My Humble Tips For New Chiarians

Thank you, if I could get into a dr. That would be great!! Congrats on your success!! Keep positive, that’s what I’m trying to do. I’m telling myself that it was a wrong diagnosis🤷🏻???. Even though it would explain why I have gone so backwards since my failed back surgery, successful neck surgery,  until I found out that I had a paralyzed vocal cord, that now has an implant in it. ???? Best wishes to you, YOU GOT THIS👌🏼👍🏼!!

Hi Mesilim, I am glad that you’re feeling great especially that quickly after your surgery. What was the name of the exact surgery you had done? You also said it was phase 1, can you elaborate on what phase 1 is and why you and your surgeons decided to go with just phase 1 in your case, and what would determine if they have to go to the next phase?

My surgery was a Posterior Fossa Decompression with the opening of the dura. I was completely unconscious and my surgery took about 5 hours by the neurosurgeon and his team at Northwestern University in Chicago. They opened up the dura, took off some of my cranium by my foramen magnum, and the back of my C1 vertebrae. My neurosurgeon performs about 10-15 of these per year and has done them for about 15 years. Plus, it’s really the preliminary moves to bigger operations they do in this area of the neck, spine, and cranium, so he has prolly done some of these types of operations even more times to treat other things. He said my surgery went perfectly as planned, and that I should have now plenty of room for my CSF fluid to flow uninterrupted.

My post op pain was absolutely incredible. It was like I got hit by a bat in the back of the head by babe Ruth. Within a few hours my pain was more under control. I was on Norco, Valium, tramadol, and within a couple hours they brought me an IV drip so that I could push a button and deliver myself a dose of diluadid. It seriously knocked me on my ass the first day. However, the second day and the third day in the hospital got better and better. First day, I couldn’t really move at all I was that weak. Second day I got out of bed (severe headaches when going from laying down to sitting up for about 30 seconds), then I would slowly walk with my brother or nurse or wife thru the halls of the ICU or neuro step down floor. Then, by Friday afternoon I showered up and they released me.

They gave me a script for Valium and Norco to take as needed. I take them through out the day because my head and neck still ache but nothing near what I felt on day 1 post op. My brother asked me if a bear walked in would I be able to get up and run away, and I said nope I would be the bears dinner, that’s how weak I was that first day.

I also learned that loud noises and loud talking especially by the nursing and transport crews made my head hurt even worse so I had to ask a few times for them to whisper in my room.

I am now home since Friday the 11th, and everyone is asking me if I feel better. I am still in pain primarily due to my post op (I have like 25 stitches in the back of my head) and where my original pain was that made me want the surgery is in pretty much the same area where all my stitches are so I would imagine I’ll have to wait for everything to calm down first before I really can tell how much I improved. 

So far that’s my story, I may copy and paste this into a different thread because I don’t want to hijack your thread. But I figured I would share my story with u because we had our surgeries the same day, May 8th

You are my special chiarian friend (how many of us had operation same day)

May be you have seen my sixteen stitches on my profile photo.

Phase 1 mean they don't touch brain membrane and C1/C2. They just remove some boned from back of your skull. This may give enough room for your CSF fluid to flow uninterrupted. It worth taking risks, it works for thousands all over the world. Easy recovery! If it doesn't work I don't mind going for phase 2( like you)

Hi I'm really pleased you feel so well after your surgery and feel these tips helped you. However as a sufferer of Chiari and 18 months post surgery I too am very active running 18k a week, eat well, work full time and have a very positive attitude to life it makes no difference to the outcome for some. I had decompression surgery and have been told last week that it was it was unsuccessful and I am living every day in so much pain now waiting for a decision to whether I have to go through it all again. For many people walking out of the hospital the day after surgery would not happen. It is a known fact that after surgery you are taken to HDU and the pain you feel stops you even lifting your head off your pillow! As my Neuro surgeon said it is one of the most painful surgeries so your experience must be very uneque im not suggesting that your experience was any different to how you tell it but please be aware that it is highly unusual to even be discharge the next day after this type of surgery. As for the pain it is unfair to compare any illness against another. Pain is pain no matter what the cause no I don't have cancer and for that I am truly thankful but I have an illness that causes me so much pain and unhappiness that every day .Can be a struggle. As I say I am active eat well and positive as are many with this condition. Please do not assume that what was right for you is right for everyone. Many of us would love nothing better than to feel we never had surgery.

Yes, we are chiarian friends! I think I totally understand what your saying Mesilim. You had been diagnosed with chiari and and syrinx and decided to have a decompression, but it was a less invasive type of decompression surgery than the one I had. I read about some of these other options as well, but my neurosurgeon recommended the one I had and it was the one my gut told me to get as well. I am very very happy ur doing well and not suffering that bad post op. I am hoping I can report back here in a month or two and say that I am feeling great, we’ll have to wait and see! I don’t think u were trying to belittle one type of pain against a different type of pain, and despite my problems which have severely effected my life to the point that I decided to have brain surgery, however I know things can always be worse for me.....I just pray they never do! I’ll continue to keep u in my thoughts and prayers! 

Good advice.  I had Chiari surgery on July 6th, 2018.  Thank God I’m still among the living. Some of my symptoms disappeared immediately ( severe numbness in my hand and foot, walking more fluidly) and I’m patiently waiting for a full body restoration.  I’m pleased with my decision to have the surgery. Be positive.