Chiari Online Support Group

“Incidental” Chiari finding - just beginning the journey

Hi everyone. Just joined this group hoping to continue my research into Chiari and hopefully be able to gather enough information to advocate for myself.

Last week I was admitted to hospital with new onset numbness, tingling and loss of strength in my legs and arms. They ran a bunch of tests including a lumbar puncture and MRI. When I was discharged from the hospital they told me the cause of my symptoms were undetermined and to follow up with my family doctor and have him refer me to a rheumatologist. The symptoms lessened but I’ve still got numbness and loss of strength in my feet (unable to drive and do much) and ongoing variable tingling in my legs and arms. I also wound up with a severe lumbar puncture headache (or so they say is the cause of it) that doesn’t want to go away.

They gave me a discharge summary that detailed the MRI findings and to my surprise it said a Chiari Malformation as well as a syrinx. So I started researching and while scary, I’m also relieved in a way that there is something wrong.

For years I’ve suffered from pain, horrible headaches and severe fatigue. I was followed by a rheumatologist off and on as it was assumed to be an autoimmune condition despite blood tests being negative for Lupus (which is what they treated me for since 14…I’m now 31). It’s been 2.5 years since I last saw one though.

I saw my family doctor today to follow-up and he was great. He was concerned with the findings as well and was perplexed why I was never seen by a neurosurgeon while in hospital (apparently I’ve also got a small aneurysm that was not included in the MRI summary given to me that). He is going to send a referral to a neurosurgeon but it’ll likely be months until I can get in (Canadian health care system :pensive:). In the meantime he’s going to send me back to a rheumatologist just to rule out things.

And for my part I’m going to keep researching and learning from all your experiences. Thanks for welcoming me into the Chiari world. I think being here will help me navigate the journey.

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Dear mahone,

Welcome to ‘Chiari-land!’ Like - Chiari’s is the last situation you wanted to end up in! But - you are right. It is nice, in a way, to have a diagnosis! I was also diagnosed off and on with lupus - and fibromyalgia - and all sorts of auto-immune disorders. I think that when our bodies are under the stress of pain, everything starts to go wonky - especially and including our immune systems! I’m convinced my tests showed false-positives simply because of the massive stress of PAIN! UGH! :persevere:

I recently talked with some Canadians about an issue similiar to yours. She was another Canadian who was having issues getting the decompression surgery approved. Then, I shared this information with an elderly Canadian couple who are here in the southern US for the winter. Now - I’m only telling you what this particular Canadian couple told me. This couple I spoke with are well-traveled (because they can afford it!) and they told me that some provinces in Canada are more generous than others in paying for health care. They live part of the year in a coastal province along the Atlantic (can’t remember which one) and part of the year in Alberta, and the winter in the US. You absolutely know more about Canada than me. But, I THINK this couple said that Alberta is more liberal in permitting medical procedures than that coastal province. Again - this is second-hand information. The elderly couple I talked to were quite eager in setting me straight when I said that all of Canada won’t cover Chiari decompression surgeries. Apparently I’m wrong about that. Hope your are able to find that generosity!!!

The troubles with living in Canada are the wait times and finding qualified specialists in less densely populated areas. It just took me 9 months to see a gynecologist for painful periods! This is compounded with the notion that medical situations that are less common are trickier to diagnose and treat with how the Canadian healthcare is set up(confirmed by the CBC radio station of course!).

Please keep in mind that the wait times are for conditions that will not kill you - just make you miserable and a working life a challenge if possible at all. If you are truly ill, waiting is not a big issue. People still get upset if they have to wait a month to start their cancer treatment on less aggressive sorts. It can be hard for people to wait though and they often squawk quite loudly with the wait.

Medical travel is more of a reality for folks who do not live in the major cities and inter-provincial travel has its own challenges. A person can’t just decide to go to a neighbouring province, they need to get approval or they will pay out of pocket and then beg their own province to pay. You can imagine that it is not a quick or complete method to get reimbursed.

It is also more difficult to find second opinions than what I read about here. Medical folk are not keen on you using up resources like that and are not keen on putting you on two waiting lists. With that said, Canadians will not go broke paying for any procedures. They might just lose their house because they are waiting for an initial consult and treatment and cannot work for the year that it takes. Of course, people on this site have not warmed me to the American model of medicine. Lots of problems on either side of the border.

