How to advocate/educate wiht my drs

Welcome Greetings and Introductions
1

I just joined and am excited to find a community! I am looking for some ideas on how to work with my drs. who do not have experience with Chiari, or whether I should find new people to work with.

A little background: I was diagnosed by a specialist at the Cleveland Clinic with Chiari in 2002, after seeking his opinion after MRI findings showed a small spinal cord lesion at C6-7. He said I did not have syringomylia but there was a small Chiari and it should be followed carefully. At the time I had noticed more difficulty in doing steps (Irish dance), tripping up stairs and dropping things. Things have progressed to where I need to use a forearm crutch and foot brace for walking and a manual wheelchair to teach. My neurologist here diagnosed generalized dystonia but said there was no Chiari. Scans showed it until I went to a new place where the lesion and Chiari were suddenly not seen, but symptoms have progressed and I am struggling to find support. I feel like I can talk to the drs. I have right now, but they don't know what to do and are suggesting things like depe brain stimulation but are not open to discussing whether Chiari is a factor. Early in this process I ran into a couple of drs. who said it was me causing the issues, it was all psychological or if I was married all the problems would go away, so I have serious dr. defensiveness! I am in Minneapolis so we have good facilities, but I have not found anyone with much knowledge specifically about Chiari and what could/couldn't be contributing to the physical progression.

I don't know if I should keep the drs. I have (the main ones I work with are a physiologist who handles the functional parts of this stuff and my neurologist) or try to look for new ones. I want to continue teaching (this is my 14th year as a special ed teacher), I do not want to begin a revolving door of going to a ton of different people and I want to preserve function. Any suggestions/feedback are welcome! Thanks!

Annie

2

Hey Annie!

I am also new to the forum, and I appreciate your thoughtful question and also what you were willing to share. I have learned in this process that this health issue is very misunderstood. I actually bring articles and current research to my doctors so we can use them to develop an effective plan together. My big lesson in the past fifteen year journey since my diagnosis is to know what you are needing when you go to the doctor's office.

Here are questions I ask myself to prepare for a visit:

a) Are my medicines keeping my pain in check? I found I was afraid to ask for what I needed around this for fear of appearing as a drug seeker, so I would people please and take tons of Ibuprofen to be in my body, Then, my kidneys started failing, and I was in the hospital for 8 days doing biopsies and other awful procedures. So, now, I am honest and ask for help. I take steroid dose packs, toradol injections in my hip, and other medicines.

I am not allowed to take any NSAIDs of any sort now.

b) What are the main symptoms that scare me and keep me up at night? Because there are so many on the list at times, I want to ensure I am specific about which symptoms worry me the most and see if there is an action plan - especially when a new symptom pops up.

c) Am I truly able to work full-time? If not, you again need to be honest about this and see if the doctor can help you with this. I believe I worked an extra seven years because of the kind supportive, and fantastic support I received from my doctor. She changed medicines and tried unique drugs to make me as comfortable as possible. She asked me regularly about this piece, and I always knew when the time came, she would support me going onto short-term disability if ever needed.

d) Are you feeling suicidal? If you haven't thought of suicide yet, I would be surprised. It think it is a more common experience than many want to admit due to the shame we place on this in our culture. However, I strongly encourage you to be honest if this is the case, because they can help with this. Your world gets smaller at times with this health issue, so being honest about what you need emotionally and spiritually will enrich your life and sometimes save your life.

e) What judgments do you carry about people with serious health issues? I find we all have judgments from our upbringing about long-term illnesses and how they affect people. This process has taught me about compassion for myself and then in turn, compassion for others. When a person is suffering daily, it changes their life in inexplicable ways. It is no small thing. So, confront your own beliefs or judgments you carry so you can be the best advocate and kindest person to you.

The reason this is important with preparing for your doctor's visit is because if you have judgments about people on disability, this may get in the way of you asking for what you may need at some point. So, addressing these is critical to your mental well being.

Lastly, if a doctor does not reflect concern or empathy for you, find a different one. This is easier than you may think. Ask around and find a local doctor that will actually care. I know my doctors care about me. They have become friends over the years, and I look forward to seeing them. I can tell my doctors anything and I know they will listen. Without them, I may not still be here. That's no exaggeration.

I wish you well on this journey. Please know you are not alone. You deserve to find the answers you are seeking but I strongly recommend focusing on a solution to your pain and suffering rather than stressing too much initially on having the perfect diagnosis. I believe addressing your symptoms first can clear the slate for you to address the underlying cause or root issue. That's just my belief; it doesn't make it true for everyone.

Peace, Brian

3

Welcome to the group! I was just diagnosed a couple weeks ago and have my first appointment with a NeuroSurgeon tomorrow. I don't have much advice for you regarding this as I have limited experience with Chiari, but you will find this group to be very informative and supportive. I have learned a lot here.

My feeling is that since so much of this is misunderstood you could be taking risks working with doctors who have no knowledge of it. I would personally be cautious of working with doctors that do not have any experience with this, and as Rebecca commented, most doctors don't like it when their patients know more than they do about something. Ultimately, you have to do what is right for you and makes you most comfortable, just be careful. If you trust your current doctors, perhaps you could work with them alongside other doctors who have the knowledge. Sometimes using doctors within the same network helps. My primary care doc is in the same network as the neurosurgeon I am seeing. So they can work together on things when needed because the information on my medical history is easily accessed through their network system and they are able to communicate with each other easily as well.

I am working on my Bachelor program to be a special education teacher and from what I have been told depending on your diagnosis and surgery options, you might be able to continue teaching. I have hears several stories that the surgery is very successful. I have not been diagnosed with anything other that Chiari at this point. Don't give up on teaching (to quote what a fellow member told me).

4

Hi Annie! It has been my experience that unless the neurologist is a specialist in the field, he/she often doesn't "diagnose" Chiari. I've had a radiologist miss it completely, a neurologist who had NO idea what it was, a specialist neurologist who deemed them "low-cerebellar-tonsils." I would recommend that you find a neurosurgeon. Even if you, down the road, opt for no surgery, at least you can have the peace of mind and possibly more options. Some neurosurgeons don't require a physician referral but will want your records and images. It would be best if, instead of a revolving door of physicians, you find and develop a health care team to follow your health and continue seeing you, even if only on an as needed or yearly basis. I highly recommend finding a NS who can at least see you and rule out anything anatomical and repairable. He/she can help you weigh the pros and cons if surgery is an option. He/she should take into consideration your need to continue working, your age, your current limitations and symptoms, as well as possible outcomes both good and bad. Hope this helps!
XOXO