# The Saga of Ruffian's Mystery Diagnosis (DiagnosES, really) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [August 4, 2015, 1:46am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942 "2015-08-04T01:46:12Z")\ **Posts on this page:** 13\ **Page:** 1
**Author:** ![Ruffian](https://avatars.discourse-cdn.com/v4/letter/r/71e660/32.png) [@Ruffian](https://boards.straightdope.com/u/Ruffian)\ **Post date:** [August 4, 2015, 1:46am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/1 "2015-08-04T01:46:12Z")
Not _exactly_ mundane or pointless, but in the continuing battle against ignorance I must share. (And WOW, did I encounter an alarming amount of ignorance.) Actually, I am under doctor’s orders to share. I had brain surgery–a posterior fossa decompression with cerebellar tonsillectomy, to be specific–on January 13 this year after years of slow, spiraling hell. I encountered a battle I never anticipated during the years of seeking help–doctors were mystified by me, and proved ignorant of my condition(s). I sought the opinion of one of the world’s best for one of my conditions, Chiari Malformation Type 1 (which all but 1 of the local specialists denied I even had), and ultimately flew 3000 miles to have him operate on me. (No way no how after all I’d been through was I letting anyone local near me with a blade.) The results have been astounding, so much so my PCP was taken aback by the change in my neurological exam and my demeanor as a whole. She repeatedly said I made the right choice flying out to NY (she was circumspect at first)–I absolutely did the right thing. I still smile remembering how her jaw dropped when she noted my hand tremors were gone. Woot! The 6mo follow up I had with my surgeon was Friday via Skype (my PCP did the hands-on exam; he did the consult and reviewed MRI films with me), and it was an absolutely life changing moment. That 22 minute call redefined my life as I knew it, and 30 years of symptoms and suffering–physical, yes, but boy howdy mental and emotional as well–suddenly all clicked together. The full story of that follow up is here, in my blog: [An epiphany or two, 30 years in the making: 6mo post-op follow up with Dr. Braaaaains…erm, Bolognese](http://hollyhobbyhorse.blogspot.com/2015/08/an-epiphany-or-two-30-years-in-making.html) Synopsis (AKA my Facebook status from shortly after the call): > [@](#): > > Fridayy was my 6mo post-op follow up with Dr. Bolognese, my brain surgeon. It was…amazing. Unreal. It’s a long story I’m going to save for barfing into my blog, but the shorter version (though admittedly not short) is in addition to the Chiari I malformation, I have been diagnosed with a connective tissue disorder (and actually was back in November; things were so blurred and the Chiari took up so much of my everything that I didn’t realize it was a diagnosis) that explains _so_ _stinkin_ _much_ of the last 30 years of my life. And, that connective tissue disorder (Ehlers-Danlos Syndrome/EDS) combined with my Chiari malformation leads to dysautonomia, which isn’t exactly a diagnosis but a collection of symptoms associated with a malfunctioning autonomic nervous system (which makes sense, as my crowded brain stem is the core of that system). Dysautonomia _also_ explains _so_ _stinkin_ _much_ of the last 30 years of my life. So, so much. > > Dr. B even mentioned casually how patients like me have a positive rheumatoid factor, though not high positive, and my jaw hit the floor and I started crying. I had never discussed this with him, but that is _exactly_ me. Twenty years ago I first went to the docs when I realized 22yro-me shouldn’t ache and have fatigue the way that I did. My rheumatoid factor was positive, though I didn’t present as rheumatoid arthritis, the docs more or less shrugged and said it must be RA. It never sat right with me and seemed wrong, and embarrassed, I gave up seeking help from docs. I told no one about this for at least 15 years. > > I’ve had decades of doubt, embarrassment, humiliation, _shame_ over my symptoms. I stopped pursuing help 20 years ago because I was ashamed no clear answers could be found. Surely that meant I was crazy, right? Or psychosomatic? Or hyperemotional? Or just a whiner? I didn’t want anymore attention. I didn’t want to be That Girl. Decades later, my body gave me no choice. > > At the end of the appointment, Dr. B asked me to do something: tell my story. Go on social media (hi!) and share what I’ve been through, what my symptoms are, the battle I’ve endured medically, the doubt and shame and judgment and “being written off as a whackadoo.” He said it wasn’t about sending people to Dr. this or Dr. that, but about helping others lost in the fog to this condition. In other words: educate. _That_ I can do. > > Here I am. I go into detail over how all of this makes sense in the blog, but don’t want to make this TL;DR. (Too late?) 😉 I recognize now I will likely never work again, but I’m so grateful that I can actually somewhat _live_ my life, I am more than okay with that. ---
