Prayers to both Lauruffian and you, Lori W. I don’t know much about your illness so if you get a chance to tell us a bit about it at your next post, I’d certainly be interested. Much better to hear from people affected than read Google.
I hope both of you continue to improve each day! Thanks so much for your posts.
Here is the technical description and then I’ll give you the layperson’s version:
"Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain."
But to put it simple terms, your brain is too large for your skull, a congenital defect, and the back of the brain, the cerebellum has “tonsils” which begin to herniate into your spinal column blocking the flow of cerebral spinal fluid to flow properly up and over the brain and back down. This blockage causes a variety of symptoms, wicked headaches, balance issues, neck pain, and more. It can also cause what’s called a syrinx (like a fluid filled cyst) to form in your spine (I had that as well) which can continue to grow and literally deteriorate your spine and cause paralysis.
There are many people that may have a chiari malformation that will never know it and will never develop symptoms. There are also varying degrees if chiari, chiari 1 (which is what adults get), 2,3 & 4 which babies are born with and are MUCH more serious and life-threatening.
So there is the long and short of it. The really $hitty thing is that most doctors are unfamiliar with chiari and most of us go years without a diagnosis and suffer horrendous pain for a very long time and you also get some very uninformed doctors doing chiari surgeries who shouldn’t because they don’t know enough about it.
Laura is very lucky - she went to probably THE best chiari specialist in the country, if not the world, so she’s going to do great!
Hope that wasn’t too long winded, but it’s not an easy condition to explain and not everyone has the same symptoms aside from the crushing headaches which I always describe as the type of pain you get when you eat something too cold, like when you get a “brain freeze” except maybe 30 times a day!!
It may have been posted, but may I ask which Doctor she went to? I had just turned 18 when I had my surgery so I went to a Dr at Children’s Hospital and he was wonderful. But I still continue to have issues to this day so at some point I may need to consult with a “grown-up” Dr.
LoriW, thanks for the explanation.
As a side note, as I am sure you would agree, it is amazing what one typically ends up learning about anatomy when there is some type of anatomical defect. 
Such a challenging problem that does not sound fun at all …
[QUOTE=Bedazzle;7961017]
It may have been posted, but may I ask which Doctor she went to? I had just turned 18 when I had my surgery so I went to a Dr at Children’s Hospital and he was wonderful. But I still continue to have issues to this day so at some point I may need to consult with a “grown-up” Dr.[/QUOTE]
His name is Paolo Bolognese and he is with NSPC in Long Island, NY, phone number is (516) 300-1281. I only wish I had gone to him first but as the say, third time’s the charm!
[QUOTE=Where’sMyWhite;7961054]
LoriW, thanks for the explanation.
As a side note, as I am sure you would agree, it is amazing what one typically ends up learning about anatomy when there is some type of anatomical defect.
Such a challenging problem that does not sound fun at all …[/QUOTE]
You are welcome. What’s really scary is that I’m the one who diagnosed myself! After seeing countless neurologists who gave me ridiculous explanations, I had an MRI which showed chiari and I remember reading about it and went back to the doctor who ordered the MRI and he said, no it couldn’t be that!!
Not fun and before I had this third surgery, I’d litererally had a headache everyday for 10 years! And this is common for chiari patients!
Thanks, LoriW, for the info! That’s crazy that you had to diagnose yourself! Like on one of those TV shows!
LoriW, I’m sorry for the pain that you endured for so many years, but very thankful that you’re on the road to recovery!!
Laura and I are both lucky that Dr. B. is such an expert in this field and why she went from L.A. and I went from VA to go see him. The nurses at the hospital said they’ve never seen a doctor that has patients coming from all over the country and sometimes other countries just to see him!
Laura just posted she went for another walk all around her wing and even managed 5 stairs. Felt 100% better than yesterday - lightheadedness and queasiness vastly improved!
Has there been any word from Laurauffian or does anyone know how she is doing? I’ve been thinking about her and praying for her and just wondered if anyone has heard anything.
