even with a vp shunt,4 yrs on I'm still in so much pain, does anyone have any ideas???

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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 

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  • 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.

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    • Posted

      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 

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    • Posted

      Hi there,

      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

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      Hi, its annoying though, please do persis and be assertive to tell them that what ever it is you like to have second opinion..to make sure that they are helping you..it is their job to do so..contact insurance NO WIN NO FEE write to them copy to your helath care porfessional so they know you are taking incharge of your health...if need be report to FDA or any other organisation related to their license in your country - that is snot right for you to feel pain still.....what about trying to do gently exercise , drink 2 lts of liquid a day and also get supplements look at the website
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    • Posted

      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.

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  • Posted

    Hello Lisa,

    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

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  • Posted

    ask them to decompress you tell them to relieve the pressure by cuting C1 ad remove the item blocking your CSF flow might help you.
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    • Posted

      Hiya how you doin?? I had a decompression 4yrs ago and I had c1 andc2 removed to allow the tonsils of the brain to fall and I have also had14 lumber punctures over the 4yr period to help with the pressure. I am in the process of trying to get a second opinion only to find my neurosurgeon has discharged me. I am still in pain though
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    • Posted

      Hi LIsa, I was really lucky to get Mr Flint here in the UK (QE Hospital - Brmingham) I feel fantastic..!!! I made the right decission even though my spine really hurt sometime and if I walk too much I will get headache, but I do not need to take any pain killer..I just take regular suppplements and vitamins. You can go back to your doctor explain the ituation also if need be get copy from this site the story of all of us who lots of them have sevral decompression...I need to have another LP if I still feel pressure in the brain..but a part from that..you go girl..please get sort it it is very important you see, its effecting your quality of life..tell your doctor  to get new neuro because your file would be able to be accessed by any other healthcare professionals..let me know how you are getting on..but do not leave it too late...
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    • Posted

      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

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