If you're reading this and wondering why I didn't post an update at 2 months post-op, the reason is simple: at that point I felt like I was making progress very slowly and I didn't know what to write. So I didn't.
However, shortly after that point I began having days with less pain. I would wake up with a lot of pain, take a Tylenol, and go through the rest of the day feeling pretty good. I was taking half the amount of Tylenol & Advil that I took in the first month. I started building up my exercise again, working up to 60 minutes of exercise bike every day. My incision looked great and I thought I had finally gotten over the hump.
But nothing in life is simple. Brain surgery was relatively easy. Recovering? Well, that's not so easy. A couple weeks ago my pain (feels like brain swelling, I've been assured it isn't but I don't think I agree) suddenly came back. Plus, in the last week my nausea has returned, starting after lunch and lasting until bedtime. I don't know why these things are recurring. I've been sleeping, exercising, and eating well. I feel like I'm doing the most I can.
I'd like to insert here that the 16-year headache I had before my surgery is COMPLETELY GONE. COMPLETELY. That entire region of my brain is basically numb, like I close my eyes and picture it, but I can't feel anything there. So the pain I'm talking about now is since the surgery itself.
My follow-up neurosurgeon is concerned for me. He claims I shouldn't have had pain after the first two weeks. Well, I'm sure he is very smart and skilled. He did a great job opening and closing my incision. Having said that... Brain surgery is incredibly specific to each person, so the recovery is more of an art than a science. I'm not saying something isn't wrong; but I feel in my gut that this is just a dip in the road.
I am going to get an MRI soon as well as see an ophthalmologist. I hope these visits will offer some sort of explanation as to why I'm dealing with so much pain & nausea again. For now I just have to do the best I can to keep myself healthy. And try not to beat myself up. -_-
Wednesday, July 3, 2019
Wednesday, May 1, 2019
One Month Post-Op
Well, a month ago I had brain surgery. Did it really happen? I reach up and feel the back of my head, the bumpy knots of the sutures still working their way out, and realize that it did indeed happen. Mostly, though, the evidence of my surgery is hidden within.
I've returned to doing nearly everything I did before surgery. I'm crocheting, watching movies, riding my exercise bike, playing video games, and even reading internet pages on my tablet, something that was nearly impossible at first. My double vision remains bad but I hardly notice in my daily activities. Yes, on the whole, I've returned to "normal" life.
But underneath the surface, I am obviously still recovering. Breathing is getting easier but I still get winded much easier than before. I can't ride my bike long and I can only go very slowly. Every day when I wake up, I gauge how bad the brain swelling will be. Some days it's so bad, I find myself lashing out and angry about the tiniest things. Other days I have much less pain and I'm cheerful.
I suppose in summary, I've pretty much fully returned to what I was doing before surgery, but not to the same extent. My life before surgery wasn't exactly ideal, though, and I hope it will be greatly improved upon in the future. For now I'm just trying to accept the fact that it's okay to cut myself some slack. I'm up and about and keeping busy, and that'll have to be enough for the present.
I've returned to doing nearly everything I did before surgery. I'm crocheting, watching movies, riding my exercise bike, playing video games, and even reading internet pages on my tablet, something that was nearly impossible at first. My double vision remains bad but I hardly notice in my daily activities. Yes, on the whole, I've returned to "normal" life.
But underneath the surface, I am obviously still recovering. Breathing is getting easier but I still get winded much easier than before. I can't ride my bike long and I can only go very slowly. Every day when I wake up, I gauge how bad the brain swelling will be. Some days it's so bad, I find myself lashing out and angry about the tiniest things. Other days I have much less pain and I'm cheerful.
I suppose in summary, I've pretty much fully returned to what I was doing before surgery, but not to the same extent. My life before surgery wasn't exactly ideal, though, and I hope it will be greatly improved upon in the future. For now I'm just trying to accept the fact that it's okay to cut myself some slack. I'm up and about and keeping busy, and that'll have to be enough for the present.
Friday, April 19, 2019
16 Days Later (First Post-Op Appointment)
Two and a half weeks ago, I had brain surgery. Maybe it's a cliche, but it feels surreal. A week ago I wasn't getting up much, hadn't showered, and hadn't even gone up the stairs in my house. 8 days post-op I was in the worst pain of my life. That day every breath came out in a moan and my head felt like it was going to explode. But I got through that experience and now I'm doing so, so much better.
The surgical team says my incision looks great and I seem to be progressing very well. At this point I'm free to do whatever I am able to handle. Honestly I feel strong and healthy as far as I can go up and down stairs with relative ease, walking through my house is fine, standing and sitting feels normal, etc. However, I do get out of breath very easily, and breathing itself feels a bit strained at times. My normal double vision is also worse since the surgery but I understand this to be a common side effect which should resolve in time.
