A little over a year or so ago I was a therapeutic riding instructor at a local program. I loved it. Now, after an hour long appointment with my PCP on Wednesday part of it was she would like to see me riding again. I am awaiting MRI results that could be really bad news.
They always say at anytime you can become the student. So true.
Just a little more info. They really shouldn’t give images to people smart enough to read just enough to scare the hell out of themselves. This was my MRI from Tuesday. I have an appointment with an Ehlers Danlos specialist in Baltimore August 15th. She requested a professional courtesty to have an upright MRI with flexion and extension ordered. After being treated like a hypochondriac by my neuro he ordered a standard MRI in the supine position to “calm me down” because I get “so focused on things like this.” I have all the symptoms of an advanced Chiari 1 Malformation on top of all my other fun issues.
This is the image that keeps haunting me and the MRI report is still not back from the radiologist. The MRI was taken on Tuesday morning 4/5/11. The xray report from that day was back on Wednesday morning. I have spent 3 years turning over rock after rock to find the cause of all of these symptoms and now that I think we found the right 2 rocks I’m scared $h!tless.
http://i51.tinypic.com/vwqwj8.jpg
This was me in 2009 for comparison. http://i55.tinypic.com/4ibyhl.jpg
Definitely fire the neuro who thinks you are a hypochondriac, sheesh. Hoping whatever it is will be treatable/manageable.
I am so sorry you are going through this, I wish you all the best. I have absolutely no advice for you, but having had several serious health issues in the past, I can totally sympathize with you on the waiting and scared shitless part…best of luck to you.
No words to describe…
The ironic part… CoTH is the reason I even started down this path and found this. I posted about my fibromyalgia diagnosis on an Off Topic day at Christmas and someone said I should check out another message board. That message board has proven itself to be filled with super helpful people and a few "heck, check this out"s later I found the right 2 rocks to turn over in less than 4 months. It all started because of CoTH. 3 years to get diagnosed with fibromyalgia and then the all of this since the beginning of the year. Almost too much to process. Relief, fear of unknown… I’m just doing what my mom always said to do… Do the footwork. Trusting the rest will work itself out.
Check out NIH
Palominomorgan,
I hit google to learn more about chari. There ARE things that can help. That is good news. National Institutes of Health has active research on it.
I have experience with NIH, and highly recommend getting in touch with them. They are kind, empathetic, knowledgeable and quick to get you in for an appointment. The appointments are free, as are any tests that are done there. If you are likely to be a candidate for a trial, they will help you, both with the strategy and follow-ups. One of the important things for us has been their work is covered by the federal government, so you don’t have their bills going to your insurance company.
I hope that you research to find the best person in the field. That is one of the things we had help from NIH. They are willing to give names and the why for the names. When we called the expert’s office and used NIH as our reference, we quickly had an appointment.
Please p.m. me if you want to talk. (I even know which of the cafeterias has the best food…:winkgrin:)
Thanks. I know NIH and Chiari Institute are doing some wonderful research on EDS and Chiari. Going to see Dr. Francomano on August 15th and I’m sure she’ll refer me to Dr. Henderson. The paper Dr. McDonnell from NIH, Francomano and others co-wrote was the reason I brought this up to neuro last week. http://www.ncbi.nlm.nih.gov/pubmed/18074684 I will be attending the EDNF conference this year I think just to hear them speak in person. All the big dogs will be there and I’m all about learning all I can so I can advocate for myself. I will be seeking out the best to care for me. I also need to make sure I don’t have vascular EDS before anyone does ANYTHING. Pretty sure EDS came from mom’s side, but my dad also died from aortic aneryism (sp?) as did his father and all before him. The women on that side all died from strokes. I have lived through two surgeries and a pregnancy so the odds are that I’m not, but yet you can see every vein in my leg and arm and chest. You could see more in my stomach if they weren’t so well padded. LOL.
Anyway, I’m feeling a little better. Someone actually made a funny joke that is even funnier if you have a nasty Chiari. “It’s good to be open minded. Just not so open minded that your brain falls out of your head.” :yes: I just want the MRI report to come back so I can rub neuro’s nose in my being right a little bit too. Maybe the Cornell degree means I’m not a total dumb ass and you shouldn’t treat me like one, huh?
Just looked at NIH site. Chiari studies require 3 family members to be diagnosed. Most of my family has passed so that is going to be tough to do. Guess I’ll be paying some top notch doctor as an out of network provider and from what I read most of them don’t accept insurance. sigh
Good luck with this. With the attitude that you are going to take the best care of yourself and you rooting for you, it will help. Hugs to you.
PalominoMorgan- good luck and chin up!
Finding the right causes and then the right doctors is crucial. But so friggin difficult, isn’t it? Trudging through unsupportive doctors is the worst: frustrating, demoralizing, exhausting, and expensive.
I hope the new information the brain MRI has provided leads you to better management of your symptoms. Such a diagnosis is scary, but so is spending the rest of your years without a correct diagnosis and treating all the wrong things- or the right things the wrong way.
I have a family history of EDS and I have EDS symptoms. My family and I totally get all the flexibility jokes: double-jointed ain’t nothing :lol:. I have never heard of Chiari before. I am plagued with back issues and no one can explain why I keep rupturing after ceasing all activity. NO riding 
.I feel like I am running out of rocks to turn over: and certainly running out of energy to scramble around those rocks.
Good for you for keeping at it and turning over more rocks! Good for you for speaking up for yourself and pushing your doctors: it is your body and you are the expert on it!!
