Chiari Online Support Group

Hello from Arkansas

Hello everyone, my name is Heather. I am a married, mother of one daughter and just recently became a very proud grandmother of a beautiful baby boy. Last year I went to the doctor in late May 2018 regarding head tremors. I have had them forever but they were getting to a point people were looking at me strangely. The doctor ordered a CT showing results of a mild stroke. Right after the CT I started experiencing severe headaches that then let to running fever. I decided to go to the ER and found out I had the shingles but they did a CT there also. Those results didn’t show any mild stroke. By this time I had already decided to change PCP’s due to the original doctor office saw you as a number and not a person. My insurance called to check on me and figure out what was going on. They advised me to get a MRI. After locating an amazing PCP he setup the MRI and in September I was diagnosed with CM1. My poor nurse hadn’t even heard of this. My PCP sent me to a neuro doctor since I continued to have the headaches. He told me it was from the shingles gave me to medications and sent me home. Holy cow I started the medication and my body ached and my headaches were 10 times worse. I immediately stopped taking them. Now I continue to have headaches but the neuro said my percentage was where it would need to be for surgery. Plus to top things off I have had a ear infection since June 2018 and my immune system keeps fighting itself. I feel like I will never be back to some type of normal. Some days I just want to scream…sorry to ramble so long but it kinda felt good just getting this out.

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Hi Heather,
I have no doubt that Shingles will worsen how you feel. I had an undiagnosed dental issue that caused my Chiari to be unbearable. Once the tooth was out I had substancial improvement and was able to control the issues with a prescription NSAID. Sometimes I don’t need any medication at all now. However, any earache or sinus infection causes things to get really bad very fast.

Hi Heather,
Sorry you are dealing with all of this. It’s quite a lot. I hope your medical team can get you some relief. Is surgery an option? I was recently diagnosed and new to this group. :smile: Best to you!

Hi Hello from Arkansas… I was diagnosed with CM1 in June 2014 and had Decompression Surgery with Duroplasty in Dec 2014. I was also experiencing dibilating headaches prior to surgery, also passed out twice. My surgery went well according to my neurosurgeon. It took me 3 months to get my strength back and for the incision to heal. At 5 months into my recovery the headaches re-appeared. In short, I have been under the care of my neurosurgeon, we have tried many different medications since my surgery… Topamax gives me some relief. I’m also getting botox injections and these seem to help more than anything. Everyone is different, your journey may be different than mine. Good luck!!

Thank ya’ll for responding. Some days I can take regular headache medicine and I’m fine other days I have to take the prescription medication to get some type of relief. My neuro isn’t talking about surgery just yet. But I do have another question. Has anyone experienced problems with vision. The past 3 days in the morning I wake up and have issues with my eyes. The first 2 days I thought it was just cause of headaches but this morning I woke up and my eyes were kinda blurry, and it almost felt like a charlie horse (this is the only way to explain the feeling) plus I was stumbling a little. I guess I need to call my dr and talk to him about it and see if its something to worry about or not.