Wow! Glad to hear things are going so well for you. I hate being sick as well, patience isn’t easy. But it will pay off.
Your struggles of the past had me really distressed in empathy, so your finding that wonderful surgeon, and surgery’s results have me also joyous on your behalf. You were inspiring before, and are even more so now for having figured out what needed to be done, and accomplishing it.
When you feel up to it, and have time, I hope you will consider writing a book about this disorder, and that there can be a successful treatment for it.
I really enjoyed the video of the two critters with a case of the ‘zoomies’ racing around the arena.
That feeling of vindication, when you find out something really was wrong, after being basically told your nuts, is wonderful isn’t it?
Happy dance for you, my dear! I love reading your updates and seeing your pictures of your horses. I am smiling like crazy right now–what a joyful post! More jingles for continued improvement, of course, but I am so pleased the surgery was so positive.
Glad to hear you keep improving! Love the horse pics and the fact that you are able to get back to your lovely horses.
Must say I would be taking of my medical info back to those docs who said nope nothing wrong and going “Ha! You were wrong!”.
P.
Thank you again, everyone. You all encourage me so–more than I share and more than I can express.
Polydor, I’ve wanted to go into certain doctor’s offices with two-hand-single-finger-salutes blazing, let me tell you. No one (okay one) was a jerk to me, but most of them were what I’ve been calling “kindly, condescendingly dismissive.” Practically patting me on the head with a there-there, it’s “just” the fibromyalgia. Others, realizing very clearly by my exams something was neurologically wrong, fixated on it being Something Else (multiple sclerosis was the most popular theory) and were puzzled when my labwork was all normal (as it would be with Chiari).
redmares–yes, that vindication is so sweet, and I tightly embrace every bit. I thought it was funny that this time, I found I was getting such satisfaction from something in my surgical report…you know, AFTER brain surgery. But the more, the merrier. It’s just something else to add to the “SEE?!” column, which up to surgery was rather thin.
sdbredfan, thank you for your kind and encouraging words. I’ve heard from a few people about writing a book, but I’m not (yet) sure what it’d say. For now, I just keep track of my blogs and updates in a single Word document. It’s been one hell of a journey, to say the least, and I’m still not sure where it’s headed. Heh, the other day I was listening to Simon and Garfunkel, and the line “Well, I’m on my way. Dunno where I’m going, but I’m on my way. Taking my time, but I don’t know where,” really resonated with me.
calvincrowe, thank you for always being my cheerleader. 
It’s not all sunshine and rainbows, but I try each day to focus on being and remaining positive. Not “yay, everything’s okay” but rather living in.that.moment. I still worry maybe I should sell Tril, maybe I won’t ride, maybe we should get out of horses…and then I catch myself and say, this is today. This is now. That is later. Now, I can’t ride, but I can brush and groom and turn out and they still give me so much. I’m trying to not let the future preoccupy me. I’m really bad at it, but I have little other choice–either I worry and stress and make the Now miserable, or I live in the moments I have and see where they take me. (Sprinkled with moments of foot stamping impatience.)
[QUOTE=Polydor;8021808]
Glad to hear you keep improving! Love the horse pics and the fact that you are able to get back to your lovely horses.
Must say I would be taking of my medical info back to those docs who said nope nothing wrong and going “Ha! You were wrong!”.
P.[/QUOTE]
Poking my damaged head in here on this one. As with Laura - I had all the same issues in getting a diagnosis and all the same doctors making you think you were crazy. There were three in particular that stand out (amongst the countless others):
1 - Told me after I showed him the definition of Chiari (my research thank you) and my MRI showing “borderline chiari malformation” (at that point it was a small herniation) - said to me and my mother - “No it couldn’t be.” Made an appointment at Hopkins and, of course, it was. Wrote him a letter advising him that his incompetence was bordering on malpractice and could have cost me my life. NEVER HEARD FROM HIM.
-
Chiari neurosurgical specialist at UVA (note: still listed on all the chiari sites as one of the top chiari doctors) - went to see him specifically to decide whether I needed surgery and to find out if I had a syrinx (cyst in my spine). Had a 2 hour MRI of my entire spine and he looked it over - said I did not, to come back and check with him in a year. I asked him if he could give me something for the pain and he told me to “go see a headache specialist - he hadn’t written a prescription in 25 years.” I did just that, found my wonderful neurologist who confirmed that I did indeed have a syrinx in my spine and further had no spinal fluid getting to my brain and surgery was necessary within 3 months! Wrote him a love letter and NEVER HEARD BACK!
-
My second surgery at Hopkins (different doctor than I saw in #1) - he said my headaches after my first surgery were because the doctor took too much bone out. His solution was to perform a cranioplasty (put in a titanium plate) which would then solve all my problems. Well, problem was (after a year and a half of excruciating pain - much worse than before ) - he didn’t screw the damn thing in all the way and it started falling out, cutting into my nerves because it was moving and scraping the dura of my brain which if Laura and my wonderful doctor had not seen this, would have caused my dura to start springing leaks and ripping! HE WILL NOT GET A LETTER FROM ME - HOPKINS SHALL BE GETTING ONE FROM MY ATTORNEY!
So, this is par for the course with this insidious condition and we are both extremely lucky to have found “our” doctor. There are a lot of people who aren’t so lucky!