Thank you both for your responses. I’ve read a lot of stories where people are worked up for autoimmune conditions but it’s actually Chiari’s so It’s good to hear first hand, @BethR , that you had a similar experience. Have you found that after your decompression the autoimmune “symptoms” improved?

And @gabby_jazzypants, you’re exactly right…wait times are biggest issue not necessarily getting approved for the surgery. I just got a letter in the mail from the neurologist I saw in hospital with a follow-up appointment for seven months from now. I assumed a follow-up appointment would mean a couple weeks, maybe a month especially considering my symptoms hadn’t gone away when I was released from hospital.

My grandfather had back surgery a few years ago by a neurosurgeon. He waited 16 months to get into see him and the doctor was appalled at the wait time given the severity of his case. So I’m expecting an equally long time given my findings were “incidental” which is frustrating because now that I’ve got a diagnosis, I’d like things resolved so my symptoms don’t get worse (especially given I have a syrinx). But I’m also confident my family doctor will do everything he can to get to the bottom of what’s happening as quickly as he can.

Welcome and I hope the doctors give you the answers you need and deserve after so long. As far as the follow up appointment you should call the office of the neurologist and ask if you can be seen sooner even if they call you due to a cancellation. I also had and have syrinx they just monitor it. As long as my symptoms do not get worse and during the MRI’s they do not see changes they say I can wait for a while until having another surgery.

Dear Mahone,

Yeah, it took awhile - like 9 months or so… but all my autoimmune things cleared up. I also was tested for ‘bad’ thyroid - and that cleared up after the surgery as well. Once the extreme stress of 24/7 agony-pain was gone, it seemed the rest of my body was able to settle down and function again. I still do have intermittent nerve pain. But, because it’s not constant, I can get some rest in there. Rest is really nice! :rofl:

I hope you will see things ‘settle down’ eventually! -Bethr

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Dear gabby_jazzypants,

You are so right! Problems both sides of the border! Thanks for educating me more on the Canadian system. I don’t think that the ‘mature’ folks that I talked to have had much dealings with medical issues anyway - they were quite independently healthy. And, you don’t know how things work until you’re in the middle of it.

The American medical system is very much a BUSINESS. (no surprise there. Right?) Of course, I’m on Social Security Disability, so I can’t speak for the ‘normal’ folk who have to get their own insurance - or pay out of pocket. Back in my pre-Chiari days - when I was normal - I was paying for insurance, but never had to use it. That’s the only way the medical business works - they need a ton of people to stay healthy whose insurances will cover the sick.

However, everyone on SSD is sick! On SSD, I can only use medical docs and pharmacies in my Network. Within my Network, I only have to pay a small co-pay for every doc and procedure and medication. SSD pays the rest. If I go out of Network, I have to pay it all. Maybe that’s kinda like the Canadian system???

Up until now, SSD has worked real well for me. It paid my entire decompression surgery AND an anterior cervical fusion surgery a year later. It’s covered all my meds - until now. With SSD, it helps if you have a “Supplement Program” like Humana, AARP (can’t remember what that stands for - something “retired…”) or Aetna. I don’t really understand why I have to have the supplement program. But, I do. I switched from Humana to Aetna so that I could drop the extra $50 a month premium so I could buy FOOD - and wow. Have I been having miseries ever since.

Turned out, this year -2018- Aetna dropped my favorite pharmacy - Walgreens - out of its Network. Grrrrrr! Walgreens was able to supply me with my nerve-pain blocker meds. My new pharmacy will not. They refuse to! I’m still reeling from this discovery. I really don’t know what to do. Go back to Walgreens and pay the extra$$$$ - go back to Humana and pay the monthly premium and get back with Walgreens??? Or, switch my pain meds???

I Googled the whole issue with Aetna - and their decision to drop Walgreens from their Network was all a money-making business decision. Apparently, Aetna makes more money aligning themselves with these other pharmacies.
Sigh. Business. How American!

Aetna not your new pharmacy determines the formulary. They dropped a TON of meds. But most will be restored if you file an appeal. It may take more than one, Aetna was fined for not even reading appeals but rejecting them autmatically (along with preauths.)