Chiari and Chemo

[nikkinakkiknoo]

Ooh, Chiari and Chemo. That sounds like a music hall act! Hi Everyone. I have been undergoing chemo for breast cancer and during my second chemo I had what was thought to be an allergic reaction to my drugs. I lost the use of my tongue and got blurry vision but went to ER where I reacted well to Benydrl. I was however given a CT scan to check for brain tumours given my cancer and it was found that I had Chiari 1 Malformation. It was not brought to my attention (I was told NO TUMOUR! - and everyone seemed happy) and I only discovered the diagnosis while casually looking through the ER notes. Does anyone know if this may have anything to do with chemotherapy? I didn't get a lot of headaches before chemo, though I did in my teens, very bad ones (I'm 42 so that was quite a while ago). Now I have been getting more and for apparently no reason. Any thoughts would be appreciated.

[ChiariWolf]

Kind of an old thread but I"d be curious to hear about the type of HA's you got during the chemo? And how long they lasted after your Chemo was completed?

Curiosity is because of the chemo that I'm currently undergoing. It has triggered the return of absolutely MASSIVE sub-crainial or chiari headaches. I'm just curious how common this is with chemo, specifically folfox or any other using Oxalipatin.

Thanks
CW

[nikkinakkiknoo]

Good to know. I'll be vigilant!

[selmaS]

  Just a FYI many of us were not told about our condition either as too many of these uninformed Drs  do not see Chiari as something that needs to be dealt with.....I found out about my tethered cord when I requested old MRI's....I was never told I had it, but I went for low back pain and had so many bladder infections, but they did not see a need to inform me....it is not right, but it does happen.

I hope ur GP is able to help guide u as to how u should proceed....I have a great PCP now and am so happy that I can rely on him for help with all this.

[nikkinakkiknoo]

I have no plans to have more tests done for this, as they never even mentioned it to my face so I'm assuming they thought it was no biggy. I will bring it up with my GP as I think I'd like to talk to a specialist and because if I'm going to be sick I may as well deal with a bunch of stuff at the same time. Thanks for your advice.

[selmaS]

  Glad I was able to give u a giggle,....lol...

In retrospect I could see how all my life this has been with me...the more I learn about chiari the more I understand y this is so difficult to dx...when u live with something all the time, it becomes part of ur  "normal" and not something we consider a symptom...we do not know ne different....

SO not until we r educated on what chiari is and how it affects us do we see just how it has been with us all along.

Have u had a CINE MRI to see if u have  a CSF obstruction?

[nikkinakkiknoo]

Hello, and thanks for the warm welcome. ("...symptoms come to a head" gave me a giggle too). Your info is helpful. My mind has been going over my life to question my symptoms as you correctly assumed. I was told in my notes that there's no significant crowding of the neural structure so now I wonder if I should have any symptoms at all. This is all so new.

[selmaS]

  Hi and welcome to the Chiari forum.

  When it rains it pours huh?...Goodness...well ,nething can trigger symptoms to flare so chemo could be a trigger that has made ur symptoms come to a head.
Many times symptoms r dismissed as being from other issues, such as for females, our monthly, or the flu, or over doing it, stress, but we never connect them and consider there is one issue behind all the smaller individual issues....Chiari symptoms cycle,, so the HA's u had in ur teens could have been a flare of ur Chiari....and then who knows how u felt until ur next dx ...but I am sure u have a lot going on and did not notice chiari symptoms among everything else until things settled a bit for u.....

I hope this answered ur question.