Finally got a diagnosis

My mother required a 2nd surgery in November to fix her patch, and she had her follow up appointment last week.

She had to travel to Cincinnati Ohio, where her surgeon is. I wasn't able to go with her, but while she was there, she asked her surgeon to look at a few of my MRI pictures which she has on her phone. She didn't tell him about any of our suspicions, simply asked what he thought of the pictures. He said "well, it doesn't look good. It's Chiari". As most of us here know, an MRI can clearly show crowding and the beginning of herniation, even if there is not the "proper amount" of herniation for a diagnosis from a regular neurologist.

He said I should make an appointment for an exam, probably including a cine MRI.

Although I hate that she has Chiari and has had to go through everything she has, thank goodness my mom understands. I'm not sure what I would do without her. When it comes to Chiari, I don't have support at home. My husband thinks this Chiari specialist is a quack because he determined that it's Chiari from pictures on a phone. It seems like every time I try to have a civilized discussion with him, he gets frustrated and it turns into an argument. I'm pretty sure he was hoping that whatever condition I might have could be treated with just popping a pill every day. I know he is afraid for me to be sick, and he is afraid of the possible need for surgery in the future.

What he doesn't understand, and I've tried explaining to him, is that I feel like I am deteriorating pretty quickly. I think back to even a year ago, before my car accident. I've had some of my symptoms for years now, but I feel like everything has taken a rapid turn for the worse since last December. Even my "good" days are still plagued with headaches and severe neck pain/pressure. Bad days are so bad it takes everything I have just to get up, get dressed, and drag myself to work. I am lucky enough to have a job that doesn't require anything physically strenuous. But sometimes even walking is a challenge. More and more, I have to adapt what I can and can't do according to my symptoms. I dread even having to bend over to pick something up. I miss being able to exercise without feeling like I'm dying for the rest of the day. And over the counter medicine doesn't help my pain in the slightest.

I feel overwhelmed because we require 2 incomes, and I know I can't afford to take months off work for surgery with no income. Are there resources that I can use to help with the financial aspect of being off work for extended time?

I know my husband is just worried and afraid, and this is basically the only topic he ever gets upset and defensive about, and that we constantly disagree on. It's like he loses his mind as soon as the word "Chiari" comes up. I've offered to put some info together so he can better understand the disease, but he doesn't want me to. I was wondering if anyone else has dealt with this, and how did you help your spouse to understand? I know I can't MAKE him understand (although I wish I could :P). Any suggestions are appreciated. We have a great marriage, and I don't want this to become a regular argument.

Thanks for reading my rant :)

Bananas, that’s so great you found a surgeon who sees it! That’s a relief- not that you have it, but that it’s been recognized for what it is! As for work- some places will allow coworkers to donate hours/ days of PTO to a colleague. That may be something to check out??? As for the hubby situation…I’m really sorry. This is a tough thing to go through without support from the person you probably need it from the most. My husband is much the same way, and it’s very lonely. He has no tolerance for hearing anything related to Chiari. He thinks I’m looking for for someone to “sell me surgeries,” and also thinks I just need to find a good neurologist. There are several doctors in his family who all think that a neurologist is the key-no reason WHY a neurologist would help. So, unfortunately I just don’t talk to him about it. I’m starting to really resent him too. Is this healthy? No. I think some professional counseling might be in our future. If I find something that helps along the way I’ll let you know.

Jenn

Do you have any kind of short-term or long-term disability policy? Any unused sick or vacation time you can use? As for you husband; do you think if the physician or a nurse explained your condition, he would be more understanding? I was fortunate that the neurologist and NS that I visited both brought out large diagrams and explained to my husband what was going on and what chiari malformation was. It helped John connect the symptoms he was observing in me with the pending financial deficits and surgery. If all else fails, we are here to listen. Hope things improve for you.

Bananas,my family was like your husband too,they thought I was doing the wrong thing.In my case the NLs or other NSs I had seen didn’t give me a go ahead they were diagnosing by the herniation and felt mine wasn’t bad enough.I had the one of best surgeon in the country,he did what needed to be done and I feel so much better.There’s no one else that can make the disicion but you.I had to move ahead without the blessing of my family.I had suffered 27yrs.without help all kind of awful symptoms,living in a hell.It has been the best thing for me,there’s still things that I deal with but I know it would not have happened if I hadn’t stepped out on my own.My husband is great but he didn’t,understand why I would go ahead without the second opinion of other neuro.s.This site helped me make the right choice,just be sure to do lots of research before hand.You can find a lot of info.we live in a great age to find answers once we find a right dx.I know where you are and will remember you in my prayers.

Thank you all for the replies. I hate that you all have been through similar things with people not understanding, but it does help to know I'm not alone in that regard.

As someone who is extremely empathetic myself, I have a hard time grasping the concept of people not being able to understand or show caring support toward me and what I'm living through every day. I guess my fault is that when I'm kind and caring to other people, I hope for and expect the same thing in return. But I guess I just need to remember that not everyone can sympathize unless they have lived it themselves.

My job doesn't offer short or long term disability, and I don't even get any paid sick days, or paid days off of any kind for that matter. I would have to take time off under FMLA, and have absolutely no income.

I'm just feeling overwhelmed and scared about all of it.