An Adjustment

Dave Hill's Reply .....

Michelle and Robert,

I too have been wondering how Z is getting along.

Further to Dr Levy's comments  not everyone has a loss of hearing as their first symptom of SS.    Some people have quite weird first things, so you should be ready for anything on that 40 plus list.  Also bear in mind that 5% of SS'ers in past medical  research notes do not loose any hearing at all so being set on hearing alone can be a big fall-on.

In other words be ready for absolutely anything.

All the best to the whole family

Dave


In case you're wondering Dave Hill runs an online support group for those who suffer with Superficial Siderosis. He is in contact with people all over the world.
Superficial Siderosis | A site for survivors
superficialsiderosis.wordpress.com/

Dr. Levy's Reply .... My Thoughts, and Our Plan of Action

Hello Ms. Huguley,

I'm glad to hear your son's pain is finally controlled. That must be a relief to everyone involved. I will let Dr. Jordan answer your questions below as she knows your son, but I can add my expertise on one of the issues, which is disease progression. Many of my patients accumulate iron for decades before they have symptoms, other have symptoms within a few years. Some patients have iron in their brain discovered incidentally and they have no symptoms! There is no way to predict for your son. Generally, hearing loss is the first sign of superficial siderosis so that's one thing you should be looking out for.

Michael Levy, MD, PhD
Assistant Professor, Johns Hopkins University
Medical Director of General Neurology, Johns Hopkins Hospital
600 N. Wolfe Street
Pathology 509
Baltimore, MD 21287
443-287-4412 phone
443-287-4062 FAX

My thoughts ....
I think it's important for us to try the manual traction apparatus, I mean, what have we got to lose. There is no known cure for Superficial Siderosis and there is no one that we know of that is having the same kind of problems that Z is enduring. This is the only thing that's available to us that gives us hope for Z to regain his mobility. We just can't sit still and wait for this to progress, it wouldn't be right to just sit and watch Z curl up into a ball. He's growing and he's growing fast "his spinal column is increasing and his cord is not increasing at the same rate" the scar tissue and adhesions are now our enemy and we will do whatever we can to defeat them!

Plan of Action:
Visit Dr. Brown two to three times a week. Z will be adjusted twice and will do his warm ups twice while  in Dr. Browns office. He will eat healthy and take Max Recovery so that his body can heal fast from the adjustments. He will do his exercises and stretches twice daily. And be measured for Neural Tension once a month. Zachary will also have his hearing checked to be sure that he is hearing like he should and it will be checked often to watch for the progression of his disorder. Well, there you have it!! 

Dr. Jordans Response

Dear Mr. and Mrs. Huguley, I am not familiar with Dr. Brown's (your chiopractor's) device. I did google "manual traction apparatus." I see that it is primarily used to treat low back pain and probably works by decreasing pressure on lumbar disks in the spine (outside the spinal fluid, acting on vertebrae and disks between vertebrae). I see no reports of it being used to "break up scar tissue and release dural adhesions" so am just not sure how to advise. I will say that the reason that neurosurgeon's haven't wanted to try to surgically release dural adhesions and scar tissues is that they are afraid of scar tissue reforming and possibly of causing bleeding. That said, this sort of manual traction certainly seems more gentle than surgery and I appreciate your concerns for the future. I would think that if you did manual traction and Zachary had bleeding and inflammation, that his pain would worsen. So, if you decide to try it, I would watch for an increase in pain. I freely admit that Dr. Brown has different expertise than I do. He seems to have done a good job for Zachary where other therapies have failed. It's just tough for me to advise you well, with something so out of my area. Chiopractors are typically very good at improving mobility, and I agree with the thought that "tethering" of his spinal cord by adhesions could be the cause of immobility. I am glad that you contacted me. I have thought of Zachary a number of times recently and wondered how he was doing. Please keep me in the loop. Best wishes. Lori Jordan

I'm waiting on a reply from Dr. Levy as well, remember he is the one who runs the Superficial Siderosis Specialty Clinic at John's Hopkins?

