Relax, it's not brain surgery! Oh, wait, yes it is...

[Lauruffian]

I had a follow up with one of the world experts on Chiari malformation (a herniation of the bottom part of the brain into the spinal canal–causes a wiiiiiiide range of neurological symptoms, as well as hellacious headaches, pressure, eye pain, and a whole lot more), and based on my most recent MRI and symptom progression, he is recommending surgery. Brain surgery. EEK. The herniation has significantly blocked the flow of cerebral spinal fluid at the base of my skull, like a cork in a wine bottle, and the lower part of the brain (the tonsils) is leaning on the no-touchy brain stem.

I will have to fly out to New York for this, so that’s another massive headache entirely. Insurance is going to be FUN.

He cannot guarantee it will help all of my symptoms, as neurological issues are bizarre and unpredictable. But, he is confident it will greatly reduce my severe headaches, eye pain, and the feeling of pressure at the base of my skull. The dizziness, balance issues, limb tingling and numbness, tremors, hyperreflexia, joint and body aches, heart palpitations, vision issues, fatigue…a reduction (or erasure) of these would just be icing on the cake.

But still… :eek: Especially considering the procedure he recommends involves cutting out the herniated portion of the brain. He said it has not function, BUT STILL!

There are a few other COTHers with Chiari–at least one of which is getting surgery–so I know I’m not alone. My mind has been whirring ever since that appointment two days ago.

I asked the specialist flat out about riding my horse, which I haven’t done for a few months due to muscle weakness, numbness, spasticity, and balance issues. He recommended the same for both pre and post surgery for me–leisurely, walking trail rides only. (And that’s him knowing I’m a somewhat skilled rider–otherwise he would tell a nonrider not to get on at all). :ambivalence: I cannot risk head injury or being bounced around much. This is both terrific news–I can get on him again!–and heartbreaking. I’m still processing the reality that brain surgery is in my future–this is just another piece that’s terribly hard to swallow. Is it really…never again?

There’s no knowing. For now, I’m grateful just to be able to get back on him, when I have the strength.

[Laurierace]

I think the chances of it really being never again are greater if you don’t get the surgery than if you do. Doctors will tell you never to ride again if you get a hangnail, the fact that he is saying yes you can ride, just take it easy is golden.

I was to the point where I was ready to start amputating body parts with a rusty butter knife before my hip surgery in March. I am still basking in the cortisone glow at the moment and feel great so the surgery on my other hip on Wednesday is a lot harder to to accept but I am going for it. You’ll be better off for it and so will I and we will both get back on our horses.

[Toadie_s_mom]

I know how disappointing the riding/reduced riding recommendation is. Not saying you’ll ever get used to it, but it will become more acceptable. After not being sure I’d ever be on a horse again, I’m now taking therapeutic riding lessons and couldn’t be happier! Not sure if it’s more beneficial physically, or mentally but either way I’m thrilled to be riding in any capacity.

I think most Drs are programmed to give you the worst case scenario, so I’ll be wishing for the surgery to relieve all your ailments! I am doing WAY better than predicted.

[Puddin_Pie]

Lauruffian: Good luck on your surgery. My husband had brain surgery 8 years ago for a brain tumor. So while it was a different surgery, I certainly have a huge amount of empathy for you going through this. And if you are traveling for surgery, I have to assume that you are going to an awesome specialist who will hopefully take the best of care of you for a great recovery. All the best!

[Lauruffian]

I’m sorry I didn’t reply to this sooner–the week’s been a bit overwhelming. Surgery is set for January 13…eek!

Laurierace, your first sentence really resonated with me. “I think the chances of it really being never again are greater if you don’t get the surgery than if you do.”

You’re right…you’re absolutely right. It hadn’t occurred to me that this was the case, but it is. It gives me even more hope that this surgery will return a little normalcy to my life. Thank you.

Toadie’sMom, you’re right–docs do usually go with the worst-case scenario, which I suppose is better than overstating the opposite. Whatever my new equestrian life is, I’ll adapt. I’m hoping I can talk to the doc about the benefits of riding and how therapeutic it is and get an okay to do a little posting trot and such to get a little more conditioned than walking-only. With my back surgeries, it’s pretty much all I’ve been doing, anyway.

