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hstonek
07-13-2004, 12:30 AM
Has anybody been told they needed surgery but had no real pain? I am afraid that the benefits may not be worth the risks of surgery. I am 55 yrs. old, was diagnosed with scoliosis during my teens
and did not have surgery because it did not increase after puberty. During
my adult life my S curves were approx. 50degrees. Approx 10 years ago a dr.
told me that my curve was increasing approx. 1 degree/yr and I should
monitor it and if it continued to increase, surgery would be indicated. It
was monitored for 4-5 yrs and did not increase. AS of 1982 - the lumbar was
50, by 1989- 56, 1993-60 degrees(age 43). In 1994 the x-ray showed 42
T4-T11 right thoracic curve and 60 T11-L3 left lumbar curve. I can tolerate
the pain and seem to have good motion range but am afraid of it increasing
as I age. I have gone through menapause which may have contributed to the increase.
I went to see a Dr. who I had seen 8 years ago and he told me that my
curves had increased to 55 and 70 and recommended surgery. This really
scared me when I saw the 70 degree part of it. I am very upset and
afraid of surgery and any complications that may occur but, realize that if the curves increase at the same pace,
and surgery is not done, the curves may increase to more than 100 during my
lifetime.

Theresa
07-13-2004, 12:26 PM
hstonek, I am 48 (49 in August). I had a 79 degree T curve and a 44 degree L curve. I too had very little pain. What got me concered was every so often I would get a jab in my lungs on the left side. The doctor said it was probably from my ribs. Your heart and lungs can become involved with scoliosis if it gets to bad. My surgery was an anterior/posterior surgery done on April 9 &13, 2004. I'm still recovering but at my 2 month check up my curves were at 22 degrees T and 18 degrees L. I don't get the jabbing feeling in my lungs anymore. I would highly consider the surgery. Maybe you should get a second opinion and see if another doctor has the same prognosis. You should also read the book about scoliosis by Dave Wolpert. (I'm not sure if I spelled his last name right. You can order it on line. I have it and still look back through it at times.) In some of the posts there is a link to the book. Theresa

lrmb
07-13-2004, 03:50 PM
Hi there, I'm a lot younger than you, but I also have been struggling with the fact that I've been told to have surgery but have very little pain (my curves are only 46/30 but progressing). After a lot of thought and research, it seems like progressive curves cause many problems other than pain. I would try and find some good second opinions and talk to others who've gone through this. Remember that you aren't alone... Best wishes, Laura

lindabar
07-13-2004, 09:28 PM
Hi Hstonek,
I am age 50 with a 53 degree thoracic and a 71 degree lumbar curve. Like you I am in no real pain except for TMJ headaches that may not be related to the scoliosis. I do have muscle fatigue when doing just about every prolonged activity, including just sitting. I can not walk as fast as my husband, who is the same age as me. It is hard for me to know what is caused by the scoliosis and what is just aging. No doctor has recommended surgery for me, only suggested that it could be done if I wanted it. The last doctor I saw told me that my ribs would end up touching my hip if I did not have the surgery. I am probably going to have the surgery next year after my new insurance kicks in and after we go on a long planned vacation to the barrier reef. I am willing to accept the risks of surgery in the hope that the quality of my life will improve. There are many of us in the same boat as you, good luck!

momoflacrosse
07-13-2004, 10:33 PM
Hi :

I guess I have the opposite issues from you as I have a 58 degree T and 40 L curve and have pain 24/7 I also have major kyphosis and a great deal of trouble with my ribs. I have been trying to find a surgeon to take me on for corrective surgery and it just seems that these guys up here in Toronto don't feel that scoliosis is a painful condition - boy I really wish they could spend a week or two in my body. Don't get me wrong the idea of this huge operation scares me too but at present I have absolutely no quality of life at all and so I feel that my only chance at getting something out of life again is to get myself fixed and if it takes a year or two out my life now I definitely think it would be worth it as the way things are now it is only going to get worse. I don't know if my point of view helps at all but there it is lol.

Nancy

spincon58
07-14-2004, 04:23 AM
HANG IN THERE NANCY

swan2
07-19-2004, 01:11 PM
Originally posted by lindabar
Hi Hstonek,
I am age 50 with a 53 degree thoracic and a 71 degree lumbar curve. Like you I am in no real pain except for TMJ headaches that may not be related to the scoliosis. I do have muscle fatigue when doing just about every prolonged activity, including just sitting. I can not walk as fast as my husband, who is the same age as me. It is hard for me to know what is caused by the scoliosis and what is just aging. No doctor has recommended surgery for me, only suggested that it could be done if I wanted it. The last doctor I saw told me that my ribs would end up touching my hip if I did not have the surgery. I am probably going to have the surgery next year after my new insurance kicks in and after we go on a long planned vacation to the barrier reef. I am willing to accept the risks of surgery in the hope that the quality of my life will improve. There are many of us in the same boat as you, good luck! I am age 60, and did not have the option for surgery when I was younger. My health is bad now, outside of having kyphoscoliosis, so I have to be on oxygen 24/7. Breathing problems certainly will occur in later life without some kind of help. I wore a brace for a few years as an adolescent, it didn't make that much difference though.

LindaRacine
07-19-2004, 03:31 PM
Breathing problems certainly will occur in later life without some kind of help.

Hi Swan...

Sorry to hear about your pulmonary problems. It must be tough to have to carry oxygen with you everywhere you go!

I wanted to respond on your comment about having breathing difficulties later in life. My understanding is that while some scoliosis patients may have a small loss of pulmonary function, it usually doesn't have any significant impact until one's thoracic curve reaches 90-100 degrees.

So, I personally think one should not consider this as a significant reason to have scoliosis surgery, unless their thoracic curve is projected to be severe.

