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09/07/2008 07:56 PM

surgery for scheuermann's kyphosis

sally123456
Posts: 74
Member

I had surgery for Scheuermann's kyphosis in 2005. This surgery had to be done because my curve(hump) in my spine was already at 110 degrees. Scheuermann's kyphosis will not correct it self. It is very progressive. At least mine was. Having this disorder is very dangerous. I am writing this because I read and hear from to many people that there doctors,family and friends seem to think that it is not a big deal. It is a very big deal. My spine was so curved it was already pressing into my esphogus. This caused a lot of problems. Also as the curve continues to progress the lungs and all the other organs are squashed so tightly it creates severve problems. If I had not had this surgery it could have lead to my early death. I was born with this spinal disorder and it was not untill I was 35 years old that I was seen by a doctor for it. The surgery was done withen a few months of my first vist. I had several problems as a child. I would complain of my back hurting by the age of twelve. I was always short of breath. My parents always yelled at me to sit up straight even though I thought that I was. As the years went on the pain just got worse and the hump got bigger. I never went to the doctor for this as my parents always told me nothing was wrong with my back it was all in my head and stop making all these stories up. I had a very low self image of my self because of this. Finally as the years went on I found it harder to walk,sit,stand or do anything for a great amount of time. I work in a emergency room so I had a lot of walking and lifting to do. I would end up going into the break room and have to lie on the floor on my back to pop it just to get some kind of relief. I did this at least once a night during work for about a year. If I did not do this I was not able to stand up. The year I finally went to the doctor I was having to lay down on the floor about six times during my eight hour shift. I walked bent over as it relieved some of the pain. My head was always looking at the ground. I never could hold my head up in a normall position. I would drive home from work all bent over and then actually crawl into my house as I could not stand up anymore. My shoulders are rounded foward from the kyphosis and this also creats alot of pain. This causes impingement of the shoulders. There are so many problems that come with this kyphosis it is not just effecting the back. I write this because I want people to really know and understand that Scheuermann's kyphosis is very dangerous and painfull to have and can lead to a disability. I will be adding to this once in awhile and will talk about the surgery, problems, and just discuss why we have the pain we do what causes it and mush more. I can't write it all at one time as this is already getting way to much for everyone to read. I just want you all to know I do have answers and am well informed on this spinal condition.
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09/08/2008 12:59 AM
cinderella
cinderella  
Posts: 160
Senior Member

thanks so much for sharing some of your story with us all. i am really certain that if we all get together and add bits and pieces we might be able too help each other work out some self help tips to help with the reality of what this disease does....

thank you so much for sharing...


09/08/2008 05:44 PM
sally123456
Posts: 74
Member

I really want people to know that there are good doctors that do deal with this spinal condition. I want people to know that this spinal condition does cause severve pain, do not let others tell you it does not. Believe in your self because I know for a fact that the pain is really there and so do you.(I know that my spelling is horriable, sorry about that)

There are different forms of kyphosis. The kind of kyphosis I have is scheuermann's kyphosis and with the help of surgery it will help stop this progressive form of kyphosis. My curve was at 110 degress.(it is now at 53 degress) A curve over 50 or 60 degress is enough for the surgery. If a child has this form of kyphosis and there curve is only 30 degress they would have the surgery done as for a child that would be considered a large curve for there age and it is progressive. If a person bends over and there hump disapers, or when they lay down on a flat surface and there curve disapers then that would be considered posteral kyphosis and surgery would not be considered. Being young and haveing this kyphosis is different then when an older person develops it. When a older person delvelops this kyphosis it is usually brought on by osteoprosis. Surgery would not be considered in this case either. Scheuermann's kyphosis happens when we are growing. The front part of the vertabra stop growing but the back part grows normally. This is what causes the wedge shapped vertabra to develope.

To have true scheuermann's kyphosis one must have at least three wedged vertabra. I had a lot of wedged vertabra as it involved my whole thoracic spine. I also had a lot of herniated disc's in the thoracic spine. One really needs to find a good doctor who is a specialist in spinal disorders. (my doctor is a peds orthopedic doctor who specialises is spinal conditions)

The pain from the kyphosis is caused by many things. One of the most painfull things is that the back is so curved over and your muscles are tring so hard to hold your back up that they are getting so strained by doing so. Your muscles are fighting everything they have just to try to pull your spine back ware it is supposed to be that they are getting pulled all the time.Has anyone who has this condition ever noticed that your head is always looking at the ground it is never held up right when you are walking? I did not notice this as I was so used to it,people and the doctor pointed it out to me after my surgery. My co workers would say that they could actually see my face now when I was walking. This is why it is so hard to walk for long periods, sit for more then a few minutes, stand for a few minutes, it is just to painfull to try to do most anything. The only relief that I would get would be to lay down. The pain before my surgery would be so bad that in the end laying down would not help out much either. I would always lay down in a fetal position and then one day I just could not do that anymore. I know that washing dishes was painfull as one can not stand nor bend down for to long. Every hosehold chore in the end was unbearable to do as the pain would always be there and it would keep getting worce.

