First month brace free!!!

Hello again,


The first month w/o my brace was actually somewhat challenging b/c I realized that my brace was inhibiting my muscles in my back from getting stronger. So I had to deal with strengthening those muscles a bit. It was also so strange not wearing that brace and having that support that kept me straight. But I have to say an absolutely great part was being able to wear normal clothes again and not have to wear what would fit under or over my brace!!! It was actually hard to choose what to wear! I no longer needed to wear pajama pants all day! The downside was that I felt cold b/c I had adapted to the brace in the sense that it seemed to add 10 degrees to the temperature in the room. I remembered how when I first started wearing the brace I would get so hot and sweat like crazy and eventually I was quite comfortable with it on and no longer felt hot and sometimes even wore a sweater over the brace. Then when I finally took it off, I felt the need to pretty much wear two sweaters! It seemed so cold everywhere I went. But within a couple weeks I started to adapt and things seemed to return to normal. Plus it helped that spring was beggining to arive and it was getting warmer outside as well!

Third Follow up Appointment and 6 months since surgery

Hello again,



I guess I should first start off with there being a mix up or something at the specialists office and somehow there was no record of my appointment with my specialist in January so technically to him, this may have been my second appointment. No problems though-things happen.



My appointment was on April 15, which was also 6 months since my surgery. An anniversary of sorts I suppose. Unfortunately my specialist ran late with a surgery or something and we had to wait for a couple of hrs but I would rather him do a good job in what he is doing and not rush anything and risk making a mistake just to make it on time to other appointments. He is great at what he does and spends how ever much time with us that we need and doesn't rush us which may account for why he runs late. So I don't mind waiting so much b/c I know he is giving every patient the time they need. I just felt the need to share that. I had an idea that there would be good and bad news with this appointment which there was. The good news was that I could totally toss the brace and be rid of the thing which was soooo amazing!!! I of course had been told I could start weening off of the brace about a month or so earlier but now I could just completely toss it! That was great news. I did have to mention to him about the issue of the added pain from the loose rod when I was not wearing the brace. Again, I need to say that I can't remember exactly how the appointment went b/c I was quite nervous about the probibility of needing more surgery. So I am not sure exactly what order things happened but soon after I told him about the rod, he took us to the screen that showed my xray of my back (which was really fascinating!) and explained some stuff and what would be done with surgery if I went through with it. I could not stand for very long so I had to go back to the bed I had been laying on and my mom took over asking questions and stuff which was great. Supposedly, my mom said he highly reccomended that I have the surgery which helped me make a decision on whether I would go through with it or not.

I spent the ride home debating whether I should or should not have the surgery and I believe that I spent at least the next few days deciding for sure if I would go through with it.

Between Second and Third Follow up

Hello again,

Between January 29 and April 15, not alot happened I think. The one event that does stand out big time is my 25th birthday in March. It was hard for me because another year has gone by and I am still not back on my feet so to speak. I did manage to get out of the house with my mom and dad and go to Tony Romas for a bday meal which was made possible b/c of the booths that I could rest my head back against something that helped keep the pain at bay for longer. It was quite exciting because of the fact that I only manage to get out of the house maybe once a month due to pain and then being stuck in bed for at least a day afterwards. My goodness it was fun though! I wasn't able to manage to stay long enough for dessert but I was able to make it through long enough to eat most of my meal. The one thing that I disliked was having to wear the brace and the waitress asking about it and she felt bad for me. I don't like when people feel sorry for me.

As far as progress physically, I was told I could take off the brace for longer periods of time but I experienced a fair bit more pain along the loose rod which had me wondering if that was a good thing or not. I also noticed that my back muscles were incredibly weak which I had feared would happen with wearing a brace. But the other option of not wearing the brace and having further complications would have been worse. Also about the beginning of April my arm muscles were finally getting strong enough to hold up a book long enough to read about a chapter at a time which for some odd reason I had not been able to do up until this point. I also was able to lift a heavier weight and not just the puny little 1 pound weights. So I now had reading to keep myself occupied for the most part. I also managed to go into the greenhouse for about 10 minutes at a time to plant some seeds before the pain got too severe. My family found it amusing watching me go back and forth between resting and being in the greenhouse so much. If nothing else I got excercise walking back and forth. I usually managed about three trips to the greenhouse in an hour! The walk back to the house was always very painful though. At least I felt as if I was accomplishing something which was something I had not felt since before the surgery. But I quickly learned my limits realizing that there was alot of lifting that I needed help with and sometimes it really got to me that I had to ask for help to lift something as small as a pot of dirt. It would feel like my hands were tied behind my back that I could not lift anything. But my family was great in being willing to help me out in any way possible. I love growing flowers and I wasn't going to miss out on it. Little did I realize at this point how theraputic it would be to be growing plants in the greenhouse during all of this stuff I've been dealing with.