[QUOTE=LoriW;7961857]
Laura just posted she went for another walk all around her wing and even managed 5 stairs. Felt 100% better than yesterday - lightheadedness and queasiness vastly improved![/QUOTE]
TERRIFIC! I can’t believe she is improving so quickly! That is so, so great! Thanks again, LoriW!
I have a major Chiari headache tonight I cant wait to be decompressed by the wizard himself (Dr. Bolognese) he will make my life so much better
[QUOTE=the_other_mother;7961860]
Has there been any word from Laurauffian or does anyone know how she is doing? I’ve been thinking about her and praying for her and just wondered if anyone has heard anything.[/QUOTE]
I’ve posted quite a few updates if you look through this thread. She’s doing amazing! Feels much better already and will be getting discharged tomorrow!
[QUOTE=elmerandharriet;7961903]
I have a major Chiari headache tonight I cant wait to be decompressed by the wizard himself (Dr. Bolognese) he will make my life so much better[/QUOTE]
You need to see him. Laura and I both had our initial consultations with him via Skype! pm me if you need info on how to get the process started!
Im already accepted as a patient and I have seen Dr Henderson so I will decided between him or Dr h
Hey everyone! I can’t tell you what all your messages and jingles meant to me. I loved coming back and reading when I could (pressure, especially when lying on my back and on my incision, hurts my eyes a bit). LoriW thank you so much for keeping everyone updated!
I was discharged yesterday and am resting in the hotel for now–should be able to fly home Thursday or Friday. And man, I NEVER would have imagined even being released yesterday–those first 36 hours or so were awwwwful. the vomiting after having a skull cut open is NOT pleasant, and it was multiple times an hour (despite three meds) for 5-6 hours, at least. I have since been told that sort of nausea can happen when the dura is opened, which mine had to be. The procedure was pretty much as expected–my cerebellar tonsils were thicker than expected, so there it is, PROOF I’m thick-headed. 
Anyway the herniated portion of them was indeed pressing into my brain stem, which is very NO TOUCHY, and had completely blocked the flow of cerebral spinal fluid. He removed two “kalamata olive-sized” (size reference) portions of the tonsils from each side. When hubby asked what the doc did with them, the doc–whose sense of humor I LOVE–said "Oh, we have a cat in the operating room and we just drop it on the floor for her. :lol:
First two days were a misery of nausea, dizziness, and light-headedness, but as promised PT was there day 1 to get me sitting up and in a chair, and then even walk about 20’ of the hallway. Really though, I gotta say, day 2 I could see no way in hell I was leaving the hospital anytime soon, but day 3 was an eye opener. PT said it’s typical with Chiari patients–other PTs see us next day post op and think there’s no way we’re going home in 4-5 days–surely we’re going to a rehab center first. Then we rebound (ish) quickly.
I was kept on the stroke/brain injury wing, so I can see how they’re used to seeing much slower turnarounds. Glad to be a bright change.
I’m able to sit up and shuffle around with my cane now, though it’s weird–I feel like I could just get up and walk, but ohhhh noooo that is NOT what happens. Scared the crap out of hubby last night in the hotel when, still using my cane but not using the walls to steady myself, I lost my balance and fell to the right, tripping over his suitcase. Oops. :eek: No harm no foul, except to his heartrate. Lesson learned!
Wonderful, wonderful hubby very carefully washed my hair this morning (not an easy task! He has to hold a rolled towel over my incision while I lean over a sink and he simultaneously scrubs my hair)…then I managed to sit down for a nice bath. Now I’m cleeeeeean! And stuck indoors, but that’s okay.
I’m off the pain meds–I’m not fan of the severe constipation side effect :eek: --and actually pain levels are okay as long as I rest and keep off the incision.
Now good stuff! Already I’m seeing a difference: no sign of the pressure headaches (kind of hard to tell, as my head hurts naturally from being cut open and all, but when I cough and was vomiting the sharp pain actually went away after a few seconds as opposed to lingering for hours to days 
), my hand tremors–constantly present for over a year now–and my just recently diagnosed sleep apnea BOTH seem to have either been radically reduced or have disappeared completely. Hubby, sharing a bed with me and all, is most shocked by the apnea. Yes, I still lightly snore now, but nothing like what he was hearing before. It’s like a switch was flipped, and in a way, it was.
