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raymond
2nd April 2007, 07:46 PM
Here is my story:
I have never discussed this problem with anybody.

When I was around 13-14 years old I began to experience severe back pain. The school I was attending had a screening for back problems. The school found a problem & contacted my parents, which inturn contacted a doctor. The doctor stated I had Scheuermann's Disease. The doctor stated I have a 65-70 deg curve. I really cant remember the amount of the curve, I was 13. The doctor fitted me with a brace. I wore this brace for the first summer. The brace straps dug into my shoulders & made it very uncomfortable. I started to not wear the brace. My parents would yell at me to put it on, but would only wear it when they were around. Fast forward 25 years. I am married w/1 child. I do NOT discuss this problem with anybody, even my wife, due to the embarsement. I do not go into the public eye, if I can help it. I do not go spend time with my family outside the house. I am in constant pain & alleviate the pain with alcohol. I drink every other day to try to kill the pain. My wife thinks im a alcoholic & dont care about the family. I need some type of advice. I am considering going to a doctor for surgery, but I have family members that have had some types of back surgery & are "wabbling around" due to the pain from the surgery. Either I have this surgery or my life, as I know it will end in a divorce. I see no other alternitave, but would like advice from others that had the surgery. I really dont know what to do.

cork_lass
2nd April 2007, 08:35 PM
Hi Raymond,

Welcome :welcome2: to our site. I didn't have any surgery so I can't give you any advice on that. I think you should tell your wife what you have wrote about and ask her to go to your GP with you so you can work together to sort out your problems.

There is a lot of help and support out there for you. The only one who can improve your life is you, so please ask for help.

All my love and best wishes :squeeze:

tonibunny
2nd April 2007, 09:02 PM
Hi Raymond :welcome2:

I'm so glad that you've found us. By posting here you've taken the first step in trying to get help to make your life happier, and I hope we will be able to help by giving you the support you need to do that :-)

If it's too difficult to talk to your wife just yet, then please please do try to go to see your GP. You shouldn't be in so much back pain, and your GP can help you with this. If you just go along and say "I'm having a lot of pain with my back doctor" then you needn't even immediately mention the fact that you are self-conscious about the way it looks - your GP will probably talk to you about your back in general and make it easier to talk about that if you feel able to. It's likely that your GP will refer you to a specialist if you would like that.

Once you have the painkillers and don't need alchohol for pain relief, your wife may notice this and then you might be able to broach the subject with her. It's obviously very important to communicate things with her, but take things one step at a time.

There are quite a few people here who are, who have been, acutely worried about they way they look. Please don't be afraid to talk to us with anything at all that worries you. We all want to help.

As far as surgery goes, there are several members who have been through kyphosis surgery and all seem to have come through it smiling. The post-operative pain does not last forever. Please keep your chin up, and as I said, take things one step at a time :-)

lots of love,

Toni xx :squeeze:

Amazed Jean
3rd April 2007, 03:40 AM
Raymond, Let's just say that way I look is what I term as gross. I don't talk about it except here at SSO. People staring and making comments under their breath about my hump tell me volumes. It is easier to understand now that I am old enough to be secure in myself. BUT I don't think it will ever be done and over - 100%. I'm not about to forget what I look like. I am aiming to look as best I can. What was that old adage about not being able to make a silk purse out of a sow's ears? The way I look and the way I feel are not things I discuss much. That said I think I have felt so accepted here that it makes all the difference in my attitude. I do get depressed easily and I take an antidepressant on a daily basis but there are still days when I want to hide. Some times it is very difficult to talk to anyone.
I hope you can find a scoliosis doctor to consult with. You are young enough to do something for yourself and recover nicely. Do it for your child, your wife and for pete's sake for yourself. Stay with SSO and we will help you through>

GillyG
3rd April 2007, 09:02 PM
I'm so pleased you've found this site and felt able to discuss your problems with us. As Toni says, you have taken the first step.

Although I have scoliosis rather than kyphosis, the two conditions have many similarities as does the surgery to correct and stabilse them. I underwent the surgery about 7.5 months ago at the age of 49, so it's never too late to start making a difference.

You owe it to yourself and your family to see if you can finally overcome some of the problems you're having. No-one deserves to feel so embarrassed and suffer so much pain.

Feel free to ask any questions you like, someone will always be able to support and advise you.

Take care.

