Nothing really new to report. Feeling much the same. Dizziness is more common this weekend. I'm thinking maybe it's been a problem for awhile, but I didn't pay it any mind before. Now it's kind of scary, like maybe if I ignore it and keep doing whatever I'm doing (like carrying the baby up the stairs, doing a lot of outside physical type things with the kids, etc) I'm going to fall down or drop the baby or something else not good. So I try to sit it out and get something to drink, etc. Still haven't gotten a really good sleep so that may also be contributing. Perhaps the right side doesn't compensate as well when I'm tired?
As far as headaches they're just kind of mild right now. It's more of a "full" feeling than pain really. Like my head is big and bobbly. The other night I had this weird feeling like "brain freeze" even though I wasn't eating anything cold. My neck gets sore, though. And my ear still feels nasty and full of goo.
I feel like I keep asking Benjamin (three year old) to repeat himself, and I feel bad. He's funny and just yells whatever he was saying back at me. Sometimes I really can't hear people, most times I hear them but don't seem to process it. It's really crazy the things that must have been going on for some time but I just ignored them or shrugged them off or compensated for them.
Trying to stay positive but I really don't like the dizzies. From what I've been reading it sounds like often times surgery makes the symptoms (hearing loss, headaches, loss of balance) worse - sometimes for only a short time, sometimes forever. I've resigned myself to the fact that I probably will loose hearing in my left ear. But the rest is a little scary. I don't like headaches, I don't like dizziness. I can see why people choose the 'wait and watch' option. At my age, with the tumor already the size it is, surgery is going to have to happen sometime. After the research, I'm not really scared that the surgery will kill me, but it would be nice to be sure I wouldn't be somehow debilitated, would have a normal postop quality of life, and will be able to go back to work quickly.
I'm anxious to get to these appointments on Thursday and get some more answers. Plus a surgery date would be nice...
Sunday, August 30, 2009
Thursday, August 27, 2009
The Dizzies, Differential Diagnosis, and Why this is Funny
The last two days have brought some of the dizziness I guess I'm supposed to be feeling more often than not. Yesterday I was fine until we went in the pool with the kids for a few hours. Before getting out we were jumping around with them and with all the floaties they had on it made quite a wave pool! When I got out I was fine when moving but then stopped to help dry my niece and suddenly felt like I was still in the waves. I'm sure I had some water in my ears so that probably didn't help. After an hour or two it was much better.
Today I'm just plain tired. I'm tired a lot, but Brodie is getting a molar and was up every 1-2 hours last night so I didn't get much restful sleep. I think when I'm more tired the dizziness is worse. I don't know if that makes sense medically or not. Now that I'm aware of it, I think it may have been a problem for awhile, but I figured it was just normal for being tired. Unlike yesterday, I'm okay when still, but feel 'tipsy' while moving. Just now my foot landed half on a throw rug and half off, and I thought I was about to fall off a step. It's very weird. Hopefully after a better night's sleep it won't feel like things are gently swirling in my head.
In terms of internet research I realized I've only been looking at vestibular schwannomas, though I haven't been told 100% that a meningioma was ruled out. Last I was told, it could still be either/or, even though they were 'leaning towards' schwannoma. So anyway, I decided to look at some stuff about meningiomas. Because of the area where the tumor is located, it could be considered a cerebellopontine angle (CPA) meningioma. According to this grand rounds presentation, a vestibular schwannoma is the most common type of CPA mass, with meningioma being the second most common. It goes on to talk about the differential diagnosis with a bunch of stuff about MRIs that I don't know how to read off mine. But I have a better understanding now of the difference and have some questions to ask. It sounds like either way the surgery will be similar, except perhaps that a meningioma surgery could carry less risk of nerve damage because they aren't tumors of nerve covering, like the schwannoma. This website tells the same info about the MRI differences but with pictures and a nice chart. :)
In doing my internet searches I've come across a lot of scary and, honestly, downright whiney stories. Maybe it has something to do with these tumors primarily affecting older people (in 50s and 60s - not that that is "old", just older than me). No offense older people, but some of you all are whiney, especially about health stuff. I may sound whiney on here, but I do make a lot of fun of the whole situation, too. So it was nice to come across this video on youtube:
Okay, maybe not the best music (wasn't this the song Jessie and Rippers was always doing on Full House?) but the lyrics are pretty clever.
I was thinking the other day that I should give my tumor a name, and an image of SpongeBob SquarePants pet snail crossed my mind. So Gary it is! Hello, Gary. Pretty soon you will be homeless.
On another youtube video (which has image of the actual surgery, warning!) a guy named his tumor Kuato, after the creepy in-the-stomach baby-man from Total Recall. Pretty clever.
The fact of the matter is, the whole thing can either be pretty depressing or pretty funny if I let it. Sometimes it's both. When we were in the ER, before my CT scan, Matt was telling me in an Arnold voice "It's not a too-mah!" Then when found out it was he said, "We were wrong... It is a too-mah." Last week at Brodie's party I couldn't get a gift box open and said jokingly "Maybe someone without a brain tumor should be working on this," but no one laughed. I guess no one knows if they're supposed to or not.
It's funny! I swear! I get forgetful and stuttery and topsy turvy sometimes! What's not to laugh at?
Tuesday, August 25, 2009
The Internets!