Regards,
Linda

Karen Ocker
07-19-2004, 04:57 PM
Linda:
With an 80 deg thoracic curve I had lost 30% of my lung volumes on pulmonary testing. (Never smoked, not obese and no asthma.)It was very frightening and seemed to get worse no matter how I tried to keep fit by walking and Pilates.

I had a stress test because of this breathing difficulty - nothing was wrong with the heart. The cardiologist said it was from the scoliosis. Also my heart was shifted and my EKG became abnormal. After my revision the EKG returned to normal.

It seemed like once the curve reached that magnitude(I did have a "solid fusion")the thing accellerated. Dr. Boachie called it "cascading" and told me not to wait.
Karen

LindaRacine
07-19-2004, 06:58 PM
Karen...

I knew that someone would respond. :-) It always happens.

Just about every book I've read on scoliosis uses the 100 degree number as the point at which someone with scoliosis has severe loss of pulmonary function. With an 80 degree curve, it was very likely that your curve would have increased, and caused even more of a problem in your case. While a 30% loss of pulmonary function isn't great, it's not all that unusual. My understanding is that most adults lose some amount of pulmonary function as they age. Things like smoking, asthma, and living in cities with poor air quality will all have a negative impact.

Whatever the truth, I think we can all agree that loss of pulmonary function should not be used as a scare tactic for an adult with a 40 or 50 degree curve, because it's highly unlikely that anyone in that category will have enough loss of pulmonary function to have any real impact on their life.

Here's the abstract of a study that is relevant:

Lung function in adult idiopathic scoliosis: a 20 year follow up.

Pehrsson K, Bake B, Larsson S, Nachemson A.

Department of Lung Medicine, University of Goteborg, Sweden.

Severe idiopathic scoliosis may lead to respiratory failure, which can be treated by assisted ventilation. Twenty four patients with surgically untreated idiopathic scoliosis who had been examined in 1968 were re-examined in 1988 to assess changes in lung function and risk factors for respiratory failure. The patients were aged 15-67 years in 1968 and had a scoliotic angle of 10-190 degrees and a vital capacity of 1.0-6.0 litres. Spirometric values and scoliotic angles were determined in 1968 and 1988, and arterial blood gas tensions in 1988. The decline in spirometric values over the 20 years was of the same magnitude as the predicted decline due to aging. Arterial blood gas tensions in 1988 were strongly correlated with the scoliotic angles and spirometric indices recorded in 1968. Hypoxaemia and hypercapnia was seen in four patients in 1988 (then aged 43-67 years) and these were the four patients who had a vital capacity below 43% predicted in 1968. The remaining 20 patients had blood gas values within normal limits. Two further patients had died from respiratory failure before 1988, so a total of six patients had developed respiratory failure. In a multiple logistic analysis vital capacity expressed as % predicted in 1968 was the strongest predictor of the development of respiratory failure, followed by the scoliotic angle. Respiratory failure occurred only in patients who had a vital capacity below 45% predicted in 1968 and an angle greater than 110 degrees. Thus respiratory failure develops in adults with scoliosis with a large angle and a low vital capacity when normal aging reduces the ventilatory capacity further. Such individuals merit close follow up.

PMID: 1877034 [PubMed - indexed for MEDLINE]


Regards,
Linda

Karen Ocker
07-19-2004, 08:09 PM
Linda: Although this might be rare I can only speak of my own experience which I found harrowing. The study you cite probably drew blood gases at rest, not during exercise. My oxygen saturation dropped during the pulmonary stress test. It's the exercise tolerance that goes first. I noticed I was different than others when I went walking before my surgery with my husband, a former smoker and 8 years older than I. He and his siblings are all much older than I and former smokers. They all had to wait for me because I felt like I was smothering.

On the other hand maybe it was more noticeable because I was already fused for 44 years and my ribcage was already stiff so any curve change might be more detrimental pulmonary wise. I do not know if any studies were done in a population such as mine. (Persons who had fusions many years ago with loss of correction in middle age).
Towards the end I would even have difficulty breathing after a large meal/my gastroenterologist said my stomach was laying on it's side.
On the other hand, one scientific study is seldom definitive in medicine. Several studies of this type would be interesting.

Pre-revision curves:30deg cervical, 80deg thoracic, 40 deg lumbar.

Karen

Danite
09-09-2004, 02:44 PM
Hi hstonek,
I will try and keep this short, as a survivor of Spinal Surgery and a experimental survivor of one of the first Spinal Fusions back in 1954. My Spine was completely fused over 80% and I have no metal support of any kind so you can guess what it looks like now. Just recently I had to go on medical and applied for SSDI and my pension. At 54 years old, my 50 year old fusion is worn out, I have numerous deseases of the Spine including Spinal Stenosis, and Joint Arthritic condition thru out the curvature, not mentioning the rotation and increase curvature, I could go on but you can see the picture. Sure the pain and discomfort is sometimes more than I can handle, but at the same time, I have NO INTENTION OF SURGERY. I figure that I have been lucky and have had a pretty normal life, so I will try and keep going the best I can and for as long as possible. Also I do have shortness of breath, surgery is a personal thing and I would think twice before jumping.
God Bless and Good luck.

momoflacrosse
09-09-2004, 10:18 PM
Hiya Karen:

My curves aren't that large but I can really relate to the terms of feeling like you are smothering - I have that same issue although my heart issues may be contributing to it. Sometimes when I have walked upstairs to bed when I lay down I just can't seem to get enough air . I also have trouble when I overeat as well - I have put on weight lately and it is all laying right over my stomach as if there is nowhere else for it to go. Anyway I just wanted to tell you that I have felt those symptoms as well.

Nancy