I will write another post in the future detailing the entire surgery day if anyone is interested. But here's just a few details. I checked in at the hospital at 5:30 am and then went through a whole pre-surgery routine, meeting some of my surgical team. At 7:30 am I was wheeled into the OR and by 7:35 I was out. When next I woke, it was 2 pm. The actual surgery, I'm told, didn't start until about 9:45. This is because they had to put in a lot of tubes and lines to monitor all kinds of things while I was out.
Once I was awake, they wheeled me over to imaging for a CT scan, and then I was taken to the neuro ICU. I was there for about 24 hours and then moved to a normal hospital room which I was in for another 24 hours. On Friday, two days after my surgery, they gave me the OK to come home. It seemed much too early in a way, but I was able to get to and from the bathroom without help, and I seemed to be recovering faster than expected, so I opted to return home.
Since then I have had a lot of ups and downs, but I am feeling better every day. My pain is manageable and I believe it will only get better with time. As for the reason behind the surgery, it's simply too early to tell, but I believe this really has changed my life. From now on I will always think of my life as pre- and post- brain surgery. :)
The surgical team says my incision looks great and I seem to be progressing very well. At this point I'm free to do whatever I am able to handle. Honestly I feel strong and healthy as far as I can go up and down stairs with relative ease, walking through my house is fine, standing and sitting feels normal, etc. However, I do get out of breath very easily, and breathing itself feels a bit strained at times. My normal double vision is also worse since the surgery but I understand this to be a common side effect which should resolve in time.
I will write another post in the future detailing the entire surgery day if anyone is interested. But here's just a few details. I checked in at the hospital at 5:30 am and then went through a whole pre-surgery routine, meeting some of my surgical team. At 7:30 am I was wheeled into the OR and by 7:35 I was out. When next I woke, it was 2 pm. The actual surgery, I'm told, didn't start until about 9:45. This is because they had to put in a lot of tubes and lines to monitor all kinds of things while I was out.
Once I was awake, they wheeled me over to imaging for a CT scan, and then I was taken to the neuro ICU. I was there for about 24 hours and then moved to a normal hospital room which I was in for another 24 hours. On Friday, two days after my surgery, they gave me the OK to come home. It seemed much too early in a way, but I was able to get to and from the bathroom without help, and I seemed to be recovering faster than expected, so I opted to return home.
Since then I have had a lot of ups and downs, but I am feeling better every day. My pain is manageable and I believe it will only get better with time. As for the reason behind the surgery, it's simply too early to tell, but I believe this really has changed my life. From now on I will always think of my life as pre- and post- brain surgery. :)
Wednesday, March 27, 2019
One Week Before Surgery
"Courage is not the absence of fear, but rather the judgment that something else is more important than fear." (Meg Cabot, Franklin D. Roosevelt, I'm not really sure who said it exactly)
~~~~~
What is it that makes someone brave? Is it an inherent ability to withstand adversity with grace? Is it something we build with time? Or can it even just be pushing through despite our fear?
Sometimes a voice whispers to me that I don't deserve this surgery. That I don't deserve to live a normal life without pain, because there are others who have it worse. Then I remember what the last four years have been like (or even the last 16, to be honest). The things I've gone through, the things my mom has gone through with me. After dealing with so many doctors and tests and living the life of an invalid since 2015, I've come to realize that a lot of who we are is who we tell ourselves we are. Let me rephrase that... If you tell yourself you are brave, then you are. I know from experience it's hard to believe in the power of thought. And I'm not saying you shouldn't feel negative emotions; there is always a time and place for sadness or anger. But never tell yourself you can't do something, because you can.
Can I believe I'm having brain surgery in a week? Not really. I'm a biologist myself and yet it feels unreal. But I believe this is truly the only route for me to go. I have seen the success stories on the internet and I'm ready to add my name to their ranks. Recovery, well, that's a fog of mystery I have no power over. I will just have to trust God to get me through it.
At this point I don't know what I'm writing anymore. My mind is racing with everything I could or should say, so I will just end it here. I plan to post again the day before my operation. Thank you to those who take the time to read my posts and I hope it won't be too long before I'm back on the internet again.
~~~~~
What is it that makes someone brave? Is it an inherent ability to withstand adversity with grace? Is it something we build with time? Or can it even just be pushing through despite our fear?