Gilly xx

Amazed Jean
3rd April 2007, 11:53 PM
Raymond, If you are on right now, I just wanted you to know that I am thinking of you and I really care about how are doing. How can I help?

raymond
4th April 2007, 08:13 PM
Thank you for the replies & understanding. What I would lIke to really know is...
1) What is the length of time to recover, I know it changes from person to person, but would like an idea.
2) Who should I turn to first?
3) How do I pick out a good doctor/specialists?
4) What can I expect out of surgery?
5) Does health insurance pay for the surgery?
6) What are the chances of problems in the future? I obviously dont want surgery, if I'm going to say 10 yrs from now, If I only didnt have that surgery.
7) Will I need to take meds the rest of my life? (I not a "pill popper")

Thats about all the q's I have for now. I am unsure of my next step. Also unsure what a GP is, as stated in previous posts. Keep in mind I havent been to a Dr. in about 20 years, so dont have a family Dr to see.
I always have thought that this is my "cross" to bear, up until now. I can handle the pain, but cant handle the embarsement on a daily basis. I just want to throw on a t-shirt & spend time outside with my family w/out the "looks" or the comments. Every decision I make on a daily basis is due to my back. I have to sit in the last seat of the room, I have to wear a jacket when its warm to cover it up as good as possible, I have to make sure I have the right clothing on, I have to say no to my child about going to the football game, I wont take my wife out to eat at a resturaunt, ect, ect..... All of this is due to the embarsement in public.
Thanks for listening. Ray

mark
4th April 2007, 11:17 PM
Hello Raymond

Wlcome to SSO

To answer some of your questions

Kyphosis surgery is not a walk in the park by any means. It is usually longer and more complicated than that for scoliosis. From members posting on this site it is going to take at least 6 months to recover from the surgery and upto 12 months before you can back to the way you were before surgery. This is an average by the way some recoveries are shorter and some longer, some painful other members have said they experienced very little pain

Where abouts in the world are you from we may be able to put you in contact with a surgeon in your area.

As for health insurance in England that would bepend on what your policy covered. I would give the insurance company a ring and ask them. THe NHS would fund your surgery if you found a surgeon willing to do the surgery however waiting lists can be lengthy.

With regards to pain, again that is very subject. Some people with very large curves have very little pain others with smaller curves are in a great deal of pain. I'm afraid its just luck of the draw when it comes to pain. You may want to look in the non surgical forum for pain relief methods some good techniques have been posted

As to question 6 r.e. surgery in the future again this is an unknown some surgeries are very successful and require no revision interventions others have had a few trips back to the surgeon.

I can sympathise with you with regards to being embarassed i was like you too until i found these people now i am less concerned i have learnt a lot and come a hell of a long way and its not been an easy journey but i wouldnt be without these guys on this website and i don't know what i would have done if i had not met them. Have you tried asking you doctor to refer you a councilor to get some help with the obvious psycological problems you are having. Sometimes just talking to someone helps.

I hope you can find some answers and i hope we can help you on your journey

mark

tonibunny
5th April 2007, 12:35 AM
Hi Ray,

A GP is a General Practitioner - a family doctor. You really should find one, as he will be your first port of call.

We can help you locate the best spinal specialists in your area if you let us know where you live :-) As a staff member I can tell that you're in the USA - it's a shame that you're not in the UK, as Mark says the National Health Service would look after you here! But don't worry, we have a lot of US members here and I haven't heard of anyone have trouble with their insurance over paying for surgery.

It's most likely that surgery will prevent problems in the future, not make them - but really this is something you should discuss with your specialist when you find one, because obviously there are risks involved and everyone is different.

We have had several men who have had surgery for severe kyphosis and have been extremely pleased with their results. They don't tend to pop in here so often these days though - possibly because they have put the surgery behind them and are out enjoying themselves :-)

Toni xx

Amazed Jean
5th April 2007, 01:15 AM
Ray, Where in the states are you? I'm positive that insurance covers surgery. There are several scoliosis doctors all over the US. I am living with a lot of regret at not having had surgery. You still have time to. Please.

titch
5th April 2007, 11:01 AM
If you give us an idea where you live, we can suggest some good surgeons to try seeing, who definitely deal with adults. That can be part of the challenge - finding someone who doesn't just deal with adolescents. There are plenty of them around though!

Depending on curve position and flexibility, surgery for kyphosis can be either no more complicated than scoliosis surgery, or it can be slightly more so - it's unusual to have a situation like one of our members here (who doesn't post often any more because as far as can be told, he's having a damn fine time recovered from his surgery :D) who not only had a very significant kyphosis, but also had a sharp scoliosis curve within it - his surgery was one of the longest single surgeries I think I've ever heard of. Generally speaking, I think the biggest potential problem with kyphosis surgery is that you need someone who is a particularly experienced surgery to ensure that they achieve good spinal balance for you, and that's the trick of it with kyphosis surgeries.

