When should I worry about chiari 1 symptoms

[SynyKon]

It has been at least 8 years since I was diagnosed with a chiari type 1. I saw a neurosurgeon very soon after. He determined at that time he did not wish to perform surgery unless my symptoms worsened or new ones appeared but said I should be seen again within a couple years. Shortly after, I lost my health insurance and was forced to move to California where I currently reside. After a difficult pregnancy just under 4 years ago, my health has been gradually declining since in nearly every possible way. Before it can be asked, yes, I received an epidural. I was unaware that an epidural was not a wise choice for a chiarian at the time. Most of what I know about chiari malformations, I have learned on this site. I suffer multiple symptoms every single day that would take a long time to list so I am wondering if anyone can tell me when I should be concerned enough to seek emergency help. I feel too disoriented 90% of the time to even have the capability to bring to mind all the symptoms I suffer. Severe clumsiness, constant and severe headaches that extend into my neck, full body weakness, constant muscle spasms and cramping, tingling sensations in my arms and hands, sometimes my face as well, extreme dizziness 75% of the time when I stand up, even if I stand up slowly, always tired but difficulty getting to sleep and staying asleep, back pains daily, coughing fits at random, I have to eat very carefully due to how easily I choke on anything I consume, double vision, blurred vision, and I fall very easily. That's all I can even currently think of because I am currently very sick after a pretty bad fall a few days ago. I have been bedridden ever since.
The problem is, where I am located, decent neuro related doctors are very hard to find any when I discuss my chiari with my PCP, she asks me "what is that?" and "can you show me?" even after I explain that it's a malformation of the BRAIN. That's how doctors in my county are. I have an aquaintance who is an emergency department surgeon in another county of California and even he has told me that it's very difficult to find good neurosurgeons in this state. So in order for me to really get it checked out, I would need to travel which is extremely difficult for me so unless I have a really good reason to worry, my family will not help with this and given my health, I do not drive a car, so I depend on them. Any advice or expert opinion here would be extremely valued and appreciated. It's getting difficult to even get up everyday and I'm growing hopeless, depressed, and desperate...

[selmaS]

Hi and welcome to the Chiari forum.

First you should have a new MRI done to make sure you do not have a CSF obstruction.
Next, breathing issues and drop attacks are the symptoms that you would need a Dr ASAP......with sleep issues make sure you have a sleep study done and a blood oxygenation level taken......

Once you have a new MRI you could send it for review by any top Chiari specialist...they may be able to direct you to a Dr closer to you....but soooooo many of us do have to travel....I went from PA up to NY....it is not easy to find a true Chiari specialist but there are NS's out there that may be willing to do surgery....but I would suggest not going just because it is offered make sure it is the right Dr....this is KEY !

There are related conditions that can be adding to the symptoms so do get them ALL ruled out too.

[SynyKon]

Thank you for answering my post. My family and friends are all very unfamiliar with chiari and I've suffered my whole life from unexplained pains and ailments until the chiari was diagnosed and even after it was, the lack of awareness people around me had made my life very difficult. It is very hard to live like this, I have my family pushing me to seek a job while my health is currently pretty bad. Can't even get out of bed for a couple hours at this point. I will be seeing my PCP within the next few days due to several health concerns including liver problems. I'll be sure to request a new MRI. Thanks again. I'll post any updates I get.

[selmaS]

Just know you are not alone we ALL have had lack of support and understanding from all areas...medical, family and friends.....but with time it can only get better. Also, FYI when I started with my issues and going to Drs they did not have or use MRI's to DX things like this...so I went to Drs my whole life and no DX until age 48.....you are lucky that you know at a younger age what is going on even if those around you don't.....encourage them to join here to learn more so you get the support you need

[SynyKon]

You are very correct. It would be great if even my boyfriend would make an effort to understand but he says he doesn't need to. I tried today to get an appointment with my Dr after explaining the situation and my needs and was told very rudely there was nothing they could do and I was hung up on. Needless to say I've been very upset today and that would be a big understatement. I'm feeling so hopeless at this point.