spinecor

[Celia]

Hi all,
The testing was actually neurological testing. It wasn't done by Dr. Deutchman. It was done by another Dr. whose specialty is neurology. It was very extensive. Nicole has some exercises that she does to address some of the results. She also does some balance exercises on a wobble board.

Melissa or anyone who is seeing dr. Deutchman and/or affiliates, can you elaborate on these neurological tests ? Does it involve an MRI ? The doctor's specialty is neurology, is he a neurosurgeon ?

[Sir Jeffrey]

Celia,

From what I'm hearing, the Spinecor doctor is doing a thorough exam of these kids to try and figure out if there is an underlying problem causing their Scoli. We've gone the "traditional" way of bracing with my daughter--Milwaukee and then a Boston brace--she's had numerous x-rays, MRI, CT scan, neurological exams by 5 different orthos doctor, extensive family history by the same doctors, plus an exam by a Neurologist. As soon as I mentioned her Scoli. to her eye doctor, she started asking a bunch of questions and her exam took a lot longer than usual and still does. Does that mean there is a connection between bad eye sight/Scoli? I don't know. Was my family doctor trying to get more money from me when Jamie was in a brace because he saw her every two to three months to monitor her lung and heart capacity while in the hard brace? No, I don't think so.

Just a quick question out of curiosity. How many of your Scoli. kids need to wear corrective lenses? Jamie does and has for several years and the changes in her eye sight started around the same time I suspect her Kyphoscoliosis started.

Mary Lou

[MATJESNIC]

No,
He is a chiro with specific training in neurology as it relates to scoliosis and other issues.
We are going to N.Y in April, how about if I ask for something written to explain the process. It will be easier that way than for me to try to explain it.
Melissa

[Celia]

Celia,

From what I'm hearing, the Spinecor doctor is doing a thorough exam of these kids to try and figure out if there is an underlying problem causing their Scoli.

Mary Lou,

There is no way he's doing a thorough exam. To me, it's like going to the doctor with symptoms of a cold and he then asks you to take off your shoes to look at your feet. Maybe there is a remote undiscovered connection between scoliosis and eyes and ears, however, who is HE to conduct these studies ? Is there a study ? I think not. Furthermore, people are generally not charged for taking part in studies. Dr. Deutchman is not following the Spinecor protocol ! Finally to answer your question, Deirdre's eye sight is superb !

BTW....when did you become Sir Jeffery ?

[Snoopy]

I never said for sure that there was a study going on. Maybe there is maybe there isn't. Is there a connection with Scoli. and bad eye sight; or with flat feet; CMT (yes); Neurofibramotiosis (sp?) yes; spinal tumors (yes); genetics (somewhat); but how are we to know if any of those things have caused the Scoli. or if they are may be a side effect of Scoli. or for that matter have nothing to do with Scoli. My daughter has been checked by many different types of doctors to see if there is any known cause for her Kyphoscoliosis and a lot of it was from me asking for the exams. If there is some unknown element that caused her Kyphoscoliosis, I want to know about it especially if I can do something about it!

Please refresh my memory, do you have a child in a Spinecor? Since I'm just learning about the Spinecor, would you please explain what part of the protocol Dr. Deutchman is not following.

Mary Lou

P.S. I've changed my name again!! Just want to keep you all on your toes, I guess.

[Celia]

Mary Lou,

Are you going through some kind of identity crisis ? The part that concerns me about Dr. Deutchman and his practice are these "neurological" tests. I don't believe they're elective and it effectively doubles the cost of the brace for anyone who sees him.

[LATigner]

Neurological testing

My daughter also had the neurological testing done. Dr. Ron Marinaro explained what it was for and we chose to do it - no pressure or other tactics to try and force us. The reason we elected to do the testing is that there is a theory that occular vestibular inbalance is associated with scoliosis. Dr. Ron said that all of the scoliosis patients he has tested have had positive results. He was also clear that it is unknown whether this causes scoloisis or is a result of scoli. But it makes sense to me that if a person's brain does not perceive the vertical plane correctly and thinks they are standing up straight when they are not - this is a deterimental thing.

Yes, the testing added $1200 to the cost but we were willing to try it based on our own research and conversations with Dr. Ron and others. Our daughter has some simple eye excercises to do. Our position is that we will try anything that makes sense and seems reasonable to us if doing it brings no harm. The medical establishment does not know what causes idiopathic scolosis and I personally have seen way more dedication to my daughter from her chirpropractors than the orthopedic specialist. He is stuck in wear a Boston Brace, that's the only thing to do and then have surgery if it doesn't work. Each parent has to make the best choice they can for their own child and new cures won't come from doing the same old thing.

I was surprised that Health Net actually paid over $3600 of our $5500 cost - so keep fighting your insurance battles, sometimes its worth it.

[Celia]

The reason we elected to do the testing is that there is a theory that occular vestibular inbalance is associated with scoliosis. Dr. Ron said that all of the scoliosis patients he has tested have had positive results.

How are these additional tests going to change the way your daughter is treated ? What is Dr. Marino/Deutchman going to do with the results of these tests ? Are they going to do brain surgery or something ?

[Snoopy]

Celia,

No identity crisis, just problems with the forum (no offense intended). Hopefully I can stay with the same name now without problems.

Do you have a child in a Spinecor brace?

Mary Lou

[Celia]

Mary Lou,

I'm sorry to hear you're having problems Yeah..... Deirdre is now in the Spinecor brace and her "in brace" curve is at "1" degree *yahoooooo* She is out of her casts and the whole ordeal is quickly becoming a distant memory. How are things with you ?

[MATJESNIC]

How are these additional tests going to change the way your daughter is treated ? What is Dr. Marino/Deutchman going to do with the results of these tests ? Are they going to do brain surgery or something ?

Nicole has specific exercises to do to strengthen her eye muscles. They involve eye tracking, etc.
Melissa

[Celia]

Melissa,

You still don't see how you've been duped ? I give up !

[Snoopy]

Celia,

Tell me about Deirde. Were you doing serial casting with her? Why was she switched to the Spinecor? Wow! 1* in brace----that's awesome! I'm always curious....my daughter and I run a Scoli. support group and I'm always trying to stay up on the latest treatment.

Things here are good. We're still dealing with an ankle injury for Jamie but everything else is good. Thanks for asking.

Mary Lou

[LindaRacine]

Melissa...

I have to agree with Celia on this. I can see how this testing might help the chiropractor (in that he can use it if he finds a publisher for his study), but how is it helping your child? I don't see how it's going to change anything about the way your child is treated. In traditional medical treatment trials, patients and insurance companies do not pay for things like medication or devices that haven't yet been proved. In fact, patients are often compensated for their participation.

--Linda

[LATigner]

Not part of a study

We are not part of a study that I know about. How it helps our daughter's treatment is that she is then given exercises to correct the inbalances. Scoliosis is not just about a curved spine but the reasons it ends up that way. There has been research into different areas - how the brain relays messages to the nerves, how the nerves communicate with the muscles, chemical inbalance, etc. Something causes the symtoms. In my daughter's case an EMG shows that the muscles in the curve areas are overactive on one side and underactive on the other - which is one reason the spine is being pulled into a curved position. This is not a simple disease and I think I have an obligation as a parent to do everything I can and to research everything I can.

Bottom line - you have to get to know the doctor and see if you trust them. Copes was just about the money and that became evident - not to say the brace wasn't good, but some of the other things he had in his treatment protocol were questionable. They might not have been harmful but definitely made him more money. But I don't think it's helpful to assume that every doctor wants to do unneeded things just to make more money. Frankly, I think the orthopedic surgeons have a huge stake in keeping surgery the treatment of choice and may not be all that motivated to be open-minded to non-surgical treatments. As to insurance companies paying for things, they always lag behind in recognizing new treatments/drugs and paying for them. I'm sure we can all remember when people had to fight to have bone marrow transplants covered and when much of the medical community did not consider them an appropriate choice.

As parents, I'm sure we all just want to the best for our children and it's great to have a place like this to support each other even if we don't agree with someone's choices.