I still get the ants crawling up my scalp feeling and pins and needles in my limbs, but WHATever. Those are annoying and ignorable. The headaches alone were hell.
What I’m most hoping has also changed (and only time will tell) is my spasticity with exercise. It took me a while to realize this wasn’t normal. What would happen is I’d walk up a flight of stairs, and at some point (usually around stair 10, could be more/less depending on the day) my legs just turned to lead. They didn’t hurt, they just…seized up. I had to stop and rest not to catch my breath, but to get them to let go. Then back on up I went. I noticed similar effects walking the dog, but in my calves. Riding is a little easier–well, at a walk. Posting wasn’t happening, heh. But then I noticed the spasticity in my forearms as my lazy boy needs constant “Hey, I’m here, wake up and pay attention” signals.
But again if the headaches are gone…with the tremors and apnea…well, I’m tearing up already thinking about it.
I can’t wait to see my boys, my mom, and then my herd. <3 (Well, and the dog, and cat, and my snakes… :lol: ) But I have an AMAZING friend who has been working my two horses for me while I’m gone and sending me these lovely photos to cheer me up. So of course, I will share those pics with you. <3
It had poured rain and the rings were saturated, so she lunged them on the first day:
He’s got a lazy mouth, but a good work ethic
Fuzzball mini prefers cantering about–amazing since her favorite gaits are “whoa” and “eat”
Sent this the day of my surgery–got it just before being knocked out–with the caption "feel better mommy! I teared up, I admit it.
Sent this one the same day. What a face! I shared this photo with her–a Wells Fargo pony I brought with me as a nighttime cuddle because he is marked identically to my Tril, minus the snip.
Got a pic of lazy furbutt with all four feet off the ground!
So, yeah. That meant a lot to me. Still means a lot.
Now, for the curious, I have pics of my war wounds. Being a science teacher and all, I love this stuff, but being a snake lover, I recognize that I am, in fact, weird.
Incision, one day post op
And this morning (man am I glad my hair grows fast)
Now my wrists. Explanation: the anesthesiologist used a special thing called an “a-line” that they inserted directly into my wrist arteries (mercifully AFTER I was out) so she could monitor my blood pressure with every heartbeat, rather than a large, awkward, intermittent pressure cuff. Now, it didn’t hurt at the time, but…well, once it came off, the rainbow appeared. I realized the heparin shots I got in the hospital to prevent clots probably added to the rainbow.
Wanna see? 'Cause it’s cool to the weird?
Right wrist day 1
Right wrist today (and it’s actually way uglier than this)
Left wrist day 1
(No good after pic at the moment but it’s not that changed)
And before I hit “Post,” I’ll share this pic of hubby and I at Manhassat Bay the day before I went in. I confess I have been laughing at his fourth generation native Californian thin skin (I grew up in Indiana, family in Ohio, etc.). He has been whimpering every time going outside into the cold–jokingly, but decidedly half-jokingly–exclaiming “WHY DO PEOPLE LIVE HERE?!” and then here at Manhassat Bay, he was like…“THE OCEAN IS NOT SUPPOSED TO LOOK LIKE THIS! Tell them there’s something wrong with their ocean!” (Yes, I know, technically it’s not the ocean, but you follow.)
Anyway, here we are, all cute and cold and stuff.
D’aww
“THE OCEAN IS NOT SUPPOSED TO LOOK LIKE THIS!” :lol:
Now I’m stepping off because my head is starting to hurt–actually feels like a crazy tight ponytail. Hubby the amazing is going to rub me now.
Love you all so much, and thank you all so much.
I’m so glad you’re doing so well, tough lady! Much love to you and your family, heal up quick! :yes:
Excellent!! :yes:
Glad to hear healing seems to be going well.
By submitting your email, you agree to our Terms of Service and Privacy Policy. You may also receive promotional emails from The Chronicle of the Horse. You can opt out at any time.
For Customers
Company
Terms of Use