That said, that's exactly the remit of what are often referred to as revision surgeons - unfortunately, the old style of treatment for scoliosis, the Harrington rod, while saving a lot of lives and doing a lot of good, nevertheless had the unfortunate long term side effect in many cases of giving people with long fusions into their lumbar (low back) region) a condition called flatback. This is basically the reduction of your lordosis to the point that it becomes a serious problem and renders you unable to stand up straight. The procedure for restoring lordosis and for reducing kyphosis is very similar - removal of one or more wedges from the rear of the spine, and pulling that closed with the rods that are inserted. The revision surgeons have a lot of experience of doing this for flatbackers, and so will likely be a good place to start.

As an adult it does take longer to recover than when you're younger. I had my first surgery at 20, and made a pretty rapid recovery from it - unfortunately, the surgeon who did it was a general ortho rather than a true specialist, and managed to reverse my lordosis into a kyphosis, which within just a few years gave me severe problems. At 29 I had revision surgery, including as I mentioned above, a large wedge of bone removed to restore my lordosis, and my recovery was a lot slower. That said, by the time I had the surgery I was hardly able to walk other than just shuffling round the house and was very bent over and in poor physical condition. Even so, I was back to my part time desk job at 3 months, and 10 months from the surgery for my birthday we went to London for the day and literally shopped til we dropped - my husband had backache by the end of the day, and I just had sore feet! It's definitely true that full recovery tends to take around 18 months in an adult, but you generally get to feeling pretty good a long while before then :-)

raymond
6th April 2007, 06:48 PM
WOW, Thank you for the replies. I do live in the USA, the upper midwest. I went to a specalists when I was 18. He told me there is nothing to worry about & shouldn't do anything about it. He patted me on the back & said have a good life & sent me on my way. I didnt have the pain then as I do now. But the pain isn't the problem here, its the embarsement. I just cant get over the embarsement. Every day I get out of bed, the first thing I think about is what kind of clothes to wear. Hopefully its cold outside, so I can wear a jacket. I just dread warm days. Well enough said. I guess I'll have to make some type of decision about this problem. Thanks for listening & the replies. Ray

Debora
6th April 2007, 07:06 PM
Raymond, welcome to scoliosis support.

"Thanks for listening & the replies."

We can do more than listen and offer advice Ray. Whichever way you chose to go we can and will help and support you every step.

Love to you.

Little Ali
6th April 2007, 07:15 PM
Hi Raymond :welcome2:
I'm so glad you've found this site and the people to talk to. Everyone here is lovely and such a great source of support and advice.

I hate to hear of you being in so much pain and so unhappy. That's no way to live. I put up with my pain for about 5 years before I did anything cos I was too scared of the surgery and the impact it would have on my life. I had surgery just coming up to 10 weeks ago and I don't regret it one bit! In fact, I wish I hadn't waited so long.

Before surgery I was taking sooooo much pain medication that I think I started to get immune to it. I also resorted to alcohol, although not muh cos I'm a lightweight and can't take much. I was just miserable with the pain as well as the way I looked. I hated catching glimpses of myself in windows or in the mirror and was the queen of jackets (I own loads of em)

I really urge you to go the the doctor about is so s/he can refer you to a specialst. Also, please remember, having scoliosis is not your fault, or something to be embarrased or ashamed about. I bet that if you open up to your wife and other people and how much pain you're in, they'll be more undersranding than you think and it'll help them understand you as a person and why you're down and reosrt to the alcohol. I hid my pain from people for years and it wasn't til I told them about it that they managed to understand why I was withdrawn sometimes.

Like Mark said, finding someone to talk would be a great thing to do.We're all here for you too.

Good luck to you
:squeeze:

Amazed Jean
6th April 2007, 08:43 PM
Raymond,
Upper Midwest? Try Dr. Jon Lonstein at Twin Cities Spine - info@tcspine.com
Telephone 612-775-6275
He's written the textbook on scoliosis used in many major universities.
There are a few of us here that really liked him. He is open and frank but he is very knowledgeable. Everyone there was really good to talk to.

The embarassment will own you if you let it. There is no shame in admitting that you are embarassed. I let it get me at least two times a day, sometimes more.I try to get over it quickly- I have to get on SSO or call someone or do something that really occupies me to get past being totally disgusted with my body. But in my case there isn't a fix available any more. If you do nothing - then it's for sure that you aren't going to get any better looking. I really think you should cruise some of the xrays here and see other SSO ers . There are some awesome stories and some great help.

mark
8th April 2007, 12:17 AM
Originally posted by amazed@Apr 6 2007, 06:43 PM

The embarassment will own you if you let it. There is no shame in admitting that you are embarassed. I let it get me at least two times a day, sometimes more.I try to get over it quickly- I have to get on SSO or call someone or do something that really occupies me to get past being totally disgusted with my body. But in my case there isn't a fix available any more. If you do nothing - then it's for sure that you aren't going to get any better looking. I really think you should cruise some of the xrays here and see other SSO ers . There are some awesome stories and some great help.
Could not have put it any better. You really do have a lovely way with the English language Jean

Amazed Jean
8th April 2007, 04:33 AM
Mark, Thanks for the compliment.

