Navigating medical care

General
1

I seem to have problems figuring out how to navigate getting proper medical care.

I am on SSi and medicaid. Maybe that's part of the problem, I don't know.

I have been symptomatic for 19 years. Diagnosed in 2010. Had a failed decompression surgery Oct of 2010 and traveled to Ohio from WA state for that. Had private insurance then.

I have been given no therapy, drugs or physical therapy or anything else here at home. Saw a neurosurgeon in Nov who told me I didn't need surgery yet. (I have been to 3 who said I did) He said it was because my syringomyelia hasn't hit my brain stem yet. He told me the pain and numbness in my face shouldn't be happening until I get syringobulbia. I have heard ppl on here saying they have those symptoms with just chiari who don't have syringo. I have also read that is a common symptom in chiari in med journals and major hospital websites (mayo, john hopkins, ucla etc) I even asked if I could get a gentle muscle relaxer to help with the pain and stiffness in my upper back, shoulders and neck, just to give me a short break, even if it is for one day. He told me that my neurologist should handle that.

When I have been to doc and tried to stress the pain/weakness/numbness etc, they act like I'm nuts or a druggie. Yet they can see by my record I don't get prescriptions. ( I don't do drugs or drink either. I do smoke though..yea bad me. ) And ya'd think they have taken enough blood from me to figure that's all proven as well.

I asked the Neurologist how I can get a good team (primary, physical therapist, Ns, etc experienced with my diseases) to help work with me, ppl who 'really know' about chiari and syringo..she walked out of the room saying "they all know about it and you thinking any don't is just your opinion". (i have actually had docs tell me they don't know about it..more than not)

I still don't have a medical team working with me or my questions about how to get any services or a single pill/shot/ physical therapy/pain management etc answered. Just blank air...

In fact, they have thrown the names of my diagnosis, but no doc has ever told me what its doing to me... I have read that on the internet..and docs always tell me..Nah, ya can't believe everything your read on the internet.

How to get help with symptoms, issues...heck medical care at all other that getting this test and that test and them saying "yep, this is what ya got and it is progressing" and each saying the responsibility lays with the other doctor.

Which doc do ya see for what? What kind of therapy's should I be asking for if they don't tell me? Who do I talk to if they ignore concerns/requests? Are there things I should try on my own to help the doc know what to do next?

With hope,

Whisper

2

Whisper,

Unfortunately I do not have the answer, but replied so I can find out if someone else could help answer this. I am having the exact same problem and am having some serious health problems currently and can not get these Dr's to help. They keep passing the responsibility to another dr. then when i go to that dr they look at me like im nuts, do absolutly nothing for me and it has become impossible to get any of them to take me serious. I am in such bad shape right now, unable to eat without shortness of breath, my pain is so bad that im constantly tensed up inside and out, I've lost sooo much weight (under 100lbs, at 5'6") my joints feel like they are tearing. My husband is scared so much so, he thinks im going to die. My kids sit in my lap and cry, please don't die mommy. That's how bad it is, so why will the doctors not take us seriously?! How do we get them to listen and dig a little deeper to look into what's causing it and in the meantime give us something to help us endure the pain and muscle tension? We should not have to suffer!!

Hoping someone has some tips for us as to how to handle these Dr's in order to open their eyes to see we are suffering instead of just blowing us off.

3

I am working through the same thing myself. I am also on SSI with medicaid for insurance so I know the hoops you have to go through. Most of my problems for my CM1 and Syringomyelia are currently handled with my Primary care doctor, including my pain management part. I also have some facial problems with numbness that continue down my side. I have not had the surgery yet, but I have seen (and continue to see) a NS. My biggest suggestion to both of you is to go into your appointment prepared with information. If the doctor tells you the internet isn't reliable ask them to explain to you more. If you have CD copies of MRIs bring those, and review them with the doctors. You could also ask your doctor for a referral to a pain management doctor. I think your primary doctor is where you will get the best results. Sorry if I wasn't much of a help, and I hope you get things taken care of. Best wishes!

4

I am so sorry you guys are having similar experiences. Its just so sad.

Joker, when you say, "Go into appointment prepared with information", Do you have any suggestions?

