have you experienced serious side effects from scoliosis sur

My rods snapped while i was walking up the stairs out of ths blue...I went a&e got new ones...3 months later...went back to school and the first day back they snapped again...had to get new ones put in again...I've had these for about 5 years now...so fingers crossed it doesn't happen again...pain is unbelievable..

I had undergone scoliosis surgery in Nov 2006 when i was 15 yrs old.I had very small hump which was visible only when i used to take off my shirt.I visited AIIMS one of the best hospital of India but unfortunately doctors didn't warned me of the possible threat.During surgery one of my nerve probably got cut and my body below waist got paralysed and i am totally bed ridden.Like every teenager I wanted to fly enjoying different colours of life but unfortunately now i can't even stand leave aside walking,driving or flying in any sphere of life.If there is any possible solution to my problem,i want to make humble request to everyone please let me know about the same and please help me out.

 ***this post is edited by moderator *** *** private phone numbers not allowed*** Please read our Terms of Use

Hi..

I have 2 curves in my spine, one in between my shoulder blades and one at top of my neck...I had a spinal fusion in 1996..things were fine afterwards, but I find the last few years I suffer neck pain on a regular basis, the slightest little thing can set it off. Its as if the muscles tighten up and any movement is painful.

Recently I took up yoga, but fear I may have over done it, as the last 2 weeks Ive had searing pain in my lower back and down the back of my left leg (on top of the regular neck)

Im actually so fed up of it..Ive done all the massages,acupuncture, pain killers,gels,creams etc..nothing really helps any more.

I feel so restricted in everything I do..

I know there are many worse off cases, but it really can get you down...

will all this get worse as I get older. Im now 43 years old. The last time I saw a specialist approx 5 years ago, I think he said I had arthritis  or will have it?

 

 

 

I was born with double major idiopathic scoliosis and prune belly syndrome.  PBS is almost always found in men so it looks like I just got "lucky".  I wore the "Milwaukee brace" for a few years and then had 5 surgeries ending with a spinal fusion from T4-L4 with Harrington rods when I was 9 YO. Now, 21 years later my pain is getting worse all the time.  I have always had pain like my left shoulder burning and my lower back achy.  But now I am getting awful migraines on a daily basis and at least once a week I wake up and cannot move my head.  I have a lot of numb areas due to all of the surgeries.  I also have what you would call a phantom itch.  Where I get super itchy on the numb areas and cannot scratch it because I can't feel the scratching.  There has been many times that I end up scratching myself until I bleed because it itches so badly and I cannot feel it.  I have another set of xrays getting taken but no one has ever really been able to help me with all the pain.  I will not take any narcotic pain killers because I don't want to risk becoming addicted and because I have a 3 year old daughter that I stay at home with.  I am hoping they can do something because the pain is getting unbearable.  It is now in my neck, shoulders, hips and runs down my arms and legs.  But like I said, no one has been able to help me yet so I am not getting my hopes up...

Hi, I had the three stage surgery 2yrs ago aged 50. The surgery has made my life hell. I was far more able bodied before the surgery and I was relatively happy and active. The surgery has impacted on my health as well especially the anterior surgery..I was never told how incredibly invasive it would be nor was I told he routinely takes a rib..never mentioned to me or several others I met at the hospital.

My lower abdomen swelled up after the anterior surgery and has never gone back to normal..my belly button is half 'popped' like I'm pregnant...doctors response...must have developed IBS from the surgery I also suffered a collapsed lung!!

I have no feeling on my right hip, buttock and tops of my thighs as well large areas of hypersensitivity. I would give anything to go back in time...my lungs also feel really restricted and it is impossible to take a deep breath.

 

I am in a constant state of pain or discomfort and interestingly I'm more crooked now than before...vertical striped tops follow the shape of my curves....one boob is nearly 2 inches higher than the other and is nearly under my armpit...my shoulders are about an inch out of line too.

The surgeon is only concerned with his hardware and has never even asked if I have problems, pain or anything. He looks at the xrays gets you to stand and lift your shirt then it's "all looks ok see you in a year"...he then exits the room!

I'm still on large dose of gabapentin (neurontin)  anti depressants and pain killers.

We are ALL experiencing some of the same medical problems. As well, most/all of us are denied disability.

I have found some interesting info in searching of law, and other issues within the SSA.

All in all, they are not suppose to deny us and others who need help. It's a denial of our human rights, civil rights etc., of which our tax money funds these programs to begin with.

The only way for us to get approved is if we all join together in an "Class Action" Lawsuit against the SSA and other state and county departments as I'm sure you've been denied of as well.

And many of us do not want to take their prescriptions (poisons) to mask our pain, etc., and find much discrimination in this and many other issues concerning our disability.

Please write your story, your complaints,  to:

***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use

and I will take further steps to consult with either proper counsel and or other to help us all. But even without you, I will fight for my rights "Pro-se".

