Well, I had my follow up with my neurosurgeon yesterday the 14th. He said I am good to return to aerobic exercises but still wants me to hold off on weight training for a couple months yet. He did tell me I was good to go back to work on the 20th, as long as I stayed away from the Hazardous Materials. Overall, he seemed very pleased with my recovery. He told me that I won't need to do any physical therapy as "physical therapy for someone as young as me is to go out and do stuff." My next appt with him is in February. I'll have a MRI of both my Cervical and Thoracic spine a week before the appt so they can take a look at the syrinxs. He seemed to think that the syrinxs should be significantly smaller, if not gone completely by that time. We shall see.
Overall, I'd say I do feel somewhat healthier than I did before the surgery. My back doesn't seem to hurt as much or as often, I have had very few headaches since the surgery healing was done, and I'm curious to see how exercising goes. I do have a fitness test next month, but I'm assuming based on my profile that it will be either a waist and walk, or a waist measurement only. At least I don't have to worry about building up my pushups and situps again, since I haven't done anything with my arms or abs for two months.
So, I will be headed back to work on Monday, back to the grind. It's so odd, after being gone for 2, and basically gone for 3 months, I'm not sure what I'll be walking into. I'm sure things will be fine, but there are quite a few new folks in the office, some that have left, and some that are getting ready to leave. The wife and I still haven't decided if we are going to try and get a change of duty station. The scary part for me with that is that I will need to reestablish a neurosurgeon wherever I go from here. That may be a challenge in some locations. Only time will tell.
Overall, I'm very happy with the decision to go ahead with the surgery and am very fortunate that the recovery has gone as well as it has. The best part of this doctor's visit.....I can pick up my children again :)
Wednesday, August 15, 2012
Tuesday, July 3, 2012
2 Weeks Post Operation
So, it is now 2 weeks post surgery, and it's been an up and down ride so far. The first week after I got home, I really didn't move from the recliner except to use the restroom. My wonderful wife kept me well medicated (I'm sure this was more for her than me :) just kidding). I was taking medication at least 4 times a day, and Tish kept it on a pretty tight schedule to keep me in front of the pain. The worst part of the first week was that without moving around, and not getting out of the house, depression crept in very quickly. I felt worthless and felt more like a burden to everyone than anything else. Luckily, that got better pretty quickly. We did get alot of help during the first two weeks after the surgery, and for that, I'm very thankful. We had two meals made for us, one by Ms. Riza McCoy from my work who made a batch of her WONDERFUL lumpia, and one by my boss, LtCol Slagley's family. They made us a wonderful rice and sausage casserole with homeade bread and a delicious apple pie for dessert. Thank you to both of these folks as the meals gave Tish a much needed break. My cousin Brett, also mowed the grass for us this past weekend, which was wonderful (he did a great job by the way) so thank you very much to him as well.
I was recovering quite well and had to go to a funeral visitation on Wednesday of last week. Our family lost a dear friend way too early in life. The funeral was Thursday, but unfortunately I was paying the price for leaving the house and being out in the heat on Wednesday and was unable to make it to the funeral. I didn't learn my lesson and decided to get up and do a bit more around the house last Friday....boy was that a mistake. I was even told by the doctor and nurses that no matter how I feel I need to take it easy. I may feel well enough to get up and about, but that I would pay for it in the end. So after Friday, I was down and out all weekend long. Saturday and Sunday I spent most of the day back in my recliner and trying to keep the pain under control.
Then came Monday the 2nd of July, my follow up with the surgeon's nurse. 13 days after the surgery, I got the sutures removed and got quite a few questions answered. I was told that I'm able to get out of the house as I could tolerate, just to keep in mind that a 20 minute trip outside may cost me 4 hours of rest time at home. I was told by multiple people in the hospital that I was doing remarkably well for being so soon after surgery. I was told that I still can't lift more than 10 pounds for at least the next month, then work my way up from there. I am allowed to help with the housework as tolerated, was able to quit taking my tylenol 3, so I'm not on narcotics anymore. Unfortunately, still no driving for another 2 weeks or so, then I am to stay on side streets until my neck movement has returned to normal. Thankfully, I'm able to do more and more each day, just have to be very careful and listen to my body. While I was at the doctor, I scheduled my next follow up for 14 August where Dr. Mapstone will hopefully give me the green light to return to work. I was also told that at that appt, Dr. Mapstone would schedule another MRI somewhere around 6 months from the surgery and another follow-up shortly after the MRI. If all goes well, and the syrinxes are not growing, I will most likely get an MRI every year followed by another Dr. appt to review the results, and yes, that's for the rest of my life.