PuddinPie, sorry to hear your husband had to go through brain surgery as well–how is he doing now? Did the surgery provide significant relief? Was the tumor completely removed?

Yes, I’m traveling to an awesome specialist because all the locals just did not know enough about the condition. It’s rare, but worse, what little a lot of nonspecialist docs know of it is outdated. They argued about the size of my herniation, when for at least a decade–if not two or three–it’s been proven herniation size is not a reliable indicator of severity of the condition. I compare it to a clogged drain–you can shove something like, oh, a toothbrush down the drain (like my son did) and the water will surprisingly still flow because the brush is long and skinny. There’s still room for the water to flow around it. But, you can also have a big chunk of, oh, an entire bar of soap (boy #2–they both went through drain fascination stages) wedged down in there, it may not go far, but it can plug the drain completely. In my case, my herniation may not go very far into my spinal canal, but it has completely plugged the flow of cerebral spinal fluid. FWIW, this doc did point to my most recent MRI and say that now, definitively, any doc who knows anything about the condition would be able to look at that MRI and say I clearly have a problematic Chiari malformation.

The specialist I’m going to is considered one of the best in the world for treating this condition and has a golden reputation among the Chiari community. While he said I could have a local doc operate on me, I decided I wanted someone who knows this condition inside and out, and who does these surgeries all the time–not a few each year.

If you’re curious, my most recent blog post goes into more detail about the doctor, his findings, and the impending surgery. My horses also make an appearance toward the end, including a pic of me in a Barefoot Cheyanne saddle I have out on trial. I love that I was able to get on him again, even for just 20min of walking around.

[Laurierace]

Many jingles for a successful surgery and easy recovery. Not that it compares but my hip surgery was on Wednesday and I am doing really well so far.

[Lauruffian]

Thanks Laurie! And glad to hear your hip surgery went well and your recovery is so far, so good! Jingles that pattern continues.

[arapaloosa_lady]

Ask your surgeon how many years of studying he did before he even got to touch a scalpel during brain surgery; that makes me feel better about their expertise. (college + med school + residency + at least one fellowship)

If you think this will significantly improve your quality of life, and the risks are worth it, then I wish you the best of luck. I, and others I know, have disregarded the warnings about risks for “simple surgeries” like vasectomies & root canals & been very upset when a serious complication occurred. It’s very difficult to make such a serious decision. I hope that everything goes well for you & is fixed perfectly.

Random fyi: did you know a huge number of cavalier king charles spaniels have chiari-like malformation? So, if you want a fluffy one to empathize with, they make fantastic lap-warmer pups.

[Parrotnutz]

[QUOTE=arapaloosa_lady;7871396]
Ask your surgeon how many years of studying he did before he even got to touch a scalpel during brain surgery; that makes me feel better about their expertise. (college + med school + residency + at least one fellowship)

If you think this will significantly improve your quality of life, and the risks are worth it, then I wish you the best of luck. I, and others I know, have disregarded the warnings about risks for “simple surgeries” like vasectomies & root canals & been very upset when a serious complication occurred. It’s very difficult to make such a serious decision. I hope that everything goes well for you & is fixed perfectly.

Random fyi: did you know a huge number of cavalier king charles spaniels have chiari-like malformation? So, if you want a fluffy one to empathize with, they make fantastic lap-warmer pups.[/QUOTE]
I have a cavalier King Charles Spaniel who has Chiari, and she is on gabapentin and omeprazole for it. Surgery is an option for some who can afford all the expenses involved. While not a cure it stops the progression and alleviates symptoms in some. Perhaps reading up on it on cavalierhealth.org may help your nervousness. Paws and fingers will be crossed for you!

[jen-s]

I handle the research for our spina bifida multidisciplinary clinic and many of our patients also have Chiari malformations. We do a lot of operations (Duke), but most on kiddos. It’s less common to have to operate (from our perspective) on adults although unlike most pediatrics clinics, our patients never “graduate.” They are with us from birth until.

[HPFarmette]

Are you going to NYC? Or closer to me in Western NY? Moral support offered here, I’ve had brain surgery.