I guess maybe the first week I was in too much of a daze to try to research. Maybe it was the vicodin. Now I'm playing catch up and reading as much as I can. As it turns out, when you use the misnomer "acoustic neuroma" to look for vestibular schwannoma, there is even more info out there. The internet is a crazy place.
After reading a bunch of stuff on these types of tumors (typically abbreviated AN, though it drives me crazy since that name is technically not right), it seems like mine is a little extreme, at least if I'm understanding everything right. For example, the CT scan report says that my tumor is 4.8cm x 1.8cm, and is displacing my left cerebellum and pons. According to this chart and graphic, that would make it a stage IV. Perhaps I should consider myself lucky rather than unlucky if that is the case. "Finally in Stage IV, if untreated the tumor will deform the cerebellum, possibly resulting in writing and gait problems, and/or the brainstem. It can block the flow of cerebrospinal fluid (CSF), causing hydrocephalus (pressure on the brain) and eventually lead to coma or even death." I don't have any of that. Yey!
I also found some patient reviews Hopkins and of course it's all good. Specifically there are a lot of good reviews of Dr T, the one I'm going to see on the 3rd. I found this checklist of questions to ask so I can take that with me. Wish I had that last time.
This website has a pretty good generalist explanation of surgery including the approaches and possible outcomes (with references!). I'm sorry that at this point I'm using the blog to kind of catalog different web things I find.
Today I'm feeling a little out of sorts. I just want to sit in a quiet corner for awhile. My ears and head have a 'full', throbbing type feeling and the top of my head and my neck hurt. I just feel generally confused and overwhelmed, especially when there's a lot of sound and movement around. If I can focus on something one on one I'm fine.
Both of my appointments (ENT and neurosurgeon) are for the 3rd. Until then, I'll continue to repeat the worry and un-worry cycle that happens with reading about these things.
After reading a bunch of stuff on these types of tumors (typically abbreviated AN, though it drives me crazy since that name is technically not right), it seems like mine is a little extreme, at least if I'm understanding everything right. For example, the CT scan report says that my tumor is 4.8cm x 1.8cm, and is displacing my left cerebellum and pons. According to this chart and graphic, that would make it a stage IV. Perhaps I should consider myself lucky rather than unlucky if that is the case. "Finally in Stage IV, if untreated the tumor will deform the cerebellum, possibly resulting in writing and gait problems, and/or the brainstem. It can block the flow of cerebrospinal fluid (CSF), causing hydrocephalus (pressure on the brain) and eventually lead to coma or even death." I don't have any of that. Yey!
I also found some patient reviews Hopkins and of course it's all good. Specifically there are a lot of good reviews of Dr T, the one I'm going to see on the 3rd. I found this checklist of questions to ask so I can take that with me. Wish I had that last time.
This website has a pretty good generalist explanation of surgery including the approaches and possible outcomes (with references!). I'm sorry that at this point I'm using the blog to kind of catalog different web things I find.
Today I'm feeling a little out of sorts. I just want to sit in a quiet corner for awhile. My ears and head have a 'full', throbbing type feeling and the top of my head and my neck hurt. I just feel generally confused and overwhelmed, especially when there's a lot of sound and movement around. If I can focus on something one on one I'm fine.
Both of my appointments (ENT and neurosurgeon) are for the 3rd. Until then, I'll continue to repeat the worry and un-worry cycle that happens with reading about these things.
Monday, August 24, 2009
The Research
I'm trying to collect some research on what to expect. Mostly I've been looking at "vestibular schwannoma" since Dr Q said he was leaning towards that, and I think it probably is, too. Just a really big one.
I found this article abstract that seems pretty relevant. I didn't know about the "fat harvest", though! Maybe I can ask them to harvest some extra and add a tummy tuck in there, too. :) Of course I don't have access to the full article, but it looks like good news from the abstract. 0.14% mortality seems like good odds. The surgeries are kind of old (the most recent being in 2001), so I bet it's even better now. Plus I'm going to some rockin' surgeons. It'll be alright.
This article also looks at 1000 vestibular schwannoma removals, with 1.1% mortality. Still not bad.
EDIT TO ADD: And this article looks specifically at young adults with large tumors. Looks like a lot of them didn't have really bad symptoms pre-diagnosis, so I don't feel like such a weirdo (though a lucky weirdo) for pretty much being okay. (END EDIT)
I'm trying to look up some information on how the surgery works exactly, too. It looks like there are several approaches that can be used.
-Enlarged translabyrinthine approach (pictures of steps) (article) - This may be a possibility, since the article talks about success with larger tumors. Looks like large being 3cm or bigger, which mine is almost 5cm. Jeebus. When reading about the pros and cons, though, it sounds not as awesome.
-Enlarged middle fossa approach (pictures / website) - Looks like this one is for little tumors so that's probably out.
-Retrosigmoid / Suboccipital approach (pictures of steps) (article) - I think this will be the one. Looks like it's for bigger tumors that have more outside the ear and more on the cerebellum/brainstem. The site I just read makes it sound like there isn't a guarantee of deafness like in other approaches, but that there could be more trauma to the cerebellum, resulting in more balance type issues. Lots of stories about people having to relearn things like walking! That's a little scary.. Also, I'm seeing some stuff about increased incidence of severe headaches for a long time postop. Will have to ask about that. (Article) (Another headache article)
(picture of preop shaving) Check out the hairdo! I'll have to go for the mohawk if they have to do that much shaving.
