So, I've had many people ask me what the surgery entails. My wife has done alot more research than what I have, so maybe I'll see if she'll come on here and correct anything I mispoke on. In the meantime, I'll at least explain what my NS has said he is going to do.
First option, I'm not sure how the NS explain the difference, but I'm going to call the first option a partial decompression. This is what my NS said he will start with. This consists of going in through the back of my head. He will make an approximate 5-6 in long incision down the center of the back of my skull. He will then separate the muscles on the back of my skull and find the base of my skull. He will then drill back the bone surrounding the spinal cord and my cerebral tonsils. In addition, he will most likely remove the back half of my C1 and the top back quarter of my C2 vertebrae. This will make the hole at the base of the skull larger, thus providing more space for the spinal cord and the tonsils. This surgery typically takes 2 hours, and will result in 2-3 days in the hospital and 2-3 weeks recovery at home before I'm able to do much of anything.
At that point in the surgery, the NS will conduct an ultrasound of my brain itself to see how much room there is inside the brain lining, the dura, and see how well the spinal fluid is flowing. This is the decision point, if the fluid is flowing well and there is plenty of room, the NS will close up the back of my head, and I'm off to recovery. This results in the back of my head looking like a zipper, hence the zipperheads for chiari group on facebook that I mentioned earlier.
If the fluid isn't flowing well, or there doesn't seem to be enough room inside the dura, further surgery is required. For this portion, will then cut open the dura and create a larger patch to increase the size of the dura, thus giving the brain and spinal fluid more room to flow. This results in a 5-7 day hospital stay and up to 8 weeks of recovery at home. The reason everything is increased so dramatically is due to the increased risk of developing a spinal fluid leak. Straining in any way, such as a cough, sneeze, etc can increase the risk of a fluid leak, so the NS would want me to stay at home and do as little as possible until the dura patch is squared away. This too results in the zipper scar on the back of my head.
As I said, I'm not sure which of these two surgeries will occur. The NS will determine that once he has me opened up and is able to conduct the ultrasound on my brain itself. We don't have a date set or anything like that yet, but once we have more information, I will be sure to create another post.
Saturday, March 31, 2012
MRI and next appt
So the next step was to get an additional MRI
of my cervical spine (C-spine). The NS office ordered the MRI with my
insurance company, but never followed up to ensure that it was approved and
schedule the appt. So, I they call me back, the day before my next appt
and explain that they need to reschedule because the doctor doesn't want to see
me before the next MRI.
I call my insurance, and they say that the NS just needs to call them to
verify and approve the referral. So, they did and rescheduled my appt for
3 weeks later. I went to the MRI, and they printed out the films on the
spot. Tish and I got the films, and took a sneak peak and tried to do
some self diagnosing. We took a look, and saw what we thought was a
syrinx. A syrinx is a pocket of spinal fluid that is forming inside the
spinal cord. These can be very dangerous and lead too much more serious symptoms.
However, since we aren't NS, we decided to wait for the report and the
follow up appt with my NS. We got the report from a radiologist the following Monday, and it
said 5 mm of herniation, and no syrinx. The 5 mm was much different than
the original 17.4 mm, so we weren't sure what to think. We went to the NS
appt this past week, and he confirmed that it is a syrinx. He also said
that it isn't an emergency, but he wouldn't recommend waiting too long before I
have decompression surgery. He said he actually wouldn't wait more than a
month or two.
Perfect time, as we have my niece's college graduation in May and a wedding,
which I'm in, in June. We asked him if mid to late June would be a safe
waiting period, and he said that it shouldn't be a problem. As of now, it looks like I will be having at least partial decompression in the middle to end of June this year. I'm a little freaked out, but I do think it helps that Tish and I were somewhat expecting this outcome, and did plenty of research ahead of time. With that said, I'm sure that once we get closer to the surgery, I will be freaking out quite a bit.
