Sad and need advice and answers and help...please.

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Hi,

Hoping for some advice,

After being fobbed off for a good few months with numerous trips to the doctors and neurologists about my head and my neck and vision and speech problems and no one listening to me about me saying something is seriously wrong and these aren't my migraines (suffered since i was 11) and being told yeah yeah they've just changed and me continuously talking about feeling an immense pressure at the back of my head....they found a chiari malformation by accident whilst I was in hospital with meningitis a couple of months ago.

I have been referred to a neurosurgeon but am told these can take months. Now, my problem is i'm scared, i have no one to talk to, i only have Dr Google to rely on, i'm suffering alot and i don't know how to help myself.

I wanted an indian head massage and a friend that owns a spa says this is a big no no. I also have Rheumatoid Arthritis and am currently off all my medications because of the meningitis and that has retriggered childhood asthma and the last 2 weeks i have been battling pneumonia therefore no way can i be on immunosuppessants right now- so might a 'float' help or will that also cause damage to the chiari? I don't even know if that is a stupid question?

Thanks in advance and i'm sorry the long post, feeling very alone and sad right now...

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6 Replies

  • Posted

    Hi Sarah,

    I'm so sorry to hear about your symptoms. I complained for six years that something was wrong.  Like you, no one was able to give me an answer.  The symptoms of eye, neck and head pain are typical Chiari symptoms.  The best thing I can tell you is to get a cine MRI done to see if your csf flow is blocked.  Neurosurgeons are more knowledgeable than neurologists.  If you have a blockage and based on how big the herniation is will determine if surgery is needed.  Surgery will not cure all your problems with Chiari.  It can slow down the progression.  Some people have the surgery and are fine.  Others just continue to decline.  You might check out Chiari U.K. On FB.  There are a lot of knowledgeable people there.  I hope you get some answers. 

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  • Posted

    I'm sorry to hear you are worried. I was so worried when first diagnosed. Dr Google scared me witless so I stopped looking for a while! If you haven't found them already the Ann Conroy Trust is the place to  go. In absolute panic ( I was sent home from hospital with ' oh you have a chiari malformation type 1 -but that's ok' and that was it no info at all)  I emailed the trust with all of my questions and the lady replied within an hour. They have specialist nurses working with them and the trustees are neurosurgeons so they understand. Give them a go and I'm sure you will feel more at ease. 

    Do you mean a floatation tank? I wouldn't think that could cause a problem but you could ask the ACT. Definitely stay away from massage. I think that may have been what triggered my bad episode last year. 

    My advice would be -listen to your body rest when it tells you to. Eat well drink lots and speak to the trust. 

    Good luck -I'm waiting for a NS appointment too but it's going to be a long one. 

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  • Posted

    Wow, you have really been through it recently with the non chiari issues recently.

    In my opinion, guidance from Apple62 & elly26224 is spot on. The cine MRI would confirm to a NS problems with CSF.

    Really important to get NS with specific experience of CM, hence list of appropriate medical contacts on Ann Conroy Trust website.

    Many people have experienced problems going to apparently well qualified medical professionals, only to find the guidance given does not make any sense. I was Sent to see a neurologist who told me the headaches at the back of head, chronic fatigue, cognitive problems and anxiety were NOT chiari. So save yourself time and worry by going to right people.

    Unless confirmed by someone appropriate, would not do any treatments that might comprises your CM, so leave massages alone. To be honest, there are so many variations in how the symptoms are displayed, that you may be told it's fine.

    After finding so many different sources of data, I found these patient forum 's really helpful for first hand data. And as I lie hear in bed, 13 days post decompression surgery, I can't tell you how much I have appreciated the people who despite their own experiences, still share knowledge, life tails & sincere support. Its been invaluable to me.

    All the very best to you. Good luck in the next chapter of your life challenge.

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  • Posted

    So sorry for the delay, I was only just notified I had replies.

    Thank you for the replies I really appreciate it. Do I have to join up to the Ann Conroy to email them?

    So tired of being so ill in so many ways! Thank you all for being so kind and taking time out to reply, and Stable2309 I hope you are recovering well from surgery.

    Xx

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    • Posted

      Hi sarah84999

      First up, I suggest you click on your name on this discussion in blue, then select Settings, then scroll down to notifications and check the boxes next to things like:

      Someone replies to a discussion I am following, and then make sure you follow this discussion. You will get a heads up in hours to any updates in this thread.

      Next up, Ann Conroy Trust has a lot of data on the site immediately available eg medical professionals with experience of CM:

      http://www.annconroytrust.org/what-we-do/education/medical-professionals/

      And that page also shows the tel number you can call them on to speak to their nurses.

      Finally, thank you for asking about my recovery. Lots of progress last week, and followed by 3 poor days, when havent venue been out of house for a walk, and I had to put myself back on full meds again. But I was told repeatedly, that progress is not linear, and quite up and down. So for the moment, it's day by day, and looking forward to the next upswing.

      Why to call Ann Conroy Trust today? They might be able to manage to give you some of the answers to your questions.

      All the best.

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  • Posted

    Dear  Sarah, you got a good advice here, listen to them...make sure you have 2nd opinion...but do not worry, you will have your life back (after surgery) as I experienced bad one..then here I am after 13 months post surgery..I am drug and pain free. GOOD LUCK
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