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  • Scoliosis

    Scoliosis

    Scoliosis is a curvature of the spine to one side, often in an S-shape. Read more →

  • Goldenhar Syndrome

    Common characteristics include facial and ear abnormalities, breathing problems, deafness, heart, lung, kidney and eye health issues, feeding problems and spinal and rib abnormalities. Read more →

    I have had left testicle pain for 3 years resulting in my testicle being removed,I have also had 6 spinal cord stimulater trials that was not successful.I am on multi medication and i am still in lots of pain ..there must be something else that can be done as i seem to been given up on by my GP and my pain team .





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    I had spinal fusion when I was 17,I am now 45 but it didn't go to plan,I am now getting rib and chest pain and breathlessness





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    I also had spinal fusion at 18 years old, and at age 61, I experienced the same symptoms, as you. I then went to the finest scoliosis surgeon on the West Coast, in the United States. He reconstructed my spine, to a healthier status, with titanium steel, and another fusion, using my original bony material. Hope this helps.

    im haveing a grade 3 cystocele operation shortly im haveing a spinal block as im terrified of haveing a general im tod its only a 40 minute op i was just wondering if any one else has had this with a spinal block many thanks





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    i have had a slipped disc lower 5 and degenerative disc plus siatice have had this for years, im on pain patches plus co codimal,i have had 3 spinal epidurals,they wont operate, saw someone at pain clinic 8months ago nothing since im getting desperate now as i leek urine too aswell as numbness in fingers ect at worst during the night i also now have tennis elbows i have had enough and getting no where





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    Hello I have just had my second child and my breasts have grown bigger to an F cup. I had a C Section and a spinal block and epidural. Now I constantly get a tingling/ electric feeling in one part of my back which comes and goes but when here lasts hour or so. I'm not sure if this is to do with my bigger breasts or if the epidural/spinal block has caused damage. The one part of the back this affect is where my bra strap goes accross my back hence why I think maybe the breasts. I get back ache now quite often and get indents in my shoulders from my bra straps. I also always suffer from sores under my breasts from sweating. Please help with an idea on what this may be as very worried. Thanks Kat





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    I am 62 and because of polio as a child now have a really marked scoliosis. Unfortunately the curve has trapped my sciatic nerve resulting in horrendous pain, burning sensations and loss of power in my right leg. My spinal surgeon tells me that only "life threatening" surgery can help. Obviously the prospect terrifies me but I feel desperate. This surgery is frightening enough for a youngster and I wondered if there is anyone out there of my age who has undergone this procedure.





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    Hi I'm 44 yr old female i had my Mir results as follows It confirms grade 4 degeneration in the patellofemoral joint and to a lesser extent in the load bearing surfaces,there is a very small tear on the posterior medial meniscus which they do not feel contributes to my symptoms. Consultant has told me to lose weight,now bearing in mind I've had two operations on my back ,one a discectomy an the other spine fusion where they ad torn my spinal cord,this was in 2011 and 2012 I've had nothing but problems with pain,it hurts to stand up hurts to sit down,now regarding my knee it is constantly swollen,pain is horrendous now my hip is starting to hurt I have been losing weight for about 2 months now but it's all going south as I find it very hard to excersise,I'm at my all time low as go or consultant won't do anything about my knee or hip,you are my last resort x





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    my seamen is a treacle colour.i am 57 and cannot get a full eretion.im taking 60mg morhine.for spinal stenosis.i have had treatment for haematosspermia.





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    HAD PROLAPCE OPP 6WKS AGO HAD SPINAL AND GENERAL ANNISTETIC WHY DOES BACK ACE TUMMY FEAL HEAVY LEAK SMELL WHEN OPP A SUCESS





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    Does anyone know of an excellent plastic surgeon in Sydney Australia? After spinal fusion surgery 4 years ago my friend developed a staph infection, since then she has endured 14 botched operations, spent over 12 months in hospital, had multiple pic lines, has unsuccessfully had washouts, debridements, skin grafts and has now been put in the "too hard" basket. She is at a loss. She has been left with a huge hole in her back, still has the staph infection, and there is apparently no further help available for her in Newcastle Australia. Living with constant pain and this infection is taking it's toll.





