Am I being too idealistic to think that if we had some type of pre appointment information to give our primary care and NS doctors to show them the difficulties we face, that it may help them understand our plight, even slightly more than they know.I have found that in the short time I have been reading the individual horror stories that come with Chiari diagnoses ,that almost everyone of us has their own battle with a poorly informed medical profession.If they would take time to read our stories as we do, it could help them understand the amount of problems we have to face on a daily,if not hourly basis.BUT! we all know this is not going to happen,maybe because, as with my General Practice doctor,that"in all his years he has never had a case of Chiari or EDS.All I am saying is, to save their precious time,that if we had a check list of our symptoms,that ticked the ones applicable to us ,out of all the known possibles ,from the profound to the obscure, it may help our situation.If they read individual profiles,hopefully something should give.
Maybe a standard information schedule ,compiled by this support group with all the information about ,what Chiari is, and how it effects each and everyone of us who has it,no matter how many millimeters are involved.Short and to the point, with our own applicable boxes ticked.Could work?Or am I just in a brain pressured fantasy land that even Walt Disney could not make up.Anyhow,thanks for reading if you made it this far.Just sayin.
Thank you Tracy for the factsheet information.I think what I was trying to point out is that, I am very moved by the individual stories and the courage shown by each person and their families involved with CM &EDS and the rest.With this in mind I thought that if we could motivate clinicians with the very personal side of CM,how it takes over our lives and families lives ,then maybe they would be less dismissive .I think I brought this up because I have to find another general practitioner,as my present one is just not up to the task.The thought of going through the whole amount of explanation to a new doctor is almost impossible to think about.My doctors comment yesterday was how weak and tired I looked,he gave me more pain meds and that was it,even though I told him how much worse I was becoming,.huge heart palpitation problems and as I have had two near fatal heart attacks, I thought he would be more mindful.I would like something with a little bit of weight attached like possibly The Chiari Support International heading and followed by the information I mentioned earlier.Maybe a document that I could download like what you have ,but with the extra personal individual stories that are similar to my own.I am sorry if I sound as if I going off on a tangent but I find I cannot explain myself very well these days.Thanks again for putting up with my vent and thanks to everyone for the support,you all inspire me with your stories ,courage and hope.
Love all the above ideas. But what I'm hearing putty say is that a common form that could be brought to treating MDs would be a quick way of representing yourselves.
I have many patients who bring a few pages(if it gets beyond 3, it becomes very time intensive to absorb at 1 sitting) of typed issues. Specifically, what helps me as an MD is a list of symptoms(as specific as possible, meaning location, frequency, severity, and duration), a list of current medications(and medications that have been tried in the past and failed), and past medical history(other consultants who should get your note, prior surgeries, other diagnoses, etc).
When I get a patient synopsis similar to above, it tells me the patient is well-informed and is taking an active part in their treatment. Almost always that patient will get more time and attention.
A list of questions is also helpful to prepare you for the visit. I usually just sit next to the patient after what I consider completion of the visit, to make sure we have answered all their questions(essentially both reading their question list at the same time).
I'm not sure a template with blanket check marks for symptoms would be helpful, as Chiari can be so variable. But I do strongly encourage preparation for clinic appointments.
Agreed. Like all professions, some are better than others. You will probably hit a few duds on the way. I do have the patients do some repetition for me. I like to hear some from them personally and I do start by apologizing for the repetition.
Thanks Dr. Trumble...that is so right!! I learned through my own journey that a detailed list as you suggested is best.
The doctors I had seen (Many!) were not to welcoming to pages of info printed out from the internet...even if those pages were, in fact, correct and informative information.
Not all docs are like you, Dr.T..UNFORTUNATELY!!! Many of the doctors I had seen were highly offended if I even questioned their knowledge base!
I will, however, be eternally grateful to my primary doc at the time...This man had passion..He researched , called other doctors and even called me to apologize for calling one of my doctors a "Quack!"....this was for a non Chiari related issue..but it was during the same time period...I had Lyme Disease at the time my brain MRI showed the CM....Many doctors are not well versed in the many symotoms Lyme can cause...actually, many of Lyme Sx's mimic those of CM.
