Well, for those of you who have been anxiously awaiting my next blog post. Here I am. Still alive. I haven't had much to say about my Chiari situation in the last six months or so. Run of the mill headaches, dizziness and numbness had subsided. But a couple of months ago, I started getting sick. Seemed like a stomach virus of some sort, but kept coming back. Docs thought I had a bacterial infection, but it still came back after antibiotics. Two months of hell, dozens of tests, and thousands of dollars later, I had an answer. Technical terms: gastritis and esophagitis. Actual meaning: I've ripped up my insides my by having too much stress in my life (thanks PTSD) and by taking too many non-steroidal anti-inflammatory meds (NSAIDs) (thanks Chiari). There are tears along my esophagus, and my stomach lining is all but destroyed because the only thing that has ever given me the slightest relief for headaches were the NSAIDs. Doctor's orders: restricted diet and NO MORE NSAIDs. He scared the crap out of me by telling me that I was at seriously high risk for a GI bleed and for stomach cancer. For about a week, I actually thought I might have stomach cancer. (Less than happy thought.) So, I'm taking his advice seriously.
Here's the deal, though...in the past week I've had three horrific headaches that left me completely incapacitated, for which I have nothing to take for relief except freaking Tylenol. Useless. So, I'm approaching a dangerous precipice I swore I would never approach--prescription pain medication. I've been putting off going to the doctor to talk about pain management, but my options are limited. No money for weekly back and neck massages, natural remedies are ineffective for my level of pain, I'm still against surgery, so that leaves me with two options...muscle relaxers and prescription pain meds. I'll try the first option first, and pray that it will do the trick. Bottom line is that I'm going to have pain because my brain is squeezing out the back of my head. But I don't want to compound my problems by developing a pill addiction. I'm still trying to wrap my mind around the fact that I am a chronic pain patient.
I'm angry today. Angry that I haven't been able to fashion my life to be what I want it to be for one reason or a thousand. Angry that I have to live with these ridiculous health problems that I've acquired through no fault of my own. Angry that I have to be my own caretaker, knowing that there is probably no one who is even going to read this blog.
A friend taught me the therapeutic value of breaking things when I'm angry. But I'm out of things to break and I'm still so, so very angry and sad.
Tuesday, December 31, 2013
Thursday, May 23, 2013
Answered prayers
Well, my friends, this has maybe been the least favorite month of my life. I feel like I've been walking around under a cloud. There were times (many times) when I was actually afraid I was going to die, and mentally was even trying to prepare myself for that contingency. I was trying my best to hold on to every little piece of the puzzle and control it all with my own two hands. So, even though I was praying and I was trying to be open to whatever the Lord's will was for me, I was still trying to be in control. I wanted to control my emotions and everyone else's about this situation, forgetting that those who care about me would be experiencing this right along with me.
Finally last night, I let go completely. I let it all go. The fear, the control, the uncertainty, the pain. All of it. I've been praying for weeks like I've never prayed before, and I knew that others were praying for me. I'd done all I could do. I slept well, and awoke refreshed to meet the day ahead of me. Those of you who know me well know how much I stress out about doctor appointments and then I get into this anxiety loop, then I stress about driving (especially in Salt Lake), and I'm in full on panic mode by the time I arrive at my destination.
Not today.
I was calm before the appointment with the neurosurgeon and even driving in Salt Lake. (I was grateful to have a friend with me to ground me and help me talk about other things so I didn't have the chance to overthink anything on the drive down.) Things went really well. First Dr. B told me I am an excellent candidate for both the decompression and fusion surgeries. We talked about the pros and cons of doing the two surgeries together versus separately. (I opt for together.)
Then came the all important question, "Can the surgery wait or do I have to do it now?" After examining me and looking at the MRIs from 2010 and 2013, the doctor said I appear to be functioning and stable (albeit with significant symptoms). So, he said I can wait to have the surgery as long as I can live with my symptoms. There has been no permanent neurological damage as yet and I am not in danger of losing my vision or becoming paralyzed in the near future. And....(drum roll please)...the words that changed my life, "You're not going to die from this." Holy cow, I could feel a physical weight fall from my shoulders. The cloud was gone, and I could see the sun again. I wanted to cry with relief. Everything else was a breeze.