After my appt downtown, we went to visit folks at my work. They were quite surprised to see me up and around, much less doing as well as I am. We spent a good 45 minutes there visiting and chatting before we needed to head out and get some lunch. It was a great visit just to see some folks and at least get back that normalcy, even if I'm not allowed to go back to work until 17 August. Unfortunately, it was during the lunch rush, so there were alot of people that weren't there. I'm sure there will be more visits.
That brings us to today, 3 July. Today I was able to do a load of dishes to help the wife out for the first time since the surgery, woohooo!!!! I am so thankful for my wonderful wife and how much she has done for me and our kids over the last two weeks. I have been completely worthless and she has taken on the load gladly to not only take care of EVERYTHING, but also take care of me. Hopefully, tomorrow night I will be able to get out and enjoy some fireworks on the birthday of the United States. All of this has helped me remember just how lucky we are to be living in a great country with so many great people. It also helps me to remember that I'm beginning a new stage in my life, a new birthday per say. Yes, there will be many restrictions on what I can and can't do, but I won't have to worry about each and every symptom that may come my way. It's a great feeling knowing that we took the first strike in the battle. Everyone enjoy your 4th of July.
I was recovering quite well and had to go to a funeral visitation on Wednesday of last week. Our family lost a dear friend way too early in life. The funeral was Thursday, but unfortunately I was paying the price for leaving the house and being out in the heat on Wednesday and was unable to make it to the funeral. I didn't learn my lesson and decided to get up and do a bit more around the house last Friday....boy was that a mistake. I was even told by the doctor and nurses that no matter how I feel I need to take it easy. I may feel well enough to get up and about, but that I would pay for it in the end. So after Friday, I was down and out all weekend long. Saturday and Sunday I spent most of the day back in my recliner and trying to keep the pain under control.
Then came Monday the 2nd of July, my follow up with the surgeon's nurse. 13 days after the surgery, I got the sutures removed and got quite a few questions answered. I was told that I'm able to get out of the house as I could tolerate, just to keep in mind that a 20 minute trip outside may cost me 4 hours of rest time at home. I was told by multiple people in the hospital that I was doing remarkably well for being so soon after surgery. I was told that I still can't lift more than 10 pounds for at least the next month, then work my way up from there. I am allowed to help with the housework as tolerated, was able to quit taking my tylenol 3, so I'm not on narcotics anymore. Unfortunately, still no driving for another 2 weeks or so, then I am to stay on side streets until my neck movement has returned to normal. Thankfully, I'm able to do more and more each day, just have to be very careful and listen to my body. While I was at the doctor, I scheduled my next follow up for 14 August where Dr. Mapstone will hopefully give me the green light to return to work. I was also told that at that appt, Dr. Mapstone would schedule another MRI somewhere around 6 months from the surgery and another follow-up shortly after the MRI. If all goes well, and the syrinxes are not growing, I will most likely get an MRI every year followed by another Dr. appt to review the results, and yes, that's for the rest of my life.
After my appt downtown, we went to visit folks at my work. They were quite surprised to see me up and around, much less doing as well as I am. We spent a good 45 minutes there visiting and chatting before we needed to head out and get some lunch. It was a great visit just to see some folks and at least get back that normalcy, even if I'm not allowed to go back to work until 17 August. Unfortunately, it was during the lunch rush, so there were alot of people that weren't there. I'm sure there will be more visits.
That brings us to today, 3 July. Today I was able to do a load of dishes to help the wife out for the first time since the surgery, woohooo!!!! I am so thankful for my wonderful wife and how much she has done for me and our kids over the last two weeks. I have been completely worthless and she has taken on the load gladly to not only take care of EVERYTHING, but also take care of me. Hopefully, tomorrow night I will be able to get out and enjoy some fireworks on the birthday of the United States. All of this has helped me remember just how lucky we are to be living in a great country with so many great people. It also helps me to remember that I'm beginning a new stage in my life, a new birthday per say. Yes, there will be many restrictions on what I can and can't do, but I won't have to worry about each and every symptom that may come my way. It's a great feeling knowing that we took the first strike in the battle. Everyone enjoy your 4th of July.
