My Humble Tips For New Chiarians

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Dear new Chiarians

I had my decompression on 8th of May, they sent me home next day(walked to home), I have been jolly, happy, I don't feel like I had an operation,

They only done phase 1(put a hole back of my skull) hopefully this will work and my 40cm syrinx will shrink slowly(already feel better).

My humble Tips for you

Go for operation EARLIER BETTER.

You get out from operation SAME condition you get in. So before the operation eat well, sleep well, be ACTIVE. Especially cardiovascular activities are vital for us (almost everyone can do stationary bike).

There are exercises for everything SEARCH for it (after the operation I couldn't swallow: found a way. Easy!)

Don't forget your mind: MEMORY games, courses(recently I have done more than 10 free online courses)

You may have COMORBIDITY (chiari+other condition) SEEK for it don't blame just chiari.

Be POSITIVE. If you compare chiari pains with cancer and ulcer pain it's NOTHING.

Bye for now

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11 Replies

  • Posted

    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👌🏼👍🏼!!

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  • Posted

    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

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  • Posted

    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)

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  • Posted

    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.

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    • Posted

      Hi dear

      This is my experiences and my humble Tips. I know everyone different. Chiari is not a horrible condition, many suffer because of the COMORBIDITY (chiari+other condition). Many symptoms people mentioned in this forum nothing to do with chiari. I am strong believer of modern medicine and surgery.

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    • Posted

      Hi Jackie,

      It is quite unique what Mesilim got - she/he lucky - I was successful but it took me awhile for me to be able to back as normal - I am pain and drug free but sometime my back feel aching - don't know whether this is because of chiari or other ..but for you still having pain - perhaps you would like to but try to listen to your body..I do not play Tennis or Squash anymore as advice by my surgeon.

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  • Posted

    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! 

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    • Posted

      Hello blackhawks,

      What kind of symptoms did you had before the surgery ? And with what are you dealing now post op..we had the same surgery..did you had a syrinx?

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    • Posted

      Pre surgery symptoms:

      Headaches mostly In back of halead at base of skull and top of neck, neck aches down the main muscles of my neck in back and in front, aches and straining sensations that seemed to radiate from the back of my head that wrapped around to the front of my neck and jaws (like my masseter muscles - hence why I always thought it was a TMJ issue), I sometimes got what I would describe as nerve pain by my temple and eye on one side of my face that seemed hot and flashed and tingled (this happened rarely but it freaked me out), everything got worse the more I would talk (I am a high school history teacher so u could imagine the amount of talking I do), I would get dizzy feelings, I was constantly fatigued even after 8hours of good sleep, I lost all motivation to work out and be active because I felt like I was always out of energy...I noticed that when I tilted my head back and the back of my neck felt ache more acutely...the more I talked the more fatigued my face, cheeks, and jaws seemed to tire out where it felt like I was talking in quick sand and I had to put forth so much more effort just to talk. 

      There may even be other symptoms that I forgot to include.....everything seemed like it was not right from the shoulders up. 

      Post op symptoms:

      It’s hard to tell how I have improved now that I am only about 13 days post op because a lot of the pains and aches and other sensations were in the exact same spot the surgery is in so it’s like one type of pain is now covered up by the more immediate pain of the surgery. I don’t think I will really know for at least a couple more weeks or longer.

      The back of my neck and head were numb for about the first week after the op. A lot of my feelings in my scalp are slowly coming back the closer u get to the incision. The areas close to the incision are still numb (and beginning to get itchy sad ... I take a Norco and Valium at nite just to sleep as comfortable as I can. I wake up sore and uncomfortable, so I take a Norco in the morning...then I take some regular Tylenol around mid day if I have a headache but I don’t know how much they help. I can rotate my head a little past a 45 degree angle each way until it gets tight and I want to stop. It’s a little  Harder to tilt my head backwards as well. 

      Yesterday I went to my brothers 35 bday and the whole family was there. I was surprised that I felt pretty decent in the beginning (I did pop a Norco before hand) but about 4 hours after socializing and laughing I began feeling my head aching and getting tired. It hurt a little more than lately moving my head so I think the Norco wore off and my post op pain was returning. I felt the back of my neck and head start aching more, and I noticed that my front of neck and jaw muscles and ability to talk began to become slightly more laborious. I think it’s just because I am still healing from the post op though...or that’s what I am hoping...

      It’s a tough condition because it seems like I’m always monitoring my symptoms and second guessing the way I feel and wondering if it’s normal or not.

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    • Posted

      Oh yeah, and sometimes random ear ringing was a symptom, and clogged ear sensations, and foggy brain where I felt like I could think straight at times...
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  • Posted

    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.
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