Update on Zachary, Moving Forward and Questions for Dr. Jordan and Dr. Levy

Letter to Dr. Jordan:
Hello Dr. Jordan!
It has been a while since I've communicated with you, but I’d like to update you and I’d like to ask a few questions. Zachary hasn't seen pain since early July. We are very pleased with the work that Dr. Brown has done with Zachary. So far he has taken care of the pain that was caused by the whiplash that Z was suffering from.
Now, we are looking into Zachary’s mobility. The last time, probably around 9 months ago, Z’s neural tension was measured between 24 and 30 degrees. Yesterday, I took Z back over to be measured again, the measurements are between 10 and 20 degrees. I am a bit concerned but not surprised at the difference in the measurements as our goal for the past 9 months has been completely focused on Z’s pain. Now that we have the pain under control I’m wanting to work on regaining Zachary’s mobility. Problem here is that the boy keeps growing, lol. I’ve discussed the mobility issues with Dr. Brown and these are his recommendations and thoughts ....

“The MTA(Manual Traction Apparatus) will help to release dural adhesions and break up scar tissue around the cord. The primary reason for the immobility is the spinal cord adhesions. But the spine is "locking down" because of the immobility, its kinda a catch 22 because immobility causes more spasming and more scar tissue and more adhesions. Now I was thinking that the decreases in Z's range of motion may be due to him growing and that the length of the spinal column increases and the cord length will not increase at the same rate. That may be putting more tension on the cord and nerves”.

Now, of course we have questions:
A good amount of Z’s dura is attached to his cord, with the breaking up of scar tissue and the releasing of the dural adhesions, will this cause bleeding into the spinal fluid and if so how will this affect Z’s condition with SS? Will the side affects of SS (pain, loss of hearing, etc) present themselves sooner?

Are there things I need to be on the look out for?

Z will continue to grow and his mobility will decrease as each year passes, the prognosis is very grim if something isn’t done. I can only imagine our son being pulled into a ball with very little mobility. Our goal is to gain as much mobility as we can, while we can. I know that there is no cure for SS but the fight for our sons mobility is what is on the field right now. We won the fight over the pain now we’re in a new fight to win mobility.

We would appreciate any advice or thoughts that you might have, thank you in advance.

Robert & Michelle Huguley

Making Sure It's Understood

Dr. Brown diagnosed Z with Whiplash and this had been the root cause of Z's intense pain. Dr. Brown has relieved Zachary of all that pain. X-rays have not be done but I know that the adjustments to our sons neck have made a huge difference in his life. Dr. Brown has cured Zachary of all his pain and as far as I know of the whiplash that Z obtained due to the MVA he was in when he was 4.
As far as the Superficial Siderosis is concerned, that is not cured, as of today there is no known cure for this disorder.
Our next fight now is to regain the mobility that Zachary once had, that is our goal!

Published! In the Clarksville Family Magazine

$94,492.49 and For What?  

A 10 Year Old Boys Testimonial Highlights the Problem with America’s Healthcare Crisis

By Michelle Huguley

Zachary(Z), my son, was involved in a motor vehicle accident when he was 4 years old, he suffered a broken leg and a contusion to his forehead. We thought that our son was going to be just fine. Then, three years later he cried out in excruciating pain. This pain can only be described as the kind of pain where you wouldn't care if someone cut off the extremity that was causing the pain. 

We immediately rushed him to the hospital where x-rays were taken. We were sent home with the diagnosis of a possible bone infection, anti-inflammatory medications, pain relievers, the possibility of surgery, and an appointment with an orthopedist for an MRI.  

After numerous visits to multiple doctors, several more x-rays, a CAT scan, and more bills than we care to count. We were told that our son had hamstring contractures, so they sent him to physical therapy for stretching. After no real improvement in Z’s condition, the therapist felt there was more going on with Z. We were sent back to the orthopedist who did more x-rays and ordered another MRI. Hamstring contractures was ruled out!!

He was still taking a lot of anti-inflammatory medications, pain relievers, morphine at times, cream for his leg and a TENS unit when the pain got really bad, we’re talking 10/10 pain, screaming and crying in pain! Z even developed ulcers, surely from all the pain medications he was taking.

