My life has been incredibly busy these past few months due to a dear family member who had been ill. It took a comment from a reader of this blog for me to realize that I hadn't updated in a long, long time.
An update on what has happened since I found out about my syrinx:
I started having crazy jerking motions all the time preceded by strange, strange sensations. The neurologist finally figured out I had herniated disks in my neck and sent me to physical therapy. The PT cured the pain.
The docs didn't know what was causing all of the jerking motions my neck, chest, and legs were doing. They ran a bunch of tests and determined that I wasn't having seizures. 2400 mg of gabapentin and 30 mg of baclofen per day have made the jerking motions manageable.
I no longer have hundreds of them a day. They are called myoclonic jerks, and are harmless. They make me tired when I have them, but are not anything more than a hassle now.
The biggest news is about the syrinx. I had my 6 month MRI, and it hasn't gotten any bigger. The neurosurgeon said that it isn't big enough to be a concern, but that he wants me to have another MRI in a year. In fact, in this most recent MRI, the syrinx didn't show up in most of the MRI views like it had in the MRI I had six months ago.
My vantage point is becoming clearer now that I have found some relief. I'm hoping the fog continues to lift.
Showing posts with label syrinx. Show all posts
Showing posts with label syrinx. Show all posts
Tuesday, February 28, 2012
Thursday, July 28, 2011
Contrast
My MRI with contrast came back showing no tumors, as I mentioned in yesterday's post. I will need to go back in another 6 months to have another one done to make sure there still aren't tumors.
My mood today has been one of extreme contrast too. I'm happy there are no tumors, but I have anxiety about what is going on with me.
I wish I knew the cause, especially when my medicine wears off and I start the jolts/spasms/twitches all over again. I'm tired today.
But, I don't think I'm supposed to know the cause yet or I would already know it. Trust. I must tell myself to trust. Trust God. Trust the doctors. Trust my own knowledge of my limitations.
Of course, I saw contrast a lot today too. The following were from my drive home. I left work somewhat early because today is my husband's birthday.
Today's lesson, I think, is patience. I'll know when I'm supposed to know. In the meantime, I'll just need to learn to weather it out.
The other lesson is that I can't ignore God anymore. He's everywhere. I ran away from Him for a long time. But, as these images show, He's made Himself hard for me to ignore. I felt like the sky was opening up with brightness. I had to pull my car over to watch. The tug at me was too strong to continue driving without stopping.
Peace and hugs,
Jen
My mood today has been one of extreme contrast too. I'm happy there are no tumors, but I have anxiety about what is going on with me.
I wish I knew the cause, especially when my medicine wears off and I start the jolts/spasms/twitches all over again. I'm tired today.
But, I don't think I'm supposed to know the cause yet or I would already know it. Trust. I must tell myself to trust. Trust God. Trust the doctors. Trust my own knowledge of my limitations.
Of course, I saw contrast a lot today too. The following were from my drive home. I left work somewhat early because today is my husband's birthday.
Today's lesson, I think, is patience. I'll know when I'm supposed to know. In the meantime, I'll just need to learn to weather it out.
The other lesson is that I can't ignore God anymore. He's everywhere. I ran away from Him for a long time. But, as these images show, He's made Himself hard for me to ignore. I felt like the sky was opening up with brightness. I had to pull my car over to watch. The tug at me was too strong to continue driving without stopping.
Peace and hugs,
Jen
Wednesday, July 27, 2011
The Sun Sets on My Anxiety Over Some Things
I found out today that I don't have tumors in my cervical spine.
Yay! This was a, "just in case," MRI. Now, I just get to go back in 6 months to make sure I STILL don't have tumors and that this is a so called incidental find that I have fluid inside my spine where it is not supposed to be.
Amen.
Yay! This was a, "just in case," MRI. Now, I just get to go back in 6 months to make sure I STILL don't have tumors and that this is a so called incidental find that I have fluid inside my spine where it is not supposed to be.
Amen.
Saturday, July 23, 2011
C3-4 No, Good Things in Life Come in Threes
I am told one of my bulging discs is in C3-4. Today's quest for beauty was to find wonderful things in threes.
Snail family. Yay!
Pink Flowers
Purple Flowers
Ok, so the last one isn't a three type of picture. The spinal surgeon told me yesterday that my syrinx is probably something that is a part of how God made me. He said it probably won't get worse but that he's ordering tests to rule out other bad stuff. This last image was one I captured today outside of church. This is the way this flower came out. It is different from the others. I looked three times to make sure the petals were two different colors coming out of the same flower rather than a different bloom behind it.