Well, darn. This self-reporting survey from awhile ago shows only 2/3rds of people could do the same job as before after surgery. :/
I found this article abstract that seems pretty relevant. I didn't know about the "fat harvest", though! Maybe I can ask them to harvest some extra and add a tummy tuck in there, too. :) Of course I don't have access to the full article, but it looks like good news from the abstract. 0.14% mortality seems like good odds. The surgeries are kind of old (the most recent being in 2001), so I bet it's even better now. Plus I'm going to some rockin' surgeons. It'll be alright.
This article also looks at 1000 vestibular schwannoma removals, with 1.1% mortality. Still not bad.
EDIT TO ADD: And this article looks specifically at young adults with large tumors. Looks like a lot of them didn't have really bad symptoms pre-diagnosis, so I don't feel like such a weirdo (though a lucky weirdo) for pretty much being okay. (END EDIT)
I'm trying to look up some information on how the surgery works exactly, too. It looks like there are several approaches that can be used.
-Enlarged translabyrinthine approach (pictures of steps) (article) - This may be a possibility, since the article talks about success with larger tumors. Looks like large being 3cm or bigger, which mine is almost 5cm. Jeebus. When reading about the pros and cons, though, it sounds not as awesome.
-Enlarged middle fossa approach (pictures / website) - Looks like this one is for little tumors so that's probably out.
-Retrosigmoid / Suboccipital approach (pictures of steps) (article) - I think this will be the one. Looks like it's for bigger tumors that have more outside the ear and more on the cerebellum/brainstem. The site I just read makes it sound like there isn't a guarantee of deafness like in other approaches, but that there could be more trauma to the cerebellum, resulting in more balance type issues. Lots of stories about people having to relearn things like walking! That's a little scary.. Also, I'm seeing some stuff about increased incidence of severe headaches for a long time postop. Will have to ask about that. (Article) (Another headache article)
(picture of preop shaving) Check out the hairdo! I'll have to go for the mohawk if they have to do that much shaving.
Well, darn. This self-reporting survey from awhile ago shows only 2/3rds of people could do the same job as before after surgery. :/
The Waiting Game
I'm still waiting to hear when my next appointments, and of course the surgery, will be. After talking to my main neurosurgeon's secretary on Thursday and Friday of last week, I was under the impression that someone would be calling me from the offices of both the other neurosurgeon and the otolaryngologist today. When I hadn't heard from anyone by 2pm, we checked the phone messages, thinking maybe we missed the calls. There weren't any messages from those two doctors offices, but there was a message (from Thursday - oops!) from the ER hospital to call their PA back.
I called and spoke with the PA on call and he said he wasn't completely sure why the first PA wanted to talk to me, but he guesses it's because my lyme titer came back positive by ELISA. They did a Western Blot, though, and that was negative. Anyway, they're going to fax the results to my primary care and maybe I'll get some more antibiotics (though I'm thinking not since the more specific test was negative). Woohoo! I just finished that week of keflex. :/
The PA also reviewed the MRI report and asked if I had been told about the mass. I wondered if that maybe scared him a little, thinking that maybe I didn't know and he would have to be the one to tell me on the phone. I should have seen what his reaction would have been if I said "I have a what in the who now?" :)
I looked the phone numbers for the other two doctors. Left a message with the otolaryngologist's office. When I spoke with the secretary at the other neurosurgeon's office I told her who I was and that I thought someone was going to be calling me for an appointment with that doctor, but I wasn't completely sure. She got my file and said I was right and "We'll be talking to the doctor in a few minutes and we'll see when he can fit you in." That was almost two hours ago so I guess I'll probably hear from them tomorrow... ...or when I call them back.
I guess I'm not in particular hurry to be operated on, but it would be nice to know where things stand. Plus, this whole not driving and not working thing kind of blows.
In the meantime, while the appointments are figuring themselves out (or not), most of the things on my end have been tied up. We went last week to the lawyer's to get advance directives and power of attorneys for each of us, and to write a will. Things we've been meaning to do for awhile, so what better time than now? I figure the more prepared we are the less likely we are to need it, right? The whole advance directive thing reminded me of the episode of Seinfeld where Kramer wants Elaine to be his living will executor. Remember that one?
I also faxed my family medical leave paperwork to Dr Q's office and got my short term disability stuff set up. The only potential problem is that I haven't been at my job for 6 months yet. I need 6 months under my belt before they will allow me to have short term disability. Which is especially lame because I currently have 5 months, and the first 29 days of disability are "on me" anyway. However, I was told on hiring that my years of service would roll over to the new hospital since my previous 2+ years were at a hospital in the same system. So I should be okay. The person that manages these things in HR is verifying it all and will get back to me if I need to submit more paperwork.
I guess the more sick you are, the more stress and paperwork there is?
And now to go back to twiddling my thumbs...
Edit To Add - Just got a call back. My visit with the other neurosurgeon will be Thursday the 3rd. I guess that means no surgery on my birthday, so that's good!