Since I have been thinking about Ray for a few days, I am trying to delve a bit deeper into what I think about MY scoliosis. I have had many years to think about how I feel about scoliosis. It does own me. I am thrilled for others that can move past it. But I cannot. I have my hang ups and more than a little embarrassment about scoliosis.

I still have to be able to take a look at my back. I just can't do it and really avoid mirrors and cameras. I dress my self and then take a quick glance in a small mirror to see if I remembered to brush my hair. I ask either my husband, mother or daughter if I'm ok from the back. I guess I just don't want to face "the music" as it were. We have loads of mirrors on closet doors etc. I have even learned how to clean them without looking into them. Pretty slick Huh?

If I don't see it what? I know it's bad. I have people who love me. They see it. What in the sam hell keeps me from looking? Why do I duck behind in photos? Maybe I just don't want what I look like to be what I am remembered for. I'm trying to deal with it.

Lucy7
9th April 2007, 12:30 AM
Ray,

I am so glad you found us. You are not alone. I have scoliosis rather than kyphosis and the main problem I had with my Blue Cross Blue Shield Insurance was that my scoliosis was considered a "pre existing condition" and P.E.C's are not covered on my plan for the first 2 years. That means that almost any problem I have with my legs, back, neck etc are put under that lable which is a royal pain in the butt for me (plus soooo expensive- I have a huge bill to pay right now and am very depressed about it). But if you have been on your plan for a few years you should be OK.

Ray, I think the worse thing about our conditions is that it is so easy to feel our bodies have let us down and we have no control. That's not true. Once you face it and start seeking treatment you will be in the driving seat and get some kind of control back.

Take care and my thoughts are with you,
Lucy

GillyG
9th April 2007, 08:50 PM
Originally posted by amazed@Apr 8 2007, 02:33 AM

I still have to be able to take a look at my back. I just can't do it and really avoid mirrors and cameras. I dress my self and then take a quick glance in a small mirror to see if I remembered to brush my hair. I ask either my husband, mother or daughter if I'm ok from the back. I guess I just don't want to face "the music" as it were. We have loads of mirrors on closet doors etc. I have even learned how to clean them without looking into them. Pretty slick Huh?

Oh, Jean, I've been there myself. I was slipping into a bit of a depressive state before I had my consultation with Mr Cole. Words will never describe how grateful I am to him for giving me the chance I was denied as a youngster. I may still have a small hump from the back but it's hardly noticeable under clothes and I actually enjoy looking in the mirror from the front now as I have two hips for the first time since I was a child.

Ray, remember I'm almost 50 (eeeek!) and the surgery has quite literally turned my life around. It's definitely not too late for you to consider surgery.

Gilly xx

Marcilo
10th April 2007, 09:07 PM
Ray, Welcome to SSO.

I am not regular here but do login on and off. Here is my take on this entire scenario. I know every one is different and has different view point but here is how I feel. Before I start let me tell you I too have Khphosis and live in Midwest area.

I can understand embarrassment and frustration that comes along with Kyphosis. The very first thing that normally come to mind is "Why me??" or "What did I do wrong to get this?" but then come to think of this, this is not some thing by choice. It's a condition and if I had my way or if I had to choose I wouldn't be picking that can cause trouble to me. Well that is what I tell everyone, some people have heart problems, some are diabetic, well I have this. It was never my choice and since I am in it I have to go through this. I do talk about it and I feel there is no harm in talking, in a way people understand why I say no to them when they call me to help them move or when I refuse to lift heavy stuff. There is no harm in talking to your wife either. It's important for her to know how you feel and why you feel that way. Assuming you were to have surgery, considering recovery time, you will definitely need her by your side as partner.

Yes, deciding what to wear and what not to wear can be troublesome but then if I have my friends and family around me why would I really care about how some one walking down the street feels how my back looks like. I would say rather than shutting yourself try getting on some Physical therapy program. Active lifestyle can strengthen back muscles and can reduce back pain. Please see a specialist and get measure of your curve

All on all, its some thing you will have to take control of and hopefully its not the other way around.

Cheers
(PS I am in ohio)

Amazed Jean
11th April 2007, 01:36 AM
Ray, As youcan now tell. You have people out here that care about you. Marcilo in the midwest also must bring it closer to home and from a male view point. What more do you need? We want you to feel better.

We will be here a long time.
When you're ready.... Kick yourself in the butt for a great reason - you! And hurry up about it -- the whole world needs you.