even with a vp shunt,4 yrs on I'm still in so much pain, does anyone have any ideas???
Posted , 4 users are following.
i was diagnosed 4yrs ago with both chiari malformation and the syrinx in my spine. After the decompression I had a lp shunt fitted but soon removed by emergency surgery because it caused me so much pain. I have had 14 lumber punctures because of raised pressure around the brain, I now have the vp shunt fitted and still suffering with the painful headaches,numbness and always tired. I also really suffer with both my bladder and bowel and I get this horrible stabbing pain in my right side but all my pain seems to be on the right. At my wits end now because my last mri and ct showed nothing. We all know our own body and when something is wrong but no one will listen to me. Does anyone understand how I feel please and I'm lucky if I get 2 hours sleep at night and spend all day exhausted
0 likes, 15 replies
Apple62 lisa29315
Posted
Hi Lisa,
I totally understand how u feel. My neck pain is so bad, I'm in the bed most of the day. The muscles in my neck constantly contract.
In regards to pain relief I've not found a herbal or reg med that has provided relief.
I was dx in Oct 2014 and my symptoms are worse. I wish there was an answer. I've been told for the past 2 1/2 years there's nothing we can do. I changed neuros and scheduled for 3MRIs on Thursday. Don't feel bad, I hear it over and over that no one listens. Unless you are feeling the pain, you don't get it. I suffer stomach problems and frequent urination too. Are u able to function housework and take your bath? I'm doing well to walk. Hope you feel better.
lisa29315 Apple62
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That's very true unless you feel our pain you just don't understand. I do struggle to get about most days and I feel like I have lost so much independence considering I had such an active life before hand. Most days I don't want to do anything. My neuro team say no more they can do but I want another opinion from another doctor. I do have to use my elbow crutch somedays when I can't walk and it kills me to get upstairs most days I think and wish I never had the surgery because I just feel worse now than before
b2wc97455 Apple62
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i am sorry to hear about your pain, I hope you can get the best neurologist, where do you live..best thing to do I think is keep asking your health care professional by telling them how you feel, keep diary, write it down (I know it is hard to remember every thing) but if you do it each day..it would be easy, take it and show it and ask them to help you, go to higher up in the UK we can go to PALS then to NHS Board directly if you are not happy with the services, if need to go approach solicitor
Apple62 b2wc97455
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I'm in Texas. Going for MRI tomorrow. Thanks!
lisa29315 Apple62
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Apple62 lisa29315
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I just got back from MRIs. I left at 12:45 and just returned about 4:30. It took about 2 hrs for 3 scans. The tech said I moved too much and she had to redo some of the scan. I don't think I had much movement. I know my brain feels like it is moving and I have no control over that. Who knows!!! I have a neuro appt end of June unless it is moved up.
b2wc97455 Apple62
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How did it go?
Apple62 b2wc97455
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I received a call from Neurosurgeon office stating the MRI's had been reviewed and they were fine. I'm still scheduled for an office visit on May 24. Sounds like their is nothing they can do. All I know I'm not doing well. Thanks for asking.
b2wc97455 Apple62
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Apple62 b2wc97455
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Thanks for all the different ideas. I appreciate your concern and support. I'll see what the doctors say when I go May 24. Talk to u soon.
kimberly98247 lisa29315
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I hope this finds you having a good day.
I have had two decompressions, that last one with the dura mesh, I have also had a cervical corpectomy c5 to c7 with fusion, that one due to an accident. I understand your frustration, I went to my neuorsurgeon for an infection in my surgical site, I call it the Dimple, and he was very rude, and just ordered more mris, I got the results and went to a different neuorlogist that I had seen before. Thank goodness all is well or at least as well as we can be.
After my appt with the doc I got a daith piercing in my left ear, I was told it might help with the chronic pain. I did my left ear, I have meneires in that one, that is an inner ear disease, also a condition with no cure. I felt a difference as soon as the needle went in, my ear is clear from buzzing and the pain I constantly feel in my head, neck has decreased enough to feel the difference. This is different with everyone, I researched it, and found a very good and professional salon. I will keep everyone posted on how I do with it.
You are not alone in this, I know it feels that way, but there are too many of us suffering in silence with this condition.
Hoping everyone is having a good day. K
b2wc97455 lisa29315
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lisa29315 b2wc97455
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b2wc97455 lisa29315
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lisa29315 b2wc97455
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Hiya and thank you it's been great so many people getting in touch even from across the waters. I have been to see my go and I have to write to my neurosurgeon asking that I want a second opinion. I do want to be referred to Birmingham as even my go has said they have a great team down there. It is horrible and having fibromyalgia too every day is an effort to move around but no way will I give up I'm a fighter. I have my grandson 3 days a week , he's nearly 3 and he keeps me goin and something to focus on but I know one thing and that is I won't give up until I get the answers I need but I will keep you all posted and again thank you. Today is a really bad one but keep goin x