(Other notes: Dr. B. says my left leg is extremely weak, but probably always has been and my body has learned to compensate. One side of my cerebellum is herniated farther than the other, 15 mm and 11mm respectively. I am not at risk for tethered cord syndrome-another fear that's been plaguing me.)
Dr. B feels that this surgery will be successful and that all of my current symptoms can be resolved by it. So, we're talking about doing it a year from now. The funny thing is, I'm not scared of the surgery anymore (although I am so unbelievably grateful that I have time to prepare). This surgeon is one of (if not THE) greatest Chiari neurosurgeon in the WORLD and he's right there in Salt Lake. I can't even believe the generosity of the Lord in arranging all of this so that even though I have this strange and rare brain condition, I am here in this place at this time with the greatest neurosurgeon in the world. I felt so comfortable. So safe. Sure that all things will work out how they are supposed to work out.
I know that this next year will not be a breeze. After all, I'm still living with all my symptoms. But I am living and there is light at the end of the tunnel for relief. Life is good. Prayers are answered. That's my truth.
Finally last night, I let go completely. I let it all go. The fear, the control, the uncertainty, the pain. All of it. I've been praying for weeks like I've never prayed before, and I knew that others were praying for me. I'd done all I could do. I slept well, and awoke refreshed to meet the day ahead of me. Those of you who know me well know how much I stress out about doctor appointments and then I get into this anxiety loop, then I stress about driving (especially in Salt Lake), and I'm in full on panic mode by the time I arrive at my destination.
Not today.
I was calm before the appointment with the neurosurgeon and even driving in Salt Lake. (I was grateful to have a friend with me to ground me and help me talk about other things so I didn't have the chance to overthink anything on the drive down.) Things went really well. First Dr. B told me I am an excellent candidate for both the decompression and fusion surgeries. We talked about the pros and cons of doing the two surgeries together versus separately. (I opt for together.)
Then came the all important question, "Can the surgery wait or do I have to do it now?" After examining me and looking at the MRIs from 2010 and 2013, the doctor said I appear to be functioning and stable (albeit with significant symptoms). So, he said I can wait to have the surgery as long as I can live with my symptoms. There has been no permanent neurological damage as yet and I am not in danger of losing my vision or becoming paralyzed in the near future. And....(drum roll please)...the words that changed my life, "You're not going to die from this." Holy cow, I could feel a physical weight fall from my shoulders. The cloud was gone, and I could see the sun again. I wanted to cry with relief. Everything else was a breeze.
(Other notes: Dr. B. says my left leg is extremely weak, but probably always has been and my body has learned to compensate. One side of my cerebellum is herniated farther than the other, 15 mm and 11mm respectively. I am not at risk for tethered cord syndrome-another fear that's been plaguing me.)
Dr. B feels that this surgery will be successful and that all of my current symptoms can be resolved by it. So, we're talking about doing it a year from now. The funny thing is, I'm not scared of the surgery anymore (although I am so unbelievably grateful that I have time to prepare). This surgeon is one of (if not THE) greatest Chiari neurosurgeon in the WORLD and he's right there in Salt Lake. I can't even believe the generosity of the Lord in arranging all of this so that even though I have this strange and rare brain condition, I am here in this place at this time with the greatest neurosurgeon in the world. I felt so comfortable. So safe. Sure that all things will work out how they are supposed to work out.
I know that this next year will not be a breeze. After all, I'm still living with all my symptoms. But I am living and there is light at the end of the tunnel for relief. Life is good. Prayers are answered. That's my truth.
Wednesday, April 24, 2013
Waiting
Well, friends, the surgery vs. non-surgery game is all about waiting. Waiting to hear back from the surgeon if he even wants to see me and now waiting for the actual appointment with him. Another month of waiting.
I've been thinking for the past few weeks, and reading, and researching, and praying, and in every other way trying to make an informed decision about whether or not to have the surgery. Right now I'm leaning towards not having the surgery for lots of reasons...
First, it's a gamble about whether or not I'll come out better or worse on the other side of surgery. And there's really no kind of guarantee.
