What an ordeal, so sorry. Glad you have a great partner to help. We are not suppose to get rain in So Cal for a while.
Glad it is over and you are already feeling better.
Have a safe trip back.
So glad to hear from you! Thanks for sharing the pics! I didn’t want to, but couldn’t resist the incision and wrist pictures. Your hubby is the best!
I’m so happy for you, and for LoriW. Hugs and jingles continue.
LoriW, thank you for explaining exactly what the Chiari is, and the symptoms. I wouldn’t be surprised if it gave some people answers about symptoms they have, or their loved ones.
JanM, LoriW is very correct that this is a bizarrely misunderstood, underdiagnosed, dismissed, and generally pooh-poohed condition in the general medical community. I can’t even begin to describe the long list of heartache, disappointment, and confusion I went through trying to figure out what was wrong with me. Then, with the support of the Chiari community, becoming certain what was wrong and trying to stick to my guns without offending fragile medical egos. They just don’t know, and it is outright scary how much they don’t know, and how much they confidently, kindly-yet-condescendingly “correct” you. At the behest of another of Dr. Bolognese’s patients who’d traveled a similar path, I sent all of my MRIs and paperwork to him (intake form alone was 19 pages) and it began. I was scared about money, insurance, traveling, going against almost every doctor I have (only my rheumatologist was excited for me, and my PCP hesitantly supportive)…but the headaches were getting so much worse, and the evidence getting so much stronger (the sleep apnea diagnosis out of nowhere in particular), and Dr. B has THE reputation in this area–I had to.
Another good info site I like to refer people to is here:
www.conquerchiari.org
So glad to hear continuing good news!
Rebecca
What’s really scary, as Laura stated, is the lack of knowledge in the medical community about chiari and you start to think you’re crazy and/or a hypochondriac. But, as we both came to realize, you have to be your own advocate and push and push until you get to the right doctors who understand enough about it, and trust me, they are few and far between. I went to a supposed chiari expert, listed on all the sites as an expert and he totally f’ed up my second surgery and he was at Hopkins! So hopefully, by spreading awareness, we can help others.
I actually am part of a short documentary about OTTBS and chiari that happened by chance by the lovely woman who is making the big doc called Back on Track. We were accepted and premiered at the Napa Valley Film Festival in November so hopefully that will kill two birds with one stone as they say, help our wonderful OTTBS and spread the word about Chiari!http://http://www.backontrackdocumentary.com/albie/
Oh, so so happy to hear from you, Lauruffian! Sounds like you are on the road to recovery which is fantastic…and you’ve got cool pictures. And hey, chicks dig scars!:lol: Mr. CC laughed out loud at your husband’s comments. I think I’d feel the same way! Keep us updated as you move toward totally recovery. Safe flight home–your healing will speed up with the love of your boys and critters. I know I always heal better when I can at least touch and smell a horse!
“THE OCEAN IS NOT SUPPOSED TO LOOK LIKE THIS!” Love it. SO glad you are recovering, many, many jingles for a complete and rapid return to wellness.
Wonderful!!! I’m SO GLAD for you!!!
Hugs.
HOOOORAY!!!
I’m so glad to hear that things are going well for both of you. Hugs to all.
Good for you and have a safe trip home!
Is getting back to the classroom too much to hope for?
Bristol Bay, someone asked me that earlier on my FB so I’ll just C&P my reply if you don’t mind.
Right now there is no knowing, and I knew that going in. Dr. B said I will see 100% of what all my symptom improvement/positive changes will be in about a year’s time, but 90% at about 6-9mos. He said going in the only thing he could guarantee helping were the headaches–everything else will be icing on the cake. I will be very, very careful about going back to work. (Among other things, I’m a really big liability.) As of February 2 I will be officially medically retired and placed on the 39-month rehire list, meaning, if somehow I snap back and can go back to teaching in the next 39mos I will be put at the top of the district rehire list. Knowing how much time that is, I am not pushing myself and am being encouraged by everyone to not push.
Chiari is incurable. Treatable via surgery, but incurable. Nerve damage can rapidly become permanent, and I almost certainly have some permanent damage … just … what? We shall see. I’m so elated over the changes, I’m not much caring about the lonnnnng list of everything else.
What’s bright is I feel like maybe now I can at least volunteer and live my life off the couch just a little bit more. <3
So happy for you Laura! Have a safe trip home!
P.
Oh my gosh I missed this whole thing!
So glad you are feeling some relief, that the surgery went so well.
Rest up and have a very safe and gentle trip home.
Sounds like a great outcome! Mega-jingles for continued improvement!
Squee to hear you are feeling better!
Have a good, safe trip home, and update us soon! Say hi to all the snakies for me!
Hey all! I have posted a couple updates to my GoFundMe site and thought I’d just C&P here to keep you updated as well. (Actually, I think I may C&P these two posts to my blog as well.)