Sometimes a voice whispers to me that I don't deserve this surgery. That I don't deserve to live a normal life without pain, because there are others who have it worse. Then I remember what the last four years have been like (or even the last 16, to be honest). The things I've gone through, the things my mom has gone through with me. After dealing with so many doctors and tests and living the life of an invalid since 2015, I've come to realize that a lot of who we are is who we tell ourselves we are. Let me rephrase that... If you tell yourself you are brave, then you are. I know from experience it's hard to believe in the power of thought. And I'm not saying you shouldn't feel negative emotions; there is always a time and place for sadness or anger. But never tell yourself you can't do something, because you can.
Can I believe I'm having brain surgery in a week? Not really. I'm a biologist myself and yet it feels unreal. But I believe this is truly the only route for me to go. I have seen the success stories on the internet and I'm ready to add my name to their ranks. Recovery, well, that's a fog of mystery I have no power over. I will just have to trust God to get me through it.
At this point I don't know what I'm writing anymore. My mind is racing with everything I could or should say, so I will just end it here. I plan to post again the day before my operation. Thank you to those who take the time to read my posts and I hope it won't be too long before I'm back on the internet again.
Tuesday, March 12, 2019
3 Weeks Pre-op
Well, I'm now three weeks away from surgery. I don't have a lot of answers as far as official pre/post instructions, but I have read quite a bit online about what to expect. Recovery sounds like it can be really rough and honestly I know it's going to be quite a journey to becoming "normal" again; but then, my life now is far from normal.
For those who don't know, pineal cyst surgery is somewhat "controversial" because neurologists haven't yet been able to explain why the pineal cyst would cause pain. However, for those who have the surgery done, 90% of people with terrible symptoms have their symptoms resolved afterwards. The other 10% see a reduction in their symptoms. Personally I think those are great odds. There are many success stories online that really give me hope as I take this huge step.
If you're interested in watching a video by a neurosurgeon who does the surgery, here is a good link:
http://musc.bcst.md/videos/resection-of-pineocytomas-offers-symptom-relief
Dr. Patel is one of the few doctors around the world who believes pineal cysts CAN cause bad symptoms and performs this surgery to help people regain their lives. There is also a doctor in Houston who does about 50 of these a year. The surgeon who will be operating on me is well-known even outside the US and has had people come to him from as far as Canada, maybe even farther.
In the past few years I had doctors tell me it was basically time to give up, to accept this as the rest of my life. One doctor, as I was sitting in his office in tears because my pain was so bad, told me I needed counseling. (Which I subsequently did, by the way, to cover all my bases.) It's unbelievable how arrogant and uncompassionate some doctors are. But I am so grateful to have found just one who can give me hope and who treated me with respect and kindness.
Next week I have pre-op testing. In the coming weeks I will try to post a few more times, and then once the surgery comes around, I will ask my mom to post for me. I will be off screens for 1-2 weeks at least. Thanks to those who take the time to read and I hope the video answers some questions, if you had any.
For those who don't know, pineal cyst surgery is somewhat "controversial" because neurologists haven't yet been able to explain why the pineal cyst would cause pain. However, for those who have the surgery done, 90% of people with terrible symptoms have their symptoms resolved afterwards. The other 10% see a reduction in their symptoms. Personally I think those are great odds. There are many success stories online that really give me hope as I take this huge step.
If you're interested in watching a video by a neurosurgeon who does the surgery, here is a good link:
http://musc.bcst.md/videos/resection-of-pineocytomas-offers-symptom-relief
Dr. Patel is one of the few doctors around the world who believes pineal cysts CAN cause bad symptoms and performs this surgery to help people regain their lives. There is also a doctor in Houston who does about 50 of these a year. The surgeon who will be operating on me is well-known even outside the US and has had people come to him from as far as Canada, maybe even farther.
In the past few years I had doctors tell me it was basically time to give up, to accept this as the rest of my life. One doctor, as I was sitting in his office in tears because my pain was so bad, told me I needed counseling. (Which I subsequently did, by the way, to cover all my bases.) It's unbelievable how arrogant and uncompassionate some doctors are. But I am so grateful to have found just one who can give me hope and who treated me with respect and kindness.
Next week I have pre-op testing. In the coming weeks I will try to post a few more times, and then once the surgery comes around, I will ask my mom to post for me. I will be off screens for 1-2 weeks at least. Thanks to those who take the time to read and I hope the video answers some questions, if you had any.
Wednesday, February 27, 2019
My Story
This is from a post I shared on Facebook. I am sharing it on here so that people can find it easily when it gets lost among other posts on Facebook. I know there may be those who missed seeing this post the first time around.
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I
know many of you have been praying for and thinking about me lately,
probably wondering what's going on with my health these days. This post
is long so thanks in advance for reading.
You may or may not know that for over 15 years, I've had a chronic headache that never goes away. For many years it was mostly tolerable and I was able to live a relatively normal life. However, in 2015 the pain suddenly became severe without any reason, and I began seeking help.
