7 Months Post Op

Ok, so I know it's been since August since my last post and for that I apologize.  It's been a busy 7 months.  Since August, where to begin....we had a wonderful holiday here in Oklahoma, and unfortunately it will be our last in Moore.  At the end of this month, we are headed to Dayton, Ohio.  I was orginally scheduled for my next appointment in February, but since we have orders to leave, they rescheduled me for 15 January.  I had my first MRI since the surgery yesterday morning and wanted to get on here to post some preliminary findings.  (a.k.a. Dr. Huller's interpretation :-P)  So, the top image here is an image from May 2012, 3 months after the initial diagnosis and the first imaging of the syrinxes located within my spine.  The white is the pocket of spinal fluid.  The second image is now the largest of the syrinxes I could find in the new MRI.

 

As you can see, the syrinx has shrunk dramatically.  This is great news, it means that the normal flow of spinal fluid has returned and the syrinxes should at worst stay as they are, or at best, continue shrinking until they disappear completely.  In the next set of images, I want you to focus on the top part of the image.  Specifically the area of the chiari malformation.  The first image again is from May 2012.  I tried to identify the Foramen Magnum, the opening at the base of the skull which allows the spinal cord to enter the spinal canal.  I also identified the chiari malformation, this is the area where my cerebral tonsils extend below the foramen magnum and enter into the spinal canal.  The second image is from Jan 2013, 7 months post op.  I tried to identify the area of bone that was removed during the decompression surgery as well as the other noticeable difference in the images.  At this point, I'm not sure if the large area of white is spinal fluid, or simply the patch that was sewn in to give me more room.  Either way, the area is much larger than i expected. 

 

 Again, I have my follow up with Dr. Mapstone next Tuesday, the 15th.  I will try and get on here and post any other findings.  I have been able to get back to full exercise, although the rest of my body doesn't like that I haven't done it in awhile.  Other than that, things are going really well.  I can't say enough about Dr. Mapstone, he has done a tremendous job.  Hopefully things will stay as is, and I will just have to monitor from this point forward.  Just wanted to share the great news.



Back to the grind on Monday

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 :)

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.

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. 

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.

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.

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.
   

In the last image, this is the center of that large syrinx I was talking about.  It's the one that's about lung level.  The bright white area is all cerebral spinal fluid.  Quite concerning, but I feel very fortunate that I haven't had more severe symptoms to this point, such as the numbness and tingling sensations, or even some loss of motor skills.  I'm sure when the doctor gives me a call, we will get the surgery scheduled and then it's on to recovery.
     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.