Hello..New Here

Welcome Greetings and Introductions
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Hello! I am new here! My name is Madison, I live in an area between Lansing and Jackson, Michigan. Eventually, I want to move down to FL! I have a perfect 8 month old baby. His name is Hary (short for Harison). I am also married and just got a Bachelor's in Pre-Law.

Upon trying to decide whether or not to get my Masters, I found out that I have Chiari I Malformation The doctor told me she believed I had it before getting my MRI. My MRI confirmed it...9 mm but no syrinx. I am having really mixed feelings right now. Some days, I feel relief now knowing that it's the cause for having a migraine any time I laugh, sneeze, cough or bend over. Other days, I have issues with short term memory loss & vertigo. It can be really scary to me.

My symptoms have been getting worse over the last 3 years but have really sped up over the last 2 months. Could some of this have been to do with the fact that I was in a terrible car accident & had 3 spinals for my son?

I'm also terrified of surgery. I don't know anything about it and am waiting to talk to the surgeon...hopefully, sometime next week. What are the chances of something going wrong? What can go wrong? How is the recovery? Who is a candidate? How can I afford this when my husband and I don't make a ton of $ and have a young baby? How long will I have to take off from work? I want to go to a different hospital then the one in my area...do I have that right? I have so many questions about this I feel as if I could go on forever.

I really just need support from people who also have this condition. My family and good friends know the results from my MRI but don't know what it is like. Please be as supportive as possible as I begin on this journey.

Thanks!

With Love & Very Truly Yours,

Madison

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Hi, Madison! I know how scary this can get. When I figured out what was Chiari malformation, I was very confused and scared as well. Being in this support community really helped. I hope it helps you too.

It is thought that most people with Chiari are asymptomatic. Others become symptomatic in their 20ies or later. The best explanation for becoming symptomatic later in life I have found, is stress or traumas. I suppose, if asymptomatic Chiarians become symptomatic due to trauma or stress, the symptomatic ones could get worse from them. So yes, I think the car accident could have played a role in your getting worse.

I have been tired since around age 15. With tired I mean, 20-40% less energy than a normal person. Along with other symptoms, going through school was hard. I never was well enough that I could even consider getting a regular job, or go to university. I could keep up with the work load for a short while until I'd burn out and need a long recovery time. I thought it was all in my head, or I was lazy, so last spring/summer I started pushing my limits. That was when I started getting worse. At first, I thought I would rest for a few days. A week passed, then a month, two months... I still was feeling like I had the flu and high temperature. I didn't feel back to my normal a single time. Now around 9 months have passed, and I have just gotten worse. My guess is, I really hurt myself with all the stress I caused pushing my limits. Maybe that is just a coinsidence. Either way, I want to advise you not to overdo things and listen to your body, trust it.

I don't know much about the surgery. I'll be seeing NS for the first time this wedneday. I'll try to answer some of your questions.

Recovery is very individual, as are symptoms to each chiarian. Full recovery can take up unil a year. Sometimes more. I'm not sure waht "full recovery" mean exactly. I know some people go back to work 6 weeks after surgery. Who is a candidate may differ with every surgeon. Some may consider slicing up everyone who is symptomatic with 5mm or more. Some will operate on less than 5mm with severe symptoms. Some aren't fimiliar enough with Chiari and will tell you it's not Chiari. I think the important thing is, the surgeon has considered other possibilities for the cause of the symptoms. Eh, I'm trying to write a sensible answer, byt my brain is shutting down.

I don't live in US, so I don't know, but I think you should have the right to choose where you get the surgery, if you need one.

One more thing I want to add. If the NS you see don't want to preform surgery on you, because he has his doubts- don't be angry at him. You wouldn't want anyone to open your skull, unless they are absolutely sure it's necesary. If you find the NS too dismissive, you can go for 2nd opinion. Sometimes people see more than one dr who dismisses Chiari, but eventually find one who doesn't.

Tell us how the appointment goes.

Best wishes,

Kristine

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Thank you so much Kristine! This is what I really needed to hear. Thanks for making me see the positives & answering some of my questions! <3

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Yes, the Chiari journey is a scary one - it seems because no one has any clear answers to all the questions that you are posing. I do know that it is important to be able to take as much time as you need for recovery - start saving ferociously now - so that you are not stressed on the other side of surgery if you go that route. Travel is not easy after surgery. You will need stay-in-home help after the surgery... There are lots of good posts to help with surgery or you can ask specifics if you do not find what you are looking for.

Good luck with asking your questions and getting the answers that you need.

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You're welcome! :)
Check out this Q&A about Chiari. It might give you some good answers.

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Madison, I to live in Michigan and am newly diagnosed. I am eager to see a neurologist but the practice I was referred to does not do Chiari but will manage headaches and refer to a neurosurgeon if needed. I am going to ask my practitioner to refer me to neurologist that does treat Chiari.. But I want it now!!! There is so much to find out.

On the same journey,

Della

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Madison, I live in NC and am fairly new to Chiari. I was fortunate to have a GP who investigates every symptom so my Chiari was diagnosed quickly. If your symptoms are progressing rapidly I encourage you to hasten your treatment. Without a syrinx it is uncommon for there to be nerve damage but I encourage you to see a neurologist to rule that out as soon as possible. I had decompression surgery 3 weeks ago. I read all the posts about the post op pain and was terrified. I’m happy to report that the post op pain was bearable and under control in less than 24 hours. So to put my pain in perspective- when I woke up I felt like I had the worst Chiari headache I had ever had times 2. Yes, that was bad but after I answered all the neuro check questions I was given the fentonyl drip with a pump. That brought the pain down to just the worst chiari headache. The nurses kept working in small doses adding percocet, tylenol, robaxin until it was a regular chiari headache and I was sent home from ICU the next day. Of course, my neurosurgeon did an ultra sound mid surgery and found that CSF flow was restored without opening the dura so that helped me be anle to go home sooner. I spent 3 days on Vicodin, Robaxin (muscle relaxant) and a steroid before transitioning to tylenol and tramadol. I said all that to say, it wasn’t as bad as I feared and I’m getting stronger daily.

I do advise getting some help with the baby. I still get a headache if I try to bend or stoop which explains the post op restrictions agains bending and stooping, lifting, pulling, etc. I also encourage you to take as much time as you need off work. I am a teacher so I scheduled my surgery for April giving me 4 months to recuperate but I also applied for short term disability in case I need more time.

You have a right to go to any hospital that you choose but of course your health insurance will determine who they will pay… I would suggest interviewing neurosurgeons until you find one who makes you comfortable. I did that as well. Only one seemed offended and of course I didn’t choose him!