here is my update after surgery (started this on day 2 but couldn’t focus long enough to finish so I saved in a word doc to come back to every now and then)
arrived hospital 6am standard things, IV put in questions on allergies, last time i ate drank etc..they gave me the first IV to start the pain meds and my surgeon came in. we went over what was going to be done and i made the comment " i know your a neurosurgeon not a plastic surgeon but i would really appreciate it if you could make my zipperhead scar as pretty as possible and of course only shave what you need too for my hair" he and everyone else laughed my family cracked jokes on my vanity.
the surgery took just under 3 hours, no complications he did say the flow was very restricted and as soon as he removed the first layer of membrane he could see an immediate restore of spinal fluid flow. Now this is where I am not sure of the exact details until I go in for my follow up as I have my husband, my mom and my sister all remembering this differently but from what I can put together between the three of them is that the membrane is supposed to be like thin like a wet paper towel but strong like leather and my first membrane was thicker than it should have been cutting the first one out is what decompressed me he didn’t have to go further and cut the second one or place a duraplasty so no ICU the first night! The neck muscles have to be cut and burnt thru, then removal of skull, then membranes as I remember it anyway.
My NS is very optimistic that this surgery will give me full relief and he is happy that i did not wait as it was worse than they thought.
The best part!! he did my sutures on the inside not the outside no staples, no stitches on the outside and my scar should be minimum he also did a good job with an even shave of my hair.
The worst part is the pain, i have never had pain like this. The headache is different and i can feel the difference in everything in everything else. No weakness in my arms, no pain or numbness in my arms/hands, no chiari headaches.
The first couple days I felt this pinging in my finger tips, if I tried to change the channel on the tv remote or look at my phone it felt like my finger tips were being pinged with shocks. The NS said it was from the swelling and would subside. It did after day 3. Also my vision was very blurry at first these 2 things freaked me out but my vision is now better and the sun doesn’t hurt like it used to.
The initial pain waking up was like nothing I have ever experienced my nurse was breaking open a narco for me to take, I asked her what it was and she said I thought you were taking narco for pain I immediately burst into tears the narco never touched my headaches I am in the hospital after brain surgery and your giving me narco for the pain (new nurse/dumb nurse not quite sure but someone else let her know that my surgery required morphine every 2 hours for the first day or so) back to sleep I went. However by midnight the first night they had to stop the morphine it was making my blood pressure drop dangerously too low so they switched that to dilatin.
First visit from the NS after surgery that I can remember this was my chance to ask questions only I was on the dilatin and other pain meds and all family members had gone too lunch to let me rest, the only thing I remember of this conversation was asking if he was able to do the inside sutures because my surgery wasn’t as extensive as others he laughed and said no my surgery was very extensive and more or less let me know I asked for a pretty scar and he was capable of giving me one so he did. He was so proud of himself and I wanted to jump out of bed and hug him!!
This is Dr Lowry out of Holland Brain and Spine Center and I would recommend him for this surgery. I was nervous because he is not listed as a specialist for this but what I found out he worked under dr lynn heddema (which is the specialist in the area but who is pretty much retired now) but broke off and opened his own practice.
Actual Hosptial stay was only 2 nights this is why: The hospital was waiting 30+ minutes after the meds wore off to check on me, but 2 occassions were really bad on night 2 I spent 40 minutes literally crying as my head seared in pain, everything had worn off and we had requested 4 times for my nurse and by the 4th time any nurse…when my nurse Bonnie who was amazing came in my room she was so upset and outright told me that she was helping another patient and the other RN’s could and should have helped me but chose not to. She then sat down at the end of my bed apologizing in tears. The next day we experienced the same thing only this nurse let me know she couldn’t be 2 places at one time and thru tears I said I know but cant someone else give me my medicine? I really am not trying to be a baby about this but the pain is at a constant 10 and I don’t feel like its under control, I am here because I just had my head cut open…She said they were all too busy, and then i said some not so nice things and then started crying I wanted to go home which anyone who has had this surgery knows crying hurts as much as coughing. It was a horrible experience. When my surgeon checked on me that afternoon I begged him to let me go home where I knew my husband would take care of me and he apologized for my experience and agreed. He did ask me to remember that I couldn’t have Dilatin at home and I told him what did it matter If we could stay on top of the pain at home I shouldn’t need it. They sent me home with valium and told me if it got too bad to take that. The other pain meds are a 12 hour release oxycontin, percacets and robaxim. I slept most of my first day home and my hubby Is making sure I don’t have to do anything but rest. I have to be honest there is no one minute I am not in pain no matter what pain meds I have In me, the evenings and mornings are the worst.
Day 6 update i am doing okay at home. I have my good moments and my bad ones. The NS said this is one of the most painful surgeries performed and to brace myself..he was right and the nights are the worst, trying to find a comfy place to lay my head without straining my neck is difficult then getting up out of bed is painful. walking the first couple days i thought i was going to fall over i am still a little off but its getting better, you have never seen me move so slow:). The first couple days i spent mostly sleeping on the couch the last 2 days i got to enjoy some sun my hubby set me up outside with my special chiari pillows so i could sit comfortably and finally enjoy some sun that Michigan has been hiding. its difficult to type for long periods of time or even look at the computer for too long which is why it has taken so long to put together this update for the forum. I am taken the advice of docs and taking it easy. i am really hoping that by day 10 this gets better i am ready to get back to being me until then I know i have my hubby who is taking good care of me and i am resting as much as i can.
I do have the arnica cream which does help with neck soreness, the pillows help greatly I ordered both of them worth every penny. These allow me to sleep slightly upward if I want to. Just be sure to order them early I thought a week was early enough but didn’t get my pillows until 4 days after surgery.
If you have any questions I would be happy to answer them
Thanks to everyone on here for all your replies, always being helpful and giving me a place to go that understands this condition
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