Waiting for the next appt
So, the wait for the MRI and the next appt was full of research. We researched our options, became members of a support group on Facebook called zipperheads for chiari, and also researched dos and don'ts for those with chiari.
With regards to further symptoms, the next two months were full of minor symptoms, but nothing too serious. I had many headaches, originating in the back of my head, just like the original that sent me to the ER. One of these headaches was brought on during a Wing wide run. They put me on a profile to say no running more than a mile, so I didn't have any further headaches from running. I also had some minor numbness and tingling in my feet, elbows and hands over the next two months. I really can't say for sure that all of these were or were not associated with the chiari.
We researched as much as we could, including what to stay away from. We read everything from what our NS told us, such as roller coasters and contact sports. Others online said to avoid physical exertion, wearing helmets, bending at the waist, and even to the point where you should avoid coughing, sneezing, and straining during bowel movements. This one just blew my mind, how am I supposed to avoid coughing???
We also did significant research regarding the surgery, called decompression. Got a much better understanding of what was involved, what types of risks were involved, as well as some of the recovery information for post op recovery, just in case. Our ultimate goal was to be as well prepared for the second appt as possible.
With regards to further symptoms, the next two months were full of minor symptoms, but nothing too serious. I had many headaches, originating in the back of my head, just like the original that sent me to the ER. One of these headaches was brought on during a Wing wide run. They put me on a profile to say no running more than a mile, so I didn't have any further headaches from running. I also had some minor numbness and tingling in my feet, elbows and hands over the next two months. I really can't say for sure that all of these were or were not associated with the chiari.
We researched as much as we could, including what to stay away from. We read everything from what our NS told us, such as roller coasters and contact sports. Others online said to avoid physical exertion, wearing helmets, bending at the waist, and even to the point where you should avoid coughing, sneezing, and straining during bowel movements. This one just blew my mind, how am I supposed to avoid coughing???
We also did significant research regarding the surgery, called decompression. Got a much better understanding of what was involved, what types of risks were involved, as well as some of the recovery information for post op recovery, just in case. Our ultimate goal was to be as well prepared for the second appt as possible.
Begin the doctor's appointments
So, the hospital recommended a Neurosurgeon (NS) for me, but of course they were out of network for my insurance. I contacted my primary care provider to see about a referral for another NS. Since the ER recommended I follow up within 24 hours, I was quite concerned. Luckily, an outstanding nurse helped me out and managed to get a referral pushed through for a NS by 0900 Friday morning (the day after the 8.5 hour ER visit). The catch, the nurse contacted me at 0900, and said the NS would see me, but I needed to be there before noon. Now, 3 hours, no big deal right. Well, I had to have my films from the MRI with me. The hospital where the MRI was done was 20 min from work, and then 20 minutes back to the NS.
Again, at this point, I was starting to freak out. My wife and I had done a little research on Chiari the night before, but still didn't fully understand the impact it would have on our lives.
So, I leave work, drive the 20 minutes to pick up the MRI films and then drive back to the NS office, not sure what to expect. I check in and they call me back. The Dr. does a few motor function tests and then takes a look at a print out of my MRI films. He explained that my cerebral tonsils were herniated 17.4 mm into the spinal canal. He asked what I knew about the Chiari and what questions I had. At this point, like I said, we had done a little research, but not a great deal. I explained that I was still pretty ignorant on the whole thing but did ask him if this was a hereditary thing. He explained that the research was still on-going, but there was no definitive answer one way or the other. He then said that he would like to set up a follow-up appt in 5-6 weeks to see if I had any other symptoms.
Unfortunately, Latischa, my wife, was unable to make this appt due to her school schedule. So, as I'm leaving the nurse tells me that the doctor will be gone the following week, but if Tish or I have any questions that we should feel free to give her a call.
The following Tuesday, Tish and I set up a meeting with the nurse in the NS office. Did we ever have questions. We had done a lot more research over the weekend, and came in with a list of questions for the nurse. What further tests are needed? How often are the doctors appts going to be? How many surgeries has the NS performed for this condition? What were the outcomes of those surgeries? Along with what felt like a hundred others. The Dr. was out of town, but the nurse asked him our questions as soon as she heard from him and provided some answers the next day. It sounded like we were just going to monitor things unless other symptoms showed up.
Again, at this point, I was starting to freak out. My wife and I had done a little research on Chiari the night before, but still didn't fully understand the impact it would have on our lives.
So, I leave work, drive the 20 minutes to pick up the MRI films and then drive back to the NS office, not sure what to expect. I check in and they call me back. The Dr. does a few motor function tests and then takes a look at a print out of my MRI films. He explained that my cerebral tonsils were herniated 17.4 mm into the spinal canal. He asked what I knew about the Chiari and what questions I had. At this point, like I said, we had done a little research, but not a great deal. I explained that I was still pretty ignorant on the whole thing but did ask him if this was a hereditary thing. He explained that the research was still on-going, but there was no definitive answer one way or the other. He then said that he would like to set up a follow-up appt in 5-6 weeks to see if I had any other symptoms.
Unfortunately, Latischa, my wife, was unable to make this appt due to her school schedule. So, as I'm leaving the nurse tells me that the doctor will be gone the following week, but if Tish or I have any questions that we should feel free to give her a call.
The following Tuesday, Tish and I set up a meeting with the nurse in the NS office. Did we ever have questions. We had done a lot more research over the weekend, and came in with a list of questions for the nurse. What further tests are needed? How often are the doctors appts going to be? How many surgeries has the NS performed for this condition? What were the outcomes of those surgeries? Along with what felt like a hundred others. The Dr. was out of town, but the nurse asked him our questions as soon as she heard from him and provided some answers the next day. It sounded like we were just going to monitor things unless other symptoms showed up.
The diagnosis
Well, where to begin. First of all, I've decided to start this blog as a record of everything associated with my journey. It fills three different purposes, first it's a great way to let my friends and family know what's going on through the various doctors appointments and everything else. Second, it is a historical record for me and my family of the journey from start to finish. Lastly, it's a way for me to vent and share what I'm feeling/thinking.
First of all, about two months ago, on a Wednesday night, I came out of the shower and noticed something wasn't right with my vision. It wasn't quite double vision, but something definitely wasn't right. I couldn't exactly pinpoint it, and chalked it up to something going on with my contacts. Shortly after this started, a headache developed in the back of my head, way down at the base near the bottom of my hairline. It was just a minor headache, so I decided to go to bed and assume that it would go away overnight. Of course, I didn't tell my wife, mainly because I didn't think it was a big deal. Of course, she didn't like this idea due to the vision issues as well.
Anyway, I went to bed, not thinking anything more of it. About 0300 in the morning, I woke up and couldn't hardly move. When I would stand up, it would get worse. When I sat down, it got worse. When I laid down, it got worse. I managed to roll out of bed, and make my way, hunched over in pain, to the medicine cabinet to get some motrin (that is the military cure all, 800 mg motrin). I waited about 30-45 minutes just sitting in my recliner, exhausted because I apparently didn't sleep well for the 4 hours I was in bed.
After about 30 minutes, I decided it was time to call the nurse on-call line. Gave them my information, and waited for them to call back. A few minutes after that, my wife comes out of the bedroom and I fill her in. She immediately calls her mom to come over and sit with the kids because she is pretty sure we are going to the hospital since I can hardly walk upright. The nurse line calls back, and after a hundred questions, they recommend me calling 911 and taking an ambulance to the emergency room. Since the emergency room is less than 3 miles away, the wife and I decide that it would take longer for the ambulance to get there than it would for her to just drive me to the ER. Off we go.
