new to this group having surgery on the 29th

[gjjl]

Hello, I am having surgery in a few days. This all happened so quickly I am still processing everything. I am just looking for advice for the surgery. Everything went so quick I feel like I maybe missing valuable information or insight. Any words of advice or encouraging words would be greatly appreciated!!!!

[linnielou232]

Yes this seems to be going very quickly for you, and as Selma stated we don't know your question really.  Do you want to know what to expect, or what it will be like in the hospital.  It is all different for all.  From my experience I did ask my family and friend I didn't want visitors the day or the day after surgery because you will want it quiet.  The items I took with me were:
personal items, toothbrush and paste, pad, pillow and undies, and changes at least 3 of each so you can change and keep comfortable, and your pillow is a must at least it was for me.  Selma has a site on here for suggestion on what to bring because we are all different and we all have different needs.  I do wonder why this is going so quickly for you?  Did you only have 1 opinion?
We are here for you if you need anything.  Your in my prayers.
Linda :)

[selmaS]

  Hi and welcome to the Chiari forum.

It is hard to know what to say as I am not sure what symptoms or issues you were having that helped DX your Chiari, or why it is going so quickly....for me it took a yr from DX, to surgery....we are all different and it depends on individual circumstances as to how this all plays out....regardless of those differences just know you are not alone.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry to hear you are having to go in for a second decompression....yes this does happen and can happen for a number of reasons....and you are right surgery is not a cure and it is possible for the tonsils to reherniate or scar tissue form and cause yet another CSF obstruction.

Your issue the" brain continued to drop" can also be known as cerebral ptosis and brain slump which is caused by too much bone being removed.....

Was your NS a true Chiari specialist? Were ALL related conditions ruled out?

[trixie10271]

i had my decompression in 2013 in a world reknown hospital in BOSTON...i had a pretty good herniation and large syrinx. i was in ICU one day and then moved to a regular room. They released me 2 days after surgery. I felt great, walked,  talked, moved my head just fine. BUT four days after being home I experienced HELL....ended up rushed to the hospital with  inflammational meningitas! SOOOO sick and worst headaches and vommitting in my life.I remianed another 5 days...all went well for a14 months and now I have to get another surgery because syrinx is back, pain is back, and herniation again!!!!

I NEVER thought i would be going through this again and have finally learned there is no cure....I just want u to be aware that this can happen. No one ever told me this could happen.  I had read that some people have to have it again and when i asked my NS how could that happen if the bone is already removed...his answer was that scar tissue can form and block the csf...well he tells me i need surgery again but scar tissue is not the cause......the brain has continued to drop. Im a mess and I am seeking other opinions but know that surgery is necessary,

My words are not to scare you but to educate you, unlike me, i never knew these things could happen. you probably are recovering and i pray for u to heal well.

best to you

[The_beat_goes_on]

You probably won't have a picc line. But you will have an arterial line ... That you may or may not wake up with. They don't place that one until you're asleep. After my first decompression I woke up with IVs in both my ankles. But I have horrible, rolling, weak veins that are prone to blowing.  Are you just having the decompreasion? Unless you're having a fusion I don't think you will have a neck brace.

Be sure to wash your hair really well! Because it will be a tough thing to do with stitches. My mom helped me but my hair still felt dirty.  I'd also bring face wash and maybe a travel sized baby shampoo if you will have someone that can help with your hair.

The most important thing is to take it easy! And rest.


Good luck and keep us updated as you can!

[gjjl]

I see you're from Texas! Me too! Thank you for your comment! I would've have remembered face wash and I know I would've been missing that! I'm just super nervous this all happened very quickly. I'm thankful to have found a support group for people who know what I am going through and have been through it themselves. The advice is amazing things that I would've thought about

[selmaS]

  Having a syrinx is the reason for your surgery being hastened...and I totally understand the rush now....

For each of us it will be different as to how it will be for us post op.....especially since you have a syrinx that is causing nerve damage, it may impact recovery as well....

I was in ICU 2.5 days...I had nausea and vomiting due to morphine and it was a while till they figured it out....

Wake up with?...not sure what you are asking here,,,,

[gjjl]

Like ivs catheder will I have a pic line? Oxygen? Just want to kinda prepare my husband. Do u have a neck brace? Sorry I am still figuring all this out! I don't even understand what the triangle beside posts mean lol

[gjjl]

Thank you both so much! I was recently diagnosed in November. My malformation is very large and the syringomyelia is already causing nerve damage. The doctor is concerned that I will totally lose function in my right hand. I have had sooooo many symptoms for so long and finally have an answer. I just curious if I should ask any particular questions. I'm quite nervous about having surgery.  My neurosurgeon specializes in Chiari and he been practicing 27 years. He is the top on Dallas and one of the top on Texas so that helps put me more at ease. How long did you stay in ICU? What all did you wake up with?