Second, the recovery time is ridiculous for the types of surgery/surgeries (probably multiple) that I would have to have for a complicated Chiari malformation like mine. Anywhere from 3 months to a year. (Not being able to drive or work or care for myself in that time.) Let's face the reality here...I don't really have the support system in place to be able to deal with that type of lengthy recovery. I have to be able to work and care for myself. This length and type of recovery would be extremely taxing to a spouse or immediate family. I have read many stories of people who left their spouses with Chiari because they couldn't deal with the awful recovery (or lack of recovery). How can I ask that kind of sacrifice from any of the people I love and care about in my life (although they've been awesome enough to offer)?
Third, I have the possibility of a sweet job which I am applying for and which would start in the fall. In fact, it's kind of the ideal job, the one I've been waiting and praying for, but didn't think would ever happen. Now is not the time to put myself out of commission.
But I have one more step to take before I can make my final decision, and that is meeting with and fully questioning the neurosurgeon who specializes in my condition. (The same doctor who performed my nephew's surgery.) And that will be a month from now. In the meantime, more waiting.
It's become a daily goal of mine to be as positive as possible. To look this thing in the face and stand up to it, knowing that I am not standing alone, and that the Lord is with me. Some days are easier than others. I've found myself appreciating the smaller joys of life. Then there are the painful sick days, the kinds of days that made me seek medical help in the first place, and I don't feel like the strong or brave type of person that can handle this. Sometimes I wonder if I'm just having to make a decision between two evils, one known, and one unknown.
Who knows, but I keep trying to be positive because apparently, at least so I've heard, "The pain you feel today will be the strength you feel tomorrow."
I've been thinking for the past few weeks, and reading, and researching, and praying, and in every other way trying to make an informed decision about whether or not to have the surgery. Right now I'm leaning towards not having the surgery for lots of reasons...
First, it's a gamble about whether or not I'll come out better or worse on the other side of surgery. And there's really no kind of guarantee.
Second, the recovery time is ridiculous for the types of surgery/surgeries (probably multiple) that I would have to have for a complicated Chiari malformation like mine. Anywhere from 3 months to a year. (Not being able to drive or work or care for myself in that time.) Let's face the reality here...I don't really have the support system in place to be able to deal with that type of lengthy recovery. I have to be able to work and care for myself. This length and type of recovery would be extremely taxing to a spouse or immediate family. I have read many stories of people who left their spouses with Chiari because they couldn't deal with the awful recovery (or lack of recovery). How can I ask that kind of sacrifice from any of the people I love and care about in my life (although they've been awesome enough to offer)?
Third, I have the possibility of a sweet job which I am applying for and which would start in the fall. In fact, it's kind of the ideal job, the one I've been waiting and praying for, but didn't think would ever happen. Now is not the time to put myself out of commission.
But I have one more step to take before I can make my final decision, and that is meeting with and fully questioning the neurosurgeon who specializes in my condition. (The same doctor who performed my nephew's surgery.) And that will be a month from now. In the meantime, more waiting.
It's become a daily goal of mine to be as positive as possible. To look this thing in the face and stand up to it, knowing that I am not standing alone, and that the Lord is with me. Some days are easier than others. I've found myself appreciating the smaller joys of life. Then there are the painful sick days, the kinds of days that made me seek medical help in the first place, and I don't feel like the strong or brave type of person that can handle this. Sometimes I wonder if I'm just having to make a decision between two evils, one known, and one unknown.
Who knows, but I keep trying to be positive because apparently, at least so I've heard, "The pain you feel today will be the strength you feel tomorrow."
Thursday, April 11, 2013
Second Round of Tests
Well, yesterday was a long and anxious day. I believe I have gotten to the point where I am kind of zen about the whole overarching thing of having Chiari and possibly needing surgery. I'm trying to accept that it's all going to work out for the best. But having to go into an MRI machine sent my poor little anxiety-ridden body into panic mode.
So, I spent the day alternating between stressing about it and being in denial and ignoring it. Finally the time came for me to leave work and go have the tests done. I took the Valium the doctor had prescribed and got into the car with Daffodil. (Not safe to drive on that stuff, you know.) Valium gets into my system pretty quickly so by the time we were at the hospital, I was a little out of it. It's odd being aware of your surroundings and just not caring.
