After decompression surgery...?

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Is it really that bad?

From what people are commenting on other discussions I can only assume it's going to be tough. Is it even the right word?

I'm having surgery in 10 days, really hoping to get my life back after I'm healed. 

I wouldn't say I'm scared, but I'm uneasy. I'm looking forward to surgery, but I'm not looking forward to going through pain and etc afterward. I feel like I've had enough headaches to last three lifetimes, but there will be some more pain post op.

 

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  • Posted

    The worst thing I had post surgery was the nausea. Get a prescription for anti-nausea drugs so you'll be prepared. Stock up on pudding, jello, apple sauce so you can stick big horse pills in them so they will go down easier. My lip was swollen from having the endotracheal tube in it and laying on it. So I couldn't take more than one bill pill at a time and then only after the nausea drug. You can get dissolvable ones so you don't have to drink water with them. After that, make sure you have easy to make items so you can just microwave. I had a walker to get around the house with. IT is Great!! Pain wasn't too bad and I had loads of hydrocodone stocked up for that. I went to a wedding 3 weeks after surgery, which included a plane trip. Walking around the airport sucked, but if you're not going anywhere, don't worry about that. Plan to Rest Rest Rest!!  Stock up on refreezable ice packs to put on your incision. They are great! Plant yourself in a recliner with the remote at hand and rest!! Don't go back to work or do anything strenous for 6 months or so.

     

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    • Posted

      Thanks for the tips. It's nice to know that the pain wasn't too bad. I'm dreading the nausea though, I sometimes have nausea and vomiting with my headache - that's the worst. I can deal with the pain, but not that rolleyes I have one quite important trip planned (200km) 2 weeks post op. I haven't cancelled it yet, cause I hope I 'll be able to go. I guess I'll simply have to adjust everything according to how I'll feel.

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    • Posted

      Get your prescription for the nausea meds before surgery. It is really painful to puke or have drive heaves cause you haven't kept anything down. SERIOUSLY!!! Then you'll probably be ok. I got all my meds from my GP as my NS was generally "too busy" to bother to prescribe anything....  I wasn't sure I'd be able to go on my trip to the wedding either, but after 3 weeks I got bored. I managed to get around pretty well, just really slowly. It takes awhile for your legs to get strong again.  Even though they weren't operated on. Make sure you are blowing into your lung blowing thing (can't recall what it is called- but you blow into it to help your lungs to help after surgery)  Not sure if you'll feel like doing much then. You have to get weaned off the painkillers first of all. So if you are still having pain- who knows!  

      In hospital- you can't eat alot at first cause of the endotracheal tube being down your throat- order soft foods or pudding or apple sauce. First time I tried to eat chicken, I couldn't do it. I was in hospital 4 1/2 days. Some people take longer though. 

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    • Posted

      My NS too said if everything's going to go as planned then I should be out of the hospital in 4-5 days. Sounds odd, you know such a short hospital stay after brain surgery, but then again-if everything's fine, why stay any longer.

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  • Posted

    Hi Madara my name is Gary I'm 44got my surgery on 8th of November at Walton centre I have no idea what I'm getting in to but my time is now and I'm more than ready,best of luck honey,and never give up

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    • Posted

      Thank you! Best of luck to you too.

      You know, life hasn't given us the best cards, but we can still play wink I'm trying to stay positive, sometimes it's hard, but I think it helps.

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    • Posted

      I like to blame every single illness and disorder I've ever had/have on Chiari. Too bad I didn't find out about it sooner!! I'm popping 16 pills a day on other problems that were likely a result of Chairi. Better late than never!! Good Luck and take it easy!!

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    • Posted

      Thanks, I certainly will take it easy for as long as I'll need to. Yesterday was a good reminder why I'm having the surgery.

      It was one of the bad days. It started with dull pain between my shoulder blades in the morning, and by 3PM a headache started. It wasn't that long - 6 or 7 hours, but it certainly was really bad, one of those times when getting up from the couch takes all the willpower I have not to mention how far away the bathroom suddenly seems. I was thankful I'm on Lyrica because I know my headache - this would have been one of the pain episodes with nausea and vomiting. Lyrica took that away. (I haven't had any of that since I'm on this medication.)

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  • Posted

    Hey there! smile Update about my situation.

    My NS rescheduled my surgery, at first it was planned on 26th October, but I already had it-yesterday morning. They just transferred me from ICU to neurosurgery department.

    My surgery took approx. 4hours. I went in at 8:40 and the anesthesiologist woke me up at 12:30. Right after surgery I felt sick, vomited, and either passed out or simply couldn't remember how I got to the ICU and next 3 hours. I start to remeber things from 14:30 when my NS came to talk to me. He did remove part of the occipital bone, I suddenly cant remember the name of that procedure, and C1 laminectomy.

