We spent three and a half hours at the Wilmer Eye Institute at Hopkins today. Dr. Neil Miller, probably one of two or three top neuro-ophthalmologists in the country, said, "Ms Scott, I have no clue what's going on with you." It's weird -- when these geniuses say things like this, I almost feel proud of myself, as if I've outwitted them, somehow.
The good news is that the measurements they took of my double vision confirm what I thought, which is that it has improved since the first measurement they made back on April 12. Unfortunately, as far as I know, that improvement happened just before the surgery and nothing's really happened since then. Still, the measurement is nearly 80% better. I'll take that -- although, as Dr. Miller said, it's kind of irrelevant in a way -- my vision is still doubled, and therefore my functioning impaired, even if it's 80% "less double."
Anyway, the current plan is to go back to Dr. Miller on July 17, unless my eyes get worse between now and then (the thought is that it might, if the improvement was due to treatment with steroids that i received until last Wednesday).
The echocardiogram, meanwhile, came out clean -- nothing wrong with my heart, which is what I thought.
Tonight I am completely exhausted and my eyes hurt. So I'm going to close -- thanks for your good wishes.
Anne
30 April 2007
26 April 2007
You'll Never Guess What
Hello, friends -- sorry I've been absent, but you might agree that this time I really have a pretty good excuse . . . . let me explain. No, too long. Let me sum up . . . .
On March 17, Dave & I learned, much to our joy, that I am pregnant. A wonderful, exciting thing only slightly marred by the fact that he had to go out of town for work for a week right after we found out so we didn't get to celebrate as thoroughly as we might have otherwise. :)
On Thursday, April 5, I began to experience weakness in my legs when I walked across the room. On April 6, it got worse, and on the morning of Saturday, April 7, I woke up with double vision, with my left hand and arm numb and tingling, and i found myself really unable to walk across the room. We went to the e.r. at Shady Grove Adventist hospital not far from our home. By Sunday my left torso was numb and tingling and i couldn't move my legs in the hospital bed without using my arms to shift them around.
After multilple tests including MRIs, xrays, blood tests and a lumbar puncture, the doctors at Shady Grove confirmed one thing: I was suffering from four cervical disks in my spine in various degrees of degeneration, two of which had ruptured and were causing injury to my spinal cord (the injury was already visible on MRI -- it's called a "signal change") that was probably causing the left side numbness and possibly the leg weakness. Surgery would most likely be necessary.
BUT.
The spine problems did not explain all my symptoms. The double vision, especially, and my problems walking, to some extent, weren't explained by the rupture in my spine -- but nothing in my brain, which is where those problems should originate, was showing up as abnormal. No stroke, no tumor, no lesions on any of the scans. We had a consultation with a neurosurgeon who said that he for one would not operate on my neck until i had undergone a complete neurological workup to diagnose the complete picture. The surgeon implored us to get me to Johns Hopkins as soon as possible.
In all I spent 5 days undergoing tests at Shady Grove, including a lumbar puncture, languishing with painful, shoddy IVs and in a shared room with an old lady with pneumonia. One of the potential diagnoses was Guillain-Barre (sp?) syndrome, a progressive paralysis that, if it were the issue, probably would result in a sudden shutdown of my lungs. I lay in that hospital with minimum nursing care, next to no diagnosis going on, and the constant fear among many others that i would simply stop breathing.
Finally, thanks to my own psychopharmacologist and Dr. Nicholas Maragakis at Hopkins neurology, I got a bed there Wednesday night, April 11. We immediately had a two-hour consult with a neurologist and we were at the opthalmology dept until 1 a.m. Dave and I were both in tears from relief that we had finally reached a place where I would be safe and where they might be able to figure out what is wrong with me.
As it has turned out . . . On April 16, I had two disks removed from my neck and replaced by cadaver bone plugs, and the whole thing fused together. On April 18, I was discharged from Hopkins and sent home, with no diagnosis for whatever else it is that's ailing me. My vision is still doubled (it's called diplopia); my symptoms are really all the same. The physical therapist, thank God, seems fabulous, and she is encouraged that she can help reduce my pain and inflammation, and also improve my left hand/side and my walking. It's only just begun, this journey I'm on, but at least it's moving forward.
