schuermanns disease

Guest · Guest

I'm 37 now and was diagnosed with schuermanns disease at 22. I'm on alot of medication and also suffer from a borderline personality disorder. I take anti-depressants and i can see no future without meds. I have a 3 and a half year old who is my carer, he keeps me going. One treatment i do know that helps is accupunture, my doctor is brilliant and helps me out alot. I also have many professionals who maintain my health and sanity. My father passed on the disease and now my other sisters and brother and nieces suffer from it too and we are not a close family. We all deal with it differently. I can't do all the activities i used to do but i do lead a good life, not a fantastic life. This is the first time ive been able to chat to someone else who knows what i'm going through. The doctors told me that there was an operation that could be done however the success rate was only 40% and i could end up in a wheelchair.

Tim · Supporter Joined: 03 Mar 2006 Posts: 232

Did you talk to your doctor about the surgery? What surgery exactly did he recommend?

I suffer from degenerative disk disease and had many problems before and acupuncture was a real savior every time. My doctor recommended disk fusion but I am still thinking about it. I am keeping the pain under control for the time being. I read many good reviews on spinal fusion due to DDD but I am not ready to take the risk yet.

If you say that you lead a good life with your schuermanns disease and borderline personality disorder, then I wouldn’t try to change it especially if the chances of recovery are so low. How big is your curvature?

40 % success rate sounds to little for someone who admits leading a good life considering other problems. What would you do if you end-up in a wheel chair?

This is of course just my personal opinion and you should build yours together with your doctors depending on your individual condition. Do the benefits outweigh the risks?

cheeksta05 · Newbie Joined: 23 Jun 2006 Posts: 2

Hey! I was inpressed to see so many people here that were in some way touched by Shuermanns....I too was diagnosed with this dibilitating disease when I was 14 years old....I spent four years in braces, one being the Milwalkee Brace it was a very frustrating and difficult time for me and my family. I would hate the brace fitting because they would put me in this contreption and stretch me because the braces have to be fit perfectly to your body.. This illness , as it has been pointed out here, a very rare medical mystery. I lived in a very rural area and doctors would blame it my hunched back on the fact that I needed physical therapy and that I just needed to stand up straighter...My dad would get very frustrated and say you know standing up straight is not something one needs to be conscious of. It should just be automatic like breathing or your heart beating...I spent years bouncing from doctor to doctor one being three hours from our home and then he moved cross country so I was referred to another doctor 4 and 1/2 hours from home. This hospital was one of the best hospitals on the east coast and was really trully a life saver. Alfred E.I. Dupont Nemours Foundation in Wilmington Deleware was a wonderful place it was a children's Hospital and I was lucky because I was 17 when I finally had my spinal fusion surgery and they still followed up with me until I was 18 because I was a child when I first went there. Being a teen with this disease is really hard I think more so for a female because there is so so much is put on teen females and their physical appearance. I was teased and harrassed in school and told I just needed to deal with the harrassment I spent many days in tears and my self esteem was totally destroyed I dealt with so much emotional pain as a result of this illness I felt like a freak was angry at God for making me this way I fell into a deep depression and used food as a crutch for much of my pain. Now looking back I wouldn't change a moment of what I went through because it has shaped me and made me stronger. I would love to share my story with anyone who is willing to listen and I am finding you all very helpful here I am learning more and more about this illness at the time it was ruining my life it seemed I tried to block out what it was doing to me....I never dealt with it...went through all the motions to get me through and that was it I wouldn't talk about it after my surgery.....I had a 90% bend in my back, one of the worst cases every seen. In fact i was used as a text book case by one of the doctors becasue the hospital where I had my surgery was a teaching hospital. I was baffling doctors and it wasn't fully known how bad my condition had gotten until the surgery was actually preformed. I may seem like I am bouncing around here and for that I am sorry...Before my surgery I was told I may be in a wheelchair on a permanent basis by the time i was 30...telling a 17 year old that is sooo scary let me tell you...I was told I may need surgery I may not so I can relate to the not knowing that was mentioned. It is so scary living in the unknown. I was having breathing problems that were misdiagnosed for asthma....when in fact my back was hunching so far forward I was collasping in on vital internal organs. I can not say how many countless X-rays and MRI's I have had but it is so hard to weed something out from an X-ray... But to make a long story short I had my surgery It is was called a Posterior/ Anterior CD Rod Instrumentation Spinal Fusion so much technical junk I know...I now have two stainless steel rods in my spine and a rib and partial hip bone removed all fused in to my back.....I still live with pain and muscle spasms and all the scars I have the memories of being in a full body cast for 6 months post surgery and braces 23 hours a day pre surgery for 4 years.....I think I am much better now but there are days it really hurts alot....I just wanted to share my story and I hope i can help in some way I know what you are all going through and how frustrating this all can be....but do not let it wound your spirit....I am here if anyone needs me.... please feel free to e-mail me at **********if you need something or just want to talk I may not be able to offer medical advice as much as just moral support and sharing my knowlege through my own experience sometimes that can be our best teacher.....I also have a myspace account and AOL messanger as well as Yahoo I will leave the messanger for you just look up the e-mail for my myspace account:) Good Luck and Blessings to you:)

Love and Blessings.
Chrissy

**this post is edited by moderator *** *** private e-mails not allowed**

lisak · Newbie Joined: 02 May 2008 Posts: 1

Last month my son was having lower back pain and eventually has had x-rays, etc. His dr flippantly remarked that he had Schuermann's disease...and sent us off to PT. I am now doing research on the disease, and it is very frustrating. I cannot find specific answers on what to do now. Subtle bulges L3-L4 and L4-L5... I now read that it is more than 4 discs and all consecutive? Can someone please help me in laymans terms? My son is 15 and is a wrestler in high-school.

schuermanns disease

LIFEFORM SOCIAL COMMUNITY NETWORK