Second Follow-up Appointment after Surgery

My second follow up appointment was January 29 and the weather was not great again but at least it wasn't -40 something with windchill. I was rather excited to get out again. At least this time I knew what to expect in terms of pain to travel to Edmonton which was something I was unsure of with the first follow up.

We had to wait awhile again but there wasn't much we could do about that. My sister and I discovered that we could switch the channel on the tv in the waiting area so we turned it to CTV b/c we totally prefer them over the other stations (no offence to the other stations). Also no one else was watching the tv so we figured why not. We actually were having a fair bit of fun whispering to each other and amusing ourselves so I kept my mind off the pain from my back a bit and the time went by a little quicker.

As for the appointment -sadly, I learned that first of all, I would have to continue wearing my brace for another couple of months which was not great news but at least the good news was that the rod had not come loose any farther. So the brace was doing it's job. My specialist also told us that at that point that there wasn't much that could be done but surgery might still happen. As far as I gathered, he had to wait for the spine to fuse before doing another surgery. Also he was concerned about my weight which still wasn't going up but actually down. My weight was seriously lower than it should have been. So he talked with us about meal replacements and stuff to try as well. I was not looking forward to having to try Boost! Overall, this appointment was better in the sense that we didn't receive any news that had us so worried like the first appointment. Yet we still thought of alot of questions we forgot to ask once we got to the van. I really hate when that happens! I think it is common though? We just would have to remember the next time I suppose.

The 2 months in between the first and second Follow up

Hi again,

In the two months between appointments a few things happened. One of which was being able to decrease the pain medication a bit which meant that the pain from surgery was decreasing and I was more than happy to not be taking so much Tylenol. It concerned me b/c I knew that taking too much for too long would be bad for my body. Another was my hip-knowing that it was bursitis, I knew not to over do the walking and it slowly improved which was so great! I had basically gotten it so bad I had to use a wheel chair a few times and it was nice to not need the wheel chair so much after a few weeks of the cortisone shot. Yet another great thing was of course Christmas! I managed to get to the Christmas Eve service and see a lot of people that I hadn't seen since before my surgery, which was a real mood lifter. Also my sister and her husband came for Christmas and it was so great to visit even though I still had too much pain to sit up for more than 20-30 minutes. Also I could finally be a little more independent-I was finally able to lift the water pitcher and a few other items on my own!!! You don't know how amazing that is until you go through it. I never would have thought I would get excited about lifting a water pitcher! I did have a bit of a hard time at first not being able to give gifts to people for Christmas b/c of my circumstances but my mom helped me to realize that it was fine if my family didn't get much from me. I love giving gifts and seeing the joy it brings to people as they open it-I also love making gifts b/c it means that much more to the recipient. I still managed to do some baking which was difficult but I was determined and made it work. I could not stand for very long b/c of my back and my hip so I would measure out a few ingredients, lay down and then get up and measure out a few more and lay down until I had the ingredients ready and then I would mix them together and get help to get it in the oven. Overall it worked pretty well except when I would try to do something myself that I should have asked for help with-like lifting the flour, but like I have mentioned before-I hate asking for help. This whole experience has helped me in terms of learning it is better to ask for help than to risk hurting myself trying to do it on my own. As for Christmas, probably the best gift I received was a kitten for company and another reason to push myself to be able to get down on the floor since it was still difficult to get on the floor. I also enjoyed watching the kitten play around which provided amusement and helped to cut down on the boredom I was dealing with. The only down side was that the kitten (who I named Felix) didn't like to be held against the hard brace so I could not cuddle with him. Slowly though, Felix got a little more accustomed to the brace and would allow me to carry him at least. I promised Felix that he could have my brace to play with when I was done with it b/c he enjoyed curling up in it when I would take it off. Of course I was ticking off the days till my second follow up appointment which I assumed would be the day I could say good bye to the brace.