 

 

I am 62 and have a 52 degree curve. I have had back pain for years , especially after sitting for a prolonged period.
Recently I developed leg pain and weakness which is neurological. They saw it is from the curve which caused disc problems and stynois. They are recommending scoliosis surgery. I am terrified. I spoke with someone who had surgery and was fused. She can't bend normal - problems in daily living because of inability to bend due to the rod and fusion. How are you handling your daily functions not being able to bend to tie sneakers, personal hygiene issues differ, reaching in the car, or just turning?? Please give me some answers. Thank you and God Bless

I had my surgery when I was 14 and am now 28. No major complications despite it being a full spinal fusion.  I hiked Mt Whitney (24 miles) and Half Dome (14 miles) within the past year. I also run and work out about every other day, but stay away from sports. The only thing I dislike is the scarring and my slightly crooked-looking body (protruded ribcage).

Joanie if I was you I would look into the new keyhole surgery...the three stage is so invasive and the rods do impact on every aspect of your life! My story is just above under sirfur61 ..I'm 52 and am having enormous difficulty accepting what has been done to me...I lost my independence in so many areas including some personal hygiene and daily function..get lots of opinions and make surgery your very last option...I struggle everyday to come to terms with my loss of function, remember this... when you have rods put in your back gets longer but your arms don't...something else I wasn't warned about before surgery!

I had two Harrington rods put in my lower curve in the lumbar area when I was 15 years old, by an incision in my back. I have experienced what so far seems to be permanent nerve damage- there is an area of skin on the left side of my rib cage which is numb; the skin on my back where I was cut open is hypersensitive to pain, even just touching it can cause shooting pain; and also if I scratch a certain area on my upper leg it feels like I am scratching my lower back. I have had lots of back pain since the surgery, mostly in the thoracic section of my back but also the lumbar area some too. I get sciatica pain down my left leg. my posture is bad because some muscles are weak or tight. Most of the pain is probably not specifically a side effect of the surgery but just scoliosis in general. (Any medical professional who tries to tell you that scoliosis does not cause pain has probably never had scoliosis, and really doesn't know what they are talking about). After the surgery the joints above and below the fused area will become extra stressed, taking the stress of all the other vertebrae that should be equally distributed among them. So you have to be careful over time when bending not to stress your back in those areas too much, to avoid long term injuries. And emotionally, it took me about a year to accept the fact that I had surgery and become comfortable with my reality and move on. I had low self esteem for quite a while and I was very secretive about my situation. I would say that although I do have some side effects from the surgery I am sure it would be better than the alternative, because I was in much worse pain before the surgery. Also some positive side effects- I grew a quarter-inch after surgery :) and knowing that the surgery gave my spine certain weak spots motivated me to do Pilates regularly to strengthen and protect my spine and core, as well as other stretching and strengthening routines which have been beneficial to my overall health.

I know I'm late to this point. OMG! The same exact thing happened to me. I had the surgery when I was 15 y/o and my left lung collapsed. I haven't experienced any spike in my emotional state but have been having severe pain now for the past 3 years when the weather changes. I am now 25 and I've been going to Johns Hopkins because they think that I've developed some form of arthritis; rheumatoid/polyarthritis to be specific, but I wonder, after reading this thread, if it is just a result of the surgery. I'm so scared to be diagnosed with rheumatoid arthritis as it's the worst one anyone could have.

I had this surgery done 44 years ago and suffer everyday. It was performed at Sick Childrens Hospital in Toronto. let me know if you would like to speak to me. I am looking for some answers as well. Thanks

Hi!
Ive been going through 4 spine surgeries (scoliosis) and i got some sideeffects such as daily neckpain,dizziness,high heartrate and some pain in one of my legs. the last surgery was in 2011 and since then i have had pain,daily pain. I have been taking a lot of medications for it,got massage but none of this actually work. and who want to eat medication everyday? It's not good for your health.
Anyway,i have been trying to get some help from the doctor who did those surgeries like asking him if he could send me to see an neurologist but he refuse to do that. So i dont really know what to do? i want a life without pain just like everyone.
The disease i have is called Morbus scheuerman.
I live in Sweden and swedish hospital should be one of the world's best hospitals....but to be honest,i dont agree since i havent got any help in my case.
I do have a lawyer (since i have other things that i need help with) and he is trying to call someone who can help me....there has to be something or someone.

Well,it would be nice if there is someone who are in the same way like me or someone who just want to talk...message me.

I having the same problem as u. My left side waist and blade protusion is getting obvious nowadays after my 2 pregnancy. My lower back pain is constantly torturing me. Now my middle back on the left side is starting to feel pain too. I had to keep constantly go for massage, acupunture and cupping to release the pain. Does the girdles and sport bras helps to cover up the blade protusion? By the way, I had my operation when I was 13. I now 39 years old.

The left side is hurting most all the time but i cant take medication everytime since i will be so tired...thats not a life. Anyway,i cant wear any kind of bras since as soon as something is ''touching'' my back its hurting and kind of uncomfortable feeling.
Im 30 now and never been able to work or not much studying because of this. And the first time they saw it was scoliosis,it was in 1995,so since then ive been a regular visitor at hospital :(