The Hospital Stay
So, I was without my computer for a couple days after the surgery, and just haven't really felt like blogging since the surgery....until today. I will warn everyone, it is going to be a long one, lots of stuff to cover. Where to begin, the surgery itself is a blur, I remember being on the bed, them explaining some stuff, then saying I'll see you when I get out to my beautiful wife, and that's about it. Oh, and then them wheeling me into this VERY BRIGHT operating room. They introduced me to everyone in the room, not that I remember any of them. After the surgery, I went to recovery where my wife, sister, mother, and sister-in-law all got to come see me. I specifically told my dad to wait until I was a little more awake to come to the hospital, mainly because I know he likes hospitals as much as I do. I was in recovery for a few hours, then was told, Ok, we're ready to move you to ICU. I thought, oh, that wasn't too bad, but then they told me all the ICU beds were full. 8 hours later, they were finally able to open up an ICU bed, and I was ready to move.
Once I got up to ICU, they scooted me from one bed to the other, and I fully believe that ALL my anesthesia quit working at exactly that point in time. I was in the worst pain I've ever been in during my entire life. I vaguely remember many explitives coming out of my mouth, followed by profuse apologies to the staff and other patients. Although, I'm pretty sure they didn't care and have heard it all many times before. So, while I was in ICU, Tish, Pam, Mom, Dad, and my cousin Brett all came to see me. Thankfully, that was after much of the pain was under control. I was in ICU for almost 2 days when I got the thumbs up to move to a regular room. This was a good thing, it meant the healing was going well, and I'd get to see my kids in a regular room. They weren't allowed in ICU due to an age limit. Unfortunately, once again, all the rooms were full. This time, it took them 12 hours to find a regular room for me.
I finally got moved up and settled into my room. Here is where all the visitors started to show up, all the above came to visit again, along with my kids, Keith and Rosie, my Mother-in-law, MSgt Roe and MSgt Simpson from work. I thank everyone that made it up to see me, I know there were many others that had plans to, but luckily I got out of the hospital MUCH faster than I expected. The surgeon beforehand said 5-7 days, my surgery was on a Tuesday, so I was expecting to get out Monday, maybe Sunday at best. Everything went very well, and I actually got discharged on Saturday. They actually tried discharging me on Friday, but I wanted one more night, just to be safe. While I was in the hospital all the staff was amazing, very helpful, kind, and caring. My room was actually very nice, despite what I was expecting. I was given beautiful flowers/ballons/candy and cards from my Bio Family and my regular family, I thank all of you for the gifts. I also got the "broken butt bear" who had been changed to a "broken head bear" but was strictly told that it was only on loan. As I said, I got released on Saturday the 23rd, my folks and Pam were headed back to Illinois, but made sure to stop by and say goodbye before they left. I came home to a beautiful sign made by my wife and kids that said "Welcome Home Daddy" and yes, it still hangs in our house today. I got in the house and didn't make it much farther than my recliner, unfortunately this would be my home for the next week or so.
Once I got up to ICU, they scooted me from one bed to the other, and I fully believe that ALL my anesthesia quit working at exactly that point in time. I was in the worst pain I've ever been in during my entire life. I vaguely remember many explitives coming out of my mouth, followed by profuse apologies to the staff and other patients. Although, I'm pretty sure they didn't care and have heard it all many times before. So, while I was in ICU, Tish, Pam, Mom, Dad, and my cousin Brett all came to see me. Thankfully, that was after much of the pain was under control. I was in ICU for almost 2 days when I got the thumbs up to move to a regular room. This was a good thing, it meant the healing was going well, and I'd get to see my kids in a regular room. They weren't allowed in ICU due to an age limit. Unfortunately, once again, all the rooms were full. This time, it took them 12 hours to find a regular room for me.