Getting used to wearing a brace

Hello again,
Getting used to my brace was not an easy task by any means. This brace covered my hips up to just past my arms and made from some sort of plastic that doesn't breathe very well. One thing I am so incredibly grateful for is that I could take the brace on and off b/c at the beginning I got very hot quite quickly-I finally started saying that it added 10 degrees easily. It also was very uncomfortable to be kind of confined and I had to learn to take small breaths b/c it needed to be fairly tight to keep my back from moving. I started out just managing an hour at a time and then I would basically rip it off b/c I was getting so hot. The interesting thing is that eventually my body seemed to adapt to it and I didn't get so hot while wearing it anymore. It also helped that it was winter as well. Though sometimes I would still get really hot and have the urge to go outside and roll in the snow! Instead I would go out into the garage and walk around so I could cool off and hopefully not risk getting sick-I never thought I would enjoy a walk in the garage so much! I don't want to seem so negative but one other downside to the brace is that the only clothes that I had that I could wear was a couple tshirts and a pair of overalls or pajama pants. There were definitely a lot of days I longed to slip on my comfy pair of jeans with a sweater or another shirt. Oh well I guess I came to appreciate my other clothes more. I knew one thing-I would be happy when I could finally toss the brace and not ever look at it again! I marked down every day that passed till my next appointment with my specialist assuming that at that point (Jan. 29, 08) I could toss my brace and little did I know that I would not be tossing it so quickly.

First follow up Apointment on December 4, 2007

Hello again,

In the weeks before my first follow up appointment I was both nervous and excited. I was mainly nervous about the trip to Edmonton and how painful the trip would be. I learned on the way home from the hospitaly that every little bump on the road hurts! Surprisingly the trip to Edmonton wasn't as bad as I was expecting and it was so nice to get out of the house! I hadn't been really anywhere since before the surgery. I wasn't really nervous about the appointment itself and was basically hoping that it would go well and my specialist would give me the go ahead to lift heavier objects. I had been told that I could not lift anything above 5 lbs for the first 6 weeks. One of the few problems that I had to discuss was terrible pain in my hip that was keeping me from being able to walk which I learned was bursitis and he needed to give me a cortisone shot. I had thought the pain in my hip had to do with my back so I kept trying to walk on it only to make it incredibly inflamed and quite warm to the touch.
I don't even really remember how the first few minutes went and what we discussed first but I remember him looking at my back and then telling us that the rod had come loose on the bottom and that news hit me like a ton of bricks. I wasn't expecting and hadn't prepared for complications. He told us that I had two options-wear a brace for a couple of months or surgery to fix the rod. Surgery again? Of course I didn't want that so I wanted to try the brace first which he agreed was a good idea. The only issue was that we needed to get the brace immediately and it was already late and we had already had a very long day. But I didn't want surgery if I didn't have to so we did what we had to do. The place that my specialist sent us to made my brace in record time supposedly so that we would not have to come back to Edmonton to pick it up. I think it took him a couple of hours vs a couple of days. We were finally headed home by about 6pm I think. It was a very very long day! We ended up having to travel back to Edmonton though b/c the brace was too long and would dig into my abdoman and thighs when I sat down. We needed to get it trimmed and bent outwards. After that it was a little more more comfortable-well as comfortable as a brace can get which is not great-trust me.

Coming Home

Coming home was definitely harder than I had imagined. We finally got home at about 10pm the day I left the hospital and there had been some mix up with home care so I didn't have stuff really properly set up. Before I went in for surgery I didn't understand why I would need home care-I had no idea how difficult it was still going to be when I got home. The first month at home was very difficult for an independent person like me who hates to ask for any help at all. Sometimes I would rather do stuff myself and even put myself in danger versus ask for help. So this experience was not only difficult but incredibly humbling as well.

