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Is it all in my head?

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Unread 10-03-2012, 11:58 PM   #1
hlwampler
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Default Is it all in my head?

Both literally and figuratively...

Back in Feb of this year I was diagnosed with Chiari malformation type 1. My PCP was completely clueless about it and suggested I see a neurologist. I work in a very large hospital on the neurosurgical progressive unit so I talked with one of the residents instead. He suggested I bypass the neurologist and go to a neurosurgeon instead.

So that was what I did.

I met with the chief of our department and was set up for surgery after my first visit with him. 3 weeks later I was under the knife. Luckily it was with 2 residents I trust, literally, with my life and the chief of neurosurgery. The surgery was successful. My brain "had room to breath" and the incision was stitched and stapled nicely. My headaches were gone. My depression was gone. I felt like a million bucks for the first time in YEARS!

Here I am 6 months later and my headaches are back. I now have this horrendous neck pain, back pain, nausea (I'm not pregnant), my vision is starting to go blurry, I can't focus/concentrate, I'm irritable, and a million other things are going on.

I'm terrified that I might have torn or ripped something and caused a whole load of problems. I did the required 12 weeks of lifting restrictions. I was off work and in bed for 8 weeks. I haven't called my NS yet, I don't even know if this is something I should be worried about. Or if it's all part of the healing process.

Anyone have any similar issues 6 months post-op?

I also feel so alone with this. None of the nurses I work with had ever heard of it, or only briefly discussed it in nursing school because it's so "rare". I don't know anyone else with Chiari of any type, and some folks make me feel like a huge faker because on the outside I look a-okay. But inside, I just feel so crappy. It sucks.
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Unread 10-08-2012, 07:47 PM   #2
chiarichic
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Default "It(our brain) is not all in our heads":it's in our neck, too!

I am sorry you are struggling post-op. I had decompression surgery in 10/04 and I know somewhat how you are feeling. The symptoms you describe definitely merit a quick call to your surgeon. I assume your doc opened the dura membrane during the surgery , which means you could have a leak in your CSF causing some issues. Amazingly, high CSF pressure(caused by blockages) and low CSF(caused by a leak) share some of the same symptoms. Does caffeine help your headaches? Caffeine stimulates production of CSF and can help with the awful explosive type headaches that accompany low CSF.

Just know that you are not alone and you need to trust your instincts and care for yourself as you would one of your patients: if you would advise a patient to call their dr, then you should call yours.
Stay positive ( I know its hard when you are in pain) and keep me posted.

chiarichic

Last edited by chiarichic; 10-08-2012 at 07:49 PM. Reason: corrections
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Unread 10-10-2012, 02:40 PM   #3
hlwampler
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I did get in contact with my NS. I go in for another MRI and visit on the 25th.

The headaches do tend to mellow out when I drink anything caffeinated. They don't go away, but they are bearable. (Which...could explain why I'm such a coffeaholic.And my PCP thought I was just a coffee addict. lol)

I've noticed that they "flip flop". Some days it's intense in the front while the back is fine, then other days it's the back that hurts and the front is fine.

I did take a tumble down my stairs yesterday, I'm such a klutz, and it has felt kind of...funny...since. It's not a headache...it's more of a full feeling. Full and heavy.

I'm definitely anxious for my appointment. It's hard looking find on the outside and not being okay inside. It does help working on a neurosurgical unit because they at least somewhat understand and don't think I'm a nut ball, but I still feel alone because they don't REALLY understand. They think it's just a little headache that will go away. And it doesn't. You just learn to get on with it there.
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Unread 10-20-2012, 01:45 AM   #4
sara052420
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Quote:
Originally Posted by hlwampler View Post
Both literally and figuratively...

Back in Feb of this year I was diagnosed with Chiari malformation type 1. My PCP was completely clueless about it and suggested I see a neurologist. I work in a very large hospital on the neurosurgical progressive unit so I talked with one of the residents instead. He suggested I bypass the neurologist and go to a neurosurgeon instead.

So that was what I did.

I met with the chief of our department and was set up for surgery after my first visit with him. 3 weeks later I was under the knife. Luckily it was with 2 residents I trust, literally, with my life and the chief of neurosurgery. The surgery was successful. My brain "had room to breath" and the incision was stitched and stapled nicely. My headaches were gone. My depression was gone. I felt like a million bucks for the first time in YEARS!