The actual surgery site, the incision (which is just glued - no sutures - very weird) and my neck really aren't that bad. A little achy and stiff, but not bad -- kind of amazing technology. There is also apparently no reason to think that the pregnancy isn't tooling along just fine -- although i'll admit that it's hard for me to focus on that right now given everything. We have our first normal prenatal appt on May 11. On Monday I'll follow up with Dr. Neil Miller at Hopkins' Wilmer Eye Institute, and i have an echocardiogram scheduled just to make sure my heart isn't having any problems with any of this. . . . On May 30 I follow up with the neurosurgeon, Dr. Witham, and with Dr. Maragakis.
I'm not doing so great at typing or seeing, for that matter, so i'm going to close now. those of you who visit the Almanac will at least know what's going on with me now. I miss everybody, so if you want to call or write, do!!
More soon.
On March 17, Dave & I learned, much to our joy, that I am pregnant. A wonderful, exciting thing only slightly marred by the fact that he had to go out of town for work for a week right after we found out so we didn't get to celebrate as thoroughly as we might have otherwise. :)
On Thursday, April 5, I began to experience weakness in my legs when I walked across the room. On April 6, it got worse, and on the morning of Saturday, April 7, I woke up with double vision, with my left hand and arm numb and tingling, and i found myself really unable to walk across the room. We went to the e.r. at Shady Grove Adventist hospital not far from our home. By Sunday my left torso was numb and tingling and i couldn't move my legs in the hospital bed without using my arms to shift them around.
After multilple tests including MRIs, xrays, blood tests and a lumbar puncture, the doctors at Shady Grove confirmed one thing: I was suffering from four cervical disks in my spine in various degrees of degeneration, two of which had ruptured and were causing injury to my spinal cord (the injury was already visible on MRI -- it's called a "signal change") that was probably causing the left side numbness and possibly the leg weakness. Surgery would most likely be necessary.
BUT.
The spine problems did not explain all my symptoms. The double vision, especially, and my problems walking, to some extent, weren't explained by the rupture in my spine -- but nothing in my brain, which is where those problems should originate, was showing up as abnormal. No stroke, no tumor, no lesions on any of the scans. We had a consultation with a neurosurgeon who said that he for one would not operate on my neck until i had undergone a complete neurological workup to diagnose the complete picture. The surgeon implored us to get me to Johns Hopkins as soon as possible.
In all I spent 5 days undergoing tests at Shady Grove, including a lumbar puncture, languishing with painful, shoddy IVs and in a shared room with an old lady with pneumonia. One of the potential diagnoses was Guillain-Barre (sp?) syndrome, a progressive paralysis that, if it were the issue, probably would result in a sudden shutdown of my lungs. I lay in that hospital with minimum nursing care, next to no diagnosis going on, and the constant fear among many others that i would simply stop breathing.
Finally, thanks to my own psychopharmacologist and Dr. Nicholas Maragakis at Hopkins neurology, I got a bed there Wednesday night, April 11. We immediately had a two-hour consult with a neurologist and we were at the opthalmology dept until 1 a.m. Dave and I were both in tears from relief that we had finally reached a place where I would be safe and where they might be able to figure out what is wrong with me.
As it has turned out . . . On April 16, I had two disks removed from my neck and replaced by cadaver bone plugs, and the whole thing fused together. On April 18, I was discharged from Hopkins and sent home, with no diagnosis for whatever else it is that's ailing me. My vision is still doubled (it's called diplopia); my symptoms are really all the same. The physical therapist, thank God, seems fabulous, and she is encouraged that she can help reduce my pain and inflammation, and also improve my left hand/side and my walking. It's only just begun, this journey I'm on, but at least it's moving forward.
The actual surgery site, the incision (which is just glued - no sutures - very weird) and my neck really aren't that bad. A little achy and stiff, but not bad -- kind of amazing technology. There is also apparently no reason to think that the pregnancy isn't tooling along just fine -- although i'll admit that it's hard for me to focus on that right now given everything. We have our first normal prenatal appt on May 11. On Monday I'll follow up with Dr. Neil Miller at Hopkins' Wilmer Eye Institute, and i have an echocardiogram scheduled just to make sure my heart isn't having any problems with any of this. . . . On May 30 I follow up with the neurosurgeon, Dr. Witham, and with Dr. Maragakis.
I'm not doing so great at typing or seeing, for that matter, so i'm going to close now. those of you who visit the Almanac will at least know what's going on with me now. I miss everybody, so if you want to call or write, do!!
More soon.
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