I called and spoke with the PA on call and he said he wasn't completely sure why the first PA wanted to talk to me, but he guesses it's because my lyme titer came back positive by ELISA. They did a Western Blot, though, and that was negative. Anyway, they're going to fax the results to my primary care and maybe I'll get some more antibiotics (though I'm thinking not since the more specific test was negative). Woohoo! I just finished that week of keflex. :/
The PA also reviewed the MRI report and asked if I had been told about the mass. I wondered if that maybe scared him a little, thinking that maybe I didn't know and he would have to be the one to tell me on the phone. I should have seen what his reaction would have been if I said "I have a what in the who now?" :)
I looked the phone numbers for the other two doctors. Left a message with the otolaryngologist's office. When I spoke with the secretary at the other neurosurgeon's office I told her who I was and that I thought someone was going to be calling me for an appointment with that doctor, but I wasn't completely sure. She got my file and said I was right and "We'll be talking to the doctor in a few minutes and we'll see when he can fit you in." That was almost two hours ago so I guess I'll probably hear from them tomorrow... ...or when I call them back.
I guess I'm not in particular hurry to be operated on, but it would be nice to know where things stand. Plus, this whole not driving and not working thing kind of blows.
In the meantime, while the appointments are figuring themselves out (or not), most of the things on my end have been tied up. We went last week to the lawyer's to get advance directives and power of attorneys for each of us, and to write a will. Things we've been meaning to do for awhile, so what better time than now? I figure the more prepared we are the less likely we are to need it, right? The whole advance directive thing reminded me of the episode of Seinfeld where Kramer wants Elaine to be his living will executor. Remember that one?
I also faxed my family medical leave paperwork to Dr Q's office and got my short term disability stuff set up. The only potential problem is that I haven't been at my job for 6 months yet. I need 6 months under my belt before they will allow me to have short term disability. Which is especially lame because I currently have 5 months, and the first 29 days of disability are "on me" anyway. However, I was told on hiring that my years of service would roll over to the new hospital since my previous 2+ years were at a hospital in the same system. So I should be okay. The person that manages these things in HR is verifying it all and will get back to me if I need to submit more paperwork.
I guess the more sick you are, the more stress and paperwork there is?
And now to go back to twiddling my thumbs...
Edit To Add - Just got a call back. My visit with the other neurosurgeon will be Thursday the 3rd. I guess that means no surgery on my birthday, so that's good!
Saturday, August 22, 2009
The Kids are Alright
...And I am, too.
The last two days we've been celebrating Brodie's 1st birthday! It's been fun, although slightly stressful, and the birthday girl (and her brother) had a blast. A lot of family was able to make it to her party, which was really nice.
So far, as far as the tumor and all goes, the kids have been told as much as they can understand and seem fine with it. Benjamin's first comment was the inspiration for the blog name. I was nervous about telling him about the tumor and the doctors visits and hospital stay that are too follow, since his only exposure to those things have been through Grandpa, and I don't want him to think I'm going to die anytime soon. I did feel like I needed to tell him something, though, because obviously he would know something's up when I'm suddenly going to the doctor a lot.
A day or two after my ER visit I was sitting with him at breakfast and said "Guess what, buddy? You know how Mommy went to the doctor the other day? Well they took a picture of the inside of my head and it turns out there's something in there making Mommy have a headache!"
"Like a bug?!"
"Yeah, kind of like a bug."
"Can I see it?" :)
Every few mornings he asks if my 'bug' is still there and tries to look in my ear (he can see it! :P). I've told him that it's okay because the doctors have medicine (he obviously doesn't understand surgery) that will make the bug go away and mommy will feel better. He doesn't seem upset by it and actually has asked his cousins before if they want to look in my ear and see the 'bug'. So it's not exactly accurate, but it's good enough for a three year old.
Brodie of course doesn't understand, being a baby, but there are unfortunately consequences for her, too. I was hoping to breastfeed her until around 18 months, assuming she would be more or less disinterested at that point anyway. However, knowing that I'll be in surgery all day, and in the hospital a few days, I figured it would be better to try to wean her now. Afterall, how embarrassing would it be asleep in the middle of surgery and all of a sudden my hospital gown is all milk-stained from not feeding her all day? (Haha, sorry, hope that's not TMI. Working on mother-baby unit with breasts and babies all day, it doesn't phase me!) She seems to be okay with it so far, but it's disappointing for me.
I'm still doing well. Actually today I didn't take any tylenol at all, and only drank one coke. I'm going to have to try to back off on the coke since I've been getting some chest pain that is apparently stress induced, but made worse with the caffiene. I can't win!
The other morning the kids were being bad and stressing me out, I almost yelled out "I'm coming, Elizabeth!"
Supposed to hear from the ENT and other neurosurgeon Monday for appointments. We shall see...!
The last two days we've been celebrating Brodie's 1st birthday! It's been fun, although slightly stressful, and the birthday girl (and her brother) had a blast. A lot of family was able to make it to her party, which was really nice.
So far, as far as the tumor and all goes, the kids have been told as much as they can understand and seem fine with it. Benjamin's first comment was the inspiration for the blog name. I was nervous about telling him about the tumor and the doctors visits and hospital stay that are too follow, since his only exposure to those things have been through Grandpa, and I don't want him to think I'm going to die anytime soon. I did feel like I needed to tell him something, though, because obviously he would know something's up when I'm suddenly going to the doctor a lot.
A day or two after my ER visit I was sitting with him at breakfast and said "Guess what, buddy? You know how Mommy went to the doctor the other day? Well they took a picture of the inside of my head and it turns out there's something in there making Mommy have a headache!"
"Like a bug?!"
"Yeah, kind of like a bug."
