curve decreasing on its own?

[mammelc]

Hello Bea I just looked at my message -- sorry it is so long.
Have you read the book Stopping Scoliosis? It is very informative about surgery and etc. but I am sure your meeting with Dr. Tredwell will give you lots of information. My email is mammelc@imag.net

Hello Bea and it is nice to hear from you! It is really nice to hear from someone who is so close by and who is sharing the same dr. and experience. My husband works in the States these days, so we have US coverage for surgeons down there, and so we have been to see a few... there is quite a range of opinions on just when to do surgery. After having done a lot of research and in view of our daughter's situation, we feel surgery would be the best option. Dr Tredwell says that there are other surgeons who would agree with us, but he doesn't do surgery until 55*no matter what. Leah also needs thoracoplasty which DR. Tredwell does routinely, but which not all surgeons are trained for. But at our last meeting he basically told Leah to learn to live with it, or go find someone else.


Ashley, I haven't heard from you for a while...how are things with you?
I am so glad, Bea, that your daughter has no pain! Because if my Leah didn't have any, I wouldn't be in such a hurry to get her into surgery. But she has had to stop running and cannot do many of her other athletic activities. And she can't get a full night's sleep! All I have to do is think back to my days of being pregnant and how chronically tired and uncomfortable I was to be able to relate to that. Dr. Tredwell has recommended rowing and there is a rowing club out here that I have checked into. Wrestling sounds like a great sport by the way, and I am wondering if your Leah has an incredibly fit torso from the wrestling and that is what is preventing Pain?

My family have spent alot of time recommending alternatives -- they can be very anti-medical intervention -- and Dr. Tredwell does not leap into surgery, so I have spent alot of time looking at alternatives, and I think that the exercise route is a great way to deal with pain before and after and wonderful with lesser curves (also bracing) but everything I have researched generally comes back to one thing: if you wait too long and the curve progresses too much, you may never get the correction you would have achieved with an earlier surgical intervention.

And quite honestly, Dr. Tredwell may stick to his guns and still refuse to treat Leah after our chat on March 1 (although we have a tentative surgery date for July ) but I would rather have him do it than go down to Seattle, since he does do state of the art stuff. so if he has recommended surgery, I think you are in the best position possible for your Leah's condition, if you can say there is any bright spot in her situation. How is she feeling about all this? She seems very active and is she at all worried at the prospect of having to take a year to get back to her present level of fitness? Does she notice her own scoliosis?
Because our Leah is so fed up with the pain and restriction and lack of sleep that she is ready to do anything even stay flat on her back for six months just to make things better. But a year ago if she had been told to do that, I don't think she would have handled it very well.

I have spent alot of time on the adult forae which is very illuminating, because I know that this condition is a lifetime thing with no quick fix, and those people have alot of recommendations for dealing with the chronic pain, dealing with the disk failure that occurs in a percentage of the population years after surgery, and dealing with any complications which may pop up 20 years down the road. A recommendation that pops up over and over is Pilates which is simply targeted strength training. And Yoga --loads of stretching and core strength.

And there is a physio clinic in San Diego that has conducted studies showing that targeted weight training and aerobic activity can do wonders for muscle strength imabalances resulting from the scoliosis(although I find their claims that their program decreases curves to be somewhat suspect as many of the lesser curves will go away on their own....but under 30* they had fair success. I will paste their link in)http://www.spineandsport.com/

My feeling with our Leah is that even if she doesn't get any worse, she will be better off with surgery even if the pain does not go away completely (and this is barring any complications, of course) and there are studies pulished on Entrez-NLM that support this... a link to the online library is below. A study published in 2003 by AJ Danielsson showed that although scoliosis patients showed a higher incidence of back pain 23 years after treatment than did people with no scoliosis, (25%) there was no more pain in the surgical patients than in the non-surgical patients. My concern was does the surgery cause trouble down the road? But it seems that if there is trouble down the road it is from the scoliosis itself rather than any surgical intervention. ... http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=PubMed

Does your Leah have any torsion? Ours is getting a noticeable dowager's hump and rib bump, and her breathing is being compromised.
And does your Leah have one long curve, or an s-curve? Leah's is King curve type II right thoracic upper 45* and lumbar compensatory 40* to the left (fairly common) which, as Dr. Tredwell states responds the most poorly to surgical intervention (only 48% of patients being 100% satisfied after surgery, but 100% --barring complications-- feeling better after surgery than before)

The groups with mainly lumbar or one long curve (thoracolumbar) seemed to have the highest satisfaction with results.


I look forward to keeping in touch and I promise not to be so long-winded all the time.
Carol

[beatrice9606]

What a wealth of information!

Hi Carol!

Thank you so much for your extensive posting! What a wealth of information you are sharing there with all of us! I really appreciate your insights and web references!

You obviously have done a lot of research and are very well informed. We are just getting into all of this.

What you wrote about Dr. Tredwell is very comforting news for us. I now feel confirmed in my beliefs that he is suggesting the best for our Leah. What he mentioned in our Dec. 16 session is that there are two approaches for surgery, one from the back and the other from the front. Based on Leah's curvature she seems to be a candidate for the frontal approach. Dr. Tredwell also said that he is working with another surgeon there and that that one is doing the frontal ones and he is doing the ones from the back.

The one concern I have re the frontal approach is the scarring and its psychological implications. A scar in the front will obviously be a daily reminder, especially for a girl. My sister in Rhode Island was told by a nurse friend, who deals with scoliosis surgery patients regularly, that if at all possible the approach from the back would be much preferred for a girl. Have you given this any thought?

Just yesterday a friend of mine told me about the benefits of yoga for pre- and post surgery. You now confirmed that with your comments. Thanks!

Re Leah's fitness, yes, I think her torso is quite fit from all those wrestling practices. Before wrestling Leah did cross-country and in a couple of weeks she will start with track, mainly long-distance running to train for the Sun Run, which she has run for the last few years.

Leah also wanted to practice for the Dragon Boat race. I have some reservations there as it is not regular rowing. Friends of mine thought that would be very hard on her torso. In any case, I would not let her unless Dr. Tredwell gave her permission.

And how is Leah feeling about all this? Well, I think remarkably well. She says there is obviously no way around it and therefore she is just accepting it. The biggest deal she made when she realized that she would miss a one-day rock concert shortly after surgery. I offered to take her in a wheelchair, but she didn't want to hear of it at all!

Leah's curve is an s-curve, by the way. I don't think she has much torsion at this stage. One of her shoulder blades is just sticking out way more. I don't think her breathing has been compromised so far.

When I read how your daughter has been and is suffering, I consider ourselves incredibly lucky.

Carol, if you are ever in town and have some time to drop by on your way out to the Valley, please let me know. I'd be very happy to welcome you and your daughter! I will send you a private email with our address and phone number. Unfortunately, March 1 is not a good day as I am working all day and will return from Langley only around 5 p.m. (I teach at Kwantlen University College in Surrey, Richmond and Langley.)

Thank you again and talk to you soon!

Bea

[mammelc]

Bea, you wrote this in your email, and thank you so much for your prompt responses. It is really interesting to hear how other people have managed in recovery. Most accounts I have read by adolescents really gloss over the difficulty of recovery, and I appreciate getting the parent's point of view.
The book Stopping Scoliosis should be available through interlibrary loan, I would think. I have managed to get a number of books that way. Mine has gone missing just now and my husband may have taken it off with him. when he returns I will post the author's name, and perhaps we can drop it by your house on our way home from an appointment. It is a wonderful resource; quite comprehensive. But PubMed has the most detailed information I must say.
Your products to minimize scars sound very intriguing. YOur quote appears below. I have to say from your posts you would never know that you were born outside of Canada; that is not easy to achieve although people from Switzerland and Netherlands seem to be quite phenomenal at conquering the English language with all its peculiarities.
I certainly hope Leah's surgery will not be postponed as well. For us we need to do it now or in the fall. But really I just want it done albeit properly.


" just hope and pray that Leah's surgery won't be postponed. Mid June is absolutely perfect for me. I finish my work just around then and am off until the last week of August. I feel very privileged as I will have all summer to devote to Leah's recovery. If it got postponed, I would have to take some time off work and get a substitute. Yes, I do work for Kwantlen and have so since 1985. I am teaching German there (being from Switzerland and having done a good part of my studies there and later on my M.A. at SFU and a Diploma in Translation at UBC).

I meant to mention that we know another 16-year old girl here in Burnaby who had surgergy last September. Her doctor was Dr. Riley, who works together with Dr. Tredwell. Her case was even more serious than Leah's. After wearing a brace for a year, which didn't bring much, she had to have surgery. Hers was posterior. (I am catching on to the terminology, slowly :-) She is recovering very well and now swims twice a week and can do gentle jogging. I have talked to her parents a couple of times. She had to spend five or six days in hospital. The first two weeks thereafter were really tough. 24-hour care at home for the first week. Took the girl three weeks to be able to sleep through the night. After that it went much better. Her dad told me on the weekend that the only thing he wishes he had done differently is the way he had prepared her for the post-surgery period. It was really tough since at first she couldn't talk because of the tubes coming out of her mouth. It was also a very painful experience. HIs daughter didn't think it would be much worse than going to the dentist! "

I went back to the YVR children's Hospital Website and noticed that Dr. Riley is interested in Pain and Scoliosis; he is trying to figure out the determining factors for the pain as it does not seem to have much correlation to curve size. I would like to talk to him about our Leah.

I hope your Leah does well with the Sun Run...our Leah would love to get back to running. I am taking her to a Power Cycling class this Saturday because I think she will quite like it...she is a kid who likes to everything faster,stronger,more powerfully, and that class certainly finishes me off

I will let you know how Mar 1 goes, and when that book comes back I will let you know the author.
Carol

[beatrice9606]

Hi Carol,
Thank you for your reply and the offer to let us read the book Stopping Scoliosis (or give me the author's name, etc.)
I am sorry I won't be around on March 1 to get to know you and your Leah personally. Please let me know how the appointment went and what the plans are for your Leah. Should you have another appointment in March, April, or later on, let me know and I will make sure we can meet up, hopefully even at our house!
Thank you for complimenting me on my English! Being a language instructor I want to set a good example, of course. From what I notice these days in my college students' English I am proud of mastering English better than many of the students who were born here. In short, I love languages.
Could you send me the link to Dr. Riley's research, please? I went to the Children's Hospital web site but could not find it.
Have a good weekend!
Bea

[mammelc]

Hello Bea;
It's interesting how we can take our native language for granted, isn't it? I only began to take a real interest in English when I was living Brazil, learning Portuguese and trying to teach English. I switched out of Pharmacy in my 2nd year at UBC to study languages because of that experience.

the link for the reference to Dr. Reilly's research on Pain and Scoliosis is below, but I've pasted the paragraph in as there was not that much written there. But there is other stuff on that page you might find interesting.


http://www.cw.bc.ca/orthopaedics/scolres.asp#pain


"Pain and Scoliosis

Scoliosis is a abnormal spine curvature which predominantly affects adolescent women. The severity of the problem is related to the degree of curvature as measured on a x-ray, the amount of cosmetic deformity, and frequency and intensity of back pain. The amount of pain the patient experiences does not always correlate with the severity of the curvature. In work initiated by Dr. Reilly, it is hoped that studying the pain experienced by patients with scoliosis will determine the factors that precipitate painful scoliosis."

Brian would like to hang onto our copy of Stopping Scoliosis: the whole family guide to diagnosis and treatment
a little while longer, but the author is Nancy Schommer
the ISBN number is 1-58333-121-2

What the book says about anterior surgery is this:
the surgeons make an incision along the right or left side of the body, depending upon the direction of the curve....in the anterior approach, we have access to the larger part of the vertebra for fixation of spine instrumentation, and we can also remove the discs in between the vertebrae to free up the spine and gain better correction...anterior surgery may be used for a lumbar or thoraco-lumbar curve.

When we see Dr. Tredwell Mar 1 I will ask him about Dr. Reilly's research initiative into pain.
I hope you have a wonderful weekend as well

Carol

[mammelc]

Consultation with Dr. Tredwell

Hello Bea!
We had a very informative session with Dr. Tredwell on Monday, and I know you will feel very comfortable with all the issues around surgery after you have your consultation as well.
He has done roughly 1300 of these operations; in years gone by they used to operate at 40*; new unpublished studies are showing that curves of that magnitude only have a 50/50 chance of progressing; curves don't (in his opinion) shoot off unexpectedly in adulthood; when there is a marked difference in curve measurement it is usually because the previous radiologist was not so experienced at measuring the curves. The nice thing about being at Children's in YVR is that they track everyone in Western Canada as long as they are still living, because they don't have the issues of insurance providers having to approve the ortho. So they have a lot of long term stats.
It was interesting to hear that he doesn't operate on smokers because of the high non fusion rate. So smokers have to quit well before he will consent to do surgery.
Leah's curve, at 45* is a possibility for surgery,(she is already deemed skeletally mature, and the curve is unlikely to progress quickly) but she will have to do a number of things first. The pain does not come from the spine, and straightening out the spine may or may not help it. Most likely the muscle pain around the scapula is from misalignment of the other bones, ligaments and etc. (Leah has already had an MRI to rule out anything else) Dr. Tredwell sends people with this type of pain first to physio to strengthen torso muscles (because you cannot really do alot for ages after surgery) and also sends these kids to see a pain psychologist, Dr. Leona Kutner from North Vancouver, to see whether or not there is other stuff happening there psychologically -- he has had the experience of operating, treating everything, and the patient still has had loads of pain. On checking further, he has found out that there were many other issues there that caused the patient to obsess over all sorts of things... It sounded like a good idea to me, quite frankly; Dr. Kutner also teaches methods for relaxing and coping with pain...she works with the young cancer patients at Children's .
Leah wants to become a pediatric oncologist, so this was right up her alley. And the physio will be recommended by Dr. Tredwell at Children's as well, which is good news to me since I have been looking for someone who has experience with this particular problem...the sooner we get started the better.
If after we do all the above, and Leah is not happy with the cosmetic appearance, she can request the surgery. But Dr. Tredwell will not do it for the wrong reasons and not before the other procedures have been satisfied. But at least we now have a plan.
Dr Tredwell has also not experienced any neurological complications operating on curves below 70* ... he gets very good and safe correction anywhere between 40 and 70 ... after that the risks go up, but even when a patient had a curve of 80* the worst it got was a patch of numb skin she noticed when shaving her legs. He said however that even that minimal numbness makes his blood run cold because he knows that a shade closer and it would have been paralysis. He doesn't perform the wake up tests where they ask the patients periodically to wiggle their toes... the patient is wired with electrodes all over and the monitoring is constant; I have to say that was very comforting news -- it sounds like a very nice system.
They use autologous blood donation for the operation, or they administer a hormone( ?) that causes the bone marrow to produce blood cells in great quantities (primarily hemoglobin I think). It is also a form of blood doping that is hard to detect ... the red flag goes up when a Vancouver athlete shows a hemoglobin level of 16+ however. Great for the Sun Run, though if your Leah goes that route. Dr. Tredwell is tracking the costs of using that drug for patients who live at a distance versus the costs of collecting patient donated blood. He feels that it would be roughly the same cost and once he proves that, the province would be more likely to fund it. Then patients who live in remote areas would not have to travel to donate their own blood, and it would not cost so much.
Dr. Tredwell also performs routine thoracoplasty to collect the bone for the fusion. He shaves a wee bit from the tips of about 6 ribs and so the rib cage then drops down and flattens a bit.
Leah's shortness of breath is unlikely to be caused by the scoliosis, as that usually only starts to occur with major lordosis or swayback. Her kyphosis (slouch) and rotation is about normal for a curve her size.
She has xrays in May again to see if anything has progressed; if so, surgery in the fall would be considered.

Bea I hope this has been somewhat informative! I really feel our kids are in very good hands. It's just too bad the convalescence is so long and painful for them. No doubt you will learn even more at your consultation. Enjoy the Stopping Scoliosis book; it is a great overview although there is nothing quite like a consultation with the ortho himself.
Take care; it has finally stopped raining here.
Carol

[beatrice9606]

Consultation with Dr. Tredwell

Hi Carol!

Thanks a million for your very detailed report on your consultation with Dr. Tredwell. This was so comforting to read! I am now very much at peace with what's lying ahead of us. We are obviously in very good hands.
Your account was so informative. I wish I were as well versed in medical terminology as you are!
The plan he suggests for your Leah sounds very good. I can see how in your case this is the right way to go. I bet this will be quite a maturing exercise for your daughter. It will give her much insight in what children with medical challenges go through, a definite benefit in view of her career plans!
Our Leah has not made up her mind yet re her professional goals. A couple of years ago she used to say she wanted to become a research doctor or a vet. She hasn't said much lately. We'll see how she feels after the summer. (Her present dream is to study in California!) She is a top academic student in all subjects and will most likely be able to choose any field of study she wants to. She is very strong in Math and Science at this stage. Oh well, we'll see. For now we are just taking one day at a time.
Please let me know next time you come to Vancouver. If at all possible we would like to meet you and your daugther. (And remember, the guest room is yours anytime you want to take advantage of it!)
In the interim I wish you both well and may you all keep your spirits up!
Thank you again so much! You have been a real blessing to me at just the right time when everyone around me (except my immediate family) has been questioning our plan for surgery.
Take care and God bless you!

Bea