Officially a Zipperhead! 3 Days Post-Op

[Mannas]

Well I am official.  I had my surgery on Monday afternoon around 3pm and by Wednesday morning at 11 I was going home.  I am now a zipperhead.  It's so weird.  Fortunately things have moved very fast once we had the answer recently which has helped me quite a bit.  All of the nurses and doctors said I was doing wonderful and that I was healing very well.  They said normally Chiari patients are curled up in the fetal position and are awful when they come in and for several days.  They said I was handling things very well and a little bit more than a day and a half after going in I was going home.  I am very optimistic and feeling good but trying to make sure I do not push things and overdo it too quickly.  I just wanted to let people know that my experience has been very good and I am very fortunate so hopefully it can help someone else in the future.  I did not have a syrinx and my case was not as bad as some but hopefully it can be helpful to someone else suffering.

[selmaS]

  Hi and welcome to the Chiari forum.

I wanted to point out that just one MRI will not rule out a syrinx if it is in another area of the spine ...most Drs only check the cervical spine, but syrinx's have been found in the thoracic and lumbar spine.

Plus u will want a CINE MRI to rule out a CSF obstruction and overcrowding.

Make sure the NS is a true chiari specialist....and that ur DS's symptoms and condition warrant surgery.Not all with chiari r surgical candidates, and with the wrong NS it can cause more issues than b4. Surgery is not a fix or a cure...just a means to slow progression and restore CSF flow.

We do have a list of Drs here ...it is meant as a means to aid in ur research and not as a referral-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   "selma"

[findwitz]

I am relieved to hear a success story such as yours.  For the last couple years my son, 15 has been experiencing bad neck and back pain but the doctor ruled it Spinal curvature . Then he started getting sever migraines and Ataxia over the last few weeks. so they did a MRI and I was told today that my son, 15 has Chiari. We are awaiting another MRI to check for syrinx and a referral to a neurologist surgeon.  

If you don't mind me asking, but what were your symptoms and how old were you when they started?

[PAULAW123]

WONDERFUL AND SO HAPPY FOR YOU........I was just diagnosed and honestly yours is the ONLY GOOD REPORT I've seen after 3 days of looking on websites for some inkling of hope should my dr suggest sugery. Not sure how old you are but your story in inspring and I hope there are more stories of sucess keep us posted and Many Blessings to you!!!!

[Mannas]

Jennifer, I wish you all the best of luck with your surgery and will be praying for you and your family.  Hopefully this will help answer your questions.  My doctor was Dr. Carlos Bagley at Duke University Hospital in Durham, NC.  He is absolutely wonderful as a surgeon, doctor, Chiari expert and mainly a caring person.  I could not be happier with him and the more I hear people talk about him everyone totally agrees.  The surgery took a little less than an hour and a half.  It was supposed to be between an hour and a half and two hours but was actually quicker than expected.  It was the decompression with a duraplasty and a laminectomy of C1.  As far as tips, I can't think of anything too much.  Be sure of your surgeon and know as much as you can that you are in the right hands before you go.  That was the biggest thing that kept me calm through it all was trust and faith.  I packed pajamas which was much more comfortable and they let me wear them instead of the gown so I felt better.  The biggest thing (and I have to follow my own advice here) is take it slow afterward.  I feel so much better and can tell a lot of difference already but just not pushing myself and chancing risking something.  I will have plenty of time after to enjoy things and do whatever I would like.  Right now I just need to enjoy relaxing.  :)  It's hard for me.  I told my parents since I felt like I have lost the past year of my life not being able to do much, I feel like I am trying to go 100mph already to make up for time lost.  I hope that helps.  For me luckily everything happened so fast once I knew what it was so I did not have much time to think or get caught up in anything.

[Mannas]

You are absolutely right.  I am making sure to take it slow.  Everything has gone well so far but there are still so many things that can happen and a long way to go.  I sure do not want something to happen to screw it up.  I am sorry you have gone through so much and hope things will be better for you in the future.  I am definitely enjoying being home resting.  My job is very understanding so I can relax and not have to worry which is a huge weight lifted off of me.

[zygy2]

Congrats!!!  It is amazing to have it go so well.  I was home in 48 hours after my first surgery and they were so amazed because they do tell you that it will be four or five days!  Just take it really slow and don't be over confident and do anything stupid :)  I have had a crazy year and a half after my first surgery so even though things went great, things still went wrong.  I just got out of my third brain surgery (zipper times three) and it has been a really long haul.  I had a bovine patch that stuck to my cerebellum and had a pseudomengecele... take it slow and easy because you just don't know what is ahead.  With any luck you will be healthy, happy and as good as new really soon.  Enjoy being home!!! Sleep is so nice and that just does not happen in the hospital :)

[jenniferk86]

great! who was your doctor that did the decompression surgery? how long was the surgery? any helpful tips? I will be having the surgery in a little more than a week...

[lydelia]

It's wonderful to hear of a positive result from this surgery :D I am so glad you are doing so well.