If anyone has any questions I would be glad to try and answer them. Please respond to some of my post's. It is really hard to know if people are really interested on this topic if no one puts there two cents in. Again sorry for my spelling. If there is a spell check on hear let me know. Thanks. I also realize that I do jump around a lot when I am writting this all out and I hope I do not confuse any one by doing so. There is so much I would like to say so it makes it that much harder for me not to jump around so much.


09/08/2008 06:45 PM
sally123456
Posts: 74
Member

I would like to say that on November 22nd of 2005 I had my surgery for my Scheuermann's kyphosis. It is a very hard surgery to get threw. My doctor told me it is the most painfull surgery to have done. When I woke up after the surgery it hurt just to move my finger. I actually at that time did not care if I died or not. The pain was unbearable. My surgery lasted about ten hours and that is not counting the pre-op or the post-op rooms. The first part of my surgery they went in threw the side of my chest. To do this they have to collaspe a lung. When you wake up after the surgery you do have a chest tube.You also will have tubes coming out of every part of your body including your back. During surgery I was also hooked up to the spinal cord monater. They also do a wake up check on you during the surgery to make sure you are not paralized. When they went in threw my chest they took the disc's out at T4 threw T11. So I was fused in those area also. I think the chest part of the surgery was the worce. I have about a six inch scar from that and a one and a half inch scar from the chest tube. When they are done with that part they put you on a different table so they can turn you over onto your stomach. They cut me from the base of my neck all the way down to my butt. I guess that is almost a two foot scar there. They put screws in all my verabra from T2 all the way to L2. Then they put two rods from T2 all the way to L2. They also sawed off the pedicles on my vertabra. They also fused on top of my spine from T2 to L2 with bone graft. I also have two cross links one at the top and one towards the bottom. All together I have 36 screws, to rods about two feet long and two cross links. I was in the neuro truma intensive care unit for four days and then I was put in a regular room in the neuro unit for another seven days. I was not allowed to even sit up in the bed or get up for four days after the surgery. Trust me I didn't want to and I had a hard time getting up when I was able to. The nursing staff were horriable to me there. My stay was just terriable and the amount of pain I was in didn't make things any better. I had to ware a TLSO brace (hard plastic from neck to butt) for four and a half months. I had to use a walker for three months. It was diffucult to do anything even wipeing myslef after going to the bathroom was a chalange and I needed a special tool to get the job done. Getting dressed was so painfull. I was supposed to have help with a lot of this stuff but my family would not do to much for me. My dad snow plowed for me and he washed my cloths but no one did anything else. It was a long and painfull recovery. I am still in pain. I am still on a lot of pain medication. That much hardware is just not mormall and I am having problems with it. I was doing better after about a year and even though I am still in pain the surgery has or was supposed to keep my spine from curving. That was at least before I was in a car accident last October! Five months after surgery I went back to work against doctors warning me not to as I still needed time to heal. I was getting so much crap from my family for not working and I just could not take it anymore so I went back. I wish I had not gone back at the time I did. Just when I was getting used to the idea of working with the pain I was in, I got rear ended by someone while I was at a stop light facing down a hill. This happened in October of 2007. In August of 2007 I had bilateral jaw surery and my mouth was wired shut. I also hit my left side of my face on the stering whell. Now I am having more problems with my jaw. When I was in the car accident the doctors thought that I had just gotten whiplash. Wrong I had a MRI a few months later and ended up having a severve retro herniated disc at C5/C6. The ER doctor should have found this on the CT scan that I had while I was in the ER the night of the accident but he missed it some how. Well I had to have surgery as it was unstable so now I have another fusion with a plate and four more screws. I had this done in March of 08. The worse is yet to happen though as in the accident I also had my T1 vertabra slip onto my T2 vertabra and those are the only two vertabra that I have left in between the two surgerys. Talk about painfull. As soon as my doctor gets his schedule worked out I will be having surgery on this to. When this surgery is done I will be rodded and fused from C4 all the way down to L2 as he has to connect everything all together. I will not be able to bend at all. I have lost so much mobility already I am sorta scared when I think about how I will end up after this surgery. Anything has to be better then it is now though. I have not worked since October of 2007. No help from family only critisium. They do not understand. I am having to cobra my health insurance and have no money. My family has money they could borrow to me but they yell at me and say it is wrong to beg for money. I do not beg. I asked to borrow. I write all of this today just to show you all that no matter what, people or some people will never understand the disability or the pain that we can be in. It is tough not to have anyone to help you out in anyway. So anyway that sums up the story of my life for the last three years. Any sugestions anyone.

