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Chiari Surgery 1 year ago and having symptoms?

Posted , 5 users are following.

julia_89059
julia_89059

So I had surgery on Feb 2017 I did not see a chiari specialist for this surgery just a neurosurgeon. I knew he had no idea what Chiari was when I explained to him my symptoms and he said it had nothing to do with chiari. My questions are when you have the decompression surgery how do they know that it worked to release pressure if no mri is ordered again? I have been having more frequent and severe migraines. I again am getting a stiff neck pain behind my legs that really hurt. I am feeling tired again. I'm just not sure if my CSF problem was corrected and how do I go about knowing if this is a problem again. Can again give me some advice?

0 likes, 17 replies

17 Replies

  • cakal76334
    cakal76334 julia_89059

    Posted

    Hi Julia,

    From which country are you if i might ask?

    Before your decompression which symptoms did you had? And which scans did they took before..a cine MRI ? To see for csf flow study.

    Did you had a syrinx ?

    Best is to ask a new mri with flow study a cine mri..complete mri spine..and brain

    • julia_89059
      julia_89059 cakal76334

      Posted

      I’m from Wisconsin USA.  My symptoms were many syncope, tingling in both arms, pain on both legs, migraines, neck pain and stiffness, back pain, legs falling asleep etc... I did have a cine mri that’s why they decided to do the surgery I had a blocked CSF. I don’t think I had a spine mri at all so not sure about the syrinx. But I do feel my back and neck pain are coming back. 🙁

  • b2wc97455
    b2wc97455 julia_89059

    Posted

    Dear Julia,

    First of all -  you have doe the surgery - that is the right thing to do - secondly each individual is different - however depending on their state and condition I personally believe if they get the right surgeon who understand and have had successful operation - the pressure and symptoms should at least (the worst scenario I think) 50% better - I got 3rd opinion prior to my decompression - I was lucky I have one of the best surgeon who specialist in this field he also the chairman of the Ann Conray Trust in the UK - after reading all the story of chiari patients (successful or not from decompression) I became aware that stiffness/back pain seems common..I am writing a letter with several specialists ''I volunteer myself - write several information'' and pass it on to all health care professionals just so that they can read and be sympathize with our problems.

    Sometime (like mine) the the reason being having symptom again is due to your CSF circulation is higher then average - A desire flow: 9-11 - higher flow is: 14 - 27 or above...mine was 27 after decompression - so I have 3 times lumber punctured after ..then 2 months later on - I was fine - I asked them to MRI/Scan me again - it was done 2 months ago - everything was puuurrrrfeeect..but I still have back pain now and then if I do toooooo muuuch..so listen to your body - go back to your health care professional ask them to have you lumber punctured to measure your flow.if it is too high..ask them to reduce it ...and always listen to your body - dont do too muc..good luck

  • cakal76334
    cakal76334 julia_89059

    Posted

    Julia what kind of back had you before the surgery? And after surgery ? Stabbing/ burning/ stifness ?
    • julia_89059
      julia_89059 cakal76334

      Posted

      I have sharp pains. It’s still the same as before but now it runs down the back of my legs and it’s get more painful. I also noticed my neck pain went away after surgery but now it’s back. Stiffness and pressure and pain. I just hope I don’t need a second surgery.
  • cakal76334
    cakal76334 julia_89059

    Posted

    Hi Julia,

    How are you now feeling?

    • julia_89059
      julia_89059 cakal76334

      Posted

      I’m not feeling any better. I’m now seeing a rheumatologist because I have a positive ANA. I will get a diagnosis on the 11th of this month after so many blood test. I’m thinking possibly lupus or APS. My vitamin d levels are very low. It’s a waiting game now. Thanks for asking. How are you doing?
    • cakal76334
      cakal76334 julia_89059

      Posted

      Well i also have back pain..stifness ..sharp...and post op is already 2 months..what is ANA ..lupus or APS ..these can all be found with blood tests? I have also little low vitamine d level.
    • julia_89059
      julia_89059 cakal76334

      Posted

      ANA is antinuclear antibody. It’s to detect an autoimmune disease. Lupus is inflammatory disease caused when immune system attacks its own tissues. APS is Antiphospholipid syndrome. A disorder in which the immune system mistakenly attacks normal proteins in the blood. I have also swollen hands and legs, breaking out with rashes and hives. Pain in all my body and extremely fatigue. Are you taking a vitamin d supplement. I am on aweekly 50,000 iu for 12 weeks then a regular doses for maybe my lifetime.
    • cakal76334
      cakal76334 julia_89059

      Posted

      Hi Julia,

      I have low shortness of vitamine d level. The GP gave me some vitamine d supplement to use once in the 2 weeks.

    • b2wc97455
      b2wc97455 cakal76334

      Posted

      Hi Burak,

      we discussed about taking supplement..have you look at the website

  • jaquie197513
    jaquie197513 julia_89059

    Posted

    Hi Julie I had decompression surgery 18 months ago by a Neuro surgeon that did understand Chiari but I have just been last week for my follow up with a new surgeon as mine had left and as I was expecting he told me my surgery was unsuccessful 😢. I am now waiting for another urgent mri and he is going to talk with the team about whether further surgery would be of benefit to me. My symptoms now are worse than they were 18 months ago. It's completely floored me and with the risk of surgery again or if they feel it will be of no benefit I feel at a complete loss and although don't want to go through that surgery again cannot live with this pain either lose lose situation. Which many of us find ourselves in. My Neuro surgeon suggested 80% feel some benefit typical I like others are in the 20% hope you get some answers soon x

    • julia_89059
      julia_89059 jaquie197513

      Posted

      What are your symptoms? I was just told I have connective tissue disease. Not what I was expecting. I hope that I can find a real Chiari specialist in my area who doesn’t require so much information before being seen.
    • jaquie197513
      jaquie197513 julia_89059

      Posted

      Hi

      My symptoms are worse than before surgery. I have throbbing headaches that I can only describe like brain freeze from eating something cold. I have awful pressure at the back of my head and feels like my brain wants to come out of my ears and eyes and I get tingling in my face. I have numbness on my left side hand and feet which I had pre op do that's not new. Pre op and now I get awful pressure headaches when I cough, laugh, strain or bend over. I'm waiting to see what they think ate the reasons to why I've got worse.

      Where are you? GB? USA? The general theme is that we get little understanding from health professionals having live with this now for 2yrs I know more than my GP. I have been lucky with my Neuro surgeon it's not his fault it hadn't worked just hope my new Neuro surgeon is able to fix Me!

      I share your frustrations around constantly having to go through everything just because they don't get it. If we could treat each other we would stand a better chance x

    • julia_89059
      julia_89059 jaquie197513

      Posted

      I’m in the US. It’s frustrating when I have so many symptoms and don’t know if it’s my Chiari or something else. I have no one to tell me if it is or isn’t. I had surgery last year and what confused me was that they didn’t check to see if the surgery was a success is this normal or do we wait to see if symptoms come back to check. Also just checking if anyone diagnose with Chiari have children who also have it? I agree we could probably take care of each other much better.
    • cakal76334
      cakal76334 julia_89059

      Posted

      Hi Julia,

      It is common to have new mris after the operation..this can be over 3

      .6..or 12 montsh post op..depens on how it is going with the patient..i would ask for a complete mri if i were you..mri for brain..spine..and a cine mri to check your csf flow.. as you have still some symptoms ask it..

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