**Author:** ![Helena330](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/helena330/32/531_2.png) [@Helena330](https://boards.straightdope.com/u/Helena330)\ **Post date:** [August 4, 2015, 2:29am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/2 "2015-08-04T02:29:13Z")
Holy cow, **Ruffian**. I’m sorry it took so long, but I’m so glad you finally did! When I saw your title I thought some new equine research on your namesake had been done. Here’s hoping you can get in lots of riding. The world looks best through horse ears. 🙂 ---
**Author:** ![ZipperJJ](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/zipperjj/32/211_2.png) [@ZipperJJ](https://boards.straightdope.com/u/ZipperJJ)\ **Post date:** [August 4, 2015, 3:10am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/3 "2015-08-04T03:10:13Z")
Wow, what a story! Here’s to LIFE!!! ---
**Author:** ![Sunny\_Daze](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sunny_daze/32/438_2.png) [@Sunny\_Daze](https://boards.straightdope.com/u/Sunny_Daze)\ **Post date:** [August 4, 2015, 4:56am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/4 "2015-08-04T04:56:28Z")
Happy, happy!!! ---
**Author:** ![rowrrbazzle](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/rowrrbazzle/32/414_2.png) [@rowrrbazzle](https://boards.straightdope.com/u/rowrrbazzle)\ **Post date:** [August 4, 2015, 5:32am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/5 "2015-08-04T05:32:46Z")
Congratulations on FINALLY getting the correct diagnosis and treatment! A truly epic story! Can I make one suggestion? Your descriptions of the areas in question are a bit confusing (e.g., “the triangular-shaped tip of the dark grey thingy”). Circling the areas and providing one-letter labels and referring to them in the text would help a lot. I had to bring up the before and after MRI images in separate windows and switch between them to finally understand what had been going on. ---
**Author:** ![Ruffian](https://avatars.discourse-cdn.com/v4/letter/r/71e660/32.png) [@Ruffian](https://boards.straightdope.com/u/Ruffian)\ **Post date:** [August 4, 2015, 5:52am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/6 "2015-08-04T05:52:04Z")
> [@rowrrbazzle](#): > > Congratulations on FINALLY getting the correct diagnosis and treatment! A truly epic story! > > Can I make one suggestion? Your descriptions of the areas in question are a bit confusing (e.g., “the triangular-shaped tip of the dark grey thingy”). Circling the areas and providing one-letter labels and referring to them in the text would help a lot. I had to bring up the before and after MRI images in separate windows and switch between them to finally understand what had been going on. Thank you–I totally want to edit the pics like that, but I don’t have any sort of photo editing software than enables me to do so. Is there any sort of basic freebie software download that at least will let me draw and type on my images? ---
**Author:** ![Merneith](https://avatars.discourse-cdn.com/v4/letter/m/57b2e6/32.png) [@Merneith](https://boards.straightdope.com/u/Merneith)\ **Post date:** [August 4, 2015, 9:48am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/7 "2015-08-04T09:48:32Z")
Try [Paint.net](http://Paint.net) - it’s free and it’s a fairly robust Photoshop clone. > **[Paint.NET - Download](https://www.getpaint.net/download.html)** > > Paint.NET is free image and photo editing software for computers that run Windows. Congrats on your diagnoses! Thanks for sharing your story. ---
**Author:** ![GuanoLad](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/guanolad/32/42_2.png) [@GuanoLad](https://boards.straightdope.com/u/GuanoLad)\ **Post date:** [August 4, 2015, 9:53am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/8 "2015-08-04T09:53:22Z")
Brilliant. So is the relief because you can now seek appropriate treatment? Or is it just some peace of mind and a weight off your shoulders (and cranium)? ---