As I said, when I have gone in with info from internet, they tell me I can't believe everything I read and no doctor has actually given me any information other than 'You have Chiari and Syringo'. They poke me with needles, paper clips, pokie wheelie things, have me walk on my heels and toes, touch my nose then touch their finger, follow their finger with my eyes, draw blood and once a year an MRI. That's the max of my care.

I had my last MRi in June, I finally got the results, after making 2 separate appointments with the Neuro and 1 with the NS in November. (the nero actually referred me to the NS) I had already picked up copies of the report and disks the day I had the MRI and they didn't tell me anything; not even what I read for myself on the report.

I take a brief case with me to all my appointments full of my medical records and test results including disks etc.

So, what information would you recommend?

It would really be nice if there was an organization/special ombudsman/task force...just for people with chairi/syringo who seem to be struggling with medical care or getting educated or informed properly or references to those who really know.

*heavy sigh*

Thanks for your responses.

It means more than you know. :)

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” ~ Margaret Mead

5

It still amazes me to this day how many of us have so much trouble getting proper health care. I too am in the same boat, I live in New Zealand so even finding 1 person who's actually heard of Chiari is very rare, but I plod on educating as I go. I had an appointment with the NS last december and as they already have access to reports/scans etc I took along a body chart with front and back views and I had typed in what problems I had where.(mainly so I don't forget to mention something important, you know BRAIN FOG moments) I also took in the symptoms list from a website. My NS told me not all my symptoms are related to chiari (he didn't get specific) and recommended I see a neurologist so I got my PCP to send off the referral included the body charts so they had a better idea of what symptoms I had. There reply was to decline seeing me and when my PCP rang to find out why, they said the chart made me look like a hypocondriact, so being prepared and going armed with info I have found can backfire, I now think bombarding them with questions and questioning there answers (where appropriate) may be a better way to go, and tell them what you want to happen......."pain management, physio, medication trials, etc" THEY CAN'T IGNORE US FOREVER!!!!

6

I suggest going to a pain management clinic. You absolutely deserve to get relief from the pain. The symptoms you are describing sound classic Chiari to me- and the suggestion by your NS that a syrinx won’t cause symptoms till it’s progressed into your brainstem…just plain bananas. If your PCP is being unhelpful then may be time consider switching.

You guys are suffering, it makes me so sad. We know you aren’t nuts, and we want you to get a doctor who will help you. Prayers to both of you- I hope that knowing you are cared for here helps a little bit.

Hugs, Jenn

7

Drab Sniper... Oh my gosh... that was my plan after the last posts; to take in a body graph and lists from the internet from the major medical centers in order to give them complete information. Now I'm nervous about that. But after being symptomatic for 19 years... I don't remember the difference between when I was fairly normal and now. And not receiving medical care for the majority, I have learned to 'block' a lot out. Deal. Suck it up. etc. (Mind over matter really does work) Though it is not by choice. And it doesn't improve quality of life. In fact I would say I exist...not truly live.

Jenn, thank you so much for your supportive words and concern. And yes, In a way, it does help with the feelings of isolation and alone-ness. So I am grateful. Thank you.

My heart goes out so much to each and everyone of us that have such experiences. I am shocked. Espeically, I think, knowing there are so many illnesses that people get treated for that don't show up on MRi. For instance my mother had Fibromyaligia. I know, it is real pain etc and don't mean anything as an insult, but I know several ppl with it. It doesn't show up on imaging. Isn't seeing believing? WAMP..there it is! Common docs...really? Look at us...learn....see...we are here...we are real. I guess we're just not popular enough. hmm...feels like high school again.

I am so glad you guys are here...the ppl with similar experienced for just being you and reaching out and sharing with the rest of us. And for those that have been blessed and have had good experiences...for giving the rest of us hope.

Without all of you..the world would be pretty dark.

8

Sorry JW i didn't mean to make you nervous not all docs are as narrow minded and just plain lazy as they seem to be here in NZ, my pcp thought the body charts were a good idea and thats why she included them with my referral. I think it's a good thing to keep because as we go about our existing a little while down the track you can look back on your symptoms and re-evaluate them add in new symptoms and even delete symptoms you no longer have weather that is through positive thinking, mind over matter or the symptom just running its course. When I updated my charts I had gone 2 years without looking at them and found a couple of symptoms had totally dissapeared or the frequency had lessened.

Thanks for your kind words Jen please don't be sad there is 1 thing that stands out with all our fellow chiarians and that is we are fighters and as tough as nails. :)