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Show more…

    Hi May. I couldn't help but notice your comment! I had two spinal fusions at age 12 so I hope that I'm qualified enough to try to help you :) Personally, I'm very happy that I chose to get the surgeries done. Like you I had chest and rib pains, mainly from my spine crushing my rib cage. The spinal fusion greatly helped that and I would definitely recommend having it done. I'm not sure how much back pain you are experiencing, but I can tell you that in most normal cases back pain improves also after surgery. For me, I was a rare and difficult case so I still have severe pain. But depending on how bad your scoliosis is and what type it is, it is extremely likely that all of your pain will be helped/stopped. I hope this answers your question a bit, and if you need anything else just ask! Good luck!

    hi im a 42 year old woman with chronic spinal sponylosis and PCOS, my breasts are size 42g and im only 4ft 11inches tall, no matter how fat or thin i am they never shrink. I get sweat rash under them that becomes infected and smells, they ache, they cause terrible crushing tearing pain in my spine and ribs, they hurt if i exercise and ive as yet found no bra that helps me.. the only time they dont hurt is if i hold them off my body, or i lie down on my side - they make me breathless and i have to take oxycontin for the pain in my spine. would i qualify for a nhs breast reduction on grounds of my spinal and hormonal problems and the pain i experiance that results in needing to rest and lie down often after been active to stop the pain





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    Hi, i was diagnosed with scoliosis at 13/14, and a syrinx syst in my spinal chord (creating fluid to enter the spinal chord and swell) and hypermobility at 16. I've been through various procedures and difficulties, such as panic attacks, episodes, pain, loss of breath, fainting, pain in joints, numbing sensations, loss of appitite etc. Not to mention a lot of emotional pain. I would just like to say that scoliosis is a condition you learn to live with and although there are many days it affects me majorly, i have not had the operation and i am able to move forwards with my life and learn different ways to cope with everyday struggles. I just wanted to say to everyone with this condition that there is a lot of pain involved and it isn't hard but you aren't alone. There are many contributing factors to my pain such as my hypermobility, scoliosis and syst, I have two curvatures of around 30 and 37 degrees. I have had MRI scans, x-rays and even therapy for my conditions. However i found the best thing was to simply adapt. Although it affects me a lot of the time,. most people do not know of my conditions as i've always been adament to not make them my identity. Everyopne deals with these things in their own way, but for everyone who is, I'm sure your doing an amazing job and i hope everyone all the best for the future :) you are all beautiful xx





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    There isn't really a deadline in age when they can't reduce curves. Though the earlier you have a spinal fusion, the more likely the curve(s) will reduce drastically. Many surgeons dislike performing surgery on anyone over 18-20 years old because it is much more difficult to get the spine to straighten. However you can have the surgery at any age. I personally had multiple spinal fusions done at age 12, but it all depends on the person.

    My hubby has got Cuda Equina, and his was an emergency job. He suffered two slipped discs in his back, and a herniated disc where the fluid from the spinal disc seeped out onto his cauda equina nerve group, and one disc hit his spinal cord, one disc was about 10 years old, one was recent. The ONLY viable treatment is surgery, you need a decompression of your cauda equina and possible removal of the spinal disc which has herniated or slipped into the cauda equina. It is a major op, but the outlook is good if you get it seen to early enough. Don't be fobbed off with strong painkillers, these will just mask the pain and won't help the sexual disfunction, which my hubby still has after surgery, the road to recovery is a long one, and after the op, he is looking at years recovering, possibly up to two years. You must insist on an MRI scan, this test is the ONLY way to correctly diagnose your problem. Xrays are not very good at picking this condition up, and it is incredably rare. A MRI will be able to tell if your case is operable, if it is, you will require surgery ASAP. Don't be afraid, things do get better even with this awful condition.

    I'm in constant pain in the lower left side of my abdomen. 3 years of tests. Every doc said it was my back. I had spinal fusion 8 months ago,so when the pain was still there the docs finally believed me that it wasn't my back. I had a colonoscopy today and was told I have Diverticula Disease! Could this be the cause of my pain for the last 3 years??





