Chiari Online Support Group

Chemo and Chiari?


#1

I was just diagnosed with chiari type 1 (“13mm with severe CSF impact”) after aggressive breast cancer treatment. After researching, I definitely see where I have had symptoms my whole life (ringing in the ears, coordination issues since I was a child, balance issues, weakness, etc.), however since chemo they appear to be rapidly progressing and episodes tend to be more intense. Has anyone come across any evidence that chemo drugs could bring on or worsen chiari symptoms? Neurotoxicity maybe?

I see a neurosurgeon on Monday for a general consultation, but I am so anxious about it. My oncologist thinks the chemo was causing my peripheral neuropathy, but once chemo was over, it has just gotten worse and worse along with dizziness and balance issues not to mention breathlessness over the least little things. Hopeful that the neurosurgeon can offer some insight.


#2

Hi Sparkles It seems that you have had a double load of bad in a short time. I am sorry to read about this. I hope that your cancer treatment results remain positive. About the chemo effects on Chiari, that is a good discussion.

I am sure that you have received information about chemotherapy and how it affects your brain processes. A lady I know often comments on her “chemo brain” when she is having difficulties remembering or processing conversations. Not talked about much by neurosurgeons nor neurologists, but more so by neuro-psychologists is that Chiari also affects brain processes. Of course, a neuro-psychologist would focus on the cognitive part of brain processing and give a shrug at vision or balance problems. Cognition is what they assess after all.

The anatomical abnormality of Chiari can affect the brain processes (even far away from the actual hernia site!) in a variety of different ways, which is why Chiari folk do not share all symptoms. But there are groupings. Brain processes include balance, vision, hearing, divided attention, reading comprehension and more. I have had it described that Chiari folk already have a type of brain injury and brain injured folk are more susceptible to further insult like chemotherapy, whiplash, and medications to name a few.

Perhaps your neurosurgeon will be aware of how Chiari affects how the brain works and be able to discuss those side-effects with you. Unfortunately, he will probably not have any solutions for you other than surgery if you are a medical candidate. Please know that there is information on this site about treating Chiari imposed balance and dizziness by retraining the brain’s processing they do work very well post surgery though you would probably have to do them regularly to achieve the same effect.

Good luck with your appointment. Stay calm.


#3

Gabby,

Thank you very much for your fast and detailed response! Yes, my cancer is in remission right now and the prognosis is good despite having a type that loves to come back decades later. Right now, despite the chiari/chemo brain I am doing well save for dizzy days. :stuck_out_tongue:

This is all so new and it’s so much to take in on an already tired brain, so I really appreciate the feedback! :slight_smile:


#4

hey there this is totally chiari unrelated but there is a drug I cant remember the name but I know it starts with (M) my aunt has recently passed from bowel cancer and there was this drug that the doctors said had a dramatic effect on cancer they use this drug for other illnesses but if you have cancer in your genetics it will litrally set off cancer cells like wildfire.I really! hope your struggles get easier.The doctors also wanted to put my grandmother on it for polymyositis but she wont go on it because she might carry that cancer gene. I wish I could remember the name of the drug I feel I have to tell everyone! with any form of cancer I have a feeling its a type of steroid.Anyways peripheral neuropathy sucks.I myself have chiari malformation I have also been decompressed and im 25 now I was 23 when I had my op.I have an uncle that had non Hodgkin’s lymphoma and an aunt who recently passed they are brother and sister and my dads siblings maybe there is a link? cause I also have family members on the same side with chiari and one thyroid cancer.I see the body as a chain if one link in the chain is messed up your body doesn’t work right and then other things start breaking down of worsening because of that one link.I had terrible issues growing up but doctors couldn’t pin point why so they diagnosed me absence epilepsy but then I hit adult hood and then it was obvious.