surgery.  Well of course I was scared to death of having brain surgery and with the endo, God forbid if anything were to happen during surgery, or my symptoms got worse I was afraid of having more problems trying to get pregnant or not being able to at all. So I asked him if it was ok to try and get pregnant first because of the endo and he said yes.  It wasn't until I went to my PCP that he said I could only have a cesarean section because pushing could make the Chiari and syrinx worse.  Which of course made me question the Neurosurgeon I went to because he didn't tell me much which made me and my husband nervous about going with him.  

I really want to be a mom so I am putting this first before surgery because I have heard so many bad stories about what happens after.  I can live with the pain that I have now as long as it doesn't get worse.  I'm also worried because the Neurosurgeon said they did only 1 to 2 surgeries a month at the hospital that I went to.  I have read online that the best Neurosurgeon's are at John's Hopkins in Maryland which is not the hospital I was referred to.  

I was just curious if anyone had any comments/suggestions on what they have gone through with this and if they have been to John's Hopkins to have their Chiari surgery.  I don't foresee me having the surgery until I have a baby, but I would like to make sure I go to a doctor that takes what I am going through seriously and that I'm not just another "patient".  This is pretty serious stuff as all of you who have been here in the forum already know and to be honest, I'm scared to death if I don't get the surgery that it will get worse, but at the same rate don't want to suffer the after affects of the surgery as others have.  

When I work out, the next few days are miserable (I take a heating pad to work) unless I work out everyday. I cleaned my house the other day and it literally made my hamstrings scream for mercy.  The heat does help, I just want to be able to exercise, lose a little weight before I get pregnant because more weight means more pain, but not suffer in the meantime while exercising.  I have also changed my diet to low carb to help out which seems to work for me.    

If anyone can help, I would greatly appreciate any help you can offer.  Sorry for the book, I just really have no one to discuss this with that understands what I am going through.  

Thanks,
Stephanie

[selmaS]

Hi and welcome to the Chiari forum.

Fist in regards to drs...NS ( neurosurgeons) can be tops in their field, but u wan ta chiari specialist....this is a NS that has their focus on chiari and related conditions.

I am not sure what u mean by what differences u will have after surgery...and what delaying will do for u.....the after affects u speak of can mostly be attributed to a surgery that could have taken place after nerve damage took place prior to the surgery....there r so many that have gained from this surgery.....and avoided further damage.Once u have the right dr, u will know...and he/she will suggest the proper treatment and timing for u.I had natural childbirth, and had no idea that  I had Chiari....I did have problems from my epidural.....but I did get thru it.

It is true that u will need a C- section for child birth...straining can and will affect ur chiari...it could also affect ur syrinx..

I hope u continue to post ur concerns and questions.

"selma"