It's a lot

Well, my second round with the Chiari is steaming ahead full force and im not sure how to feel …

Brief synopsis of my initial diagnosis and dr drama. I gave myself a concussion at work and ended up with a CT scan on which the radiologist found the Chiari. When through primarys and neurologists and was refused a referral to a neurosurgeon as it was never the Chiari that was the cause of any of my symptoms. I’ve even had a dr tell me that I had too many complaints and could I narrow it down to my top 3 because she didn’t have time to deal with all of them.

I pretty much gave up for awhile and learned to function with the constant pain and headaches. I am a single mom of 4 and am their ONLY means of support (I’ll save the “donor” story for a different day. Fast forward to about mid-December (new primary in place who seems to genuinely want to help) when I start getting the dizzy spells. I blew the first one off as a fluke. I have what my friends call the “one-in-a” syndrome. 3 of my 4 children are birth control babies. I have 2 seoarate skin conditions which present in the same manner (recurring abscesses), one of which I am telling the urgent care physicians what I have and which antibiotics work.

Second dizzy spell made me make an appointment with my dr. Once I told him about the dizzy spells, then I let him know I hadn’t been able to sleep more than 4 hours at any given time. And the horrible sweating episodes. I got yelled at for not telling him sooner. I am very grateful. He sent me to a neurologist who is as attentive as the primary and ordered a follow-up MRI. After the MRI, both drs recommended based off my symptoms that i needed to see a NS. I get sent to Dr. Heffez who, based off previous and current MRIs, including the neck MRI he sent me for, recommended the decompression surgery.

They are trying to schedule for March 31, but the hospital is making it difficult. and throughout the past 3 weeks of craziness, I have yet to let it soak in. I’ve been busy making arrangements for the kids and for work. Prepping and educating each child’s school, teachers, counsellors, etc., to ensure that they are avle to help be a part of my kids support system.

At this point, I’m anxious for anything that will help me feel “normal” again. I miss doing things with the kids and now that the symptoms seems to be coming fast and furious now, I feel like I’m running out of options … Follow-up with the Neuro is Friday. So, I guess I’ll wait to see what he says, although he was pretty adamant that decision on whether surgery could help lay with the NS.

Sorry for the long post …

Hi Tiffany!

It really is a lot, but you are so incredibly strong and are getting things done, insuring the care and safety of your children! I can only imagine how much you want to be 'normal' and I certainly hope that you soon can be! How lucky we are to have such options, I am very hopeful that this is a big life changer for the better for you!

I'm sure others can really relate to this, and I hope you hear from them.

Sending my very best,


I hope that the hospital can get you set up quickly, Tiffany, and that your surgery goes smoothly with the best outcome possible. Sending good wishes and positive energy your way. Keep us posted.

Keep doing what you're doing friend! Stay busy and don't dwell on it. You don't have to ponder and worry about it or even let it sink in. Just get through right up until the day of. They will give you something to relax and it will all be over before you know it. Sounds like you'll have lots of little helpers. Just make sure you give yourself enough help the weeks following. I am a firm believer that the recovery and rest is as important as the surgery itself. You're going to feel like you SHOULD get up and do things, but you really need to rest during this time. At least two weeks of just vegetating. Then at least two more with someone there to help you. You will be TIRED. It sounds like you're doing really well and focusing on all the right places.