I always try and tell new folks here to do their best to bring someone along to their appointments....another set of ears is always good!
I have a very special reply. I am Dr. Trumble's patient. I sent him 4 prepared pages prior to my consult...sorry it was a page too long Dr. T...and he really did digest it and spend that extra time with me and my family. He also sat with me for an additional 30 mins at the end and went over my two pages of questions. Additionally, he even showed us where my Chiari was visible on films from years ago but never noted by the radiologist or Dr. I feel like finding Dr. Trumble was a blessing from God. He is every bit as amazing as you speak of him. He has made this crazy, stressful Chiari journey so much more bearable.
Dr. T, when they tell you on here you are different; one of the special doctors who treats patients with compassion and respect, you need to take that to heart. You are rare. I told you a couple weeks ago that I completely trust you. It's true. I am sure most people don't say that to their Drs.
To everyone else, I have used the same diagnostic sheets with the dozen or so other doctors I have since I was diagnosed with Chiari and EDS in June. Or actually...as the first neurologist called it...Cheeeeeari (like cheese). Thank God I found Dr T! The sheets definetly helped with most of the doctors, not as completely as with Dr. T, but they helped. Additionally, I think the biggest benefit to me in preparing the sheets, was that for the first time ever, I looked art myself wholistcally. Instead of a dislocated knee being seperate from a headache, it was all in one place. This led to an easy diagnosis of EDS. It also allowed me to talk about my symptoms more coherently. I would reccomend the exercise of preparing the sheets to everyone. I would be happy to share my forms if your interested.
Thank you again Dr. T!
Jenni Moore
Ps. Believe it or not, Dr. Trumble also has the best PA I have ever encountered. Julie is the BEST!
But here is my problem with this notion of taking the doctor a detailed symptom list, especially a list with the spectrum of symtoms chiari causes, is that the doctor accuses the patient of having “anxiety.” I switched neurologists in May, just wanting a second opinion because the neuro I was seeing was insistent my problems were all due to migraine, but he had never done any thorough testing on me and just kept throwing meds at me.
So I made an appt with a local reputable neuro who has great credentials and did a fellowship at Mayo. I took in a long, detailed symptom list and asked his opinion of what a good course of testing and treatment would be, and his response was that I clearly had a case of undiagnosed generalized anxiety! The more I denied having any problems with anxiety, it only seemed to make him believe it more. Ugh. He’s the first doctor that has ever suggested this, but now his notes are following me around to all of the specialists I’m seeing, and now I fear I’m being viewed through the lense of “anxious woman disorder,” and now I truly hesitate to be open and detailed with describing my symptoms to doctors because I fear it will just reinforce this misdiagnosis of anxiety. I mean, is it sometimes better to not go into too much detail on our symptoms so our doctors don’t get weary of us and just chalk up all of our problems to health anxiety? What is the balance when speaking to he doctors about symptoms?
Incidentally, this is also the neurologist who told me I shouldn’t even consider chiari surgery because 1. It’s not the problem (it’s migraine and generalized anxiety in his opinion.), and 2. He said it will “ruin” my life if I have it done. He said he has only dealt with chiari patients who have caused themselves a lifetime of pain and misery by having the surgery…Real encouraging,huh? So I don’t really know quite how much I want to say to doctors anymore…:-/
Yes I had a similar experience but you have to realize that a lot of drs downplay chiari and/or chronic pain. Make sure you are seeking chiari specialists
I really can see a great need for front line doctors for Chiari patients.Those who are not necessarily surgeons, but well informed general practice people like Dr Trumble.More people seem to be diagnosed every day, so there is a huge gap to be filled by more PCP`s who understand this condition, after it has been diagnosed,and beforehand.I agree that any notes written by a doctor who is uninformed about Chiari will follow and haunt you.It`s happened to me many times and even after a diagnoses of connective tissue and Chiari they still have no idea on how I should be treated.