That first night at home was so much more difficult than I had prepared myself for. First challenge was using the toilet without a raised toilet seat or anything to hang on to b/c sitting down was still really hard on my back. The next challenge was laying down in my bed with out the bed rail on the hospital bed that I had come to rely on to help myself up. I remember managing to lay down on my bed across the end (I have a double bed) and not being able to push myself up and having my mom trying to pull me up by the arm-believe me I don't reccomend that! The pain that shot through me was terrible. Oops. I did finally manage to get up and get into bed the right way. The next day Home Care came out and made my life so much easier. The only issue left was that I was still throwing up which continued for about 2 weeks. What Home Care could not help with was my inability to lift anything above a pound or so. I had to ask to have help with something as small as the water pitcher! Another problem was that I could not bend down to reach the floor so every time I dropped something I needed to call for help to pick it up. I felt terrible about being a burden on my family and asking so much of them but the amazing thing is that they did not mind and never complained about helping me. But it didn't stop me from trying to get creative that I could manage to get something that fell with out calling for help. The only thing is that most often I would still end up calling for help b/c I realized I couldn't always get what ever fell. I learned it is better just to ask. Recovery for the first month was painful and slow but there was progress no matter how slow. I found it and still find it very effective to look back a week or a month and look at what I was dealing with then compared to what I am dealing with now. Most often I could notice at least something if not a few things.

The Surgery and hospital stay

The day of surgery was a little nerve wracking to say the least. I had to be at the hospital by 6am and we had to leave a little extra early b/c we are not from Edmonton (where I had the surgery) and we didn't want to get lost and be late. We were on time but it turns out the surgeon was late. I was so nervous-I think they gave me a sedative possibly b/c I don't even remember being wheeled into the operating room which is too bad b/c I had actually been looking forward to knowing what an operating room looked like. Anyways the surgery lasted about 8-9 hrs and I don't remember anything really till the next day. As far as complications, apparently I had a collapsed lung-but that was minor. I survived the surgery!

I stayed in the hospital for 9days and the first 3 days I was hooked up to too many tubes that I could not get out of bed. The physiotherapist actually came in on day 2 but I was so sound asleep he could not wake me! They ended up coming back on day three which was an incredibly painful day b/c my muscles had all been cut and I had to basically relearn how to use them and it took what seemed forever to manage to get up. I was a little queasy though and threw up and missed the therapist by mere inches. Supposedly, that is common though so she was ok but that was the extent of that visit. Walking was a lot harder than I had thought it would be. It was like I hadn't walked in years and everything was stiff and muscles were incredibly weak and everything was so painful! I remember the first time the physio therapist took me down the hallway-I could not believe how tough it was just to take a few steps. Stairs were something else to conquer! It was an interesting 9 days for me. I still remember showing my mom that I could walk again and how proud I was and she was about it.
Again I want to make a special mention of how supportive my family was through the hospital stay-they put their lives pretty much on hold to visit me! It wasn't easy for them to make so many trips to and from the hospital and a couple nights they had to sleep in hotels and what not. But it made all the difference to me to see them every day-it was definitely the highlight of every day!

I want to say that the nurses were amazing which made things easier and I definitely felt bad for them b/c I was throwing up so much and they had to clean it up sometimes it got all over me and the bed... They definitely were wonderful and took very good care of me despite being short staffed so often. I don't envy them one bit but again I am very thankful for them and their wonderful bedside manor.

Months leading up to Surgery

Hi again,
I wish I could give more specific dates of the MRI and when I was notified of the date of my surgery but I have to honestly say that the months leading up to my surgery are kind of all blurred together. As I have said before, I was scared silly. I don't get anxious very easily but this was causing some anxiety. It didn't help that you have to be told about all of the risks involved with the surgery even though most of the risks were less than a 1% chance-they were still in my head. Thankfully I was surrounded with people (family and friends) who cared about me and supported me before, during and after the surgery. I want to mention that my family was going through this with me as well-it affects the whole family. There were so many people that supported us that I don't really want to mention anyone specifically b/c I don't want to leave anyone out. I do remember one instance though that I would like to mention. It was about a month before my surgery and I had just dropped my sister off at work and I was just in tears and I went straight to the person I knew was available when ever I needed to talk to someone (besides my mom)-the Seceratary of our Church who also gives really great hugs! She of course was at the church and sat with me for a few minutes and talked with me and that one instance made such an impact that I will never forget about it. I of course remember other times with other people but this one instance stands out for me. Some people may think that it is just surgery and why would it be a big deal-but it isn't just surgery. It is many things including whether it is the right choice and whether there will be complications and what the outcome will be and not knowing what to expect. Sometimes it helped to have someone outside my family to talk to b/c they would have a different perspective than my parents who were going through similar fears as me. Of course my mom spent alot of time with me and we talked alot about it which definitely helped as well. One last though would be that I had no idea that the recovery process would take so much longer than I had initially expected it would.