Peace and hugs,
Jen
Snail family. Yay!
Pink Flowers
Purple Flowers
Ok, so the last one isn't a three type of picture. The spinal surgeon told me yesterday that my syrinx is probably something that is a part of how God made me. He said it probably won't get worse but that he's ordering tests to rule out other bad stuff. This last image was one I captured today outside of church. This is the way this flower came out. It is different from the others. I looked three times to make sure the petals were two different colors coming out of the same flower rather than a different bloom behind it.
Peace and hugs,
Jen
Thursday, July 7, 2011
Can a syrinx just be a cool name for a cat?
Damn, I have to make a note and put it somewhere in my brain that a syrinx and a sphynx aren't the same thing. I keep spelling both words incorrectly. I learned today that I have two bulging discs in my cervical spine as well as a small syrinx, which is a fluid filled cyst inside my spine. I have googled the hell out of syrinxes, Syringomyelia, and other key words. In case you have no idea what I'm writing about, I'll give you a clue, it has nothing to do with Styx. Get that song out of your head.
I recommend http://www.asap.org/handbook.pdf and http://www.asap.org/forum/viewforum.php?f=3.
The problem I now face is that I haven't had an appointment yet with the doctors who can tell me about MY syrinx. So, maybe I'll just think about the Great Sphinx in Egypt and sphincters and sinks. It's no wonder I can't spell this scary new word correctly. SYRINX, SYRINX, SYRINX. There. I typed it three times.
I prefer not to think about it.
Instead, I'll think about all the things I was able to do today:
I worked.
I walked.
I felt my hot coffee mug as I drank coffee. And then more coffee, and then some red chai with Sweet and Lo (Because I'm trying to cut down on my Aspertame consumption. Long story).
Mmm... coffee and chai.
Chai tea reminds me of the other word I keep coming across. Chairi Malformation. I don't have this. Lots of people who have syrinxes have a Chairi Malformation. I shall think, hope, and pray for all of them every time I drink chai tea.
I shall call this day One of my Vantage Point. I will forget (ok, ignore... ok, stomp down and scream violently at the thing inside my spinal cord) the pain and focus on positive things.
Today, I am me. I did all the normal things that I would normally do such as go to work, drive home, visit with family members, and avoid housework.
I do rather like avoiding housework. My Vantage Point is that I will continue this particular ritual religiously until I can't stand not doing housework any longer.
Yes, today is Day One but not Day One of any condition or future troubles. Today is Day One of my continued avoidance of housework.
Isn't that better than thinking about the sphincter muscles of a sphynx sitting by a sink listening to Styx?
Words will be my therapy for awhile. Bear with me as I travel this road, even if I eventually have to be dragged down it.
Happy Thursday. Peace and hugs,
Jen
I recommend http://www.asap.org/handbook.pdf and http://www.asap.org/forum/viewforum.php?f=3.
The problem I now face is that I haven't had an appointment yet with the doctors who can tell me about MY syrinx. So, maybe I'll just think about the Great Sphinx in Egypt and sphincters and sinks. It's no wonder I can't spell this scary new word correctly. SYRINX, SYRINX, SYRINX. There. I typed it three times.
I prefer not to think about it.
Instead, I'll think about all the things I was able to do today:
I worked.
I walked.
I felt my hot coffee mug as I drank coffee. And then more coffee, and then some red chai with Sweet and Lo (Because I'm trying to cut down on my Aspertame consumption. Long story).
Mmm... coffee and chai.
Chai tea reminds me of the other word I keep coming across. Chairi Malformation. I don't have this. Lots of people who have syrinxes have a Chairi Malformation. I shall think, hope, and pray for all of them every time I drink chai tea.
I shall call this day One of my Vantage Point. I will forget (ok, ignore... ok, stomp down and scream violently at the thing inside my spinal cord) the pain and focus on positive things.
Today, I am me. I did all the normal things that I would normally do such as go to work, drive home, visit with family members, and avoid housework.
I do rather like avoiding housework. My Vantage Point is that I will continue this particular ritual religiously until I can't stand not doing housework any longer.
Yes, today is Day One but not Day One of any condition or future troubles. Today is Day One of my continued avoidance of housework.
Isn't that better than thinking about the sphincter muscles of a sphynx sitting by a sink listening to Styx?
Words will be my therapy for awhile. Bear with me as I travel this road, even if I eventually have to be dragged down it.
Happy Thursday. Peace and hugs,
Jen
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