[QUOTE=LoriW;8024904]
Poking my damaged head in here on this one. As with Laura - I had all the same issues in getting a diagnosis and all the same doctors making you think you were crazy. There were three in particular that stand out (amongst the countless others):
1 - Told me after I showed him the definition of Chiari (my research thank you) and my MRI showing “borderline chiari malformation” (at that point it was a small herniation) - said to me and my mother - “No it couldn’t be.” Made an appointment at Hopkins and, of course, it was. Wrote him a letter advising him that his incompetence was bordering on malpractice and could have cost me my life. NEVER HEARD FROM HIM.
-
Chiari neurosurgical specialist at UVA (note: still listed on all the chiari sites as one of the top chiari doctors) - went to see him specifically to decide whether I needed surgery and to find out if I had a syrinx (cyst in my spine). Had a 2 hour MRI of my entire spine and he looked it over - said I did not, to come back and check with him in a year. I asked him if he could give me something for the pain and he told me to “go see a headache specialist - he hadn’t written a prescription in 25 years.” I did just that, found my wonderful neurologist who confirmed that I did indeed have a syrinx in my spine and further had no spinal fluid getting to my brain and surgery was necessary within 3 months! Wrote him a love letter and NEVER HEARD BACK!
-
My second surgery at Hopkins (different doctor than I saw in #1) - he said my headaches after my first surgery were because the doctor took too much bone out. His solution was to perform a cranioplasty (put in a titanium plate) which would then solve all my problems. Well, problem was (after a year and a half of excruciating pain - much worse than before ) - he didn’t screw the damn thing in all the way and it started falling out, cutting into my nerves because it was moving and scraping the dura of my brain which if Laura and my wonderful doctor had not seen this, would have caused my dura to start springing leaks and ripping! HE WILL NOT GET A LETTER FROM ME - HOPKINS SHALL BE GETTING ONE FROM MY ATTORNEY!
So, this is par for the course with this insidious condition and we are both extremely lucky to have found “our” doctor. There are a lot of people who aren’t so lucky![/QUOTE]
Oh my gosh Lori! Those sound horrible - #3!!! Can’t even explain my reaction to reading that! So glad for you that you found the amazing doc and got it fixed!
P.
Polydor, this condition has opened my eyes to the nightmare of incompetence that can surround it. I’ve seen the MRIs of post-op patients of non-Chiari specialists posted to support groups on the FB pages, asking in vexation about their continued or worsening symptoms. One very clearly to me had had a large chunk of her skull removed, but nothing done to remove or minimize the cerebellar tonsil compression. Her cranial space was just as blocked as before, her brainstem just as compressed, but now had this gaping space in the back–behind the still persistent problem. I didn’t have the heart to say anything to her; for one, I’m not a doctor, for another, I didn’t know how. (Others did gently point out the still-present compression, so she was informed.) That MRI cemented in my mind the need to go to Dr. Bolognese–I did not want to have someone screwing it up and requiring a redo.
BTW, I saw a former world specialist on Chiari nearly a year ago. Dr. Bolognese told me this doc was THE GUY for Chiari back in the 1980s. But, he’s very conservative (and, uh, 84), so in a patient like me where I don’t check all the boxes and present in what is considered typical–though Chiari can be very individual and say “eff you!” to trying to have a “typical” presentation–I get left out in the cold. Dr. B said part of my case involved politics–he still saw this pioneer of things Chiari at major events and he didn’t want to take me when the other doc had turned me away. (He jokingly said he didn’t want that doc to spit on the ground when his name was mentioned.) You don’t want to give the impression of, "Well HE may not think you’re worth operating on, but I do!
This is partially why he did the CINE MRI–it added evidence (a 100% blockage of CSF flow) that something was clearly wrong at the cerebellar tonsillar level. Then, as my headaches continued to worsen and eventually became more Chiari-typical, he had enough evidence so that if it were to come up, the doc at UCLA could look at my case, agree things changed, and agree surgery was needed. And to be fair–UCLA doc saw me in March. By the time Dr. Bolognese saw me 6mos later, I was in far worse shape.
That was another eye-opener to me: the role of specialist community politicking in patient care. Yeesh.
[QUOTE=Polydor;8024986]
Oh my gosh Lori! Those sound horrible - #3!!! Can’t even explain my reaction to reading that! So glad for you that you found the amazing doc and got it fixed!
P.[/QUOTE]
What gets me is WHY didn’t any of the radiologists see this - I had countless CT Scans and MRI’s during this time and not one of the radiologists (who are supposed to be the x-ray experts) saw that the plate wasn’t screwed in.
And even worse - this bastard wrote on the operative report that he used 12 screws and I saw with my own two eyes there were only 10 in there! Bad bad man…
I had chiari decompression as well
I had a chiari decompression surgery in 2008 when I was 17 and it was GREAT. I no longer have headaches! It took a few months post-surgery to recover (and recovery wasn’t comfortable) but I no longer experience pain but in the long run, great results! I was back in the saddle only a few weeks after surgery! Good luck. From my experiences, a good decision to have the surgery.
FABULOUS NEWS!
praise the L ord! So glad you are feeling strong and well; though , it may take a bit longer for the effects of the anesthesia the to wear off; so glad, too; that the pain is gone;:yes:
you know I;ve found that when the constant pain is gone; I feel so different that I am not sure what/ how I can move around and 
do things; I do hope you have the best helmet possible! :yes:
