Dr. Woggon - Clear Institute treatment

[Sherie]

Clarexp,

Dr. Lenke told us right off the bat that this will NOT be my daughter's last surgery. He mostly deals with revision surgeries so he's speaking from experience. He said there will be wear and tear on the remaining unfused areas, what he can't predict is when this will occur. It may be 10 years or 40 years, hopefully with the advances in surgery technique, it will be many, many years from now. My daughter would have a very uncomfortable life if she didn't have surgery so this is our best shot. We were also told there would not be a big difference in the outcome even if her lumbar curve progressed to 70.

As far as alternative treatments, a surgeon will not advocate it because none of them are scientifically proven to help. Our first dr didn't discourage us though, his thoughts were it couldn't hurt. He also monitored my daughter in the Spinecor brace, which ultimately didn't work. We tried the Clear Institute, went to Dr. Woggon himself, (you can read my earlier posts on this thread) and we tried pneumex therapy, also no luck. I would just advise you to approach any treatment cautiously, and ask many questions, especially when can you expect to see some improvement and if there isn't improvement by that time, you will need to decide if it's worth continuing or not. It was very frustrating for us to spend all that time, effort and money only to be disappointed over and over again.

I hope you have some success to share with us in the future, you really don't know for sure until you've tried.

[clarexp]

You did a right thing

As a mother, I understand and fully support what you did. By reading many posts from different patients, I feel that everyone's body is different and react differently even to the same treatment. I guess it is because the cause is different.

I will encourage my daughter to try some non-surgical treatments. She is not 12 and still growing. We have consulted several surgeons and only one said surgery within next 3 months. Other said, 50 or 70 degrees does not make too much difference to the outcome of the surgery. So we are going to give non-surgical a try.

One thing bothers me about the surgery is, all surgeons told us that, no implications, minimum... I found it is hard to believe. With 2 steel rods in your back, no problem for the rest of your life? or the next 20 yrs - my duaghter wil only be 31 then!

[Sherie]

Hi Rtremb

It's good that you have local support and the price if very reasonable. It sounds like your chiro. has very honorable intentions too, at least you feel like she willl be understanding and is not just after your money. I hope you'll keep us posted, maybe others can benefit from your experience. Let me know if you have any other questions about the treatment.

[rtremb]

Bish:
I have read a lot of your previous posts and we are feeling very unsure about taking our daughter to Minnesota to see Dr. Lawrence. It seems from your posts and those of others on this forum that the treatments don't work. This will be very expensive for us to go ($8 - 10,000) and while we would pay anything to fix our daughter's back (or even hold it where it is) we are very concerned about being taken by anyone who would take advantage of us in our current fragile state. We are interested in your opinion (and others on this forum) as to whether this Clear Institute is worth pursuing or not.

Since doing nothing is not an option we will definitely get a Spinecor brace for our daughter - she has not tolerated the hard braces at all so far.

[rtremb]

Sherie:

Thanks for the information. We will make sure the x-rays are taken in the same way each time. So far the x-rays taken by our Ottawa chiropractor show beginning of treatment curves lower than the x-rays done at the Children's Hospital (Chiro: T45, L43, Hospital: T52, L48). We are waiting for the official radiology report from the hospital which is delayed since they made a mistake on the first report. Hopefully we will receive this next week.

We are lucky I guess to have a chiropractor here in Ottawa who is able to follow-up on the intensive treatment. Esme will have to go to her three times a week and at $19.00 per treatment it is affordable for us. My daughter's chiro in Ottawa has scoliosis herself and has had her spine fused. She has had a lot of problems with her fusion and became a chiropractor to help others avoid the surgery. She is very committed to the Pettibon system and believes strongly she can help. She has helped some other teenagers here in Ottawa to avoid surgery so we feel pretty good about working with her. She has all the equipment in her office (wobble chair, traction units, special massage beds, etc.) and we have some equipment at home too now.

[Sherie]

Rtremb:

I totally understand how you feel, we know surgery is the last result, but here we are. I didn't want to put her through surgery only to later wonder if there was something else we could have done. Deciding on surgery has been the most difficult thing I've ever had to do because it will affect her life in some way forever.

We did see some improvement in the thoracic region, it was clearly visible on the xrays, on the other hand, although he claimed a 20 deg. reduction in the lumbar curve, I couldn't tell at all by looking at the xray. I'm still very skeptical about that. Bish also pointed out something very interesting in another post, he said when he took his before and after xrays, he was told to hold his breath on one of them, to let it out on the other. Since I wasn't in the room at the time they took the xrays, I couldn't verify that with my daughter. The other problem was that there were no local chiro. that we could go to for the same therapy, so the home regimen is an abbreviated version of what they do in the office. They also didn't have any long term documented cases of permanent correction. From what I've read, temporary correction can be achieved by any number of ways, but holding that correction is where the problem lies. The 4 year time he gave me was a guess, he didn't really know himself, in fact, he was trying some new things out as we went and even said so. It's definitely not very scientific.

One more thing I would like to point out, an out of brace xray that's taken minutes after they take off the brace isn't a true representation of the curves. My daughter was out of the brace for one week and had xrays taken before and after, there was a significant increase in her curves. Even though they appeared to be holding, that wasn't the case at all. I believe someone else on here said Dr. Couillard even said they had to be out of brace for one week in order to get the true numbers. If I had to do it all again, I would be more skeptical of everything I was told.

Good luck with your decisions, I hope something works for your daughter.

[Bish]

Rtremb

Hi there. I also went to the clear institute this year in March. I understand your train of thought, as my attitude was also that if I did not try it I would always wonder later if it may have worked. My case is different because i am an adult so the likelyhood of a reduction is much less. I suppose it can't hurt to try. My only thoughts for you might be this. I think the chiro will tell you that you have had positive results and will show you an Xray demonstrating this. If I was you I would schedule an xray through the medical system as soon as you possibly can to verify the results given. The sooner the better. If you have reason to suspect that the positive results provided by the chiro were bogus, then you may not want to put your child through years of crazy treatment methods that have no validity. I am not saying they ARE invalid but it would make me a little suspect if I had exciting positive results of curve reduction from the chiro, only to have these results invalidated by an unbiased doctor the same day/week, however quickly you can get additional Xrays.
I hope you can prove my theory wrong. I wish you success. All the best, Bish

[rtremb]

Sherie:

We have a question - did Dr. Woggon's intensive treatment actually reduce your daughter's curves? We are thinking if the curves can be reduced we will use the Spinecor brace to hold the reduction in place.

[rtremb]

Sherie:

Thank you for sharing your experience with the Clear Institute. Perhaps we are clutching at straws hoping for an improvement in Esme's curves but we are sooooooo reluctant to have the surgery - no going back once that is done. If we don't try the Clear Institute we will always wonder if it would have helped. We would be happy just to stabilize her curves until she has stopped growing. We are planning to go to Dr. Lawrence for the three week intensive program. Esme is very determined not to have the surgery so doing the exercises should be okay even if it is a long time each day - maybe put on some music she likes and try to make it fun! She will be seeing the chiro here in Ottawa three times a week too.

We think we can get the Spinecor brace paid for by the Ontario Health Insurance Plan (which would be nice since we have already paid $2,800 for the night brace which didn't work for her because it was way too uncomfortable to sleep in). If she actually wears this brace it might do some good - better than nothing we think. We are close to Montreal so could go to Dr. Rivard for the fitting (my husband already spoke with him). Also there is a chiro in Gatineau, Quebec which is very close to us who has the computer equipment to do the fitting and would be able to do adjustments if needed.

It is really good to have your comments on the Clear Institute and I will share them with my husband. It is good to be able to talk to another parent who is going through the same issues as us. Thank you.

[Sherie]

Hello RTREMB

We went to Dr. Woggon last year in Sept. for the Clear Institute treatment. It was a one week intensive treatment that involved many different things including the pettibon weights. What they don't tell you upfront is that they don't know if this will result in a permanent correction or not. When we were finished, he gave us a 4 year plan, to a kid, that's an eternity. It was not a 15 minute ordeal either, it was a 1 1/2 hour regimen, initially 2x/day then 1x/day after 4 months. I was very discouraged to hear that, especially not knowing what the outcome would be after 4 years. I'm convinced now that there would not be permanent correction because of the severity of her curve, I believe at this point there are forces involved that can't be stopped by bracing or therapy.

I don't want to discourage you, I too was trying to do anything to prevent surgery, but before committing to anything, ask for hard evidence. See if they have xrays of patients who show definite, lasting improvement several years after stopping therapy unless you're daughter is committed to a lifelong ordeal. Ask upfront how long do they expect treatment to last. It was very costly for us and we have nothing to show except that I feel we exhausted all of our options and I can be at peace with myself that we did what we could.

She was also in the Spinecor brace, another very expensive treatment. Her lumbar curve was already about 42 when she was initially fitted. She did not get any correction, in fact, her curves increased over a 6 month time. I spoke with Dr. Couillard in Montreal, she said a lumbar curve over 40 is very stiff and difficult to treat. I really think you should consult with her or Dr. Rivard and have them fit her for the brace if they think it will help.

I truly wish your daughter the best, again, I don't want to discourage you, just wanted to share our experience.

Good luck

[rtremb]

Our daughter started her Pettibon treatments today with her chiropractor here in Ottawa. Waiting to get more details for the trip to the U.S. for an intensive treatment. Really hoping this works since her curves are T50 and L48 which probably means surgery if it doesn't since she is a Risser 0.

[rtremb]

Dr. Lawrence, Minnesota-Idiopathic Scoliosis

We are seriously considering taking our 13 year old daughter - who has a severe idiopathic scoliosis - to Dr. Lawrence (Pettibon treatment) in Minnesota for a three week intensive treatment. Her curves are T50 and L48. We are wondering if anyone has had any success with the Pettibon treatment with a child this age?
(Dr. Lawrence worked with Dr. Woggon and Dr. Morningstar on a research project)

[Sherie]

Scoliomom

I appreciate the advise but we're already scheduled for surgery, she's at 65 in her lumbar (mayber higher by now). I just don't think it's prudent at this point to wait or hope for a miracle. I wish you the best, it sounds like you're getting good results.

[BETall]

Sherri
you may want to look into the Cheneau brace.... Several on this site are using it, along with Schroth methods of exercise.. My daughter is wearing it, and doing great... her curves started at 39'and 40' cuurrent IN BRACE xray show curves at 30'and 25'. we will have an out of brace xray in 3 months.

Thanks Scoliomom for encouraging other children and their parents to be ahead of the curve by investing their time in the combination of the Schroth Method and the Chaneau brace . I am impress .Tx for your courage on investigating and practicing another options.

[scoliomom]

Hi Neva,

I'm sorry to say that no, it hasn't helped so far. I think it has a lot to do as to how large the curve is when you start and the age of the patient. Sheena has an s-curve, it's now 40T/52L. She started wearing it in April this year and her curves were 34T/45L. As you can see, she's still progressing. She just turned 14 in Aug. The pattern I've seen on the Spinecor thread, the younger they start and the smaller the curve, the more successful they've been. I will say this, when she wears her brace, her posture is nearly perfect, you can hardly tell anything is wrong. My advice to you is if you can afford it, go to Montreal for the initial fitting, I wish I had so I wouldn't be wondering if it was done properly from the beginning. We will probably still go later this year, but I think it's too late for the brace to help. What are your daugher's curves?

Yes, slug pretty much sums it up, motivation is probably going to involve whips and chains.

Sherri
you may want to look into the Cheneau brace.... Several on this site are using it, along with Schroth methods of exercise.. My daughter is wearing it, and doing great... her curves started at 39'and 40' cuurrent IN BRACE xray show curves at 30'and 25'. we will have an out of brace xray in 3 months.