Wednesday, November 14, 2012

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/

Tuesday, November 13, 2012

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!! 

Saturday, November 10, 2012

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?

Friday, November 9, 2012

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