Chiari Online Support Group

A little about my story

Hi everyone! I’m Jessica and my boyfriend is James (hence the name)
Wow Chiari! It can be something that can stop you right in your tracks.
So my boyfrind who is 42, just found out at the beginning of the month he has chiari malformation 1.
He started having ear aches and said a lot of the time sounds were amplified, had nasal drip and baaaaad headaches. So I thought maybe he had a hearing loss or an inner ear infection because the hearing loss was only in 1 ear and the odd part was that it wasn’t constant. So I thought he had an infection because he was sick at the time. So he got better, but the symptoms didn’t go away. He was having a hard time finding the energy to get up daily. Some days with a headache and some days with immense fatigue.
His sleeping started to change. He had a really hard time getting sleep. He would lose his balance and he became irritable.
We went to multiple audiologist who just wanted to keep going hearing tests. We went to a neurologist who hooked him up to a machine…didn’t find anything except for headache pills that didn’t work.
Finally I forced him to go to a regular doctor. This NP sent him to a neurologists. Next thing you know he’s diagnosed with chiari 1. I personally think he’s had it all his life because he does have a cognitive ability. So because of covid, we have to wait for a follow up and consultation until July. He has said he won’t do surgery and that’s fine…I am just so sad for him. We are taking it 1 day at a time. Some days are good and some days not so good. This chronic fatigue is really messing with him cause he feels guilty if he sleeps all day and then has to work nights. But once he’s up and going, he’s good. There’s been days I can’t stop crying cause I don’t know what to expect to happen. Will it get worse? I don’t have any family here who live near me. I live in Delaware and all my family are in Northern California. I don’t have any real friends to lend an ear. And my boyfriends mom is a nut job, mean and we don’t get along. So I am all I have. I have to learn to stay strong for him but, I know there’s going to be times I want to give up and I don’t want to let him down. Thanks for listening and any and all advice is definite appreciated

Hey Jessie

Welcome I thinks it’s awesome that you’ve reached out. For yourself and on behalf your partner. I think researching and listening to people with this condition is a great way to learn what to expect from chiari. I’m new to this site as well and have found comfort in knowing I’m not the only one out there living with this. I think the best thing you can do for yourself right now before you can get into see doctors is to remind yourself that this condition effects everyone differently. yes there are similarities but there is is also a lot of variation with the symptoms people deal with. So don’t get too freaked out about some of the more hardcore symptoms you may read about. Understand that it’s possible that your partner may get them but also he may not. It’s the only way to stay sane. I was diagnosed with chiari when I was 17 and the negative symptoms didn’t really start to effect me till I was about 28. I’m not 30 I’m pretty athletic and was even able to get my blue belt in Brazilian jiu jitsu (which probably wasn’t the smartest thing to do and have had to stop because my symptoms got worse) I guess what I’m saying is it’s not a great condition but it’s also not life threatening there are ways to deal with some of the symptoms with simple things as life style changes. It also might just mean that you guys might have to adjust a few things but think of it as new type normal. Hope this helps and feel free to reach out.

Wow thank you so much! I really needed to hear what you said. It means the world to know he’s not alone and that he will be okay for the most part. Yes, he does act like nothing is wrong and that’s what I love about him. He’s not gunna let this change who he is. If I may ask, what were your symptoms when you knew something wasn’t right? How can I be more supportive for him? Like in said, he was probably born with it (I’m like 90% sure). His family knew he had cognitive issues, but chose not to get ahead of the issues. Anyways, I am so happy I joined this support group. He is now 42 and just diagnosed since he had all these problematic things happening. Do you have any suggestions on what to ask the neurologist for the first time meeting? What have you found that has worked for you?

Thanks again for reaching out to me :blush:

Aw I’m glad it has helped. It definitely helps me talking to people who know exactly what myself and my partner are going through. I know he struggles with it as well. I think he struggles with the feeling of not being able to help me. But I’m constantly reminding him that he does, just by being there for me, asking the questions that I forget to ask and even some times giving me a bit of thought love( I’m not really good at taking things slow on my good days I get in trouble for quite a bit :stuck_out_tongue_closed_eyes:) So to answer your question if there is anything you can do it’s probably just that. Just being there for him letting him know that this doesn’t change the way you feel about him And that if you guys can get through this you can get through anything. I went through the same thing with acting as if there is nothing wrong with me. I still go through it some days now. But I guess you just have to be kind to yourself and let your body rest when it needs to rest. I think everyone should that!
I think I knew something wasn’t right with Me for like a year or so before it got real bad but just thought it was stress. The first real symptoms I was aware of was my mood and (sorry if too much info) my sex drive. I had none! my mood was kind of apathetic like I was just blah. Then things like my headaches and what I call brain fog (It’s like someone has put cling wrap or a plastic bag over your brain you can tell things are there but you can’t really focus on them and your body is weak and lethargic), tension in My shoulders and neck, fatigue had flared up over time. some times I would have the symptoms all at the same time or sometimes it was just one of those symptoms I was dealing with. I was traveling a lot for work so again I thought must have had to do with that. And then the day I went to my doctor was just after I had the flu and had being coughing a lot. I got over the flu but a week after, the brain fog plus a headache kicked in and it just got worse as the day went on I ended sleeping all day and night as well vomiting. And I just went ok this isn’t normal. I already knew I had chiari as well as syrinx in my spine. But I hadn’t realised that all those symptoms above where caused by the chiari. No one had told me that those symptoms could happen. I’m heading in for the decompression surgery in June. Mainly to deal with the syrinx in spine. But please remember it’s sounds shit and scary and sometime it is but I’ve been able to mange most of my chiari symptoms. The biggest change to my life style was the types of exercises I could do. I cant do heavy weights any more or Brazilian jiu jitsu. But I adapted and now only do light body weight exercises, bike riding and swimming. I changed my pillow, I got my self a memory foam one expensive but worth it! that helped a butt tone with my headaches. The fatigue I mange just by making sure my sleep is prioritised. My bed And bedroom is one my favourite places. I invested in things that would help me sleep better ( memory foam mattress topper new bed sheets plants candles black out curtains) anything that would make the space enjoyable to be in. Neck tension I mange by massage. And I’ve just started cbd oil full spectrum Which I’m in love with!! It’s helped so much with my mood I feel back to my bubbly self after starting it. They’re small things but they make my bad days less frequent. Again this is just my experience. Your guys might be totally different. But I hope you can take something from it. Omg sorry for the long post haha But quickly to answers your question about what ask the neurosurgeon. I would suggest asking What the probability of syrinx being present is? What exercises and neck movement should he stay away from? What types exercise he can do? Ask about cbd oil if it’s something they would suggest? If medication is prescribe ask about side effect?! Some of them can be worse then the symptoms of chiari. Hope this helped. Also I would maybe on here in another post here ask other people what questions to ask. Or what question they asked? I think it’s really cool you’re being proactive about this good luck and if there’s anything else even you need to vent I’m happy to be a lending ear :blush: