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tonibunny
6th August 2004, 01:04 AM
Toni's Story
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I was born in the UK in August 1975 and diagnosed with scoliosis at the age of 6 months, in 1976. I had a double curve, with a thoracic curve of 60+ degrees and a lumbar curve of 40+ degrees.

I was treated by Mr Edgar at the Royal National Orthopaedic Hospital in Stanmore, and he continued to treat me right up until he retired when I was 25 years old.

I was immediately put into a Plaster of Paris cast to hold my curves in place and try to prevent them from getting worse. From the age of about 3, I also wore Milwaukee Braces. I'd tend to have the casts in the winter, and braces in the summer, which I wore for 23 hours a day. This continued throughout my childhood until I was ten years old. They were quite successful in holding my curves, but my thoracic curve suddenly deteriorated within the space of a few months in 1985, so I had to have surgery.

Here are some notes taken from my medical notes throughout my childhood:

1976 1st July: Upper Curve 62, Lower Curve 32

1977 26th Aug: Upper Curve 62, Lower Curve 45

1978 16th May: Upper Curve 63, Lower Curve ?

1979 29th Jan: Upper Curve 63, Lower Curve 55

1981 Jan 15th: Upper Curve 62, Lower Curve 55
Not seen for a year.
Would need fusion at age of 9 or 10.

1983 Feb 14th: Upper Curve 62, Lower Curve 53

1983 Nov 11th: Upper Curve 64, Lower Curve 50
Shows deterioration

1984 Mar 30th: Upper Curve 61, Lower Curve 55
Curves deteriorating
Will need surgery sooner rather than later

1985 Oct 18th: Upper Curve 70, Lower Curve 59
Clearly needs surgery

I had my first set of operations and the RNOH in Stanmore in January 1986. I had a discetomy and anterior release on the 13th of Jan, followed by two weeks in halo-tibial traction on a rotable frame called a "Stryka Bed", and then a Harrington Rod insertion and fusion from T1 - T12 on the 28th January. When I woke up, the first thing I heard was a nurse telling her colleague that "that space shuttle has just blown up" - it was the day of the Challenger disaster.

My curves were 75 degrees (thoracic) and 55 degrees (lumbar) before this surgery, and 35 degrees (thoracic) and 41 degrees (lumbar) afterwards.

Following this surgery I wore a cast for 6 months to protect the fusion, but did not wear a brace at all after that; I was simply monitored to keep an eye on the lumbar curve. My upper curve settled down at around 45 degrees.

1987 Aug 21st: Upper Curve 45, Lower Curve 38
Rib prominence reduced to 20 degrees

1988 Feb 19th: Upper Curve 46, Lower Curve 40
Rib prominence now at 27 degrees

1990 Feb 21st: Upper Curve 45, Lower Curve 46

1992 Jan 10th: Upper Curve 45, Lower Curve 58
Rib prominence 29 degrees

By 1992 it was clear that I needed surgery to fix my lumbar curve and flatten my ribs out too.

I had my second set of surgeries in the summer of 1994, just before my 19th birthday. These were done at the Middlesex Hospital in central London, as Mr Edgar had moved his practice to there. I had my Harrington Rod removed and replaced with Zielke instrumentation and my fusion extended down to L3. I was in hospital for three weeks. Following this surgery I wore a TLSO for six months and was then brace free.

I had my final surgery in autumn 2001 - a thorocoplasty (also known as a costoplasty), a cosmetic procedure done to further reduce the effects of my rib hump. I was very pleased with the results of this.

I am now 5'3" tall, so having my thoracic spine fused at the age of 10 has not really impacted my height much. My lungs are functioning at 47%, but this does not really have any effect on me other than I get puffed out more quickly than my friends do. I have moderate persistent back pain, mainly located in the trapezius muscles in my shoulders, which are in permanent spasm. Other than this, my scoliosis has caused no problems at all.

My curves now measure 45 degrees and about 33 degrees.

jfkimberly
6th August 2004, 02:36 AM
Wow. Great history, Toni. I'm afraid I can't provide as much detailed information, but I can give a background.

I was born in San Antonio, Texas, USA, in September of 1973. My severe scoliosis of the thoracic spine was immediately evident, as well as a spina bifida. From sometime shortly after my birth until 10 months, I was in plaster body casts. Casting failed to control the curve, and progressed to a degree where my orthopaedist decided that operating was my only chance (I don't know if they meant for survival, or to prevent paralysis... probably both). At the time, I was the youngest patient to undergo spinal fusion. I had a second fusion operation at 18 months.

Between surgeries, and for a time after my second operation, I continued with successive plaster casts to stabilize my spine while it fused. I learned to walk at 17 months, while in a full hip-to-chin plaster cast. After the second fusion was set, I had no more bracing or casting.

Unfortunately, I have no record of my pre-surgical curves, nor do I have any recorded measurements until March of 1980, when at 6-1/2 years old ( and post-fusion) a radiology report says:

AP SPINE FOR SCOLIOSIS: There is marked curvature of the thoracolumbar spine. Measurements are per orthopedics. Curvature fom T-9 to L-4 is 60. Angulation from T-9 to L-4 measures 60. The angulation from T-11 to L-4 is measured at 38. There are two surgical clips overlying the 11th and 9th thoracic vertebra respectively.
IMPRESSION: Marked scoliosis as described above with measurements per orthopedics.
2. Status-post thoracic or vertebral surgery with presence of two surgical clips as described above.
I don't have any other curve measurements, but an xray from July 23, 2004, is viewable in the Member Galleries at http://www.scoliosis-support.org/modules/m...p?lid=64&cid=10 (http://www.scoliosis-support.org/modules/myalbum/photo.php?lid=64&cid=10) .

While my curve was severe, scoliosis was not my primary concern. Even before my early fusion, I had frequent bouts of pneumonia. I continued to have almost-constant respiratory inflammation until about age seven when I was given the pneumococcal vaccine and stabilized for the most part. I still had significantly reduced lung capacity, and colds would rapidly deteriorate into a serious condition, but the frequency of pneumonia immediately reduced to no more than once a year, and gradually decreased since then. The last bout was in my mid teens.

At almost-31 years, I stand 4'11" tall and I weigh approximately 90 pounds. The restrictive lung disease is still my most disabling condition, but it hasn't stopped me from living a relatively normal life. I get winded easily, and I'm being evaluated for nocturnal hypoventilation, but otherwise I'm fine. However, I'm seeking an orthopaedic consultation to see if any surgical intervention is available to provide pulmonary and/or cosmetic improvement.

sins
6th August 2004, 12:19 PM
Born 1967 and my mother noticed that soon after birth my spine was "not quite in the centre of my back".
March 1975 fairly marked scoliosis of dorsal spine (45deg), convex to left.Review in 4 months.
August 1975 Condition is progressing,advise that this patient is a suitable candidate for Milwaulkee Brace.
Sept 1975 No neurological signs in lower limbs apart from pes cavus.Is to be fitted for Milwaulkee brace.Plaster casts were taken and waited for brace.
Feb 1976 Fitted with milwaulkee Brace.
May 1976 Milwaulkee brace has more or less obliterated the scoliosis.To come next fitter's clinic as Brace is tight at bottom.
January 1977 Is maintaining her correction well, review in 6 months.
July 1977 Fitted with Milwaulkee brace and condition seems to be satisfactory.There is some deterioration in the degree of the thoracic curve.Will review in 6 months.
At this stage I "fell through the cracks" in the healthcare system. No further follow up appointments were given and i outgrew the Milwaulkee.
November 1982. To be referred to Mr. *******'s clinic in december.No details of my scoliosis were recorded at that appointment.
Dec 1983 "Thank you for referring this little girl along to see me.She is now an appalling scoliosis.Obviously at this stage the curve is uncorrectable.Our immediate concern now must be with her respiratory function.I think that we are going to have to fuse the spine, even in this bad position to prevent further deterioration of respiratory function"
Jan 1983. Admitted to ***** Orthopaedic hospital.
The curve is 110 degrees, no obvious congenital scoliosis although the posterior arch of L5 does look a bit stretched.To go up in Cotrel traction.
Referred to cappagh orthopaedic hospital in 1983.

sins
6th August 2004, 12:34 PM
This 15 yr old patient has a vital capacity of 1.9 litres which is 66% of predicted.FEV1 at 1.55 is 81% of vital capacity.MVV is 84% of predicted.Diffusing capacity is 70% of predicted.Total lung capacity is 2.5 litres compared to predicted of 3.7.Blood gases show a Pco2 of 32.6 with a po2 of 95 which shows some degree of hypoxemia.
Feb 1983 Commenced Halo tibia traction .
April 1983 had to discontinue traction owing to development of some weakness in her left extensor hallicus.(drop foot)Put on cotrel traction again.
May 1983 Spinal fusion.
Unfortunately I was unable to get any correction on the table and it proved technically virtually impossible to fit a rod in her.I felt in view of this I would just do a formal fusion and put her in aplaster jacket.
July 1983.
This girl with very bad kyphoscoliosis has been fused in situ and is now out of her cast Her curves are essentially unchanged at 110/60 degrees.
Jan 1985 Will need to be kept under review as I think she is going to develop spasticity in her lower limbs at a later date.
Jan 1987 Scoliosis has not deteriorated , 102 to 106 degrees.
Final appointment in 1989.Discharged from system.
I had a private appointment in 2003 and have put the x ray in the gallery.apart from minor disc degeneration and a severe curve the fusion appears solid and I live a normal relatively pain free life apart from occasional neck pain.I have two young children and work and live a normal regular life.My lung function had dropped to approx 52% but has not seriously impacted on my day to day activities.

sins
6th August 2004, 01:43 PM
This may paint a very grim picture of scoliosis treatment.This should not alarm any parent of a newly diagnosed child.Remember that story takes you back over 30 years and apart from the advances in technology and understanding of scoliosis, doctors are now aware of what does work and what doesn't.Early treatment is the answer !!!
Sins.

ivanleg
6th August 2004, 04:01 PM
http://users.tpg.com.au/ivanleg/ivanbrace.html - my story there

ScooterGirl
7th August 2004, 11:53 PM
wow, i loved readin those stories!!!

mine isnt all that wow, got diagnosed on april 2003, have pain which started on october 2002 and my spine is 30 degrees, thoracic and lumar. im still havin to see a speciallist in william harvey hospital.

i hope ur livin in peace and harmany now!

Kayla
8th August 2004, 05:36 AM
Oh boy I dont want to type this!

Anyways when I was about 9 years old almost ten I had to get a physical to go to a camp and the doctor noticed my bad posture and said I should get some x-rays done. So after I got my x-rays I was referreed to an orthopedic surgeon who said I have scoliosis but that wasnt his biggest concern...he noticed something and referred us to a neurosurgeon. Ofcourse I have no clue whats about to happen. Then on with bad news I dont remember the date of the appt. but it happened. I was told I have Arnold Chiari Malformation type 1 Syringomyelia and I needed brain surgery. So I had no idea what I was getting into. On April 13th 2000 I had a decompression surgery. Complications have occured and I have had 13 surgeris total since 2000 I had my spinal fusion on June 26th 2003 so it has been a full year now since then and I am doing fine although I was diagnosed anorexic and I had an NG tube but now I have a G tube I am almost perfectly healthy now and I hope it stays that way!

jfkimberly
8th August 2004, 09:59 AM
Wow, Kayla... before the physical at age 9, you had no clue that anything was wrong?

Pikey
8th August 2004, 12:12 PM
Once upon a time there was a little boy called Timmy , a happy little boy who lived with his family in a small flat above a shop in a small Village in Kent England . One day Timmy , who had reached the age of about 5 , was told he would need to go to school .Timmy was not happy about leaving his mums side and was a little shy when he had to go out in the big world .So one day he put on his new uniform and put his satchel over his shoulder and with his mum marched off to his new school.After a few weeks Timmy was told he was to have a medical and would need to line up with all the other new pupils to see the nurse . The medical room was a large stationary cupboard that had been transformed for the day . Timmy lined up a little nervous but not knowing that the next 5 minutes was about to change his life forever . Timmy was lead into the room and was told to strip to his pants .The nurse was a large women who was dressed in her nurses uniform , she smiled and Timmy thought she looked kind .The nurse asked Timmy to bend over and touch his toes and that was the start of a journey full of tears and laughter , through kindness and cruelty.
STORY TO BE CONTINUED .

DublinPauline
8th August 2004, 11:04 PM
My name is Pauline, I'm 38 and I live in Dublin with my husband and four year old daughter.

I have congenital scoliosis and have an s-shaped double curve, the worst one a thoracic 106% curve. This is how my consultant described my scoliosis in a letter a few years ago: "You have a congenital malformation of your spine and in fact this is at the lower end of your neck just above your thorax and consists of hemi-vertebra which is basically incomplete formation of the vertebra. The abnormalities are what we would describe as balances so there is no real assymetry but there is definite failure of formation"

My scoliosis was discovered when I was about two and being treated for congenital heart problems (VSD). As a small kid, I was used to the idea of having and getting over successful heart surgery but couldn't understand why people were also interested in my back. My late father responded to my queries by telling me I had a crooked bone in my back. That was enough for me when I was little:-) . Unfortunately, it took until I was 10 to get to Cappagh (National Orthopaedic Hospital) for an initial consultation. I then spent two years in a Milwaukee Brace, then finally, nine months in Cappagh, Feb-Sept 1979. (Before that, the orthopaedic doctors in the children's hospital had told my parents that I was too young for treatment, better to see how it progressed.:evil:)

For seven months prior to surgery, I was on daily traction and also spent two weeks in a turnbuckle plaster, I guess to "loosen" up the curve. I had a spinal fusion in July 1979 and a Harrington Rod was inserted. I spent six weeks on a Stryker bed. I wore a plaster from chin to hip for nine months and felt as straight as a pin when the final one was cut off me in June 1980, just in time for my teenage years. Unfortunately, I haven't tracked down my early medical notes so don't know what the correction was. It can't have been dramatic as my main (thoracic) curve is now over 100 degrees. However, it has held well.

I live a normal life, go for fast walks, get to the gym for moderate workouts, etc but with about 47% total lung capacity as a result of having congenital scoliosis (44% Vital Capacity), don't have a high tolerance for climbing stairs/mountains, etc. I have no back pain and rarely get chest infections, one a year at most. My latest spine x-ray in January 2004 showed that my fusion is stable and has "barely changed" in the 25 years since my fusion. I see a Respiratory Physician on an annual basis and this is the area I need to pay the most attention to.

So I feel that I was lucky overall not to have been born 25 years earlier than I was but I did miss out on not being treated until I was 10. Today's children are lucky that treatment has advanced so much and there is no reason for anyone to have my level of scoliosis. Parents still need to be aware of all treatments and take an active role in making sure that their children get the best treatment possible! Please feel free to PM me if you have any questions or need more information.

Pikey
8th August 2004, 11:46 PM
As Timmy stood up he caught the gaze of the nurse , her face muscles had seemed to relax and her face was no longer giving that comforting smile . Little Timmy knew that something was wrong and he wasn't used to this strange silence that fell over the room.Finally the nurse spoke " I will need to speak to your parents , are they at home ". Timmy just looked back to scared to answer , he suddenly felt alone and vulnerable for the first time in his short life ." well child " the nurse retorted , Timmy choked the words out but was still to nervous to ask questions .The nurse told Timmy to get dressed and said he could go , as Timmy walked out he could hear the nurse talking to his teacher and he knew things weren't how they were meant to be .
Timmy's teacher kept him back after school and called his mother into his classroom , his mothers normal smile disapeared as his mother seemed to struggle to understand what she was being told . She took a letter from the teacher and went over to Timmy , he gazed up at his mother with a look on his face that he had done something wrong .
Timmy's mother was a elegant looking women with short curley brown hair and her face was so kind and warming that everyone that met her seemed to warm to her but his father was quite differant .Timmy was scared of his father , scared of his temper and scared of his fists .Scared that he would see his mother being threatened and bullied by his father , Timmy knew he had done nothing wrong but somehow felt guilty .
Timmy went home with his mother , they semmed to hurry more than normal .Once inside the flat his mother had his top off and was looking at his back . It was a strange feeling for Timmy he suddenly had a lot of attention and with an elder brother and a young baby brother he suddenly felt important and wanted but was not looking forward to his father coming home .
STORY TO BE CONTINUED

ScooterGirl
9th August 2004, 11:17 PM
ow no pikey i hate suspence!!!

andrea
10th August 2004, 11:21 PM
Well I guess it's about time I put Erin's history down, although I've been putting it off as it makes me confront the fact that I delayed getting to a GP. I'll copy this into the Infantile Scoliosis forum too as it crosses both.

Name: Erin Alexandra
Age: 23.5 months
Location: East London, UK

Erin was born on the 25 August 2002 after a very difficult labour and delivery. She was eventually born by ventouse, but otherwise healthy, with an apgar score of 9. Her spine was checked shortly after birth (don't know why but I vividly remember this) and appeared to be fine. She was given the all clear and we went home.

At her 8 month check, the HV again checked her spine to check for abnormalities and again all was clear.

Shortly after this, Erin developed a urine infection that automatically meant she had to go through several xrays and tests of the kidneys and thereafter to see a consultant on a regular basis. The xrays showed she had a renal reflux on her left side, for which she takes antibiotics on a daily basis. She will continue to take these until another scan, scheduled for summer 2006.

In early 2004 I noticed that her back didn't look straight. It was only slight, and only when she was doing certain things, so didn't think much of it. I had never heard of scoliosis before, so didn't know such a condition existed. I put it down to either me being a neurotic mother, or her just going through a growth spurt, and nothing to worry about. (Oh God, how I cried after she was diagnosed about this.)

Her back continued to worsen and on an appointment with my GP for a repeat prescription of antibiotics, I mentioned that I was concerned. (We had had appts with the renal consultant during this time, whereupon she was examined and nothing noted). Before I knew it, a paediatrician was rushed in and we had a referral to an orthopaedic paediatrician at the Royal London with a suspected scoliosis. I made the GP write it down as I'd never heard of it (I now feel like an expert).

While I knew the Royal London was a good hospital, I didn't trust them to come back quickly enough, and we were fortunate to be able to seek a private consultation with chap called Prof Iwegbu. He was the funniest chap - I had to call him the day of our appt to remind him to get out of bed! He had done some work at the RNOH at Stanmore and referred us there. A week later we had an appt and 2 weeks after that we had to cancel our holiday to take Erin in to have her plaster jacket fitted. We were due to fly to Crete the same day, but I would have given up anything to get her the treatment she needed.

She had an MRI and then her jacket fitted, and within an hour of waking up she was walking around the ward and eating everything we could offer her. She is so accepting of everything life throws at her, and I hope this continues, as I have a feeling it has more coming her way.

Anyway, that's Erin's story. If you've made it this far, thanks for reading.
And thanks for the site, I was lost before I found you.

Andrea
xx

Incidentally, the appt for the Royal London came through for the end of July, 6 weeks after she had been placed in a cast. They had classed her condition as "routine".

nojobro
12th August 2004, 06:31 PM
My daughter was diagnosed with scoliosis at the age of 18 months. However, she has other medical history so I'll start with that, as quick as I can, and then write about her scoliosis.

Bronwen was born at 30 weeks gestation (meaning she was 10 weeks premature) in April, 1999. She weighed 2 lbs. 7 oz. and had to be born early because something was going wrong with the placenta and cord and she wasn't growing properly. At that time, however, she was perfectly formed, just very skinny and malnurished. She spent 6.5 weeks in the NICU, where she had some trouble with her breathing and required oxygen for 6 weeks after we went home, and had other typical preemie problems that she got over with time. The most serious thing she had to deal with was a pnumothorax, which is a hole in the lung. This happened twice during the week after her birth.

At her second visit with the pediatrician after we brought her home, in late June 1999, Bronwen was diagnosed with developmental dysplasia of the hip, affecting her right hip. We were referred to a pediatric orthopedic surgeon, who prescribed a Pavlik harness. This harness has an 80% cure rate, but it failed for us. She was scheduled for a closed reduction surgery to fix her hip, and underwent this in mid-Nov. 1999. The first surgery was a failure, too, with her hip coming back out of the socket just one week later. The surgery was repeated in Dec. 1999, and this time we thought it was successful. She wore a body cast for 10.5 weeks. However, three months later, her hip wasn't perfect anymore and she began to wear a brace when sleeping. However, this didn't work, either, and she underwent a pelvic osteotomy and open reduction surgery at the age of 19 months, in Nov. 2000. This has "cured" her hip dysplasia and her hip is growing wonderfully. I have a website about her hip dysplasia: http://pages.ivillage.com/lilajean2000/.

Bronwen's gross motor skills have always been delayed. Around one year of age, she was diagnosed with mildly low muscle tone and hypermobile joints, which account for these delays, and also for why we had affectionately referred to her as "noodle baby" when she was tiny. Hypermobile joints in and of themselves usually cause no problems in a young child except for making balance slightly more difficult in certain situations (like when she is caught off-guard). She's just really loose and bendy because of both of these issues. She began walking at 17 months.

Meanwhile, at her 18 month physical, her pediatrician noticed her scoliosis. I am fairly certain it did not exist much before that time, as she had had x-rays about every 3 months since the age of 7 months, and while these x-rays were of her hips, her lumbar spine would have also been present on the films. Her curve measured 20 at that time, with the curve in the lumbar spine. I decided to have her seen by a geneticist, and while he did order a skin biopsy (since she was already having surgery), no diagnosis was able to be made other than "connective tissue disorder" of unknown type. She does not have Ehlers Danlos Syndrome nor Marfan's, nor any other known disorder that would account for her orthopedic issues. However, I'm of the opinion that it must all somehow be related. ;-)

After the successful osteotomy surgery, she wore a body cast for 8 weeks. After it was removed, I was certain her back looked worse. As we already had a return visit and x-rays scheduled for her hip 6 weeks later, I waited until this appointment to have it looked at. It was February 2001, and her curve had progressed to 35. She was then fitted for a brace, and she started wearing a TLSO (underarm) brace two days before her 2nd birthday.

A year later, we started seeing Dr. Lubicky at Shriners Chicago. We had been happy with our orthopedic surgeon for her hip dysplasia, but as he saw very, very few cases of infantile scoliosis, we felt better making the trip to Chicago to see Dr. Lubicky. She had an MRI at this time, and no problems were found.

Bronwen has continued to wear a brace and has done so for almost 3.5 years at this point, with her curve measuring 25 out of the brace the past two times she's been x-rayed. She does very well in it, though in the past few months she has started to express dismay about it. The brace corrects her curve quite well, down to 10-15. For about the last 18 months, Dr. Lubicky has been mentioning a new surgery for scoliosis called vertebral body stapling. This surgery is appropriate for children with moderate progressive curves measuring 20-45 and is currently being done by Dr. Betz at Shriners Philadelphia and by Dr. Lubicky of Shriners Chicago (though he'll be at Rush Children's Hospital starting 9/1/04). I have heard that perhaps two surgeons at Shriners St. Louis are also being trained in the procedure, but I do not know the status of this. Special staples are inserted along the convex side of the curve and serves as a sort of "internal brace". Dr. Lubicky has indicated to me that the surgery works best on specific cases, like my daughter's (flexible curve, stable for the past 3 years, with a lot of growing left to be done). We are trying to set up the surgery for this coming fall at Rush. We'll know more when the insurance responds to our request. The surgery can also be used to delay fusion surgery when there is a vigorously progressing curve in a small child. The staples do not need to be removed, and a fusion, if necessary, can be done as if they are not there. It is NOT appropriate for curves over 50, however. (Disclaimer...this is, of course, my understanding of the procedure <g>.)

Here are a couple links about the procedure, though I feel compelled to point out that they are already out of date; it has been done on over 60 patients by Dr. Lubicky alone at this point (I am not sure about Dr. Betz, though I know it's far more than the 22 surgeries quoted in one of these articles; I'm guessing he has done more than Dr. Lubicky).

http://www.spineuniverse.com/displayarticl...rticle1895.html (http://www.spineuniverse.com/displayarticle.php/article1895.html)

http://www.shrinershq.org/whatsnewarch/arc...erview5-03.html (http://www.shrinershq.org/whatsnewarch/archives03/betzinterview5-03.html)

http://www.shrinershq.org/whatsnewarch/arc...wpoint8-01.html (http://www.shrinershq.org/whatsnewarch/archives01/viewpoint8-01.html)

http://www.healthscout.com/news/1/8006702/main.html

If anyone has personal experience with this procedure, knows more about it, or has other links about it, I would be eager to hear from you. My e-mail address is nojobro@tds.net or nojobro@yahoo.com. We are hoping to have the surgery done in November 2004, if everything pans out well with the insurance <fingers crossed!>. I hope to make a website about our surgery experience when the time comes around and want all the information I can get. :-)

Nola, Brownen's mom

Pikey
30th August 2004, 12:06 PM
Roy Pike was burly looking man in his late 30's , he had ran his own woodworking firm for about ten years and though he only had a small staff they feared his quick fire temper . He lived in a three bedroom flat above some small shops in a small village in Kent named West Wickham with his wife and three children . He had always been the boss of his affairs and this was no differant in his marriage , he had certain values and everyone else had to match up to them and if they didn't then there would be trouble .As he arrived home that night he knew something was wrong as his wife Gwen was waiting at the front door for him . Little Timmy was sitting in front of a small black and white TV in a dimmly lit living room when he heard his mothers voice , he felt a shiver go down his spine and a tear welled in his eyes .His father appeared at the door to the living room , his bulky body seemed to take up the whole frame blocking out even more light to the room .Timmy stood up and went over to his father , his father grapped his arm and led him down the hallway and into the dinning room .Timmys head was spinning as his mother struggled to get his top over his head and then he felt vunerable as he was put it various positions and he felt his fathers rather large fingers go up and down his spine .Timmy looked at his fathers face to see if he was in trouble but he saw a different look on his fathers face , one that he had not seen before , one of uncertainty and that scared Timmy because he had not seen that look before .
TO BE CONTINUED

Amazed Jean
12th September 2004, 10:17 PM
Pikey
After only reading this much of your story, I already don't like your parents. I'm sending a hug to you to make up for at least one you didn't get then.

Pikey
13th September 2004, 08:30 PM
My mummy was nice , you'll grow to love her as the story goes on .Honest.Thanx for the hug though.

Amazed Jean
13th September 2004, 08:40 PM
Sorry didn't mean to jump on your Mum. I just wish she would have been hugging the heck out of you. My scoliosis story otherwise entitled "Keep your head in the sand and say, "No."
I was born in June of 1951in Gary, Indiana. We resided on a small farm in Crown Point, Indiana.
At the age of 11 I begged to go to scout camp and was shipped off for two weeks. While at this camp I developed a nasty series of boils down my left leg and someone noticed that one of my legs was fatter than the other. When I was back from camp and hauled to the doctor she thought I might have had a mild case of polio whenI was younger. ( Our doctor before this time had moved and records seem to have been lost but I do remember having polio shots with the rest of my siblings. ) I also had my tonsils out by this same doc when I was 8 - It was ugly. I was burned by the ether and was made to stay in a darkened room for a month for my eyes to heal. (I am legally blind without glasses but have great vision with my glasses.)
In May 1965 I had the first hint there was something wrong with my back. I couldn't button a dress that I had worn for Easter 2 months earlier. Our family Doctor Mary Carroll in Crown point sends us to an Orthopedic Doctor.
Ortho Doctor Jahns took x rays and said that I had a curvature of the spine but he didn't think it would get worse and he didn't think it had anything to do with polio etc. More later

Becky
19th September 2004, 11:44 PM
when are you going to finish your story pikey????? i really want to read the rest!!

Rowena
12th November 2004, 03:04 PM
G'day from Australia

It's more of my "story" than a medical history but I hope you enjoy reading it

http://spinekids.com/boards/showthread.php?t=1225

warning its quite long (I ramble a bit when I write) so you might want to make yourself a cuppa tea and get a biscuit before you read it

Row

Abbi
12th November 2004, 03:33 PM
oooh hey Rowena...!!! Glad you have joined us here at SSO!!! Welcome!

tonibunny
12th November 2004, 07:55 PM
Hi Rowena!!! Wow, your story is fascinating. I hope you stick around here so we can get to know you better :D

I identified with lots of your story as I was diagnosed at 6 months with a 65/40+ degree double curve and spent my childhood in plaster casts and Milwaukee braces. I'm about ten years older than you (I'm 29 now) but so much of your story is familiar to me......having scoliosis was normal everyday life for me so I used to look at the older teenage girls who had just been diagnosed and wonder why they were crying so much - I never cried, I just got on with it! Of course, I understand them now - it must be a huge shock to grow up "perfect" and then suddenly be faced with braces and a potentially deforming condition.

Anyway, welcome to SSO! :welcome: :joke:

Amazed Jean
13th November 2004, 04:37 AM
Rowena - Welcome to the site. Your story is great. Very compelling-Its a shame that most of us are so very far apart in miles - I suspect you could use a hug. O O O O Her's a few . I'm off to find one for myself. Jean

Rowena
14th November 2004, 03:23 AM
Yep, other side of the world's just a liitttleee far away :-) I'm not the kind of person to live my life in "what ifs", but I think I was only left with one in all of it.

When diagnosed (late 80's so it was "modern" time) serial casting was never an option given to my parents, it did not seem to be done in Australia at all and wasn't known about. And my parents spent a long time "fighting" with my ortho surgeon to get me into a brace, cause he didn't think they could "cope" with it. Being braced, they were basically fighthing a losing battle with the curves, and basically waiting til puberty hit and they increased again.

