Scoliosis and falling over!

Hola

As you know I have been having more Bowen treatment and I had the sacrum move done last week, unfortunately I slipped while moving out of the way for a car last week and pulled a muscle in my right hip (well I think that is what it is)

On Sunday morning I got out of bed to find I could not straighten, the pain was horrendous if I even tried, so I have been walking bent over forward ever since, I have tried to bend and do some Yoga to try and just get upright but I simply cannot.

I had to miss my Bowen appointment on Tuesday because there was no way I could get in the car and bounce down the coast and back, I think Bowen might have helped but right now standing and walkign around for 10 minutes is too much for me!

I have cried very hard the past 2 days, not through pity because I tend not to feel sorry for myself, but through increased amounts of pain, the Sciatica is giving me grief on both legs and the fact I cannot take a deep breath without feeling it keeps me low :(

Having a hot shower or a bath helps and I do this daily, along with my heat patches that I have every night, the Bowen oil that I plaster everywhere and the Codeine I think I can recover from this, I don't think it will be quickly though.

This is one thing I am finding with someone who has Scoliosis, with or without surgery, our backs and surrounding muscles in the hips and shoulders are very weak and really take a hammering, I find that our bodies are very unforgiving, unless we walk slowly and constantly think about where we walk and how! I do everything I can to keep myself in shape, eat the right foods, practice Yoga when I can and have Bowen treatment yet I still find myself in this position, when the pain starts from somewhere else I find that the discs that are wearing out really start to complain, the pain is short and sharp and makes me suck in my breath, if I try to stand all my muscles shake!

Luckily the pool is being cleaned and will soon be full, I find water removes all my pains, all I need is a waterproof laptop and I will be away! LOL

Thanks for listening and I hope all you Scoliosis patients out there are OK

Osteoid Osteoma of the Spine

Scoliosis journal reported a case report about undiagnosed osteoid osteoma of the spine presenting as painful scoliosis from adolescence to adulthood

Authors: George Sapkas, Nicolas Efstathopoulos and Michael Papadakis

Abstract (provisional)
Presented here is a case of a young woman, with an undiagnosed osteoid osteoma of the spine, which presented with painful scoliosis in adolescence and was treated by bracing until her accession to adulthood. A more thorough investigation, years after the initial one, revealed the tumor. Surgical excision and stabilization offered the long- awaited cure.

Misdiagnosis resulted in intractable pain for years, deformity, the discomfort of brace therapy, and the frustration of a prolonged yet ineffective treatment.

Background
The most common cause of painful Scoliosis in adolescents is osteoid osteoma of the spine. Up to 25% of all Osteoid Osteomas are found in the spine, of which 60% are located in the lumbar spine, 27% of the cervical, 12% in the thoracic and 2% on the sacrum. There is a very strong correlation of this neoplasm with Scoliosis, since two thirds of spinal osteoid manifest as painful Scoliosis. It is however, extremely common for the wrong diagnosis to be initially set in a large, albeit unknown, number of cases. The lesion is often recognised after months or years of ineffective bracing.

Presented in the PDF download is a case of a young woman, who presented with painful Scoliosis in adolescence and was treated by bracing until her accession to adulthood, without the Osteoid Osteoma she suffered form being diagnosed. She therefore endured intractable pain for years, on top of which was added the discomfort of brace therapy. The impact of a prolonged yet ineffective treatment on the psychological status of a patient with chronic pain as well as deformity should NOT be overlooked! Download the case presentation of Osteoid Osteoma of the spine from Scoliosis Journal

Dr. STL and the big surgical consult

Dammit, I promised myself I wouldn't cry.

Mom and I drove to Tulsa and flew to St. Louis. Completely uneventful. Up early the next morning, called the shuttle to the hospital so we wouldn't have to worry about parking and grabbed breakfast in the cafeteria. Let me tell you something. Barnes Jewish is the biggest hospital I've ever seen. No joke, the building I was in is 20 stories high and all of the buildings cover SEVEN CITY BLOCKS. This place was GINORMOUS. I got two new x-rays taken. Oh, I forgot to mention, I was in excruciating pain THE ENTIRE TRIP. So I couldn't stand up straight (especially without my shoes) during the x-rays. I didn't bother to tell the radiologists or Dr. STL, I don't really know why. I was amazed to see the x-ray up on the lightboard. My bones are so off center when I am in pain. It was a good thing I stood like that, though. None of my previous x-rays had shown that my L4 vertebra is a good 1-1.5 cm to the left of my L3 vertebra. It was really crazy and disturbing to see (and I apologize for forgetting to take pictures); it looked...dislocated. Anyway, that was minor compared to everything else. My suspicions were confirmed, I do have early flatback syndrome. Mom was impressed with how much of the medical terms I understood. What can I say, Simone's website is incredibly comprehensive, and reading up on everything really helped me prepare.

Dr. STL does seem to be very good at what he does, but I still have some reservations. Basically he wants to do the same thing Dr. OKC said would be best for me (plus a few other procedures). But Dr. OKC wasn't willing to do it because he said it would lessen my quality of life drastically. Dr. OKC mentioned several examples of that (hygiene, bathing, dressing); Dr. STL mentioned none of those things, and I was so overwhelmed I didn't even think about those things until that evening.

His surgical fellow had said I didn't need surgery at all, that I just needed to exercise. I told him that doing the laundry and dishes constitute exercise for me. Hell, I have to take a pill after I get the mail! Whatever. So I was happy when Dr. STL said he was willing to do surgery, and he thought he could really help me. I burst into tears when he said he wanted to do a total fusion. And I don't really know what happened next.

We scheduled the surgery for Monday, November 16th. Here's what he's going to do: hardware removal (the rod and hooks I have now), fusion reversal (breaking apart the fusion I have now), a new posterior spinal fusion from T4-sacrum/ilium with two rods and a lot of pedicle screws, Smith-Petersen osteotomies in the lumbar area ("the surgical removal of a wedge or piece of vertebral bone to alter the alignment of the spine"), Transforaminal Lumbar Interbody Fusion ("T-LIF") from L5-S1 ("a way to do an anterior fusion from a posterior approach"), and possible decompression between L3-4 and L4-5 (in case my nerves are getting pinched or compressed). My first surgery took less than 3 hours. This one is scheduled to take 10 hours, and it costs $250,000. The hospital time will be about the same, I think I was in the hospital 6 days last time; they said 5-7 this time. But then I will have to stay in St. Louis for 1-2 weeks for rehab; thank God we have so many friends and family there. The surgical techniques really have changed since '96. He won't be cutting into my hip, the bone that he is removing with the osteotomies will eliminate the need for that. He said he will try to level my hips and decrease my rib hump. I won't have to wear a cast or a brace, which kinda scares me. I'd actually prefer to have some extra exterior support until I get used to being a walking Barbie doll. And that's what it feels like to me. (The brochure his nurse coordinator gave me says, regarding post-op care, "Shower like a wooden doll.") The spine has 26 vertebrae (7 cervical, 12 thoracic, 5 lumbar, the sacrum and coccyx). Right now I'm fused from T10-L3 (5 bones). If I go through with this surgery, he will fuse 3 below (except the coccyx) and 6 above, 14 total. I will be completely fused to my pelvis. He says there is an 80-85% chance it will help with my pain. Those are good odds, I'm happy with that. He said none of his patients that fell within that percentage have regretted doing it. I still need to talk to someone who has gone through it about post-op realities of it. I won't be going back to St. Louis until the end of October for some tests (chest x-ray, bone density, EKG, MRI, pulmonary function test, blood work); that will be too late to ask my questions. I need to know NOW.

I asked him if there was any other way to help me without fusing me completely. Not really. This whole time I was hoping for pedicle screws because I thought they allowed for some flexibility even after surgery. He said they don't, and even if they did, he's putting (Jesus Christ) two more rods in my back, one on each side of my spine. And the artificial discs I've been reading about really aren't meant for people with spinal deformities (I HATE that word), mainly just people with degenerative discs only. He said if he put any in me, my back would break them. Lovely. He had mentioned earlier that he met Dr. Delaware a few years ago, and that he's a good guy. It was at this point in the conversation that I told him I regret having the first surgery and my pain increased tremendously after it. So I'm really hoping that if I go through with this, I fall into his 80-85%, because pain-wise, I was in the minority last time. So I'm scared about that. I'm scared about trading my flexibility and quality of life for pain relief and medical bills I won't be able to pay off for a decade. Seriously, if he's charging $250k for this, he better pay for laser hair removal for my legs, seeing as how I'll never be able to shave them again. "Generally tub baths are not permitted after surgery." Ever??? I need clarification on that. Right now, I don't have enough flexibility in my spine to shave my legs in the shower, I HAVE to sit in the tub, and it's still really painful.

I have so many questions now, I feel like such a fool. Why did I think this would make anything easier?

Scoliosis: Bowen Treatment Part II

Tuesday 7th April

Last Tuesday I had my second treatment of Bowen this year, I was able to drive myself but driving does play havoc with my pain, I don't think the Audi A6 is the best car for us to be driving and when I have the energy we will change the car for something more appropriate for the country and for my back!

The movements that my therapist did last week included the lumbar sacral and pelvis, the coccyx move will be in two weeks.

We did some gardening on Thursday which was probably not the greatest idea we have had for a while since experiencing awful back pain the week before! Anyway, we took it in our stride, took many rests along the way and the end result was lots of vegetables and fruits :)

I was very stiff after the Bowen and the gardening added to that stiffness I think afterwards and this stiffness has stayed for the past few days also, my husband went down with Gout on Friday, so I have been taking care of him, this has not helped with my situation but as I am better than he is right now I can't leave him to take care of himself, he comes first right now.

The weekend that followed was spent pretty much in bed nursing Chris to better health, I get very worried when he has a Gout attack, especially as he gets so cold, he is normally a very warm person and doesn't feel the cold, so it is a shock when Chris is wearing jumpers, jackets and a dressing gown all at once!

Fortunately, Chris is now getting better and is able to get up and walk about, although I am starting to bend over again, I am quite simply - knackered!!!!

My next Bowen treatment is in 2 weeks so I hope I can make it through until then, one thing that is certain, I am better than I was a few weeks ago and at least I am now sleeping through the night!

Bring on the Bowen hehehe

Five days left

The Cobra coverage was cheaper than I thought, and my mom said she'll help pay for it. We decided it's worth it to see what Dr. STL has to say, so we're flying up there on Tuesday. My appointment is Wednesday, we're flying back Thursday. If we could stay longer, we would, but it would cost extra to change our tickets. Ugh, the whole quick trip idea was so I wouldn't miss work. I wish I could see my relatives while I'm there. Anyway, I'll post when I get home, probably Friday. I really have no idea what to expect, or even what to hope for. I think I can stop praying for flexibility and symmetry. I think the most realistic thing to hope for is pain relief, and the rest is just icing. I'm pretty pissed off, actually. Why is this happening to me? My x-rays don't look so bad, compared to some others I've seen online. Why am I in so much pain? I look fine from the outside, except for my limp and rib hump. Life sucks sometimes.

Scoliosis: Exercises for brace weaning

Scoliosis Journal posted the following information regarding: Specific exercises performed in the period of brace weaning can avoid loss of correction in Adolescent Idiopathic Scoliosis (AIS) patients: Winner of SOSORT's 2008 Award for Best Clinical Paper

Published: 7 2009

Authors: Fabio Zaina, Stefano Negrini, Salvatore Atanasio, Claudia Fusco, Michele Romano and Alessandra Negrini email

Background
Exercises are frequently performed in order to improve the efficacy of bracing and avoid its collateral effects. Very frequently there is a loss of correction during brace weaning in AIS treatment. Aim: To verify the efficacy of exercises in reducing correction loss during brace weaning. Study Design: Retrospective controlled study. Population: Sixty-eight consecutive patients (eight males), age 15+/-1 and Cobb angle 22+/-2degrees at start of brace weaning.

Methods
The start of brace weaning was defined as the first visit in which the wearing of brace for less than 18/24 hours was prescribed (according to our protocol, at Risser 3). Patients were divided into two groups according to whether or not exercises were performed: (1) EX (exercises), included 39 patients and was further divided into two sub-groups: SEAS (who performed exercises according to our institute's protocol, 14 patients) and OTH (other exercises, 25 patients) and (2) CON (controls, 29 patients) that was divided into two other sub-groups: DIS (discontinuous exercises, 19 patients) and NO (no exercises, 10 patients). Cobb angles and ATR were evaluated at the start and after complete brace weaning. Complete brace weaning was defined as the first visit in which the brace was no longer prescribed (ringapophysis closure or Risser 5, according to our protocol). ANOVA and Chi Square tests were performed.

Results
There was no difference between groups at baseline. However, at the end of treatment, 2.7 years after the start of the weaning process, Cobb angle increased significantly in both the DIS and NO groups (3.9degrees and 3.1degrees Cobb, respectively). The SEAS and OTH groups did not change. Comparing single groups, OTH (with respect to DIS) had a significant difference (P<0.05).

Conclusions
Exercises can help reduce the correction loss in brace weaning for AIS.

Skinny Coffee!

Hola followers

Slightly off topic for this post but I met a new friend on Facebook and we got chatting about our businesses and life in general, when asking what he was into he showed me his coffee, I am going to try it soon.

Here is some blurb about the coffee if you have not heard of it yet!

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Better for the World
* Fair Trade certified, environmentally friendly and a proponent of the Invisible Children's fund. Boresha isn't just great coffee. We want a better world.

Skinny Science Coffee
This award winning science technology is the first low glycemic coffee patent ever awarded. Because coffee causes fat storages in humans, the only way to fix coffee so that it does not stimulate fat storage is to incorporate the Glycemic index into the equation and to use buffered caffeine instead of regular caffeine.

I will leave you to decide about this coffee and when I have tried it I will report back and tell you my thoughts, has anyone reading this tried or heard of this coffee?

I have added a link to their website so you can read their claims for yourself :)

Speak soon

Scoliosis: Bowen Treatment Follow Up

As some of you know I was back for another session of Bowen yesterday, my first for 6 months, the last time I saw my therapist was September last year. I am pleased about this as this means I have had a fairly pain free life for the past 6 months and trust me I have not been able to say that for years!

It was a nightmare for me to actually get there, because we live in the country now, journeys to the coast can be a little lengthy, my therapist has also moved so she is now 45 minutes away and the car jounrney is a little something to be desired!

I was bent sideways all day yesterday and sucking in my breath a lot because there is a fine line between where I can stand and get comfortable and where the pain barrier is, I am also on my period which really doesn't help, however, since I have been having Bowen treatment the period pain are FAR FAR less than they ever used to be, this time around though my period has come a lot faster and heavier since having the treatment, this is a new one on me!

I had an hour's session yesterday, she checked my leg length and all is good on that front, it is the pelvis that is now out of line and it is that which is causing the pain I am feeling.

I had moves done on my shoulders, kidneys and back, the kidney move in Bowen treatment is effective for those of us with Scoliosis I am told, as soon as the treatment was over I was back in the car and coming home, it worked out well because my husband (Chris) had to go and meet a client in Fuengirola and I was in La Cala so he dropped me off on the way through, save me having to drive myself, which right now is not an easy accomplishment.

I slept better last night than the previous night, as I only managed to get 4 hours in the night before and I cannot work a full day on 4 hours sleep, especially with the pain levels I am experiencing.

I was up and about in the night, tossing and turning but at least I got some good quality sleep also, I find that when I am in pain I wake when I try to turn and then I feel the pain all over again, this prevents me from falling back to sleep, I never want to wake Chris because he needs to sleep too, he works so hard during the day so having him up all night as well is not fair.

I have found this morning that I can stand better, when I got up I did my usual routine which is clean the kitchen and get the dishwasher going but soon after that I was in pain and had to come back to bed, and this is where I am now :(

I hate being in bed all day long it is just not me, I like to be doing this and doing that, gardening, working, walking, seeing people not laying in bed!!!!!

At the moment I have to say I HATE SCOLIOSIS!

I am sure I am not alone so please take the time to have a vent on here if you wish xx