My sister has over 50 degrees s-shaped scoliosis along with congenital heart issues - Clear Institute A place to learn about Scoliosis - Get scoliosis advice and here from others challenged with treating scoliosis - Clear Institute Forums

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Posted By on 26 Jun 2010 12:35 AM
Hi, I have a daughter who has 67 degree scoliosis. My daughter's orthepedic doctor said there would be no way to treat her without the surgery. My daughter has disabliity she can not move at all without my help and also is quite weak and fragile. She is so small and so skinny. She has a lot of medical issues. Especially eating and growing problem. Anybody has a severe neuromuscular scoliosis?

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Topic Review

JWoggon

Moderator

29 Jun 2010 10:13 PM
Hello; I have personally worked with patients who have cerebral palsy, neurofibramatosis, and many other neuromuscular and genetic disorders that often lead to scoliosis. In the past, these patients have responded quite well to care (for one example, check out Noah's success story in the January 2010 CLEAR Newsletter here: http://community.icontact.com/p/clear-institute/newsletters/newsletters/posts/clear-success-story-noah/content). I strongly suggest you contact an Intensive Care certified clinic, and schedule a consultation. CLEAR Clinics who have achieved this highest level of certification will be best equipped to provide your daughter with the individualized care she deserves. Please feel free to contact me via the forum or directly if I may provide additional information or assistance! Warmest Regards, Dr. Josh Woggon jwoggon@clear-institute.org

luciewow

Basic Member

26 Jun 2010 06:35 AM
Hi, I have a daughter who has 67 degree scoliosis. My daughter's orthepedic doctor said there would be no way to treat her without the surgery. My daughter has disabliity she can not move at all without my help and also is quite weak and fragile. She is so small and so skinny. She has a lot of medical issues. Especially eating and growing problem. Anybody has a severe neuromuscular scoliosis?

Dr. Bosler

Basic Member

03 Dec 2009 12:32 AM
Hi Tessa, Thanks for your post :D We wish you all the best, and let us know if we can help. Dr. B

tessa99

Basic Member

02 Dec 2009 09:48 PM
hi docter bosler

tessa99

Basic Member

02 Dec 2009 09:41 PM
hi i have a 45 degree curve and i i have 2 have surgery 2 iknow how u feel i have had a lot of surgery and i am having surgery in 1 to 2 years and i used 2 where a brace bot i found out somthing that the braces do and that is they just make them worse

Dr. Bosler

Moderator

02 Sep 2009 04:21 AM
Hi Tim, I truly encourage you to see one of our doctors for an evaluation. At any age there is still a possibilty that your lung capacity could increase with treatment. Patients as old as 84 and possibly older have had postive results. Please have hope. One of our docs should at the least be able to decrease your pain and make your life much more comfortable. Sincerely, Dr. Bosler

tsande001@gmail

Basic Member

31 Aug 2009 10:33 PM
i am 55 with severe scoliosis, i wish my parents would have allowed surgery herrington rods, when i was diagnosed at 12. my lung capacity is shot and pain is sometimes unbearable. of course hind site is alwalys 20/20. now i have such a posture that it's impossible to get comfortable whether standing or setting. tim a

Dr. Bosler

Moderator

05 May 2009 05:32 AM
Thought you might find this informative.:) We have all heard that surgery is good for you lungs and heart. Shocking news, anterior spinal surgery actually DECREASES lung function!!!! Pulmonary function before and after anterior spinal surgery in adult idiopathic scoliosis. (Thorax 1996;51:534-536) "....mean forced expiratory volume in one second and total lung capacity were also reduced and there was an increase in mean residual volume." "Conclusions - Forced vital capacity is reduced at long term follow up in adult patients with idiopathic scoliosis who undergo anterior spinal surgery. The fall in FVC is small and is unlikely to be of clinical significance in patients with reasonable lung function in whom surgery is planned for prevention of curve progression or improvement of cosmetic appearance and pain. However, surgical intervention should not be undertaken in an attempt to improve pulmonary function."

Dr. Bosler

Moderator

22 Apr 2009 04:30 AM
Hi Unsure, I think this article may help, I hope the information is not too harsh. This article was found in the Journal named Scoliosis 2008 3:9doi:10.1186/1748-7161-3-9 They did a review of over 250 PubMed articles. Rate of complications in scoliosis surgery – a systematic review of the Pub Med literature Early hopes that spinal fusion could be used to leave the patient with a mild residual deformity were not successful as a third of patients lost all postoperative correction within 1–10 years post surgery. Loss of normal spinal function In each spinal surgery case there is an irreversible loss of the normal active range of movement in the spinal column [53-55], including the non-fused segments [56-58]. When compared with control subjects, the ability of surgical patients to side flex was reduced by 20–60% [59]. This loss of spinal mobility has gained little significance in the literature, especially in relation to the detrimental effects upon patient health, function, and quality of life. Winter et al. [59] argued that `it has long been a clinical observation by surgeons who manage scoliosis that patients seem to function well and be relatively unaware of spinal stiffness, even after many motion segments have been fused.' No data in support of this observation is provided. In actual fact, it has been shown that in non-surgical cases, pain increases as flexibility is reduced [60]. A higher degree of correction results in a higher rate of degenerative osteoarthritis and the high stress on the rigid spine means that even low impact can cause serious injuries Conclusion Scoliosis surgery has a varying but high rate of complications. A medical indication for scoliosis surgery cannot be established in view of the lack of evidence found within this review. Long-term risks of scoliosis surgery have not yet been reported. Mandatory reporting for all spinal implants in a standardized way using a spreadsheet list of all recognized complications to reveal a 2-year, 5-year, 10-year and 20-year rate of complications should be established which may help develop a more clear indication for surgery and a more accurate account of the complications of surgery. Trials with untreated control groups in the field of scoliosis are unethical, when the control group is exposed to the risks of undergoing surgery

Dr. Bosler

Moderator

20 Apr 2009 03:56 AM
Hi, It sounds as though your family has been through a great deal. My heart goes out to you. The decision to go ahead with surgery is a very personal decision for your family. Without knowing the extent of your sister's health condition, I cannot say for sure that the CLEAR protocol can help your sister. I can, however, tell you that there is a fantastic chance that it can. I understand the concern about her heart and lungs, as that is a great concern as scoliosis progresses. I would hate to see your sister have to endure another surgery when a non-invasive treatment is available. There are several studies available for consideration. I will contact our research department to direct you to the most appropriate documents. Thank you so much for your inquiry. I pray that your sister is yet another that finds success with CLEAR. Sincerely, Dr. Sue Bosler

pepperthepanda

Basic Member

18 Apr 2009 11:46 PM
My sister has over 50 degrees s-shaped scoliosis along with congenital heart issues. My parents and I are trying to decide whether we should have the doctors operate on my sister. She had gone under multiple surgeries for her heart with the last surgery about two years ago. When we first discovered her scoliosis shortly after last her surgery. The doctor put her into a brace, but it only worsen and an extra curvature appeared. Now the doctors are recommending surgery, but we are very concern about her body's ability to handle yet another major surgery. The doctors told us that it may affect her breathing compacity if we don't let them perform surgery on her. I just want your opinion on whether we should go ahead with surgery or not. I'm really uncomfortable with putting my sister through another surgery with so many possible complications that may affect her quality of life. Another question is are there at this time any studies out there shows complications of scoliosis patients without surgery when they become much older? Thanks :unsure:

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