"Can I see it?" :)
Every few mornings he asks if my 'bug' is still there and tries to look in my ear (he can see it! :P). I've told him that it's okay because the doctors have medicine (he obviously doesn't understand surgery) that will make the bug go away and mommy will feel better. He doesn't seem upset by it and actually has asked his cousins before if they want to look in my ear and see the 'bug'. So it's not exactly accurate, but it's good enough for a three year old.
Brodie of course doesn't understand, being a baby, but there are unfortunately consequences for her, too. I was hoping to breastfeed her until around 18 months, assuming she would be more or less disinterested at that point anyway. However, knowing that I'll be in surgery all day, and in the hospital a few days, I figured it would be better to try to wean her now. Afterall, how embarrassing would it be asleep in the middle of surgery and all of a sudden my hospital gown is all milk-stained from not feeding her all day? (Haha, sorry, hope that's not TMI. Working on mother-baby unit with breasts and babies all day, it doesn't phase me!) She seems to be okay with it so far, but it's disappointing for me.
I'm still doing well. Actually today I didn't take any tylenol at all, and only drank one coke. I'm going to have to try to back off on the coke since I've been getting some chest pain that is apparently stress induced, but made worse with the caffiene. I can't win!
The other morning the kids were being bad and stressing me out, I almost yelled out "I'm coming, Elizabeth!"
Supposed to hear from the ENT and other neurosurgeon Monday for appointments. We shall see...!
Wednesday, August 19, 2009
The Thank You
I wanted to say THANK YOU to everyone that's been keeping me and my family in their thoughts and prayers, and to all those who have offered help and support. I appreciate all the nice notes, comments, emails, phone calls, everything. We're doing fine right now, but I promise I will call when we need help!
Also, thank you to those who are keeping up with this 'adventure'. I don't mean to offend anyone who might find a blog too impersonal, but it's a lot easier for me to put it all out there one time, to make sure everyone who wants info gets it and that it's given in the most complete way possible. I know I'll forget an important fact or an important person if I call everyone individually. You can't blame me, after all, I have a brain tumor. :)
THANK YOU, THANK YOU! Love you all!
Ps - If you want to chat on the phone I'm open for calls on my cell. If you don't have the number leave me a comment with your email address and I'll send it to you.
Also, thank you to those who are keeping up with this 'adventure'. I don't mean to offend anyone who might find a blog too impersonal, but it's a lot easier for me to put it all out there one time, to make sure everyone who wants info gets it and that it's given in the most complete way possible. I know I'll forget an important fact or an important person if I call everyone individually. You can't blame me, after all, I have a brain tumor. :)
THANK YOU, THANK YOU! Love you all!
Ps - If you want to chat on the phone I'm open for calls on my cell. If you don't have the number leave me a comment with your email address and I'll send it to you.
The Mall Trip
The kids and I went to the mall today with my sister-in-law, her three kids, and my mother-in-law. It's hard to remember that I'm not supposed to do everyday things like drive. I gotta use every chance I can to get out and do stuff! Plus, the kids get bored at home too long.
I've been feeling much better today than I did over the weekend. It probably helps that whatever infection I had is being treated and resolved. But also, as far as the headaches, caffeine! Drinking cokes really does make a big difference. Maybe it's largely placebo - I don't care. It still helps. I went back to taking tylenol (which I checked and each tab is 500mg, not 325mg - so I was taking 1500mg at a time before, not 975mg. Oops!) instead of vicodin. I'm taking the correct dose so I'm sure my liver is happy about that. :)
Otherwise, I'm noticing things now that must have crept up so slowly on me that I never noticed them as possible "symptoms" before. Including:
-My left ear feels like it's full of nasty goo.
-When I turn my head at the neck to talk to someone behind me, things sound very muffled and I notice I'm watching people's lips a lot.
And then things that I did notice, but figured they were 'just me' (which maybe they are!):
-A lot of trouble understanding accents
-Trouble hearing people when there is background noise, and tendency to "smile and nod" or laugh along with people to cover up the fact that I never heard what they said
-"Shutting down" in situations where there is a lot going on (like on a crowded playground)
-Feeling like my memory has specifically been worse since 2001
There's probably more, but I've forgotten. :)
I've been feeling much better today than I did over the weekend. It probably helps that whatever infection I had is being treated and resolved. But also, as far as the headaches, caffeine! Drinking cokes really does make a big difference. Maybe it's largely placebo - I don't care. It still helps. I went back to taking tylenol (which I checked and each tab is 500mg, not 325mg - so I was taking 1500mg at a time before, not 975mg. Oops!) instead of vicodin. I'm taking the correct dose so I'm sure my liver is happy about that. :)
Otherwise, I'm noticing things now that must have crept up so slowly on me that I never noticed them as possible "symptoms" before. Including:
-My left ear feels like it's full of nasty goo.
-When I turn my head at the neck to talk to someone behind me, things sound very muffled and I notice I'm watching people's lips a lot.
And then things that I did notice, but figured they were 'just me' (which maybe they are!):
-A lot of trouble understanding accents
-Trouble hearing people when there is background noise, and tendency to "smile and nod" or laugh along with people to cover up the fact that I never heard what they said
-"Shutting down" in situations where there is a lot going on (like on a crowded playground)
-Feeling like my memory has specifically been worse since 2001
There's probably more, but I've forgotten. :)
Tuesday, August 18, 2009
The First Neurosurgeon Visit
This morning we went to Hopkins bright and early for an 8am appointment with the neurosurgeon. The original surgeon who was consulted by the ER referred my case to, of all people, the same surgeon that did all three of Matt's dad's surgeries (Dr Q). When his assistant came in to see us she said the same thing everyone's been saying "I saw the last name and just said 'There's no way!'."