Once I was back in the MRI room, I had lost the ability to care that I was half dressed in a hospital gown. Lost the ability to care that some strange man (the radiologist) was having to move the hospital gown and set up the heart monitor on my chest. (In this case, I'm sure it has to do with his kindness and professionalism.) Yes, I had to have a heart monitor because there was a possibility that I could stop breathing from lying on my back for so long. Also the heart monitor was to be part of the CSF flow study.
Into the tube I went with headphones blasting classical music in my ears. But the music was still not enough to cover the intense noise of the MRI machine or the vibrations. I lost track of time, and tried to think of anything, everything. I'm pretty sure I felt my MaMa close by while I was in there, especially near the end of the hour and a half when the Valium was starting to wear off, and my heart started to race. I know my heart was racing and beating irregularly because the machine at that point had picked up my heart rate and was vibrating it loudly in my ears. Is it weird to say that I believe I felt my kind radiologist praying for me too? In fact, while I was in there, I felt many prayers from my friends and family. And I was grateful.
When I walked back out to wait for the CDs of my scans, Daffodil was there, making me laugh, and letting me talk openly about everything. And I was grateful again. When I got home, I had the long distance support of Jay Jay and Giggly. And I was grateful again.
So, I haven't met with the doctor yet to discuss the scans. I've looked at the new ones in comparison to the ones 3 years ago, and I can see some change. Thankfully there is no syrinx (pocket of fluid) in my spine. That is a huge relief.
But just to give you an idea of what we're dealing with, I thought I'd show you some pictures. Remember those old commercials: "This is your brain, this is your brain on drugs"?
Well...
This is a normal brain (not mine):
And this is my Chiari brain falling out of my head:
So, there you go. I have no more answers than I did a few days ago, but now I have pictures. I'm not frightened today. Somehow I know that the Lord's got this. He has held my little brain in his gentle hands for my whole life, and I know He will continue to do so. No worries.
So, I spent the day alternating between stressing about it and being in denial and ignoring it. Finally the time came for me to leave work and go have the tests done. I took the Valium the doctor had prescribed and got into the car with Daffodil. (Not safe to drive on that stuff, you know.) Valium gets into my system pretty quickly so by the time we were at the hospital, I was a little out of it. It's odd being aware of your surroundings and just not caring.
Once I was back in the MRI room, I had lost the ability to care that I was half dressed in a hospital gown. Lost the ability to care that some strange man (the radiologist) was having to move the hospital gown and set up the heart monitor on my chest. (In this case, I'm sure it has to do with his kindness and professionalism.) Yes, I had to have a heart monitor because there was a possibility that I could stop breathing from lying on my back for so long. Also the heart monitor was to be part of the CSF flow study.
Into the tube I went with headphones blasting classical music in my ears. But the music was still not enough to cover the intense noise of the MRI machine or the vibrations. I lost track of time, and tried to think of anything, everything. I'm pretty sure I felt my MaMa close by while I was in there, especially near the end of the hour and a half when the Valium was starting to wear off, and my heart started to race. I know my heart was racing and beating irregularly because the machine at that point had picked up my heart rate and was vibrating it loudly in my ears. Is it weird to say that I believe I felt my kind radiologist praying for me too? In fact, while I was in there, I felt many prayers from my friends and family. And I was grateful.
When I walked back out to wait for the CDs of my scans, Daffodil was there, making me laugh, and letting me talk openly about everything. And I was grateful again. When I got home, I had the long distance support of Jay Jay and Giggly. And I was grateful again.
So, I haven't met with the doctor yet to discuss the scans. I've looked at the new ones in comparison to the ones 3 years ago, and I can see some change. Thankfully there is no syrinx (pocket of fluid) in my spine. That is a huge relief.
But just to give you an idea of what we're dealing with, I thought I'd show you some pictures. Remember those old commercials: "This is your brain, this is your brain on drugs"?
Well...
This is a normal brain (not mine):
And this is my Chiari brain falling out of my head:
A little anatomy lesson...the dark gray piece from the center of the brain is the brain stem. The wormy looking piece to the right of that is the cerebellum. And then there's the vertebrae to the left. The most concerning part to me is the top vertebrae which is turned and obviously poking into the brain stem, and the fact that the brain stem itself is more elongated and farther down than it was 3 years ago.
So, there you go. I have no more answers than I did a few days ago, but now I have pictures. I'm not frightened today. Somehow I know that the Lord's got this. He has held my little brain in his gentle hands for my whole life, and I know He will continue to do so. No worries.
