Ok, first of all, I'm sorry for taking so long to get the results published. So, we had my appt last Tuesday, and went to Dr. Mapstone at Oklahoma University Medical Center. He is actually a pediatric neurosurgeon who also specializes in adults with chiari and syrinxes. He took a look at my MRI films and said that the first thing is he wants to get 2 more MRIs, of my Thoracic and Lumbar spine. He said that 10% of individuals with Chiari, also have a tethered spinal cord. That is basically where the spinal cord has attached to the vertebrae, and this is actually pulling the cerebral tonsils down into the spinal canal. So, I have that MRI scheduled for May 7th, the Monday before we go back to O'Fallon for my niece's graduation. Hopefully they will call me before and/or while I'm in O'Fallon so I can fill everyone in while I'm there. Other than the additional MRIs, he said that the syrinx concerns him, however since I'm not exhibiting any symptoms and they syrinx is so small, he doesn't feel that surgery is a necessity at this point. So that was good news, at least we knew that we had options.
So, armed with this new information, we talked about things a little more after this appointment. We've actually decided that we are going to go ahead with the surgery for a few reasons. Without the surgery, I feel like I would be living life waiting for symptoms to occur, and each and every little thing, I would worry about. In addition, we are in a position right now that would make surgery easier than if we waited. We are in a location where there are plenty of neurosurgeons nearby, including the chiari specialist. A year from now, who knows where we might be, we may be very limited on our neurosurgeon options. We also have a great deal of family in the immediate area, and a significant number more within a days drive. This could potentially change dramatically with our next assignment. The last influencing factor, is insurance. If we were to wait, and I needed surgery after I got out of the military, the insurance question would be up in the air. Whereas right now, Tricare covers EVERYTHING. I don't have to worry about being out of work for 2 months without pay, and I don't have to worry about any copays. I realize, cost is an awful reason to consider having brain surgery, but it has to factor in to an extent. This alone, I'm not sure would push me to surgery, but this in conjunction with everything else, it just seems like the right thing for us to do.
We are still waiting to get the results of the MRIs on the 7th, as findings from those may influence things as well. Once I get the results from this, I will also hopefully find out if the specialist is willing to do the surgery, or if we will have to consider going back to Dr. Robertson. Hopefully we will also be able to schedule the surgery at that point. Definitely more to come on that.
Sunday, April 29, 2012
Sunday, April 22, 2012
Decision on 2nd opinion
So, after discussing things with Tish and my primary care doctor, Tish and I decided to get a second opinion. Of course, the toughest part is dealing with the insurance company. I did an online search for chiari specialists in the Oklahoma City area, and found a doctor at Oklahoma University Medical Center. The next step was that I went to the Tricare website to see if he was a network provider, and of course they didn't list him. So, I decided to give him a call anyway and ask his office directly. Turns out they do accept Tricare, so I'm not sure if they charge more than your random strip mall neurosurgeons that they sent me to or what, but for some reason they don't like to let people know he takes Tricare. Anyway, after talking with my PCM, she got me a referral to the specialist....which turns out to be a pediatric neurosurgeon that also specializes in adults with chiari and syrinxes. So, my first appt with Dr. Mapstone is this coming Tuesday. Not sure what I'm hoping for....On one side, he might say I don't need the surgery right away, but then I would still risk further injury or deterioration. On the other side, if he agrees that I need surgery, I'd have a second option for the surgery, and a chiari specialist at that.
My headaches have been getting more frequent, luckily the severity is still pretty low, about a 3 on the pain scale, and 800 mg of motrin usually takes care of it pretty quickly. They are occurring about 4-5 days a week now, sometimes multiple times a day. Still no concerns with numbness or tingling other than 2-3 times since my diagnosis. My current NS thinks those instances are unrelated to the chiari, so we will see what the specialist has to say. I'm sure I'll post some more after the appointment on Tuesday. I'll let you all know.
My headaches have been getting more frequent, luckily the severity is still pretty low, about a 3 on the pain scale, and 800 mg of motrin usually takes care of it pretty quickly. They are occurring about 4-5 days a week now, sometimes multiple times a day. Still no concerns with numbness or tingling other than 2-3 times since my diagnosis. My current NS thinks those instances are unrelated to the chiari, so we will see what the specialist has to say. I'm sure I'll post some more after the appointment on Tuesday. I'll let you all know.
Monday, April 9, 2012
Thoughts on Work
So, I estimated today at work that my concentration was maybe 50%. Everyone assumed that my pain level was that high, although I did have a headache all day, that was the least of my concern. It's knowing that I'm going to have to have surgery. I play it down quite a bit, mainly because what else am I supposed to do. When I wake up in the morning, I think about the looming surgery....when I go to sleep at night, I think about the looming surgery. Not just the surgery itself, but what's going to happen after the surgery. How will my recovery be? Will there be any complications? Will my family be alright while I'm laid up and not able to do anything? How long will I be in the hospital? Will everything be taken care of at work? Will I be returning to a complete disaster after the surgery? Will I be able to stay in the military after surgery? Will the surgery help? Will I have to go through a Medical Evaluation Board (MEB)? Will I be on a permanent profile for running? Will I still be worldwide qualified? Will I ever be able to deploy with Chiari? Will the syrinx resolve itself, or will I have it for the rest of my life?
As you can see, the pain is the least of my worries right now. Unfortunately, I won't know the answer to most of these questions until after the surgery. So, for now, I just vent on here, and press on. I have decided that beginning in May, I will be taking quite a bit of leave to spend time with the family, and get some honey-dos done before I'm laid up for a month or two. Luckily, the Air Force provides that extended leave, and my leadership is great and very understanding about what is going on for me.
I have an appt with my primary care manager tomorrow morning to get her take on things, then an appt on Wednesday with a neurologist. I'm anticipating both of them saying that surgery is my best option since that is what I've read online, particularly with the syrinx. If that is the recommendations I get, I will schedule a follow-up with my neurosurgeon to schedule the surgery and get some last questions answered. I will keep you all informed when I find out more.
As you can see, the pain is the least of my worries right now. Unfortunately, I won't know the answer to most of these questions until after the surgery. So, for now, I just vent on here, and press on. I have decided that beginning in May, I will be taking quite a bit of leave to spend time with the family, and get some honey-dos done before I'm laid up for a month or two. Luckily, the Air Force provides that extended leave, and my leadership is great and very understanding about what is going on for me.
I have an appt with my primary care manager tomorrow morning to get her take on things, then an appt on Wednesday with a neurologist. I'm anticipating both of them saying that surgery is my best option since that is what I've read online, particularly with the syrinx. If that is the recommendations I get, I will schedule a follow-up with my neurosurgeon to schedule the surgery and get some last questions answered. I will keep you all informed when I find out more.
Saturday, March 31, 2012
What is decompression
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.
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.
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.
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