The Decision to have surgery

In the year following the first appointment with my specialist, I tried the alternatives (chiropractor, physio and excercises) we had discussed but found that the curve in my spine was too severe for any of them to be very effective. I also spent alot of time in the library and on the internet researching Kyphosis and learned that there was not really any other alternatives for or even alot of literature on Kyphosis for someone my age. My family and I went to see my specialist Dr.Mahood again in April of 2007 knowing that surgery was about my only option left. So we met with him and and I made the decision to go ahead with it. I need to mention that I did not take this decision lightly-I thought about it quite a bit whether it was the right choice or not. I was scared silly about the thought of being cut open, the risks involved in a surgery this big and whether I would regret it in the future. I wished I had a crystal ball that I could see the outcome of each choice. I was not to keen on the thought of having rods in my back and losing the flexibility but the alternative was living in pain every day which would continue to prevent me from working or being able to be physically active which I had lost the ability to do within the last few years. Also I found out I had risks of having more complications due to the curve in my spine like pinched nerves and what not. So the decision was made and I was scared silly. The ride home was a really long one-it seemed to take forever. I kept wondering if I really had made the right choice.

Meeting the Specialist

Hello again,

I had my first appointment with the specialist in Spring of 2006 I believe. We ended up having to wait for about 2 hours to meet with him b/c he was running late. I had no idea how this appointment was going to go and I had so many questions that I feared I would forget to ask when I actually met with the Specialist. I have a terrible tendancy to do that. Meeting him went fine I think-I forgot a ton of questions that I had intended to ask. I remember him suggesting surgery and in my head I was like no way are you getting me on a table and have me cut open! I was convinced that there had to be an alternative to having surgery that maybe was a little less invasive and scary. So I said no to surgery but I remember him saying something like we could put it on the back burner as if to say that we would come back to it. I just remember thinking- what are you talking about back burners...surgery is not happening. I was so sure I would find another alternative but in the end, I guess maybe he knew that surgery was about the only option for me. I was also surprised that he was ok with me trying a chiropractor who we had started seeing not long before we met with the Specialist. Most doctors seem to be against chiropractors. Though overall I thought that he knew what he was talking about which is big b/c I have had alot of experience with doctors who don't seem to know very much. Also he made jokes that were funny which helped ease the tension a little.
By the end of our first meeting we decided to try what ever alternatives to surgery there were. The alternatives we chose were to continue with the chiropractor for the time being and see if that would help and to include physio and excercises. Also I planned on doing what ever research I could to see if there were other options out there that I could try. Though as I would later find out, for my case there wasn't very many options other than what I was about to try.

The Diagnosis

Hello,
I was officially diagnosed with Kyphosis a couple of years ago b/c I was getting a lot of pain and the doctor noticed my back which I always tried to disguise the best I could so I would look somewhat normal to the general public. I was quite ashamed of the look of my back. I always thought that the curve in my back was my fault and was something I did to myself but I later learned that there was likely little I could have done to prevent it. It wasn't hard to notice though and I was actually surprised that no doctor picked up on it any earlier. If it had been noticed while I was still growing I may not have had to deal with surgery, but I can't change the past so I had to let all the 'what ifs' go. After I was diagnosed with Kyphosis I found out that I would have to wait about a year minimum to get in to see a specialist-supposedly the only one in our whole province who specialized in this sort of disorder. I had absolutely no idea what Kyphosis was or what I would have to go through to get relief from the pain that I dealt with on a daily basis.