She asked me about my symptoms and history, did a quick physical test of my strength bilaterally and how I followed with my eyes. I gave them the MRI and CT scan films Matt had picked up from the other hospital and she went to review them with Dr Q.
Dr Q came in and reviewed some of the symptoms the PA had written down and related them for us to what he saw on the scans. Then he invited us to come look at the scans with him so he could really show us what he was talking about. I had already looked at them the night before and thought they looked pretty bad, but figured "what do I really know about brain stuff anyway?" Unfortunately, however, I was right.
Dr Q said he never likes to use the word "benign", because can any brain tumor really ever be "benign"? I really liked that since when we've told people that it looks benign meaning non-cancerous they seem to think that means all risk is gone. As we were told before, the tumor looks to be either a meningioma or vestibular shwannoma, both of which are generally non-cancerous. It is "pretty sizable" and is displacing the left side of my brain stem, with a little cone shaped piece that goes into my left auditory canal. This is, apparently, a lousy place for it to be. In addition to my brain stem, a lot of important nerves run through and around there.
(It's hard to take a picture of an MRI. This is looking from the back of my head. You can see the big white blob is the lesion.)
(Another view. Here you can kind of see the cone shaped piece going into my ear.)
(A slice view from the top down. The kind of crescent shaped white blob within the grey is the tumor. Check out my creepy eyes!)
Dr Q again reviewed our options, including 1) doing nothing (not recommended), 2) radiation (also not recommended because it's so big that they would need a lot of radiation and would probably then mess up a lot of healthy brain in the process), and 3) surgery. He told us he would like to set up a team of at least three surgeons, including an ENT specializing in these types of tumors. The surgery will be pretty intricate and will likely take a full day. It will also be pretty risky, including risks of facial paralysis, lost hearing, and of course more serious things. He was very straight forward in saying he's done many of these surgeries where the patient has come out just fine, but he's also had some where the patient "didn't walk out".
Putting together the team and getting ready for surgery could take another month. He called another neurosurgeon and an ENT while we waited and we will be meeting with them later this week or early next week. Luckily, the tumor seems to be very slow-growing so removal is not emergent. Because of the slow growth, my brain has been adapting to its presence and I don't have any swelling or hydrocephaly. Dr Q said it's likely the tumor has been there for a long time, even since before my first symptoms in April.
So I will be going to surgery sometime relatively soon. In the meantime...
-I can go back to tylenol and caffeine for my headaches
-No driving, since it is expected that my balance may be very off
-Regular diet
-No working for at least two months
-Call if I have more questions or think things are getting worse, or come to the ER on a night or weekend
And I guess otherwise life as usual?
She asked me about my symptoms and history, did a quick physical test of my strength bilaterally and how I followed with my eyes. I gave them the MRI and CT scan films Matt had picked up from the other hospital and she went to review them with Dr Q.
Dr Q came in and reviewed some of the symptoms the PA had written down and related them for us to what he saw on the scans. Then he invited us to come look at the scans with him so he could really show us what he was talking about. I had already looked at them the night before and thought they looked pretty bad, but figured "what do I really know about brain stuff anyway?" Unfortunately, however, I was right.
Dr Q said he never likes to use the word "benign", because can any brain tumor really ever be "benign"? I really liked that since when we've told people that it looks benign meaning non-cancerous they seem to think that means all risk is gone. As we were told before, the tumor looks to be either a meningioma or vestibular shwannoma, both of which are generally non-cancerous. It is "pretty sizable" and is displacing the left side of my brain stem, with a little cone shaped piece that goes into my left auditory canal. This is, apparently, a lousy place for it to be. In addition to my brain stem, a lot of important nerves run through and around there.
(It's hard to take a picture of an MRI. This is looking from the back of my head. You can see the big white blob is the lesion.)
(Another view. Here you can kind of see the cone shaped piece going into my ear.)
(A slice view from the top down. The kind of crescent shaped white blob within the grey is the tumor. Check out my creepy eyes!)Putting together the team and getting ready for surgery could take another month. He called another neurosurgeon and an ENT while we waited and we will be meeting with them later this week or early next week. Luckily, the tumor seems to be very slow-growing so removal is not emergent. Because of the slow growth, my brain has been adapting to its presence and I don't have any swelling or hydrocephaly. Dr Q said it's likely the tumor has been there for a long time, even since before my first symptoms in April.
So I will be going to surgery sometime relatively soon. In the meantime...
-I can go back to tylenol and caffeine for my headaches
-No driving, since it is expected that my balance may be very off
-Regular diet
-No working for at least two months
-Call if I have more questions or think things are getting worse, or come to the ER on a night or weekend
And I guess otherwise life as usual?
The Droopy Eye
I woke up Sunday morning still fever free. The chills were gone as well. Overnight the vicodin was only so-so at controlling the pain and I had woken up once around 3am feeling nauseated and miserable again. Laying down makes the headache, and therefore the nausea, much worse.