Monday, April 8, 2013
Blogging again?
Well, friends, I thought I had put my blogging days behind me. But I find that as I am possibly entering into a new phase of life, I may need a place where I can refer people for the news about me and my situation without having to repeat myself over and over again. (Not that I don't want to talk to each and every one of you, but it gets tiring to tell the story more than once or twice.)
So, here's the deal. As some or most of you reading this may know, I have what's called a Chiari Malformation. Basically, as I like to joke, my brain's falling out of my head. I've known about it for several years. Three years ago after hearing the words "15mm out of your skull" and "surgery", I entered a lovely phase of denial. After a great deal of research about the surgery, I knew I wanted nothing to do with it.
Fast forward to December of this year when my two-year-old nephew and my sister were also diagnosed with Chiari. I went along for the visit with the neurosurgeon. He pulled up all three of our MRIs and talked to us at length. My sister opted for the surgery for the baby, and it went well. He's progressing nicely now. When the neurosurgeon looked at my MRI, he took a step back, and said, "Whoa. I can't believe you're walking around." He pointed out that both my cerebellum and my brain stem are out of my skull, causing significant blockage of spinal fluid. Also, the top vertebrae is turned and poking directly into my brainstem. He advised immediate surgery.
But I would have none of it. The point was, to me, not what I saw on the MRI, but that fact that I AM up and walking around. So, why mess with something that's working, even if I am having some symptoms?
Fast forward to the past two weeks. Symptoms have progressed, and I started falling down. So, I guess I can't flaunt the "but I am walking around" thing anymore.
Went back to the neurologist this morning. He looked at the MRI from 3 years ago, and I got another. "Whoa." (P.S. you never really want to hear that from your doctor.) He said that surgery was warranted 3 years ago, and there is a good chance that the situation has gotten worse. So, in two days, I'll be having more MRIs done to check the position of my brain, and check spinal fluid flow, and to rule out the possibility of a syrinx (a pocket of spinal fluid stuck in the spinal cord). After that, I'll probably meet with a neurosurgeon to discuss my options.
When I asked the neurologist this morning what would happen if I didn't have the surgery, he replied, "You see this little bone poking into your brain stem? At any time it could cause blindness, paralysis, or stop your breathing."
So, is it too late to go back to denial?
So, here's the deal. As some or most of you reading this may know, I have what's called a Chiari Malformation. Basically, as I like to joke, my brain's falling out of my head. I've known about it for several years. Three years ago after hearing the words "15mm out of your skull" and "surgery", I entered a lovely phase of denial. After a great deal of research about the surgery, I knew I wanted nothing to do with it.
Fast forward to December of this year when my two-year-old nephew and my sister were also diagnosed with Chiari. I went along for the visit with the neurosurgeon. He pulled up all three of our MRIs and talked to us at length. My sister opted for the surgery for the baby, and it went well. He's progressing nicely now. When the neurosurgeon looked at my MRI, he took a step back, and said, "Whoa. I can't believe you're walking around." He pointed out that both my cerebellum and my brain stem are out of my skull, causing significant blockage of spinal fluid. Also, the top vertebrae is turned and poking directly into my brainstem. He advised immediate surgery.
But I would have none of it. The point was, to me, not what I saw on the MRI, but that fact that I AM up and walking around. So, why mess with something that's working, even if I am having some symptoms?
Fast forward to the past two weeks. Symptoms have progressed, and I started falling down. So, I guess I can't flaunt the "but I am walking around" thing anymore.
Went back to the neurologist this morning. He looked at the MRI from 3 years ago, and I got another. "Whoa." (P.S. you never really want to hear that from your doctor.) He said that surgery was warranted 3 years ago, and there is a good chance that the situation has gotten worse. So, in two days, I'll be having more MRIs done to check the position of my brain, and check spinal fluid flow, and to rule out the possibility of a syrinx (a pocket of spinal fluid stuck in the spinal cord). After that, I'll probably meet with a neurosurgeon to discuss my options.
When I asked the neurologist this morning what would happen if I didn't have the surgery, he replied, "You see this little bone poking into your brain stem? At any time it could cause blindness, paralysis, or stop your breathing."
So, is it too late to go back to denial?
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