This update is from January 22:
Now, on to what I’ve been really eager to get to and I’m sure you’re most eager to hear: the immediate, noticeable effects of the brain surgery.
Within hours of being back in the hotel room, I noticed something: my hand tremors were gone. Not reduced, GONE. For about the last 2 years, I noticed my hands would shake, particularly after movement. Walking around, hold out hands, tremor. Initially, they came and went. I then chalked it up to being too stressed in the rush of getting ready in the morning. Then, the tremors just decided to stick around. Starting in February 2014, the tremor in the left hand was consistently worse and longer. August 2014, during a tandem walk (heel-to-toe; you see it used in DUI tests) portion of a neurological exam, my hands started severely shaking because, as my neurologist explained, I was concentrating. WTF?
I called these tremors my stupid parlor trick–it was the one thing I could do, every time, to show people a symptom when they asked how my condition affected me. Some days they were awful, shooting up my arms and even into my voice, but most of the time they were just there, annoying me.
But when I woke up from surgery, they were gone. GONE.
I still test myself, holding up my arms in the way that always triggered the tremors, and nothing. Gone. This was the first thing that made me cry, and still does.
Also immediately gone was the sleep apnea I’d just been diagnosed with in September 2014. Heck, I’ve only had the CPAP 2mos. Brian repeatedly expressed stunned surprise over this one. Yes, I still lightly snore (have ever since my babies), but the deep choking sounds and gasping for air? Gone.
(Gonna be interesting explaining that to the doctor prescribing the machine and to my insurance, who monitors my use of it.)
I previously described how the headaches have changed, and it is still hard to get a good solid grasp of how much they have changed. My head hurts. A lot of it is occasional sharp twinges, likely from peeved nerves who’d been cut/jostled/harassed during the procedure. My eyes ache if I lie flat for long, but well, that’s adding pressure to a the swollen incision area, so that’s understandable. I feel tension at the back of my head, but that’s most likely from swelling and things being pulled back as I was stitched. But the whole-head, vice-grip, ruin the rest of my day (if not the next few days) pain? Not a sign of it. Not a single hint. Gone? Merciful heavens, I hope.
I’m eager in the months ahead to see if my other neurological abnormalities change. Dr. B told me he could only guarantee relief from the headaches; everything else was icing on the cake. Already that includes my tremors and apnea, but I’m curious about these:
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Positive Rhomberg. If I stand with my eyes closed feet together, I cannot balance myself and start to fall. Resultingly, walking through a dark hallway can be a bit like being a pin ball machine–I’ve had to keep my hand on the wall as I go.
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Positive Hoffman’s reflex/Hyperreflexia. Flicking a finger a certain way causes my thumb to vibrate, a sign of hyperactive reflexes. I have it in both hands, but the hyperreflexia is more severe and generalized on my right side. In the exam just before I flew out here, it was very apparent–tap the left knee, twitch. Tap the right knee, get out of the way.
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Loss of temperature sensation. About a year ago, we noted this in my lower right leg–freaked me out a bit, actually. Touch me with an ice cube or very hot water, and I know you’re touching me, but can’t tell the temperature. This is a big red flag to docs because it indicates a spinal cord (or higher) issue–local nerves do not control temperature sensitivity. Incidentally, Bri did test this a few days after my surgery, and not only did I feel the cold ice cube–the cold feeling lingered for a while after. That is a very good sign.
As this is one symptom that tended to come and go, be better and be worse some days, I’m eager to see if it’s come and GONE.
But the main remaining symptom I’m most hopeful is included in that icing on my headache-gone cake is muscle spasticity. I want to be able to exercise again, however mildly, but I can’t with my thighs seizing up after a couple stairs, or my calves seizing up two minutes into a walk, or my forearms seizing up just currycombing my horse. But MAN I really want to be able to move again.
Now! Well, what now? I saw Dr. Bolognese for a post-surgical six days later and learned the following:
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It will take a year to see exactly how much benefit I gained from this surgery, but he said I will see 90% of the changes by 6mos.
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The tremors present-then-absent are attributed to how my cerebellar tonsils were wrapped around the portion of my brain stem that control the arms. He did stress this is a very difficult location to reach; a centimeter here or there, and he could have easily killed me. I get the impression there are few docs that would have been willing to take on that challenge and succeed with the level of art and skill he displayed.
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He also was not surprised the apnea was gone, and was hopeful for me that my severe fatigue will alleviate as I can get some naturally restful sleep for the first time in over a year.
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Dr. B closed my incision himself (good, since the plastic surgeon he sometimes uses in more complicated cases charged a fellow patient six figures!); everything is dissolvable except my top and bottom stitch, which my PCP can remove.
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I can shower/get the incision wet after 2 weeks (ugh); complete immersion, like swimming, will be a good month or so.
