This is courtesy of the Brain and Spine Foundation Online out of the UK. It's good info, except we have to remember that every doctor seems to type Chiari differently. Type II doesn't necessarily mean Arnold Chiari in the states. I think. The doctors always confuse me with this one or at least the ones who even know what a Chiari Malformation is do.
Tomorrow we see the neurosurgeon or, at least, one of his cronies. If its the Nurse Practitioner who didn't know she couldn't write a valid narcotic prescription and signed the order to have my husband released after only 16 hours after surgery, someone will have to keep me from punching her in the nose. My husband is the one who threatens to punch the surgeon in the nose because he wasn't honest about the pain during recovery. But I'm going to have words with the NP... strong, effective words, like either reschedule our appointment or get me someone else as I am firing you. FIRED.
16 hours... I'm still pissed. Had I not had the wherewithall and not been well read, my husband would have died. Had I not helped a friend through nursing school by studying with her (and maybe doing her homework...maybe), I would have completely fallen short on aftercare. And it would have been nice if someone gave the care provider a clue about the intensity. Thanks. Thanks a lot.
This is why I put up a stink. Sixteen hours is not long enough. We went to ER because he was dehydrated and possibly had meningitis and not enough antibiotic. Thanks. Was it the insurance company? Maybe. Was it to free up a bed in the ICU without taking one up on the floor? Maybe.
I'm afraid good patient care is dead and we should have nursing skills like our great-great-ancestors. Someone needs to practice medicine, might as well be us. Who is up for self-stitching courses? Midwifery? Something.
I never realized I was a corporation until now. Mom to an aspie married to a hubby with Arnold Chiari. A proud socialist liberal, wild views, wild posts, sometimes boring, sometimes offensive, but always real.
Showing posts with label neuro-surgery. Show all posts
Showing posts with label neuro-surgery. Show all posts
Thursday, June 2, 2011
Thursday, May 5, 2011
The Pooping Brain
We are at the two week mark. On the 19th, my husband gets to have life-saving, or perhaps quality of life-saving surgery to fix the issue of his hind-brain pooping itself into his spinal canal, mostly. Who knew that 7 months ago, when I started this absurd blog to add more comedy into our lives that it would sorta sum up our family's biggest issue since the whole Cape School District went all Lifetime movie on us?
The greatest thing about my husband's rare, congenital medical condition is that its a rare congenital medical condition. Most doctors only read about it in text books. Google has only 381,000 results when you search the term Chiari Malformation. To give an comparison, Cancer garners 345,000,000 hits. Specific cancers results are still in the millions. If you google my husband's specific for of Chiari there are a meager 7,690 hits.
Trying to explain the whole kit and caboodle to people is difficult. My husband doesn't look sick. He doesn't sound sick. Unless you live with him, you won't notice that he has trouble finding the right words to express his thoughts and slurs them ever so slightly. You don't realize that if he lays his head back too far, he sorta just passes out. You don't see him in moments of dizziness or mental fogs. And he won't tell you about the pain that makes the simplest things difficult-- like getting out of bed or getting out of the car. The symptoms of Chiari Malformations are subtle and most cases can be managed non-surgically, except with the type that is progressive-- his type. That's the kind normally discovered during autopsy.
I'm not sure if the rareness is because its uncommon or that it's subtly means doctors miss it. It's only diagnosed by MRI, ya know, where they see the brain kinda in the wrong place. The way its diagnosed means that before MRI, you were kinda outta luck and therefore, studies on live patients was near impossible. On top of this, there is no recognized or accepted course of treatment...or rather, there is no particular protocol for treatment. Thus, treatment recommendations can vary widely from doctor to doctor.
It gets better: Of patients that have surgery, only 53% are successful and don't need additional surgeries. The rest need surgeries to fine tune or add to the original surgery. This is neither astounding or comforting, except that the surgery will keep my husband's brain from killing him at worst and destroying his neurological function at best.
The one thing that I can say is that if you have a rare condition, every doctor, nurse and tech that treats you gets a medical boner. My husband is officially a rockstar patient that has essentially livened up medical careers of a dozen or so people in the medical field. This is not a bad side-effect of his condition. It's actually reassuring that he is on the mind of everyone on his treatment team-- from his internist to his neurosurgeon, everyone is on the same page. Normally coordination of care is something a patient has to advocate for himself, but not in my husband's case. The medical world of slower, lower Delaware is falling all over him.
Even the kid's neurologist went the extra mile with us at my boy's last med check. Dr. Genius-Awesome-Pants took time out to discuss my husband's surgery and reassure us everything would be a-okay. I know that if I have a question and can't get in touch with any other doctor, Dr. Genius-Awesome-Pants will be there to help.
His words helped the other day:
Not only was it important for the kid to hear, it meant a lot for us parents. Of course we are worried. It's not like getting your tonsils out. I fell in love with my husband's brain, so I don't want it to change. I just want him to live, have a quality life without pain, and live happily ever after. I want to laugh every time he uses brain damage as an excuse for doing something stupid, without the "what if" factor. I don't want his brain to poop out of his skull anymore.
We have two weeks until the surgery. We have a world of support and are busy making the preparations for all scenarios. My sister is coming Monday so I can breath a little easier. I can run away when I need to, I can have support when I've calmed everyone's fears.
Two more weeks until my husband becomes a "zipperhead".
I am updating this to add my husband's actual zipperhead scar. Please feel free to share this image with others to spread Chiari Awareness. This was my purpose in writing this post, along with processing this surprise that turned our family inside out.
His scar is smaller and not zipper-like at all. I don't know if it was done endoscopicly or if my husband's skin was more pliable due to his dramatic weight loss. I do know that he has sutures underneath his skin that extend about eight inches. These have not dissolved yet, so he is still healing and recovering. Life with Chiari is certainly different, but at least it is life. Here is Dr. Sugarman's handy-work:
If you'd like to use you either photo in your own blog, share it with friends and family or show to anyone else you think is fabulous or anyone needing an awareness education, feel free to distribute, but please, no alterations.
The greatest thing about my husband's rare, congenital medical condition is that its a rare congenital medical condition. Most doctors only read about it in text books. Google has only 381,000 results when you search the term Chiari Malformation. To give an comparison, Cancer garners 345,000,000 hits. Specific cancers results are still in the millions. If you google my husband's specific for of Chiari there are a meager 7,690 hits.Trying to explain the whole kit and caboodle to people is difficult. My husband doesn't look sick. He doesn't sound sick. Unless you live with him, you won't notice that he has trouble finding the right words to express his thoughts and slurs them ever so slightly. You don't realize that if he lays his head back too far, he sorta just passes out. You don't see him in moments of dizziness or mental fogs. And he won't tell you about the pain that makes the simplest things difficult-- like getting out of bed or getting out of the car. The symptoms of Chiari Malformations are subtle and most cases can be managed non-surgically, except with the type that is progressive-- his type. That's the kind normally discovered during autopsy.
I'm not sure if the rareness is because its uncommon or that it's subtly means doctors miss it. It's only diagnosed by MRI, ya know, where they see the brain kinda in the wrong place. The way its diagnosed means that before MRI, you were kinda outta luck and therefore, studies on live patients was near impossible. On top of this, there is no recognized or accepted course of treatment...or rather, there is no particular protocol for treatment. Thus, treatment recommendations can vary widely from doctor to doctor.
It gets better: Of patients that have surgery, only 53% are successful and don't need additional surgeries. The rest need surgeries to fine tune or add to the original surgery. This is neither astounding or comforting, except that the surgery will keep my husband's brain from killing him at worst and destroying his neurological function at best.
The one thing that I can say is that if you have a rare condition, every doctor, nurse and tech that treats you gets a medical boner. My husband is officially a rockstar patient that has essentially livened up medical careers of a dozen or so people in the medical field. This is not a bad side-effect of his condition. It's actually reassuring that he is on the mind of everyone on his treatment team-- from his internist to his neurosurgeon, everyone is on the same page. Normally coordination of care is something a patient has to advocate for himself, but not in my husband's case. The medical world of slower, lower Delaware is falling all over him.
Even the kid's neurologist went the extra mile with us at my boy's last med check. Dr. Genius-Awesome-Pants took time out to discuss my husband's surgery and reassure us everything would be a-okay. I know that if I have a question and can't get in touch with any other doctor, Dr. Genius-Awesome-Pants will be there to help.
His words helped the other day:
"You've got a great doctor who knows what he's doing. The surgery is more common than you'd think. With this, they aren't poking around in your actual brain. They do the decompression and fix the covering over the brain, and that's that. It's not like grabbing a tumor where one wrong move damages you. It's structural and the only big risk is infection, barring that, you'll do fine. The youngest patient I've had with Chiair surgery was three and she's 100% recovered now".
 |
| An example of the incision aka "zipper" Don't know what happened to this photo-- sorry to whomever I borrowed it from if I did so without credit!! Opps. Feel free to contact me for my apologies. |
We have two weeks until the surgery. We have a world of support and are busy making the preparations for all scenarios. My sister is coming Monday so I can breath a little easier. I can run away when I need to, I can have support when I've calmed everyone's fears.
 |
| Another example |
I am updating this to add my husband's actual zipperhead scar. Please feel free to share this image with others to spread Chiari Awareness. This was my purpose in writing this post, along with processing this surprise that turned our family inside out.
His scar is smaller and not zipper-like at all. I don't know if it was done endoscopicly or if my husband's skin was more pliable due to his dramatic weight loss. I do know that he has sutures underneath his skin that extend about eight inches. These have not dissolved yet, so he is still healing and recovering. Life with Chiari is certainly different, but at least it is life. Here is Dr. Sugarman's handy-work:
 |
| Regular |
 | ||||
| With a diagram!! |
If you'd like to use you either photo in your own blog, share it with friends and family or show to anyone else you think is fabulous or anyone needing an awareness education, feel free to distribute, but please, no alterations.
Tuesday, April 19, 2011
A long time...Dog Stool
Since I've posted anything. I am really good at not finishing stuff. Or getting distracted. Or something.
The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.
Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).
My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.
Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.
In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.
Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.
The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).
I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.
In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)
On that note, I'm out.
(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)
The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.
Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).
My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.
Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.
In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.
Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.
The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).
I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.
In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)
On that note, I'm out.
(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)
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