Here I am 6 months later and my headaches are back. I now have this horrendous neck pain, back pain, nausea (I'm not pregnant), my vision is starting to go blurry, I can't focus/concentrate, I'm irritable, and a million other things are going on.

I'm terrified that I might have torn or ripped something and caused a whole load of problems. I did the required 12 weeks of lifting restrictions. I was off work and in bed for 8 weeks. I haven't called my NS yet, I don't even know if this is something I should be worried about. Or if it's all part of the healing process.

Anyone have any similar issues 6 months post-op?

I also feel so alone with this. None of the nurses I work with had ever heard of it, or only briefly discussed it in nursing school because it's so "rare". I don't know anyone else with Chiari of any type, and some folks make me feel like a huge faker because on the outside I look a-okay. But inside, I just feel so crappy. It sucks.
This sounds exactly like the symptoms my boyfriend has been having! He had chiari decompression surgery November 2011. 3-4 months after surgery, all the symptoms you described above he began experiencing. After seeing his neurosurgeon who did nothing & basically dismissed his symptoms & said he was fine. we have seen a primary care doctor who sent us to a neck injection specialist to help with pain who then sent us to a neurologist that is hopefully going to help him! Just know that you are not alone in this! I personally believe the symptoms are from my boyfriend going back to work way too soon after surgery & overworking & over lifting.. basically just not getting the proper care after surgery and if that is what its from i'm not sure how much can be done to fix it because that means it didn't heal properly! I hope you start to feel better as I hope my boyfriend does as well!
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Unread 10-20-2012, 10:16 AM   #5
hlwampler
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I'm actually going in on Thursday for an MRI w/ and w/out contrast.

After that I meet with my NS and hopefully figure out what's wrong.

I have a feeling he may be concerned about the mass they found during my original MRI. But, he could just be ruling out anything else.

It has only been getting worse for me. One of the nurses noticed this morning when I came in for my shift that my walking is "off". So that's another thing for me to add to the list.
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Unread 10-26-2012, 04:48 PM   #6
hlwampler
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I had my appointment yesterday. The MRI was with Contrast, so I was somewhat happy about that.

After I was done with that I went up for my visit with the NS. He got the results back from the MRI pretty much right away and said that it was all clear. Things look fine from the surgery, there are no blockages, and nothing out of the ordinary that he could see.

Great? No, not really. So now we have no idea what's wrong.

He did schedule me to go in for an LP on Nov. 7. He wants to measure the cranial pressure to see if I'm producing too much CSF now. If I am then I go on meds, if that doesn't regulate it I have to get a shunt. I don't want a shunt.

If the production is normal or low...off to a neurologist to see if they can figure out what's wrong with me.

I feel even more lost now.
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Unread 11-05-2012, 02:31 PM   #7
Live4him7
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Hi there, so sorry with everything ur going through. I recently had a vp shunt placed in the right ventricle of my brain due to a cyst on midbrain filled with protein blocking the aqueduct leading down to the spinal cord causing increased icp. I also however was experiencing some of the same symptoms you describe. Oddly enough, I also was diagnosed with Chiari malformation with syringomyelia. I dont think my surgeon felt that was the main problem. I hope that everything gets back to normal as soon as possible for you.
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Unread 11-10-2012, 07:46 AM   #8
hlwampler
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I am now starting to believe having my Chiari "fixed" opened the flood gates, so to say, for whatever is wrong now.

I did have a lumbar puncture done on Thursday. I got my results back at 19:35 last night. (The insurance/hospital system I use has this awesome health trak thing that puts results up in a place for me to see.)

My intracranial pressure is a 19. I have no idea what that means.

They also did a cell count and everything is normal. Except for lymphocytes and monocytes. I have no idea what those are, what they do, and they didn't list what the average range is. So now I have to go through the weekend obsessing over this and not knowing what the heck it means.

I feel like I'm going insane.
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Unread 11-19-2012, 09:10 PM   #9
Srs1830
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I have had almost the exact same things. I was initially diagnosed with pseudo tumor cerebri. I was put on meds for that and then they felt that the Chiari was the problem. I never felt good after the surgery, I had complications from the surgery ( a leak in the dura patch). My lp was normal. They don't know what to do...

I hate this. It really stinks
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Unread 11-25-2012, 10:16 AM   #10
hlwampler
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Well my NS is worried enough about the pressure that he's starting me on Diamox. I have to get blood work done Monday and then I'll be on that. If it doesn't help off to a neurologist I go.
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