[Lauruffian]

HPFarmette, I’ll be east of NYC in Long Island. Thank you for the moral support.

Wicked nasty headache right now with bad pressure and bloodshot eyes, so I’m not much to respond to others’ kind words. (Aw, King Charles spaniels are so cute!)

But I wanted to provide a great link on Chiari. It seems to either be an issue almost from birth in kids, or seems to “wake up” and become an issure around something like 25-40. At 41, I’m just outside that range, though symptoms first started really being a PITA at 38 and went to crap just after turning 40.

Ugh stupid headache. I guess it’s good confirmation why I’m getting this.

Website:
www.conquerchiari.org

[Laurierace]

I remember years ago watching a show on Discovery Health about a teenage girl with headaches that went undiagnosed for so long she ended up in a wheelchair when not confined to bed. Turned out to be chiari and she had the surgery and was back to being a normal teen. If I remember correctly they hung her from a doorway somehow and that took the pressure off her brainstem which gave them an idea what the problem was. Hope your surgery is as successful as hers.

[Lauruffian]

Ha, Laurie! Her doctor that appeared on that show is my surgeon! She had a connective tissue disorder (Ehlers-Danlos) causing craniocervical instability in combination with her Chiari, which made her life miserable. Sometimes Chiari is seen in patients with EDS–the disorder means the connective tissues meant to hold the brain up where it should be are loose, and it sags down. CCI has been ruled out in me, though, mercifully…so I won’t need that kind of extensive surgery. (She had to have a fusion in combination with the decompression.)

Here’s the episode you mentioned, just focusing on her part (22min). My surgeon makes an appearance around the 14min mark:
https://www.youtube.com/watch?v=RcKfgBqU0H0

[Laurierace]

Great! Sounds like you are in good hands. When is the big day?

[AmarachAcres]

Sending good vibes your way!!

I was told to never ride again after back surgery. I told the doctor he could say “never again” and I’d be on a horse in a month, or he could give me a valid timeline. He gave me a timeline.

[Laurierace]

[QUOTE=AmarachAcres;7885258]
Sending good vibes your way!!

I was told to never ride again after back surgery. I told the doctor he could say “never again” and I’d be on a horse in a month, or he could give me a valid timeline. He gave me a timeline.[/QUOTE]

I love that!

[HPFarmette]

Thinking of you. My surgery was for an aneurysm that had not burst. So I am very lucky. I’m just fine now. Wishing you the best.

[oliverreed]

Thinking of you, Lauruffian. I am SO glad there is something they can do for you!! As Zu Zu would say, lots of jingles and AO!!

[Lauruffian]

Sorry I missed that post Laurierace–surgery is set for January 13, assuming insurance plays nice. Or at least, not nasty. I got a rejection letter in the mail today from my medical group, though I have no idea why insurance tried to go with them when I’m self-referring (using my POS option rather than HMO). They said I didn’t need to go to the expert/out of network guy because it wasn’t an emergency and I could be seen by a local neurosurgery group–the same one that I went to, twice, and pooh-poohed me away without investigating further. :::headdesk::: I called Dr. B’s surgical coordinator and she was stunned–my insurance never returned her call. They just went straight to my medical group, who of course said NOPE. I of course say DON’T CARE. If someone is “cracking open my skull” (those are the words he used in my consult, ugh) and messing with what’s inside because of a rare condition, I want it to be someone who does it, a LOT, and has a rep of doing it really well.

AmarachAcres–love it! May need to use that in my near future.

HPFarmette, yikes that is scary! Glad they caught it in time. And how wonderful that you’re doing so well now!

oliverreed–yes, so glad there’s something! But I have to ask–what’s AO? I just know it as “amateur owner,” which in fact I am, but I don’t think that’s the meaning you were going for.

A kind friend set up a GoFundMe account for me. I’m very touched, and greatly humbled. There’s a link to it in my most recent blog post (and my blog goes into more detail on my condition and the surgery itself as well). My blog is in my signature; here’s a direct link to the latest blog post.

Thanks again everyone. Except for being a bit fatigued, today was actually a decent day. Here’s hoping lots of genuinely good days are in my future!