09/10/2008 10:58 PM
cinderella
cinderella  
Posts: 160
Senior Member

Shocked

my goodness, i am so sorry that you have had to endure all that and i pray for you that everyting goes ok for you... did you know that i think you might be the bravest and sorriest person i have ever spoken to??? brave because you still are here with us going through all this and the sorriest because you have had so much crap put on you, and even by your family who should be supporting you through the toughest and possibly the scariest time in your life... i wish that for you i could do anything that you asked me to, and i want you to know that anytime you want to let off steam or ask a question or anything you go ahead and message me alright. i am sending you the biggest softest hugs in the universe... they are all for you... please keep in touch and thank you for sharing some of your journey with us....


09/10/2008 11:05 PM
cinderella
cinderella  
Posts: 160
Senior Member

jumping around topics is great because you are covering alot of areas... i dont know very much about scheuermann's and mine is suppose to be "MILD" anyway it is still god awful painful, so if your's is that severe i think i should not complain anymore...Sad

i thank you from the bottom of my heart for sharing this information with us because their isnt any actual text from people suffering this chronic pain disease from the actual people who have it..

that is me..

cinderella

xxxxCool


09/11/2008 05:08 AM
sally123456
Posts: 74
Member

Cinderella-Thank's for responding to my post.

Has anyone ever measured the size of your curve?

If so what is the degree of your curve? If you had x-ray's done to be able to determine that you have scheuermann's kyphosis your doctor must have used them to measure the curve in your back.

To all the people on this site, have you had x-ray's? What is this size of curve you have for your scheuermann's kyphosis? Has your doctors told you that your scheuermann's kyphosis is progressive?


09/11/2008 07:11 PM
cinderella
cinderella  
Posts: 160
Senior Member

my doctors dont know anything about scheuermann's and are busy doing as much research as they can.. i dont want to be too difficult because i am already in there for an hour with them now... i will get to it.. the mri scan said i had changes from old mild scheuermann's and didnt say anything about degrees or what not... to look at me i just appear to have poor posture, alot of other doctors used to just say that i had low self esteem and i had to practice sitting up straight... i have tried for years to do it and it jsut is not possible... when i sit up straight i look like im slouching anyway, i will ask her about this degrees thign and see if she can find out anything for me...

Cool {{{hugs}}} cinderella


10/16/2008 02:29 AM
Dizzy83
Posts: 1
New Member

Hi there,

I have been having back problems for the last 3 months and have had an MRI Scan a couple of weeks ago. I have just got my results which say:

In the lower thoracic spine there is mild endplate irregularity at T9/10 and T0/11 with some anterior loss of height of the T11 vertebra these features are consistent with mild Scheurmann's disease. It also say's I have Disc protusion at L5/S1 with some lateral recess narrowing but no nerve root compression. minor changes in keeping with Scheurmann's disease.

Can anyone put this in simple tearms for me? what does this mean as I've read a little on Scheurmann's diseaase and it's starting to scare me.

I have been off work for 3 1/2 months now and still don't know if or when i can return to work.

Are you entitled to disability benefits with this condition?

Hazel


03/03/2009 10:24 AM
slbraxton
slbraxton  
Posts: 33
Member

I am somebody who wants to have surgery just so that I can fix this problem once and for all. But of course my doctors tell me I am not a candidate. Your story of having surgery definitly scared me. I have never had anything done surgically or procedurally and I just don't know now... I am going in to see an ortho surgeon who has a little more expertise in this disease for a second opinion next month. But I don't know... I mean I think we all knew surgery was rough but I don't think we knew HOW rough. Kudos- to you. You are a survivor.

I have a lot of respect for you just for enduring all of that and coming out on top. Smile

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