Interestingly, when I woke up with Brodie for the day, I felt okay but my right eye seemed more closed than the left, and not purposefully. I could move it and open and close it if I wanted to, but the 'default' position was slightly closed.
(Please excuse my grumpy "It's 6:30am and I'm already awake and showered" face and wet hair. Don't I look like I got stung by a bee or something?)
By evening my eye looked better, but that side of my face just felt 'heavy'.
Interestingly, when I woke up with Brodie for the day, I felt okay but my right eye seemed more closed than the left, and not purposefully. I could move it and open and close it if I wanted to, but the 'default' position was slightly closed.
(Please excuse my grumpy "It's 6:30am and I'm already awake and showered" face and wet hair. Don't I look like I got stung by a bee or something?)By evening my eye looked better, but that side of my face just felt 'heavy'.
The ER (8/15)
In the morning after the Minute Clinic I did still have a mild temp, but by lunch time it was over 101 and my head was just killing me. I was nauseated, anxious, tired but unable to sleep because my head hurt when I laid down, having chills, no appetite, dizzy when I moved, vague lower abdominal cramping- just generally felt like crap. I called mom to see what she thought, and she said she was thinking it was maybe Lyme disease. After sitting on the bathroom floor almost in tears, feeling like needed to vomit but couldn't, I decided to go to the ER.
The first thing they scared me with is whisking me back for an EKG because my heart rate was up and irregular. Then they drew a bunch of labs and cultures and moved me into an ER room. Of course anytime they were in the room I was doing okay, but when we were left alone everything just hurt and swirled around and I was rocking and breathing like I was in labor (so said Matt). They were thinking Lyme, too, so they drew a titer, but said it takes three days to run.
The PAs I saw were both most concerned with the headache, since they had been going on for so long. They asked how I felt about having a lumbar puncture and I said "not too good". :) I said if they thought it would figure out what was wrong with me, though, then I'd do it. The PA said she didn't really think it would and that she'd prefer to do a CT scan of my head first. My labs showed some sort of really mild infection, probably a mild UTI, and that I was dehydrated. I got two bolus liters of normal saline and some tylenol, and was left on continuous pulse ox monitoring for my tachycardia. The plan was to give me some toradol after my CT and send me home with an antibiotic.
After the CT scan the nurse came back in and hung another IV bag and said "This one will go in slow." That confused me since I thought they were about to send me home, and at the rate the IV was running it would take 8 hours to finish. Then she said "Lisa [the PA] is consulting neurology and then she'll be in."
I said to mom, "Neuro? That's a little scary", but she thought she said "urology" so we didn't know what to expect.
The PA came in and asked how my pain and nausea were and I said they were better after the fluids. She said, "We only gave you tylenol", so I was thinking she was about to call me a big faker and send me out.
Then she came up next to the bed and said "So I got the results of your CT scan. You have a brain tumor."
I honestly thought she was just joking around, because what are the chances? Just eight days after my father-in-law dies of brain cancer, they're telling me now I have a tumor?
I said "Are you serious?"
When she said she wouldn't joke about something like that I just broke down. They probably thought I was being a little nuts but my mom tried to explain how just a week before Matt's died of a brain tumor. I think the PA told us more about it but I couldn't/didn't hear anything else she said right then. All I know is I asked if i could go to work on monday and she kind of smiled and said "No, you won't be going to work this week."
They whisked me off to MRI immediately. The man that ran the MRi was very nice and tried to explain all about the MRI and how it works and what to expect. Of course, he said "The most important thing is just that you keep your head still." That's probably the hardest thing to do while you're trying not to cry.
After the MRI, I called Matt and my dad picked him up and brought him back to the hospital. They told me the MRI would take 2 hours to be read but luckily someone was watching out for me and bumped me up in line so it was done in 30 minutes.
The PA came in and told us I have either a meningioma or a vestibular shwannoma. It's 4.5cm x 2cm, on the left side, just behind my ear. It's pushing down on my brain stem on one side, and completely covering my auditory canal on the other side. The PA had already called into a neurosurgeon at Hopkins and that Dr said my choices would probably be to 'wait and watch' or go for surgery. Given its size, however, they would probably encourage surgery.
Since my vitals were a lot better by that point and I felt better the PA asked if I wanted to stay and finish the bag of fluid or go home and promise to drink more water. I opted for go home. She told me to call first thing Monday for an appointment with neurosurgery and to go to the ER at Hopkins if I had increasing symptoms. I went home with prescriptions for zofran for nausea, vicodin for pain, and keflex for the UTI.
On the way home I started calling friends to tell them (especially since we were expected at a party that night), the reaction from everyone was pretty much the same as mine - either "Are you serious?" or "You've got to be kidding me."
The first thing they scared me with is whisking me back for an EKG because my heart rate was up and irregular. Then they drew a bunch of labs and cultures and moved me into an ER room. Of course anytime they were in the room I was doing okay, but when we were left alone everything just hurt and swirled around and I was rocking and breathing like I was in labor (so said Matt). They were thinking Lyme, too, so they drew a titer, but said it takes three days to run.
The PAs I saw were both most concerned with the headache, since they had been going on for so long. They asked how I felt about having a lumbar puncture and I said "not too good". :) I said if they thought it would figure out what was wrong with me, though, then I'd do it. The PA said she didn't really think it would and that she'd prefer to do a CT scan of my head first. My labs showed some sort of really mild infection, probably a mild UTI, and that I was dehydrated. I got two bolus liters of normal saline and some tylenol, and was left on continuous pulse ox monitoring for my tachycardia. The plan was to give me some toradol after my CT and send me home with an antibiotic.