    I am pleasantly surprised that I did vomit only once. I felt nauseus approx.until midnight, but this morning I, must admit reluctantly, ate couple of spoonfulls of porridge. My stomich wasn't too happy, but I managed to keep it down.

    Pain-wise at least in hospital they manage to keep it under control. I'd say it's a constant 3 out of 10 with some 5 -7 spikes. I have no idea what pain meds I'm on, but I get them every couple of hours through i.v. What else-I still get slight pressure headache when turning from one side to another, and I'm dizzy when sitting up and on my feet. But since I'm only 24h post op-I can't say I'm dissapointed. At least for now having surgery seems to have been a good decision.

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    • Posted

      Excellent!!! So glad to hear it is going well!!!!  Try not to rush things and enjoy as much rest time as you can get in the hospital. When you leave, there is generally no one to take care of you, which is a rude awakening. My mother-in-law stayed with me the first day, which was depressing. But I manage to get her hooked on Devious Maids, so worthwhile!

      Take some anti-nausea drugs so you feel less nauseous!!! They make a world of difference!

      I really enjoyed that little pain pushbutton!! It's great. You are probably on something very strong, like fentanyl. It's one of my favs!! Keep an ice pack on your neck!! 

      Keep us posted!

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    • Posted

      Hi! Thanks. I can't use ice packs or anything similar. My NS discovered that there was larger space between my occipital bone and C1 vertebrae, it creates additional craniocervical instability. I have to wear neck orthosis-California collar for a month or so at least 12 hours a day. It is so uncomfortable, I can't even start to describe. :D But it feels like it's helping. For example if I move my head, and it hurts, I know the collar won't let me continiue the movement. It stops me from hurting myself unknowingly.

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    • Posted

      Oh well that is good! No need to move your head anyway. I haven't moved mine for years. You just move the entire body- you get to exercise the rest of your body!!! 

       

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    • Posted

      I can imagine!! Do you ever feel life just sucks!! And then people tell you to look at all your positives. Just the other day my spouse of 33 years told me how sick he is of my Brain thing!! The positive side of that is that there are now two of us who are sick of it!!
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    • Posted

      Oh, wow, that was mean from your spouse! I feel soory for you. I'm rather quick-tempered, I can imagine what sort of argument I would have made out of the whole situation. You know-noone of us asked for this. We were born like that! I admire your ability to see the bright side. That thought wouldnt even cross my mind in the heat of an argument! I have always considered myself a realistic person, but I guess I should incorporate a bit more optimism into the way I see life.

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    • Posted

      Hi Gary! I think no. Prior to surgery we discussed only removal of occipital bone, c1, possibly c2 laminectomy and opening the dura. My NS said there was no need to perform c2 laminectomy and he didn't mention shrinking the tonsils. He said my tonsils were positioned assymetrically, the left one was lower and pressed on medulla more than the right one, that's why I always had more pronounced pain on the left side of the head and the tingling was more often on the left hand and foot.

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    • Posted

      I'm so depressed. I got a speeding tickets this morning going to my sleep apnea appt. I just want to drive off a cliff. It's bad enough having an unrelenting rare disorder that no one understands and on top of that having a spouse who is sick of it. Then they claimed in the ticket I wasn't wearing a seat-belt, which I was and unhooked it after I was stopped. (RANCID SPEED TRAP!!) But on top of it I can't get any information online or on the phone about the cost of it or about the seat belt thing and the policeman said I was going 55 in a 50 mph zone and on the ticket it says 67??? I am soooo depressed!!!!

      Going to go overdose on hydrocodone. 

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    • Posted

      Ok just ignore the last post- I am going to put that whole thing aside per my daughter's instructions and I can't figure out how to delete it. So please ignore. Probably ok to get mad at stuff now and then. 

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    • Posted

      Did they do a dura patch over the opening? My doctor did. He also cauterized the tonsils which were also asymetrical- left side 4 cm and right side 8 cm. Right side was blocking the CSF flow. Is there a way to cushion the orthostatic collar? with some pillows or something?  
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    • Posted

      I'm not sure about the dura patch, but right before passing out from anesthesia I heard my NS talking to another doctor that he was planning to cover the dura or smth.similar.

      About that collar-it comes with a pair of white soft "socks" if you may. Basically it's a tube of elastic soft cloth, you ought to put it over your head first, then you put the collar on and then you fold the the outer part of the sock over the collar. It's not that the collar itself creates discomfort, there isnt any rough edges or anything, but it's just the restriction it causes.

      Then again - I took my collar off at 8PM last night, the doctor said I can sleep without it, and I somehow managed to sleep until 2AM due to a sleeping pill. When I woke up at night, I felt every tiniest muscle on my neck, because now they had to keep my head still instead of the collar. The collar really provides great support. I'm starting to feel rather happy I have it.

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