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No lifting, reaching up, pushing anything more than 5lbs. That means grocery shopping carts (!!), getting things down from shelves, gallons of milk…aw crap, just realized it’s grooming anything above Trilogy’s shoulder too.
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I will start on PT immediately when I get home. Focus, like with my back surgeries, is core strengthening and range of motion.
Now…the big question is one he cannot answer, and I know it. Since I probably have a connective tissue disorder–I really should get genetic testing to confirm this–is there a risk of repeat surgeries and (what I dread) cervical fusion? There is no knowing. All we can do is monitor my cranio-cervical junction and watch for any sign of instability.
Here’s the bummer. Chiari is incurable. Treatable, but incurable. This surgery has already provided massive relief and more than I’d hoped for, but I do need to stress it almost certainly won’t erase all of my long list of symptoms. Nerves are too freakin’ sensitive, and once damage occurs, it can rapidly become permanent. Not always, but often. Heck, I have permanent nerve damage from the massive herniations that led to my back surgeries, and I’m very fine with them because it’s more than a fair trade to what I was living with before. Painless but annoying muscle twitches along the outside of my left leg? SURE, I’ll take that over being completely immobilized.
So, in the next year, we will learn what and how much remains damaged, and what bounces back. And I can say right now, if it’s just the headaches, tremors, and apnea that are gone, that is MORE than a fair trade for everything else sticking around. I do get the funky feeling of ants-crawling up and down my head and arms still, but seriously…FINE. No pain, no interference with function, just weird. The brain fog, cognitive errors, and sensory overload are maddening and annoying, but intermittent…FINE.
I can live with all those and their similar minor symptom companions. I can live being different, but functional.
I can LIVE.
And here is most of the update I posted yesterday (January 27):
Home.
Brian and I had our uneventful flight home Friday, woke up two groggy boys at 1am to hug and kiss, and crawled into bed shortly after. A few short hours later, the pair of them blasted into our bedroom to crawl in bed with us for a snuggly reunion. (Well, bouncy, noisy, snuggly reunion.)
Since being home, I find myself wanting to Do! Things!, then rapidly being reminded I am still in recovery. I function well, then need a hard nap. (Very hard–yesterday’s was nearly three hours, today’s over two hours, during which at one point I thought I was on the plane home.)
I’m wobbly but manage without the cane at home because there are plenty of walls, pieces of furniture, etc. to balance me in a wobbly moment. That doesn’t stop my 5yro from chastising me if he doesn’t see me using it–“Mom, where’s your candy cane?” he asks. Heh. So, I’m using it just a little bit more when he’s around.
My 8yro is a little weirded out by my scar, but is clearly very happy to have me home. Now we swing in to the home routine again, with some modifications, and I’m back to reading Harry Potter books to him at bedtime (we just started The Prisoner of Azkaban).
Regardless, though, there is no question–NO question–that going cross-country to see Dr. Bolognese and have this world expert do my operation was the right decision. Absolutely no question, not for me or Brian, who in fact said if we’re paying for it for the next few decades, it’s worth it.
This is where I will attempt, and no doubt fail spectacularly, to express gratitude for the outpouring of kindness we are receiving from so many different aspects of our lives. For one, Brian’s work has set up a dinner schedule so that for the two weeks my mom was watching the boys. plus the first two weeks after my return home, we don’t have to worry about cooking–which, I’m realizing, also means I don’t have to worry much about grocery shopping or kitchen cleaning. Our first full day home, I was thinking (worrying) through my exhaustion about lunch/dinner, and I realized–there were some leftovers from the meals in the fridge. There was plenty for everyone, for both meals. That moment was yet another time when the tears came, for all the best reasons.
I wasn’t sure I was up to driving the boys to school and we were tying to figure out how that would work…and then the adult daughter of a dear friend called me and volunteered herself. All this week she’s driving the boys to school, with me in the passenger seat, and has offered to take me to my doctor appointment to get stitches out Thursday if I need. (I’m hoping I can manage that brief little drive myself by then.)
I miss my horses so, but right now the barn is incredibly unsafe for me. The uneven ground alone is a risk even with my cane, so leading a horse, grooming them, mucking stalls, feeding–all of that is pretty far out of my reach at the moment. And so–yet another friend has been lovingly tending to my horses on a regular schedule, grooming them, bathing them, exercising them (she got Tril to jump!), all the while sending photos and even a daily diary of their adventures. Again, it brings tears.
I’m so overwhelmed with gratitude, I feel a strange futility trying to express it, because my expression is vastly disproportionate to what we are being given. (But I still keep trying.) This leads me to a strange place: I am learning to breathe deep and accept it. Accept the love, the friendship, the generosity, the kindness, for exactly what they are: love, friendship, generosity, kindness.
And…yet once more, thank you.
I bought some special t-shirts and had to get these special family pictures.