Monday morning update - SO MAD!
You know why there’s no report back yet??? My neuro reads his own images!!! That means there will be NO report. No report to send to Dr. F. No report will be sent to my PCP. He probably won’t even call me back to tell me I was right.
I AM SO MAD MAD MAD RIGHT NOW I WANT TO SCREAM AT THE TOP OF MY LUNGS!!!
I asked the imaging lab if I could request to have their radiologist read the images and after checking with a supervisor, she apologized and said no. So, I’m stuck. I probably won’t get a report out of him and without a report to send to Dr. F it’s just me saying I have an obvious Chiari 1. Guess I’ll have to try to have my PCP fight with the insurance company to order an upright MRI so I can get a report.
This is so un-effing believable. Good thing the Wellbutrin has me feeling better. I’m ready for a fight now A-hole! Bring it on!
Palominomorgan,
You can still get an appt with NIH and get their 2nd opinion.
Just because you don’t fit a current study doesn’t mean that they won’t talk with you and discuss who is doing what in the field. When we went for the first interview, there wasn’t a match to a trial. However, they were quite willing to keep us in the database and acting as resource. We kept the reports going to them, and stayed in touch. Eventually, there was a match.
I’m glad you are going to that conference. There is nothing like face to face contact.
Keep me posted. If you come to Washington, let me know. 
We have been through this, too
Doctors are required by law to release patients records to the patient and other doctors that the patient has requested.
If you want your other doctors to have them, call their offices and ask for the forms. There will probably be some faxing or email involved. The specialist can request copies of the actual MRI. We personally, have copies of our MRI’s on cds. Frequently, the specialists want to see the images and evaluate them, as the reports can be incorrect. (We have had that happen) NIH will also take their own on better equipment. We had to strong arm a lab to give up some images. NIH was great in applying pressure.:winkgrin:
I have the images on CD. Just going to send them to Dr. Francomano myself. She can read them. Here was my latest update I just posted after a phone call back from neuro’s office.
It gets dumber and dumber. Neuro reads the reports before the next appt. Mine is in JUNE!!! I requested an earlier appt. I go back in next Wednesday. GRRRRRRR!!!
Come, let us scheme, bwaa haa haa!
You are planning on changing from this neuro to someone better, right?
Being furious takes a lot of energy and adreneline. I had to learn to count to 100 to let the chemicals in the brain calm down, then plot my next step in strategy.
It sometimes has helped me during the furious stage to strategy stage to plot machevellian schemes, that I have no intention of doing.
My favorite is stuffing a roadkill dead skunk down the chimney of the dastard who incurred my wrath…:eek::winkgrin::lol:
A report to the state medical licensing board investigators might be useful, too…:eek:
I plan on using him as a marionette puppet for right now to get the tests I need ordered and will then be neuro hunting once again. I really suspect his attitude has to do with his new partner in his practice. Before I went to this neuro I saw another guy and he was a total jerk. I brought in 3 typed pages of neurological symptoms and my brain MRI and was dismissed with a “when you have some real neuroloical symptoms you should feel free to return.” Guess who just joined the practice? That’s right… the first A-hole I ever saw. I about fell over the other day when I was checking out and saw the laminated press release in the office. Even my PCP was beside herself when I told her. So, you are the company you keep in a lot of ways and I shouldn’t be surpised he’s turning in to a massive jerk as well I guess. For right now, I need this neuro to write an order for one more MRI and then I can be done with him. I need an order for an upright MRI with flexion and extension. Although, with the images on the way to the EDS specialist I’m sure I’ll be seeing the real Chiari/EDS specialist sooner rather than later and they will order all the images they want too. Would just be nice to have my insurance cover some of the cost now though. There’s not much I hate worse than a bully who takes advantage of someone weaker. In this case it was me. I won’t be surprised if I get reprimanded for harassing his office staff for results and if he refuses to order any futher testing either, citing there is no medical emergency here. I put the odds of him being decent and having any sort of remorse at about 1%.
So, I am going to ride again. Not this Saturday, but starting on 4/23. I will ride with another adult rider who is an accomplished horse woman as well. I am looking forward to letting my brain go and just enjoying being on a horse again. It’s only an hour once a week, but considering I haven’t been on a horse since last summer I’ll take it. I’m actually really looking forward to some equine therapy.
have a great ride…and let us know how it turns out!
Hi everyone. So, I was able to ride yesterday since my neuro did sign off on me being fit for horseback riding. (He told me my MRI was normal, but then while off in the daisies trying to explain away my Chiari symptoms slipped and said I had a couple cervical discs that were bulging and my neck was straighter than normal.)
So, I was glad I rode at the therapeutic riding center. My first reaction to being on a horse again was that I was very top heavy and my balance felt very off. It took a good 2 laps around the indoor to feel my body and muscles really start to remember what they were doing. The best was when I dropped my stirrups and just rode without them. I just walked. I had no desire to do anything more than that. It was a nice change to be moving and to be able to look up, not to look at the ground right below my feet where I was walking. We also did some stretching on horseback and I was shocked at how little I was capable of. There were things that I always asked my riders to do as an instructor and I couldn’t do most of them.
I think it was good for me mentally and physically to be back on a horse though. My last ride on my mare was last June and the changes in my physical capabilities from that time until now are a bit astounding. I see my PCP again on May 4th and have a lot to follow up with her about. Seems like I always do these days.
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