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    hi i have just had the spinal operation done. i didnt have the brace as i only found out that i had scolosis when i was 15, i am now 16. i was getting pain in my back and chest. my curves was 40 at the bottam and 60 at the top. i was worried about the operation but a month on and i am glad that i got it done. i was out of hospital in a week and i am more or less back to my old self. i dont get much pain now, and it didnt get that much pain in hospital as they give you lots of pain killers. So i hope this has helped you. If you are having pain i would have the operation as it can get worse :)

    I'm 17 years old and have just been diagnosied with spinal bifida occulta. I'm wondering if I should be worried about what the future might come to, I have pain most of the time in my lower back. Is there anyhing that people have tried to help with this pain? I don't really fully understand what having SBO means to me, such as what I should and shouldn't do. I just really need someone to explain in simpler terms





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    I have the step up from ocoult. Missing like course since on one side of back. And the nerves are exsposed docter wants to fuse my back. Cause it.s putting stress on vertebrae. I've read the stuff you have won't get better with nerves. But might help from being crippled later.. sounds like it hits us faster. Just walking kills my back and saimthing my hip pains are constant lost hand use in half. You might ask for surgery.

    hello, i know that my question has nothing to do with vulva's, but i need to ask this because i have no where else to ask.. for a while now i've been having weird random twitches, it started firstly in my spinal cord, but now i'm getting them in my upper and lower legs, around my shoulders and also around my ribs. sometimes my spinal cord twitches are so bad that it makes my whole upper body jolt! so please someone reply asap because i want to know if i should go to the doctors or not.. i am a girl and i'm 15 years old. thanks :D





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    Yes go to the doctors. Could be a trapped nerve, though that would normally hurt. If you have been bending down a lot and picking up a load without keeping your spine in line, you could be risking a slipped disc and your twitches could be trying to tell you that youve done something to your back. I get twitches a lot too but thats because I had a heavy weight horse fall on me and tread on my t5 vertebrae.. Id deffo get it checked out.

    Another possibility you could explore is in the back. Sometimes you can get something known as referred pain. This is where a problem in one area can actually cause pain in another (a common example is a heart attack can cause shooting pain down the left arm). Although slightly different, noxious stimuli to nerves in the lumbar and sacral region of the back can sometimes give rise to testicular pain. This can be anything from bone problems (fractures or maybe but less likely spinal stenosis) to muscular problems. It may not be the answer but could be another path to possibly explore.

    I was diagnosed with scoliosis at 17 years old and had surgery when I was 20. I am now 27 and i still get a lot of pain, I was taking codeine or something stronger depending on the pain each day, but had some spinal injections 4 months ago which have helped, but need some more as the pain is coming back. I am having some more injections next month and I hope that they will help with the pain again. I can imagine that I will need these injections every 6 months, which as long as they work, i am fine with, though they hurt to have done! I am hoping that one day they will find out what the main source of the pain is and be able to fix it. Until then, I will have to get on with it. I am used to the pain now, which sometimes I resent as it gets me down, but I try to stay positive and always try to things as anyone else would. If anyone has any tips on what else I can try, I would be grateful. I have tried lots of medications and I have tried physiotherapy, acupuncture and I have been to the pain clinic. Some of these have helped, others not so much and would love to find a more long term solution.





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    I have scoliosis, ive had it since birth, ive had 3 ops, first to do something with my ribs second to put metal rods in, one snapped, so third was to take it out, it could of been snapped for upto 5 years and i wouldnt of known because my surgeon didnt get me a check up, now i cant have anymore operations because my spinal cord is so damaged :( im in pain every single day, does anyone have any ideas on what i can do to help ease pain a little??? Thanks!





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    My daughter has a sacral dimple above her bum as well and doctors did a mri and discover a tethered spinal cord. The doctor told us that dimple is sometimes a warning sign of tethered spinal cord. She had to have surgery on it when she was a year and a half. The doctors told us that if undiscovered it would of caused problems as she grew.





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    I am 62. l8 months ago I had a pelvic floor repair with sacro-spinal suspension under spinal anaesthetic. During the op, whilst my lower half was paralysed, I felt sick and my upper half was turned so I could use a vomit bowl. The nerves supplying the rib-cage and upper body were damaged. One consultant has suggested I have rotational injuries, but the hospital are still investigating my diagnosis. Versatis patches, acupunture, physiotherapy, tai-chi, gabapentin have not made any difference to my symptoms of constant pain, difficulty with breathing on exertion. I cannot lift, carry, sit in an upright position, drive my car. Fine finger movements such as applying eye-makeup, filing nails, looking for change in my purse, cause nausea. Have you any ideas where I could go to repair my nervouse system?