An MRI later in 2015 showed that I had two things: a pineal cyst, which is considered benign and (I was told) 99.9% of the time doesn't cause symptoms, and an aneurysm. The neurologist went inside my brain (cerebral angiogram) and discovered that there was no aneurysm, it was in fact just an oddly-shaped blood vessel. Everything looked normal to him and I was left with no idea where to go next.
In 2016 I reached my low point. I felt like this was my life, I was going to be in horrible pain every day forever. I was ready to give up on myself, but God wasn't. He, and my close family, gave me the strength to take each day one at a time to get to a better place.
From then until 2018, I lost 80 lbs, and I met with many doctors (19 as of today) and tried many treatments. Anything someone might suggest for headaches, I've tried. Counseling, prescription medication of many varieties, meditation, Chinese herbs, acupuncture, CBD oil, exercise, diet changes, books on pain; you name it, I've tried it. NOTHING has touched my pain.
I should also mention that my symptoms have grown just in the past six months. I can only drive short distances now as I have developed severe eye pain when moving my eyes back and forth or looking at even dim lights.
About a year ago, my mom was praying, and God spoke two words to her: pineal cyst. So she began to research on her own. What she found was astonishing: people with my exact set of symptoms, including vision & sleep disturbances, who all had one thing in common, which was (surprise) a pineal cyst. Turns out for the 0.01% of people who have symptoms, they are devastating.
The treatment for a pineal cyst is surgery. It is a highly successful surgery but is only performed by a small list of surgeons. Yesterday I saw a 3rd neurosurgeon. This man listened to what I had to say and (unlike the first two I saw) recognized that the surgery is the next step for me. I am completely confident in his skills as he has done this surgery many times, including as recently as this week and last.
So I am scheduled for surgery on April 3rd. I will be in the hospital for 2-3 days, then home for recovery. Some people take up to 2-6 months to fully recover. This is a big thing and I don't take it lightly, but I hope if you read this far, you can understand that this is the only option left for me if I want to have a chance at a normal life.
Thank you if you did read all of this and thank you in advance of the prayers I know will be prayed. If you have any questions feel free to ask, I may choose to answer in a private message if I don't want to discuss it here.
You may or may not know that for over 15 years, I've had a chronic headache that never goes away. For many years it was mostly tolerable and I was able to live a relatively normal life. However, in 2015 the pain suddenly became severe without any reason, and I began seeking help.
An MRI later in 2015 showed that I had two things: a pineal cyst, which is considered benign and (I was told) 99.9% of the time doesn't cause symptoms, and an aneurysm. The neurologist went inside my brain (cerebral angiogram) and discovered that there was no aneurysm, it was in fact just an oddly-shaped blood vessel. Everything looked normal to him and I was left with no idea where to go next.
In 2016 I reached my low point. I felt like this was my life, I was going to be in horrible pain every day forever. I was ready to give up on myself, but God wasn't. He, and my close family, gave me the strength to take each day one at a time to get to a better place.
From then until 2018, I lost 80 lbs, and I met with many doctors (19 as of today) and tried many treatments. Anything someone might suggest for headaches, I've tried. Counseling, prescription medication of many varieties, meditation, Chinese herbs, acupuncture, CBD oil, exercise, diet changes, books on pain; you name it, I've tried it. NOTHING has touched my pain.
I should also mention that my symptoms have grown just in the past six months. I can only drive short distances now as I have developed severe eye pain when moving my eyes back and forth or looking at even dim lights.
About a year ago, my mom was praying, and God spoke two words to her: pineal cyst. So she began to research on her own. What she found was astonishing: people with my exact set of symptoms, including vision & sleep disturbances, who all had one thing in common, which was (surprise) a pineal cyst. Turns out for the 0.01% of people who have symptoms, they are devastating.
The treatment for a pineal cyst is surgery. It is a highly successful surgery but is only performed by a small list of surgeons. Yesterday I saw a 3rd neurosurgeon. This man listened to what I had to say and (unlike the first two I saw) recognized that the surgery is the next step for me. I am completely confident in his skills as he has done this surgery many times, including as recently as this week and last.
So I am scheduled for surgery on April 3rd. I will be in the hospital for 2-3 days, then home for recovery. Some people take up to 2-6 months to fully recover. This is a big thing and I don't take it lightly, but I hope if you read this far, you can understand that this is the only option left for me if I want to have a chance at a normal life.
Thank you if you did read all of this and thank you in advance of the prayers I know will be prayed. If you have any questions feel free to ask, I may choose to answer in a private message if I don't want to discuss it here.
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