Newly diagnosed - how do you cope?

Hi all
I’m newly diagnosed Chiari 1 with syrinx C1-C4. I’m still coming to terms with the diagnosis, which came after MRI after dizziness and deafness in left ear. I have since had many episodes of vertigo. I’m struggling with fatigue, coordination, memory loss. I have many worries - how will I continue to cope with work? ( I work in admin for our wonderful nhs), the effect this has on my family - I can see they struggle when I am having a vertigo episode and am unable to function at all.
Does anyone else have these feelings? How are you all coping?
I have been told by neurosurgeon that I am stable and I will continue to be monitored. I’m definitely struggling with deafness and it is definitely having a detrimental effect on my life. Find it all very frustrating at the moment as not everyone understands what this is. I look like I have had one too many down the pub. At least I’m a cheap date for the hubby lol!

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I can definitely relate to your story. I was diagnosed with chiari 1, 3 years ago. I can not drive, am no longer able to work and I have several episodes a week where I am not able to function I needed 2 brain surgeries to stop it from getting worse but it has not helped as much as we hoped. We ended up selling our house and moving to a new state that was much cheaper, which ended up being the best thing we could have done. My family has definitely suffered and our kids don’t always understand but we are open and honest about everything and we stay as positive as possible. Once we removed as much stresses as possible things have gotten much much better. Hang in there and definitely consider a second opinion.

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The most important and easily over looked sentences in chadc232 response, is the one about stresses. Those of us that have lived with this for years need to STRESS to the newcomers Eliminate stress in your life! Stress is a killer, get rid of it.

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At least you asked, so many don’t. It’s a different day everyday. What is it you love to do? Understand, please, even though you look healthy, you are not. I was shocked when I first was told, I was in the E.R. for an Airbag explosion & that’s how I found out. I was RELIEVED , My father who was sprayed in Nam, we ALL knew i had something, we called it Agent ORANGE. But learn on what you can do to make your life better. I found essential oils, & scents, really help along with my low dose medications. Please don’t worry about it, just be educated. I bought a Chiari book, even though I will never have the decompression surgery, I am going to live my best life, no matter how hard it is, I make myself get up and Live, when I really want to die… Hope you can learn how to live with Chiari, Social Security finally finds this a disease & the V.A.

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Stress is 100% a killer, thank you for that, it helps us all :heart::heart:

Hi All
Thanks for all the replies, very much appreciated. It’s been a while since I replied. I continue to have balance issues and numerous episode of vertigo. I have been referred to ENT and a neurologist for the constant pain. I’ve started to have loss of feeling at the top of my shoulders. I’m also having a problem with my right shoulder - I can’t lift my arm above shoulder height. GP has said it’s impingement so am going with the flow with regarding injections and am waiting for physio. I work in T&O in our lovely NHS so know that there can be problems with Charcot joints. The GP just outright dismissed this so am stuck following the process he’s has set out.
I’ve recently seen my neurosurgeon and surgery was discussed but I want to just try and manage it as I’ve read the surgery doesn’t always work. I think the stress of work is definitely a contributing factor as I really struggle by the end of the week. Love the the job though.
What can I expect from the neurologist? What will happen during appointments?
Thanks in advance for any advice.

Hi!!

Welcome to the community!

That is really frustrating, I agree with what @JennyAnn said: “It’s a different day every day”. That is probably my best coping mechanism. Just try and push on, have a couple of small goals that you can usually exceed every day, and accept that some days it will just suck. On those days remind yourself that just a few days ago it was better, it can be like that again soon!
I also want to shout that stress is a killer from the rooftops! I have had to relearn how to prioritize things differently. I think one of the most parts of having a disease is not actually the symptoms, but justifying to yourself and to others that what you are doing is ok. There are enormous pressures from society every which way; pressures to ask a doctor, go to more doctors, use essential oils, self-treat, know yourself, ask for help or just shut up about it, etc. It is really difficult to acknowledge and accept that the plan you have is ok, and that you are ok as a patient and a human. I have had to prioritize things much differently than most. I have to prioritize sleep or anything, exercise over being social, and I have to decide that I need to rest or have time to myself to destress over spending time with others. All those decisions disappoint people a lot. It is hard to tell yourself that that is ok and that you know your body and disease best. People will make fun of you or pester you as to why and many times you won’t really have any excuse other than feeling selfish and guilty for not doing what they think you should be able to do. It is hard to stay strong and remember that you know best for you and that if those people really want to look out for you they will let you prioritize how you need to. The plus side is that you will end up learning a lot about what is most important to you.

As for what to expect from a neurologist, they will talk about what they know and their specialties. That is not to say it isn’t good advice or good treatment. The difference will just be that the neurosurgeon will focus on surgery or more ‘physical’ treatment options and understanding, whereas a neurologist will focus in on the chemical aspects of the brain and with that different drugs to treat. That is just because of how they have been trained. That does not mean one is better for you or that they don’t know what the other is talking about. It is something to keep in mind talking to each doctor. Just like how a dentist might recommend some kind of dental surgery or hygiene whereas an orthodontist might recommend braces for the same problem. It is not that they want more money or have any nefarious purposes, just that they will have different experiences in different areas!

Hi Jakob
Thank you so much for your reply, it was most helpful. I am trying to look on the bright side and achieve something everyday. If I can’t, I just try the next day. Art has been my therapy throughout this and my office is now my gallery. Definitely not Picasso, more like a Grayson Perry!
Doris1971