I finally got moved up and settled into my room. Here is where all the visitors started to show up, all the above came to visit again, along with my kids, Keith and Rosie, my Mother-in-law, MSgt Roe and MSgt Simpson from work. I thank everyone that made it up to see me, I know there were many others that had plans to, but luckily I got out of the hospital MUCH faster than I expected. The surgeon beforehand said 5-7 days, my surgery was on a Tuesday, so I was expecting to get out Monday, maybe Sunday at best. Everything went very well, and I actually got discharged on Saturday. They actually tried discharging me on Friday, but I wanted one more night, just to be safe. While I was in the hospital all the staff was amazing, very helpful, kind, and caring. My room was actually very nice, despite what I was expecting. I was given beautiful flowers/ballons/candy and cards from my Bio Family and my regular family, I thank all of you for the gifts. I also got the "broken butt bear" who had been changed to a "broken head bear" but was strictly told that it was only on loan. As I said, I got released on Saturday the 23rd, my folks and Pam were headed back to Illinois, but made sure to stop by and say goodbye before they left. I came home to a beautiful sign made by my wife and kids that said "Welcome Home Daddy" and yes, it still hangs in our house today. I got in the house and didn't make it much farther than my recliner, unfortunately this would be my home for the next week or so.
Monday, June 18, 2012
Tomorrow's the Day
So.....tomorrow is the day. Mom, Dad, and Pam all got into town yesterday. Tish, Amescha and I will all be at the hospital at 0500. Anice will come to the house to stay with the kids, and Mom, Dad, and Pam will come up to the hospital a little later. 0500-0700 will be all the pre-op stuff, paperwork, questions, more questions, and more paperwork. 0700 the surgery begins, and it's expected to last about 2.5 hours. Not sure when my next blog will be, but as soon as I can, I will get on here to do it I'm sure.
As far as right now.....I really think Tish is freaking out quite a bit more than I am. I'm not sure if I have just detached that much, or I have come to the realization that this has to be done. If I don't have it done now, I will have to have it done later. Right now, as I've said before, I have the doctors, the support system, the insurance, the awesome people all around us from family to work family that are here to support us through this. We really couldn't ask for anything more. I'm at the point, I just want it done and press on through the recovery phase. I realize it will be a LONG recovery, as I will be off work and unable to lift more than 5 pounds for 8 weeks, but in the end it will all be worth it. It will be worth it to not worry about what symptom is going to be next, or when I'm going to have my next symptom. The syrinxes are what really scared me, and this surgery should shrink, collapse, or at the very least, prevent them from getting any worse. My surgeon is a specialist and has done MANY of these decompressions in the past. He's also the Chair of the Neurosurgery department at the University of Oklahoma, can't do much better than that.
Tish will keep everyone updated through facebook tomorrow. For now, I'm looking forward to a wonderful dinner with the family.
As far as right now.....I really think Tish is freaking out quite a bit more than I am. I'm not sure if I have just detached that much, or I have come to the realization that this has to be done. If I don't have it done now, I will have to have it done later. Right now, as I've said before, I have the doctors, the support system, the insurance, the awesome people all around us from family to work family that are here to support us through this. We really couldn't ask for anything more. I'm at the point, I just want it done and press on through the recovery phase. I realize it will be a LONG recovery, as I will be off work and unable to lift more than 5 pounds for 8 weeks, but in the end it will all be worth it. It will be worth it to not worry about what symptom is going to be next, or when I'm going to have my next symptom. The syrinxes are what really scared me, and this surgery should shrink, collapse, or at the very least, prevent them from getting any worse. My surgeon is a specialist and has done MANY of these decompressions in the past. He's also the Chair of the Neurosurgery department at the University of Oklahoma, can't do much better than that.
Tish will keep everyone updated through facebook tomorrow. For now, I'm looking forward to a wonderful dinner with the family.
Friday, May 18, 2012
Surgery Date
So, had a couple gut checks today. We did get a firm surgery date, I will be going under the knife 19 June and Dr. Mapstone will be performing the surgery. On Monday, I have to call to schedule my pre-op appointment for the 12th or the 13th. That is apparently going to be a 2-3 hour appt to get cleared by blood work and the anesthesiologist. Then I will have to go in for the surgery at 0500 on the 19th for the surgery that starts at 0700. So, here comes the first of the gut checks, the surgery will be 2-2.5 hours long, once done I will go into recovery to get out of anesthesia, then I will go into ICU for a "couple days". I was expecting a day in the ICU, but apparently it's longer than I thought. In addition, there is most likely an age limit for visitors in the ICU, so the kids probably won't be able to visit. This is probably a good thing, not sure that I will want them seeing me in the condition I'll be in. After I get out of ICU, I will spend a couple more days in the hospital, then get to go home for the long recovery.