**Author:** ![Ruffian](https://avatars.discourse-cdn.com/v4/letter/r/71e660/32.png) [@Ruffian](https://boards.straightdope.com/u/Ruffian)\ **Post date:** [August 4, 2015, 9:31pm UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/9 "2015-08-04T21:31:16Z")
> [@Merneith](#): > > Try [Paint.net](http://Paint.net) - it’s free and it’s a fairly robust Photoshop clone. > > [Paint.NET - Download](http://www.getpaint.net/download.html) > > Congrats on your diagnoses! Thanks for sharing your story. Awesome!! Thank you so much! I have a new obsession. 😃 Perfect for days like today when I ache and need something to do. I will fiddle with this later then update the photo on the blog. **Guanolad** , it’s both, really. The answer–that there IS an answer (or three)–is huge. 🙂 ---
**Author:** ![Ruffian](https://avatars.discourse-cdn.com/v4/letter/r/71e660/32.png) [@Ruffian](https://boards.straightdope.com/u/Ruffian)\ **Post date:** [August 8, 2015, 4:08am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/10 "2015-08-08T04:08:55Z")
Okay! Using the [Paint.net](http://Paint.net) **Merneith** recommended, I updated my blog to include a labeled diagram along the lines of what **rowrrbazzle** was thinking. Enjoy! Or something. 😉 I spent this week going through the boxes and boxes and _boxes_ of classroom stuff in the garage. I didn’t have the energy (physical, emotional, or psychological) to face the finality of going through it until now. But with all these diagnoses, I realized the odds I am ever teaching professionally again are exceedingly thin. It was time to let go. Seventeen years of my life…gah. It was hard, but I was done. The recycle bin was filled, my teacher friends generously bought boxes and boxes of items from me (for next to nothing), and in a beautiful symmetry, I gave some of my most personal items–inspirational decor, framed words, teacher-y things–to a former student of mine who has just graduated college and is about to begin student teaching. I still kept piles of materials for use with my own kids, but most of it just had to go. I figured if and when I ever do go back to the classroom, I’d want to start all over again, anyway. It was painful, it was heartbreaking, it was just…sad. But it was the right thing to do. I can move on now, but admit I will occasionally glance back over my shoulder. ---
**Author:** ![Arabella\_Flynn](https://avatars.discourse-cdn.com/v4/letter/a/8491ac/32.png) [@Arabella\_Flynn](https://boards.straightdope.com/u/Arabella_Flynn)\ **Post date:** [August 8, 2015, 4:17am UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/11 "2015-08-08T04:17:34Z")
Well, you just gave me some hope, **Ruffian**. I’ve always known I was something of a mutant, but only recently have I tripped over some research papers that suggest that a lot of my problems are dysautonomia connected to Ehlers-Danlos. (Type III/Hypermobility, for the record. I am super bendy, but not to the point of surgery and arthritis. Yet.) So far, everyone I’ve shown the stack of papers to seems to think I’m right, but they don’t have any idea what to do about it. Your diagnosis seems way more complicated than mine. If your case got resolved, surely they can figure out what to do with me, too. 🙂 Thanks for sharing. ---
**Author:** ![Rhiannon8404](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/rhiannon8404/32/17929_2.png) [@Rhiannon8404](https://boards.straightdope.com/u/Rhiannon8404)\ **Post date:** [August 8, 2015, 3:52pm UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/12 "2015-08-08T15:52:59Z")
I’m really happy for you that you have accurate diagnoses. I have a friend with EDS and another whose 9 year old son has Chiari Malformation 1. I am familiar with the struggles both have had to obtain correct diagnoses and treatment. ---
**Author:** ![Ann\_Hedonia](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ann_hedonia/32/319_2.png) [@Ann\_Hedonia](https://boards.straightdope.com/u/Ann_Hedonia)\ **Post date:** [August 8, 2015, 7:40pm UTC](https://boards.straightdope.com/t/the-saga-of-ruffians-mystery-diagnosis-diagnoses-really/726942/13 "2015-08-08T19:40:21Z")
That you for posting this. A friend of mine had surgery for a Chiari malformation in April of this year. it’s been a hard road for her and perhaps the hardest part was a lack of understanding on the part of her friends and co-workers. I’m going to send her a link to your blog. Thanks again.