Why is a what if, because I'm originally from Renfrew Scotland, and we moved to Australia when I was six months old. If we'd still been in the UK, I probably would have been serial casted, more seems to be known by surgeons about Infantile Idiopathic in the UK, and the prevelance in Europe overall is a little higher then in other places.

But as I say, you can't live in the past, and things happened the way they happened for a reason.

Row

Rowena
14th November 2004, 03:29 AM
I forgot to add this bit, it was never a Milwaukee Brace; which having two thorasic curves it should really have been, it was always a TLSO; which for Thorasisc curves (one basically in my neck) is a little battle losing. My parents tried for a Milwaukee on four occasions, but the surgeon always refused, and they aren't prescribed in AUstralia anywhere since about 1980. He would never allow it becuase he believe the impact on teeth/jaw and the psychological impact was not worth the brace.

andrea
14th November 2004, 10:16 AM
Hi Rowena

Thanks for sharing your story. My daughter has infantile scoli, diagnosed about 6 months ago. She is currently in her second plaster jacket and we are waiting a date for her to go in for her third. To be honest, I don't know whether Australia has moved on at all. I have a friend in Brisbane whose daughter has scoliosis and the doctors still refused to cast her, calling it barbaric. They also refused to acknowledge that it was infantile scoliosis at all, insisting it didn't exist outside of Europe. Against all her doctors' advice, she got on a plane and flew to visit our consultant in the UK, who put her daughter in a cast. She flies back here in January to have the second one put on. She is currently liasing with various scoli associations in australia trying to get someone to show an interest and take up the bait to get them casting in Australia, the same way they have in the US. We can only hope.

Looking forward to getting to know you better
Andrea and Erinx

jfkimberly
14th November 2004, 10:24 AM
I'm in the U.S. and I was casted when I was an infant (1973/74). They used to do it here. I can't imagine why they would have stopped. Sure, it didn't work in my case, but mine was a bit stubborn (and congenital, not infantile idiopathic). But you say they had to launch a crusade to get casting here?

andrea
14th November 2004, 10:58 AM
That's what I thought Kimberly. There's a yahoo group to which I belong called CAST - casting as an alterntive to surgical treatment - that is all about introducing serial casting to the US and other countries where (I thought) it wasn't done as a matter of course. They all seem to have to fly to one of only a few Shriners hospitals that carry out the procedure.

I think Toni has dabbled in the same group, so perhaps she has more info. Perhaps I've got it wrong.

andrea
14th November 2004, 11:01 AM
The website connected to CAST is www.infantilescoliosis.org

Rowena
14th November 2004, 11:55 AM
Mmm.... Australian surgeons treatment of Scoliosis and all the stuff that comes with it is still strange (well I think so) for anthything other then Adolescent Idiopathic Scoliosis (now thinking about it). Only TLSO/LSO braces are used, because they believe Milwaukee's are barbaric (seems to be their favourite word, little thought if they are effective or not all they seem to consider is the "psychological impact"). And infantile scoliosis seems to be lumped into the same treatment cateogry as Adolescent Idiopathic Scoliosis.

I don't really know why, because Australia is one of the "leaders" in lots of other areas of medical reasearch/treatment such as treatment for burns.

And my surgeon went to the USA to learn the latest in scoli stuff every year for a long time (he's been practising since the 70's)

Routine scoli checks were stopped in the 70's/80's also. Because they believed that they were costing too much money and that they weren't finding enough people with it to warrant it. They hand out a pamphalet in some states in Year 7, but well........

Scoli in Australia has seemed to be for a very long time the "silent "disorder". That no-one knew anything about, and that you didn't know anyone else who "had it" and that you had limited knowledge of treatment options for the parents (until the invention of the net, the wonder of all info :-)

We now have a Scoli Association in Australia (I think they only started this year but not 100% sure), there still very young and developing stuff, but with time they'll come :-). I think there's also a Scoli Support Group in Queensland from memory.

All I can say is watch out Australia, if I get into Prosthetics and Orthotics next year, in 3.5 years you'll have me to contend with :-), I'll probably be the orthotist that docs hate because I'll make too many suggestions in treatment plans and other options ie casting, Spine Cor Brace, Milwaukee Brace mwa ha ha ha :-)

Row