We visited a pediatric neurologist who ordered another MRI and a spinal tap because the MRI that was done previously couldn’t be read very well. The results gave us a diagnosis of Superficial Siderosis due to trauma. This was the first documented case of this condition in a child!

As far as Z’s prognosis? There is no known cure and he would ultimately have to suffer with the pain for the rest of his life. In adults this condition causes blindness, hearing loss, and puts most individuals in a wheelchair! 

Even with the growing doctors visits and medical bills, we kept searching.  We visited a neurosurgeon who did a spinal angiogram.  This led to nothing. A CT Myelogram was then done that showed in the lower portion of Z’s spinal cord there was no free flowing spinal fluid. Still the doctors said nothing could be done. Finally we visited one more orthopedist hoping that maybe he could help with Z’s pain. More x-rays were taken of Z’s spine and no answers were given.

Now, after all of these tests and all of the stress of trying to find the cause of Z’s condition we’d only walked away with the diagnosis of Superficial Siderosis and as far as the pain goes we could take him to a pain management clinic and let them teach him to breathe through the pain. Umm? Yea? No, don’t think so. We were desperate to find the root cause of our son’s condition and after all the medical tests; we were still at square one with nothing to help our son get better. 

Now as Z’s mom, I was taught, that when one door closes another one opens. 

On several occasions over a six-month period, some of the Sisters at our church, had mentioned Dr. Dale Brown(a Maximized Living Chiropractor). They told us that they believed we should go to see him and hear what he has to say. My first instinct was, "NO WAY”, to twist, turn and pull at Z would be painful and who knows what kind of damage it would inflict. But my concerned friends persisted. 

I had to find out what it was about this guy that so many from our church would be so highly recommending him. 

But I still had my doubts. So when in doubt get on your knees... and I did! And I asked Him about what to do next and let Him know that I felt like I had done everything that I could, that I didn't know where else to turn and if Dr. Brown was where we needed to be then I asked Him to please give me the courage to move my feet in that direction. God knows what we've been through and He knows what Zachary needs. 

Finally, after 3 years of no answers and no hope from the medical doctors, we took Z to see Dr. Brown. Dr. Brown first talked with us about the spine and the spinal cord and the importance of having a healthy well-adjusted spine “so that the body could heal itself, the way God intended.” WHAT! A doctor referred to God?!! He explained how the alignment of the spine dictates how all the fluids and nerve supply flow properly to their destinations with ease if the spine is in its proper alignment… Hey, this makes sense I thought! For the first time in what seemed like forever, hope began to creep back in!

Dr. Brown examined Z and pointed out some abnormal curvatures of Z’s back. Z’s back was shaped like a C and his head also tilted slightly to one side.  Why had the Orthopedist not noticed this? After he examined Z, he requested to do full spine x-rays so that he would have a better view of the upper part of Z’s spine, specifically his head and neck. Unlike all the other doctors, Dr. Brown never asked where Zachary’s pain was, though Dr. Brown had already read Z’s Blog. Instead, Dr. Brown explained that he would be looking for the cause of the misalignments in Z’s spine and that if he could fix that it would give Z’s body a greater potential to heal. This was completely new but it made the most sense. So we agreed.

When we came back to view Z’s x-rays, Dr. Brown took great detail in explaining how the spine protected the spinal cord and nerves and how the misalignments in Z’s spine would not be allowing Z’s body to heal and function properly.

Within just a few visits we started noticing a difference, and so did Z! Though the adjustments didn't heal Z immediately, we were heading in the right direction.  We brought Z to get adjusted nearly on a daily basis. At times when Z’s pain was so severe we would “campout” in his office for up to 3 hours, sometimes twice a day. Dr. Brown would adjust Z multiple time a day and it was amazing how the adjustments could almost completely stop Z’s pain! Hurray! Something is working!  

One time when Z’s pain was getting really bad I called Dr. Brown on his cell, he had given it to us in case of emergencies. I asked what we could do for Z. He offered to make a house call, I was shocked! Doctors don’t do that anymore! And we live 30 minutes away. This is how I knew we found the right doctor. He cares for his patients enough to go completely out his way to help them.  

Long story short, Z has almost completely recovered and there is no way to explain the joy I have as a mother to see my son be a “regular” boy again!