I am just curious about others experiences with chiari post surgery. I first had a shunt placed in my head. Then had to have the chiari surgery. My neurosurgeon as I have said before will not see me. I am so disillusioned with doctors. Since my surgery more things are rearing their ugly head. It takes me all day to do simple tasks. I feel alien in my own body. If I sit up or stand I can feel gravity pulling at the back of my head. This is not me being crazy. The more I sit up the more pulling I feel on my brain. Then the aching starts. I am having a hard time working just sitting in a chair. My arms n legs are starting to tingle again. I feel like I am slowly wasting away. No one understands. It’s frustrating. I have to force myself to just exist. I am in the process of going out on a disability at work but it’s a slow process. I went to a neurologist and she wants me to go for pain management. How will that help with my symptoms? Too many to mention. My family doctor isn’t much help. I just feel like there is no one out there who really knows anything about the brain.
Hey Wrumble,
" I am so disillusioned with doctors…" ME TOO!!! In fact, I’ve given up on them. For me the view was ‘They operated, they fixed’ but this is far from fixed. I have a shunt, well, I actually have 2. One broke so they replaced the broken tubing, then found that the valve was not functioning. So they left the broken one there and replaced it with a whole new appliance. This was going to fix everything but has caused more issues than I ever thought possible. In total I’ve had 6 surgeries, each to ‘fix’ it all, but each has knocked me worse and worse to the point now that I can no longer work. I get all sorts of weird sensations from the tingles to visual distortions to temperature fluctuations and, of course, the ever present mind numbing headaches. Actually, no, not headaches. Mind numbing nauseating SCREAMING agony from hell like someone has a hold of my optic nerve and is twisting it TIGHT. Prior to all of this I thought I knew pain, but this has given me a whole new measure of pain. A good friend of mine told me the worst pain ever was a toothache and prior to all this I would have agreed. But now the worst toothache ever doesn’t even rate as a 1 on this scale. Others who haven’t been here just cannot comprehend this reality, I, personally had no idea this level of pain even existed until I was living it. And then they have the gall to tell me it’s all in my head, like I’m imagining it all. Oh please, I may have a good imagination but this is taking that just too far.
The dr’s make out they know it all… …they don’t. Their textbooks cannot show this reality. The brain is the most complex organ known to man and the theories about how it works are always changing, so they simply CAN’T know it all. I too have had the Pain Management Clinic route and I have attended the clinic. I didn’t personally find it much use, but if I hadn’t attended then the medicos could have said I had not ‘Followed all Medical advice’. I had to exhaust every avenue before they would accept that, in technical terms, I’m screwed. I can talk to counsellors as much as I like, it doesn’t change the painful reality. But I had to follow through to prove that I’d at least tried.
So come talk to those who know from personal experience, come talk to us. We know this reality because we’ve lived it.
Merl from the Moderator Support Team
Hi Wrumble
I am coming to terms with the fact that the Chiari effect on the brain is complicated and causes all sorts of issues. Sometimes I also feel disconnected from my body as if I am not longer in control. I have also had the heavy headed sensation and its exhausting almost as if the brain misinterprets the normal weight of your head as an external pull force :slight smile: I am also 7 months post op and all I can say is hang in there because some of my symptoms disappeared as quickly as they had arisen and tomorrow will be a better day. I found that on occasions when I had that feeling a mild muscle relaxant for back aches (Norflex here in South Africa) can give relief. Almost as if the muscles tense up. I would imagine a warm water bottle etc may do the same.
Thanks for responding. Do you get shoulder pains? I do. If I use my arms alot my shoulder hurts terribly. Just on the side where they put my shunt and ran the drain tube through my right side to my stomach cavity.
I don’t have chiari but I do have lymph edema in my left arm/shoulder from shoulder reconstructive surgery (2 plates, 9 pins). My lymph nodes were damaged and no longer move fluid correctly so I get a back log of fluid in my arm and shoulder.
YES IT HURTS!
And, if I use my left arm too much it hurts terribly! Even with daily therapy there’s something about excessive fluid draining through the body that can hurt. I use a pump on my arm to force the fluid up into my shoulder and then it drains through the lymph system in the chest into my torso and eventually exits the body via kidneys (aka: peeing like crazy).
It absolutley hurts. You are not imagining it. There’s somthing about the pressure of excessive fluid draining that causes pain.
azurelle
Thanks for responding. I just feel so alone. I have never heard of this sort of issue before. I strained to do something so minor the other day. It wasn’t even a big strain n everything went black. I felt like I would pass out. This is so scarey. It isn’t even funny anymore. I am afraid to share any more with my doctors that they will take my license away. I don’t have a problem when driving n I am fine. Just when I bend over, lift or use my arms above my shoulders like reaching n cleaning. Then it starts.
I understand completely. The other day I wasn’t thinking and I carried a bag with two 2-liters of pop into the house from the car using my left arm. The next day my arm was swollen and sore and I had to extra therapy. From carrying pop into the house! It’s insane! And annoying.
I would say you’re going to have to work on making adjustments like I’m still struggling to do, you’re going to have to be aware that one side no longer works like the other and take steps to not stress it. It’s tricky and it’s difficult but it can be done. And, once you start remembering to not use that side in the same manner you’ll start feeling better.
I’m a little concerned that you mention having problems bending over, though. When you bend over do you want to pass out? Because that would definitely be something to discuss with your doctor.
azurelle
After the op for about a month then subsided. Think in my case it was the fact that i had started sleeping on my side after a lifetime as a stomach sleeper.