I'm taking quite a bit of leave leading up to the surgery. We just got back from Carbondale for my niece's graduation, and then we have a wedding the 9th of June. We've got friends coming into town the first weekend in June. And I wanted to take some time to get some stuff done around the house (hopefully, I'll use the time to get stuff done instead of just sitting on my arse). Basically it boils down to working one day a week until the surgery (man I love the military). Enter gut check number two....I looked at the calendar today at work and realized that means I only have 3 more days of work until the surgery. I will be at work the 24th, 1st, and 18th, between the 1st and 18th, I will have to be on leave for the weekend anyway so I just took both full weeks. It's starting to sink in a little more that I'm going to be having brain surgery a month from now. I won't lie, starting to freak out a little bit, but know in the long run, I have to have it done.
Luckily, for the surgery, my wife and I have a great support system. My mom, dad, and sister will be coming down from Illinois to be with us/help out in any way they can. My sister-in-law and mother-in-law have already requested the day off from work, so they too will be there to support us/Tish during the surgery. My office and cousin who lives in OKC have already offered to help in any way they can, whether it be mowing the grass, making meals, etc. For that, we are very grateful and very fortunate.
I'm really hoping things stay good at work, I'd really hate to come back after being out for 2 months to a gigantic cluster. I realize that will be the least of my worries a month from now, but right now it's one thing that helps keep my mind off of things.
I'm taking quite a bit of leave leading up to the surgery. We just got back from Carbondale for my niece's graduation, and then we have a wedding the 9th of June. We've got friends coming into town the first weekend in June. And I wanted to take some time to get some stuff done around the house (hopefully, I'll use the time to get stuff done instead of just sitting on my arse). Basically it boils down to working one day a week until the surgery (man I love the military). Enter gut check number two....I looked at the calendar today at work and realized that means I only have 3 more days of work until the surgery. I will be at work the 24th, 1st, and 18th, between the 1st and 18th, I will have to be on leave for the weekend anyway so I just took both full weeks. It's starting to sink in a little more that I'm going to be having brain surgery a month from now. I won't lie, starting to freak out a little bit, but know in the long run, I have to have it done.
Luckily, for the surgery, my wife and I have a great support system. My mom, dad, and sister will be coming down from Illinois to be with us/help out in any way they can. My sister-in-law and mother-in-law have already requested the day off from work, so they too will be there to support us/Tish during the surgery. My office and cousin who lives in OKC have already offered to help in any way they can, whether it be mowing the grass, making meals, etc. For that, we are very grateful and very fortunate.
I'm really hoping things stay good at work, I'd really hate to come back after being out for 2 months to a gigantic cluster. I realize that will be the least of my worries a month from now, but right now it's one thing that helps keep my mind off of things.
Monday, May 7, 2012
Thoracic and Lumbar Spine MRIs
Okay, so I went to get MRIs of my lumbar and thoracic spine today. All I can say is that I'm glad I sought out the Chiari specialist. He is the one that ordered the additional MRIs, and the images were quite astounding. Now, first of all, I want to say that all you are about to read are self diagnosed. I hope to hear from the NS later this week. I got the MRI images on a CD so I can take them home with me this weekend so the family can see them. I'm going to post 4 of the images in this blog, just so everyone has an idea what I'm talking about. What I believe we found was 2 additional syrinxes. In this first image, you can see the spine, which is the dark gray area where you would expect it. You can see the syrinxes (3 total), or pockets of spinal fluid, built up inside my spinal cord, these are the light gray, almost white areas. The small one at the top, was all we had to go on from the first MRI. This was the one that the Chiari specialist said was too small to warrant surgery right away. You can see a second, even smaller syrinx just below that one. The most concerning, and the reason I'm confident the Chiari specialist will do the surgery, is the very bottom syrinx. This is quite a large syrinx from what Tish and I have seen during our research.
The next image is a normal cross section of my spine. You notice the nice gray area inside my vertebrae, this is what the spinal cord should look like.
This next image is the start of the largest syrinx. I included this shot so you can see what area is the spinal cord, in case there was any confusion from the picture above. In this image, Right below the big ball of gray, you see a smaller circle of gray, with a bright white dot in the center. The gray is the spinal cord, and the white is actual spinal fluid that has built up inside the spinal cord.
I just wanted to share with you all what we found out today. Again, this is strictly self diagnosis, however we have done quite a bit of research and are pretty confident that we are reading this right. I'll let you know more as soon as we hear from the doctor.
Sunday, April 29, 2012
2nd Opinion results
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.
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 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.
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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