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    I am 17 and have a venous malformation like this lady, but it is internal and intwined in my spinal muscle. It causes considerable pain and after 2 years of hospital appiontments + constant pain killers i was referred to Dr Peter Rowlands (the same doctor as this lady) and he was able to diagnose me straight away and i am currently having sclerotherapy. I have had two treatments and am going for another this week. These treatments have definately helped as this week i have been pain free for the first time in two years which is great.





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    hey im 16 and i also have a venus malformation on my forehead and can be very painful at times! I was referred to a Dr, and next week i am going in for the procedure to sort it out but i have a big phobia of needles!

    Hi I am 42 drummer. I have had Scoliosis since I was young. I have also have been told I also have Kyphosis too. I had a spinal fusion in 1983 when I was 13 and had a Harington rod put in. The rod was taken out in 2002 due to fact that it had broke and I was in a lot of pain. I have a walking disability too, and this is getting worse due to the pain in my lower back, which is making it harder to walk any distance, as this results in my legs starting to go numb. I have have been hassling the doctors for years, and have had a few MRI's, but nobody is actually saying "yes we can sort this and help you". I keep getting passed to, or refer'd to the wrong doctors etc, and this all takes months and months. And now, 2 years later and I'm still in agony and its getting worse... I take regular pain killers, but they don't really stop the pain.





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    Hi I am 47yrs old. I am a disabled mum of 4 boys and I have suffered with severe back problems since my 2nd child (now 21yrs old) I have been big busted since the age of 13. PE and showers were avoided because of teasing. I am currently wearing size JJ but its uncomfortable and digs in. During my last pregnancy at 42/43 I hurt my back in a fall. I broke my cocyx and subsequent spinal surgery I m still in emense pain. Constant hospital and gp appointments fail to help I weigh too heavy for spinal op and breast surgery so I keep being told but not heavy enough for gastric banding. I am at my wits end I cant exercise or even take my kids to school. I am clinically depressed I am om more tablets a day also morphine based patches and lozenges. The marks left from my bra is so deep it is still visible next morning. Pplease please can anyone help me? I feel I just want to cut them off myself. I feel like an 80yr old my kids need me I have a 6&4 yr old at home they need a mummy that can do all the things their friends Mummy's do. Please help me. Julie :-(





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    I am 51 years old, I found out I have spinal bifida occulta when I was 32 years old. I have always been embarrassed by the patch of hair on my back. As I look back on my life, I can pinpoint certain events that happened to me as a child and young adult that are directly related to my back. I could never bend my body backwards so in dance class I was teased. I played basketball, volleyball and track. And I was all state in both volleyball and basketball. You can do anything you want with this spinal problem. Just know your limits. Don't worries about what everyone else thinks. I have 3 children, all had to be born c-section because I wouldn't dilate past a 4. I could go on and on. My advice to any parent is don't make too much of it. Don't tell your children they have a disability. Let them run hard and learn their own limits. I am thankful I did not know about this in early life. I probably would not have tried to succeed so much. If your child can be active let them. I know if I stay active hiking, and walking I feel much better. If I do nothing my body stiffens up and my pain is much worse. STAY POSITIVE





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    Im 27 years old and I have been diagnosed with spinal bifida occulta and I have incontinence and leg weakness and bowel incontinence to I have a fatty lipoma and scoliosis to and I have been told that I could loose the use of my legs in approximately 6 months to a year from now and the doctor won't do anything about it

    I had been going to physio for nearly a year with awful back pain, but it didn't really help. The physio just thought that I had normal back pain until one day she realised that one of my hips was higher than the other. I was referred to a sports specialist because I do a lot of sport. He took a look at my back and immediately knew that I had scoliosis. I went to the hospital to get some x-rays. I found out that I had a 26 degrees curve in the middle of my spine. I was only 12 years old, so they caught me early. 6 months later I got a spinal brace in August 2010 and I am still wearing it. I have to wear it 20 hours a day and I am struggling a lot because I hate it. I still have back pain though. I was recently told that I will get the brace off before Christmas and I don't need the operation :)





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    2 years ago I had a car accident amd have been left with a winged scapula. Emg tests suggest the long thoracic nerve is severed and I have c4 spinal injury. My lower back is now suffering. I find it hard to walk and told my back muscles are over compensating. My shoulder blade sticks right out and I cant move my arm due to pain. I have been left like this and wonder what treatment can help? Physio hasnt helped and ive been told that surgery may not fix the pain. Im desperate now! Please help me!





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