After the CT scan the nurse came back in and hung another IV bag and said "This one will go in slow." That confused me since I thought they were about to send me home, and at the rate the IV was running it would take 8 hours to finish. Then she said "Lisa [the PA] is consulting neurology and then she'll be in."
I said to mom, "Neuro? That's a little scary", but she thought she said "urology" so we didn't know what to expect.
The PA came in and asked how my pain and nausea were and I said they were better after the fluids. She said, "We only gave you tylenol", so I was thinking she was about to call me a big faker and send me out.
Then she came up next to the bed and said "So I got the results of your CT scan. You have a brain tumor."
I honestly thought she was just joking around, because what are the chances? Just eight days after my father-in-law dies of brain cancer, they're telling me now I have a tumor?
I said "Are you serious?"
When she said she wouldn't joke about something like that I just broke down. They probably thought I was being a little nuts but my mom tried to explain how just a week before Matt's died of a brain tumor. I think the PA told us more about it but I couldn't/didn't hear anything else she said right then. All I know is I asked if i could go to work on monday and she kind of smiled and said "No, you won't be going to work this week."
They whisked me off to MRI immediately. The man that ran the MRi was very nice and tried to explain all about the MRI and how it works and what to expect. Of course, he said "The most important thing is just that you keep your head still." That's probably the hardest thing to do while you're trying not to cry.
After the MRI, I called Matt and my dad picked him up and brought him back to the hospital. They told me the MRI would take 2 hours to be read but luckily someone was watching out for me and bumped me up in line so it was done in 30 minutes.
The PA came in and told us I have either a meningioma or a vestibular shwannoma. It's 4.5cm x 2cm, on the left side, just behind my ear. It's pushing down on my brain stem on one side, and completely covering my auditory canal on the other side. The PA had already called into a neurosurgeon at Hopkins and that Dr said my choices would probably be to 'wait and watch' or go for surgery. Given its size, however, they would probably encourage surgery.
Since my vitals were a lot better by that point and I felt better the PA asked if I wanted to stay and finish the bag of fluid or go home and promise to drink more water. I opted for go home. She told me to call first thing Monday for an appointment with neurosurgery and to go to the ER at Hopkins if I had increasing symptoms. I went home with prescriptions for zofran for nausea, vicodin for pain, and keflex for the UTI.
On the way home I started calling friends to tell them (especially since we were expected at a party that night), the reaction from everyone was pretty much the same as mine - either "Are you serious?" or "You've got to be kidding me."
The Background Story
I started having consistent headaches sometime around April. The first thing I did was go to Pearle Vision to get my glasses updated, thinking an outdated prescription was causing the headaches. When the new glasses didn't help much, I attributed them to stress, since I had recently started a new job. As the summer went on, I had even more reason to consider stress a causative force, as Matt's dad started not doing well health-wise. He had been diagnosed with a malignant brain tumor two summers before and had already gone through surgeries, chemo, radiation, and other treatments.
Typically the headaches didn't have other symptoms associated with them, and seemed to ease up with tylenol and caffeinated sodas. I started drinking a lot of Coke. They didn't happen everyday, or with any pattern. And with all that was going on already, I never went to get them checked out.
In the week after Matt's dad died I had headaches everyday. Still I thought they were stress induced. I was up to taking about 975mg of tylenol three times a day while awake, plus two sodas.
Friday night (8/14) I was due to return to work, so I tried to sleep in until about noon. When I got up I just didn't feel good. I was feeling hot and cold, and just kind of 'out of it' and anxious. Around 5pm I decided to take my temperature and found I had a mild fever. I called into work and the charge nurse told me if I had a fever I should just stay home. Since I had already been out for a week on berevement leave, I thought it a good idea to get a work release note. I also wanted to make sure this was just a virus vs the flu. So I went to the Minute Clinic. The NP there did an assessment and a rapid flu test and couldn't find the reason for my elevated pulse and temperature (p 116, t 101.4) and headache. He sent me home with instructions to try taking motrin for the fever and pain, and to go to the ER if I still had a fever in the morning.
Typically the headaches didn't have other symptoms associated with them, and seemed to ease up with tylenol and caffeinated sodas. I started drinking a lot of Coke. They didn't happen everyday, or with any pattern. And with all that was going on already, I never went to get them checked out.
In the week after Matt's dad died I had headaches everyday. Still I thought they were stress induced. I was up to taking about 975mg of tylenol three times a day while awake, plus two sodas.
Friday night (8/14) I was due to return to work, so I tried to sleep in until about noon. When I got up I just didn't feel good. I was feeling hot and cold, and just kind of 'out of it' and anxious. Around 5pm I decided to take my temperature and found I had a mild fever. I called into work and the charge nurse told me if I had a fever I should just stay home. Since I had already been out for a week on berevement leave, I thought it a good idea to get a work release note. I also wanted to make sure this was just a virus vs the flu. So I went to the Minute Clinic. The NP there did an assessment and a rapid flu test and couldn't find the reason for my elevated pulse and temperature (p 116, t 101.4) and headache. He sent me home with instructions to try taking motrin for the fever and pain, and to go to the ER if I still had a fever in the morning.
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