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TIA and Chiari?

Posted , 10 users are following.

hayleybell
hayleybell

I was just wondering if anyone else with Chiari has had a TIA or any problems with speech where you find it hard to remember words?

 I ended up pushing for & finding my own Chiari specialist after experiencing some "funny turns" 2 years ago. I was told it was stress & migraine. I have now been reffered to a vascular neurologist as I still have trouble finding words on occasion. 

I was told the slurred speech was probably pressure on my brain stem. Since my decompression surgery this has gone, which is great, but now I have a  referral  as it is now thought the word finding ( experienced on occasion) is not my Chiari, which I think is right, but just wondered if anyone else has experienced this?

Thanks in anticipation......

0 likes, 43 replies

43 Replies

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  • tammie44301
    tammie44301 hayleybell

    Posted

    Yes!!! I have I can't remember words when talking. It's so immbarassing. I have an important next month with my MD Doctor. I hope he refers me to someone. Even when I type my words are crazy,
    • Linleel
      Linleel tammie44301

      Posted

      Sadly, you may not get speech and memory back. Some brain cells can't be regenerated. Depends on where damage has been done. But don't let any doctors tell you it's nothing or that it's migraine or something silly!!
  • hayleybell
    hayleybell

    Posted

    Well.....a BIG thank you to you all for kindly responding.....amazing what we have/are still experiencing. 

    I remain positive & will let you know how I get on next month at my appointment.

    best wishes to you all....

  • paul_85807
    paul_85807 hayleybell

    Posted

    Hi Hayleybell

    I was diagnosed with CM in 2011 and like you just recently had a collapse were I thought it was a Tia but all vital signs were normal when the paramedic got there.

    The doctor said it was stress and migraine which was soon dismissed by the neurologist I'm seeing.

    I have symptoms like yourself I can't find the words and sometimes slur my words and this I'm told is all part of the CM .

    I'venot had surgery yet just awaiting my next appointment with the neurologist but she is testing all cardiovascular via 24 hour ECG and heart scans.

    Have you had a EEG scan ?

    The word finding I'm sure is due to the CM hope this is of any help take care Paul.

    • hayleybell
      hayleybell paul_85807

      Posted

      Thanks Paul, 

      I haven't had an eeg scan, what is it?

      i occasionally have chest pain but not around my heart, on the right, do you ever get this?

       I have an appointment with a vascular neurologist as my Chiari team think it could be something else,( I have had my decompression surgery)

      it is next month in a 'Doppler clinic' ?

      glad you have a neurologist who isn't dismissive of your symptoms related to Chiari, this helps!

      i was told I was stressed, had migraine & tension headaches even when they knew I had Chiari with worsening symptoms over the years!

      keep in touch, we sound like we are similar, good to know we are not alone!

       

    • paul_85807
      paul_85807 hayleybell

      Posted

      Hi Hayleybell yes sounds like we have the same symptoms the EEG scan looks at the Brian electronic pulse's sending messages very simple about 40 minutes long they stick lots of wires tobyour head and make a recording whilst you open and shut your eyes and also when you sleep for 10 minutes . They use this practice mainly for epilepsy but can be useful for other information for you neurologist.

      I haven't got the results as they seem to take our NHS a while to get it back to the neurologist even though it's in the same building strange!

      The speech and word finding can be so frustrating at times and funny depending on who your with . I like to laugh and joke a lot so I get away with it most of the times.

      The pain you get around the right side of your heart ? I do get a pain there which is usually a sharp shooting pain mostly when I've got a lot of pain from the neck area . I also suffer from brittle Astma and sometimes get a tight chest also when pain is from the neck and back is this similar?

      Do you have constant ringing in your ears? I had hearing aids for about 4 years now and it's getting worse .

      Do you suffer with any black spotting across your eyes ?

      So many questions but it's nice that someone else understands what we are going there without lookingvatvyou as if your going mad many thanks Paul.

    • hayleybell
      hayleybell paul_85807

      Posted

      Thanks Paul.....

      The EEG sounds interesting! It is amazing what tests can be done to us! Lol

      I had ear trouble after my surgery, as soon as I woke up from it. Like in the movies when there has been an explosion and sound is muffled. This then turned into tinnitus for about 3 months after op. This comes & goes now, not a big issue. 

      No black spotting, early days of symptoms I did, about 8 years ago.

      Our cheats pain does sound different. 

      Do u get jaw pain/ache?

      good to chat 🤕

    • paul_85807
      paul_85807 hayleybell

      Posted

      Hi Hayleybell

      Yes I do have slight jaw ache no real pain but it is there I've always thought it stems from the neck painl haven't really taken much notice of it due to other issues .

      Did you have a constant headache and neck pain before the decompression op?

      Also I tend to forget or can't remember simple things such as numbers as I had to use this in my job every day resulting in me saying it over and over .

      Did you suffer from the dizziness and light head before op? Does it still remain?

      Many thanks Paul.

    • hayleybell
      hayleybell paul_85807

      Posted

      Hey Paul, in the end I did have a pretty much constant headache, sometimes I would be symptom free for a bit. No neck pain until a tanker Lorry crashed into the back of my car when I was driving to my pre op appt. then I had terrible symptoms because of whiplash.....

      my dizziness & light headed was a nightmare sometimes!

      To be honest Paul, I decided to find a Chiari specialist after having my "funny turns" which mimicked a Tia. That was when I realised enough was enough and something was really wrong and had to be sorted.

      I am not quite a year post op, it has been a really tough recovery. I am not quite 100% but I can cope with that! I am so much better than I was.

      I have been fortunate & am so glad I was brave enough to have the op & the wonderful care I receive. The NHS have been great at The Walton Centre.

       

    • paul_85807
      paul_85807 hayleybell

      Posted

      Hey Hayleybell

      That's so interesting you had a accident and it brought on the CM symptoms even more. Last year I got jumped from behind and betten up they hit me from behind with knuckle duster's and knocked me out then stamped on my head I recovered okbbut some headaches got worse and hear I am now so it could have contributed to how I am .I did ask my doctor if it would be connected she said not really so I left it at that.

      Pleased to hear that your better than before it puts some reassurance in my head no pun intended.

      Your so right about our NHS all the time I've recently spent in hospital they have been fantastic and most deserve a medal especially all the nurse's over worked if you ask me.

      Thankyou so much for sharing your experience with me it sheds some light on answers that I'm awaiting to ask my neurologist do take care Paul.

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