Chiari Online Support Group

Recently diagnosed and anxious

Hi everyone, although this is my first post I have spent the last 6 weeks reading through all the discussions to try to make sense as to what is going on with me.

After 3 years of feeling like a hypochondriac I was finally diagnosed with Chiari Malformation. An ENT diagnosed me.But rather peculiarly my MRI results had been misplaced, he went looking for them, came back in, explained what I had by saying that my brain had moved into my spinal column and that it was rare. He referred me to a neurologist and said that he would explain it all and he sent me to have an ultrasound on my Carotid arteries. That was it.

I have since had the ultrasound and whilst I dont know the results yet(4 weeks later) I was told at the time that I have large growths on my thyroid that need examing and they would send that recommendation back to the ENT.

Still not having any info I went to my local Gp 2 weeks ago and gave him my symptoms. The initial symptom was pulsatile tinnitus but now includes terrible memory, headaches, anxiety and extremely irrational, numbness in fingertips and face, croaky voice and difficulty swallowing at times, insomnia and frightening one is periods where I try to read and see the letters but I cannot put then together to form words…but given time I’m fine again.

The dr said he was taking new bloods as he does not was to be dismissive and put everything down to chiari. I was so happy that I was being taken seriously. But living in Ireland, the country has gone into lockdown with the corona virus and needless to say any scheduled tests and appointments have been cancelled until further notice.

If I’m honest, I’m scared, I have not been told essentially what to expect from what I have. (The conversation I had with ent was less than 5 minutes) and where I was excited about going forward and getting ‘Sorted’ all seems to have fallen at the way side.

Of course the covid 19 deserves priority a d with my husband being diabetic I am completely aware of the dangers of this so my moaning isn’t at the fact that I have to wait to see a dr etc…its more not knowing what is going on with me.

I decided to post this today for what reason, I actually dont know…except that with lockdown I’m sitting at home worrying more, getting more anxious and some of my symptoms seems to be affected by the anxiety ie the pulsatile tinnitus. Writing this has kept me busy for a few minutes and helped me not focus on the amplified wooshing on my head.

Would love to hear from anyone that has the time and inclination to write back.

Thanks for reading/listening.

1 Like

Welcome to the group, I’m glad you found it. This is a wonderful place to come for information and support. I’m sorry that the doctors have kind of left you hanging out in the dark but if our and the experience of many others here has taught us anything— it is this is actually the norm for this population. I’m sorry that you had to join the club no one wants to be in but I will tell you that this forum has been a blessing for me. I’ve learned so much here and have found support that is definitely lacking in the medical community. Please take time to read and ask questions, create posts about things you want to know—especially if you don’t see a topic here already. The search engine is great for helping you find topics. There are so many people here that are very willing to share their experiences and support. Learn everything you can, be your own advocate and remember that you are never alone! I wish you all the best in your quest for answers and will be praying for you as well! :purple_heart: