Fantastic! The neurologist poked me and stared at me and then LISTENED to what I had to say. He agreed that I deserve to have the spinal fluid flow MRI and he's going to talk to my PCP and the Neurosurgeon about scheduling it with the other MRIs I have to have. He initially thought I had psuedotumor cerebri (good call, Chad!) but my optic nerves look fine, not swollen like they would be with psuedotumor. He said, "Sometimes someone's symptoms make us go, Aha! those symptoms lead us to XYZ diagnosis. But these symptoms and how they're presenting aren't as clear cut. It could be the Chiari, but it could also be something else."
Finally I feel like someone is willing to listen to me and try to figure this out, not leave me out here in limbo wondering if this is my lot in life and nothing will change it. When he asked if I knew the remedy to having Chiari, I said yes. Decompression surgery. He asked if I'm that eager to have brain surgery.
I told him no, I want to talk to a Chiari specialist and make sure this is what's causing my issues. But I also want an end to this daily suffering, and I want to halt any further nerve damage as quickly as possible. He looked surprised that I had a well-thought-out answer.
Long story short: the neurologist can't think of anything that these symptoms could be, other than Chiari, but he's not 100% sure it's the Chiari causing these symptoms, if that makes sense. He is going to coordinate with the neurosurgeon and get me the test I need to determine how bad, really, the Chiari is affecting me.
It's such a great weight off my shoulders. I feel like we have a direction now. Things are starting to move, oh so slowly, but they're MOVING.
Thanks to everyone who has been keeping me in their thoughts and prayers. Sometimes it's so lonely here I feel like I'm going to suffocate, but then I realize I'm NOT alone. I have friends out there rooting for me and it keeps me from going too insane. :)
Friday, August 17, 2012
Wednesday, August 8, 2012
my neurosurgeon...
...is obviously not the right doctor for me.
I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!
She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!
Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray? We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)
She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.
God, I'm so disappointed. I thought things were finally starting to look up.
I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!
She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!
Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray? We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)
She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.
God, I'm so disappointed. I thought things were finally starting to look up.
Monday, August 6, 2012
From the bed...
Doing better, emotionally. Between encouragement from unexpected sources to a neurosurgeon appointment this week, I no longer feel like I'm drowning. I've got a direction now and things to do to prepare. It feels good to know someone will finally talk to me.
That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me...
Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?
I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.
That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me...
Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?
I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.
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