We get to the ER at about 0430 and have to sit in the waiting room for a surprisingly short time. Don't get me wrong, surprised, but very thankful. We went back and were triaged pretty quickly, and they took me back to a room that also had optometry equipment, just in case there was something wrong there. They first thought that it was simply a migraine, however I'd never had a history of headaches or migraines. I also wasn't reacting to the bright lights of the ER, so that made them feel it didn't quite fit the template for a migraine.
They first sent me back for a CT scan, checking for major issues in my brain. They didn't see anything out of the ordinary, but even the VERY strong migraine medicine they gave me wasn't completely taking care of the headache. They were still concerned and decided to order an MRI. Unfortunately, the hospital we went to had a problem with their MRI machine, so they had to transport me, via ambulance, to another hospital in their network. So after that, they did the MRI and got the results pretty quickly. The doctor on call in the ER came in and said that I had a condition known as Arnold Chiari Malformation Type 1. I simply asked....in english please. He explained to me that there was a malformation of my skull that is forcing the Cerebral tonsils in my brain to extend down into my spinal canal. This was causing increased pressure on both the spinal cord and the tonsils of the brain. This caused the headache and the vision issues. He recommended me follow up with a Neurosurgeon the next day.
So began my journey.
First of all, about two months ago, on a Wednesday night, I came out of the shower and noticed something wasn't right with my vision. It wasn't quite double vision, but something definitely wasn't right. I couldn't exactly pinpoint it, and chalked it up to something going on with my contacts. Shortly after this started, a headache developed in the back of my head, way down at the base near the bottom of my hairline. It was just a minor headache, so I decided to go to bed and assume that it would go away overnight. Of course, I didn't tell my wife, mainly because I didn't think it was a big deal. Of course, she didn't like this idea due to the vision issues as well.
Anyway, I went to bed, not thinking anything more of it. About 0300 in the morning, I woke up and couldn't hardly move. When I would stand up, it would get worse. When I sat down, it got worse. When I laid down, it got worse. I managed to roll out of bed, and make my way, hunched over in pain, to the medicine cabinet to get some motrin (that is the military cure all, 800 mg motrin). I waited about 30-45 minutes just sitting in my recliner, exhausted because I apparently didn't sleep well for the 4 hours I was in bed.
After about 30 minutes, I decided it was time to call the nurse on-call line. Gave them my information, and waited for them to call back. A few minutes after that, my wife comes out of the bedroom and I fill her in. She immediately calls her mom to come over and sit with the kids because she is pretty sure we are going to the hospital since I can hardly walk upright. The nurse line calls back, and after a hundred questions, they recommend me calling 911 and taking an ambulance to the emergency room. Since the emergency room is less than 3 miles away, the wife and I decide that it would take longer for the ambulance to get there than it would for her to just drive me to the ER. Off we go.
We get to the ER at about 0430 and have to sit in the waiting room for a surprisingly short time. Don't get me wrong, surprised, but very thankful. We went back and were triaged pretty quickly, and they took me back to a room that also had optometry equipment, just in case there was something wrong there. They first thought that it was simply a migraine, however I'd never had a history of headaches or migraines. I also wasn't reacting to the bright lights of the ER, so that made them feel it didn't quite fit the template for a migraine.
They first sent me back for a CT scan, checking for major issues in my brain. They didn't see anything out of the ordinary, but even the VERY strong migraine medicine they gave me wasn't completely taking care of the headache. They were still concerned and decided to order an MRI. Unfortunately, the hospital we went to had a problem with their MRI machine, so they had to transport me, via ambulance, to another hospital in their network. So after that, they did the MRI and got the results pretty quickly. The doctor on call in the ER came in and said that I had a condition known as Arnold Chiari Malformation Type 1. I simply asked....in english please. He explained to me that there was a malformation of my skull that is forcing the Cerebral tonsils in my brain to extend down into my spinal canal. This was causing increased pressure on both the spinal cord and the tonsils of the brain. This caused the headache and the vision issues. He recommended me follow up with a Neurosurgeon the next day.
So began my journey.
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