AWAKENINGS

Human Embryonic Stem Cell Therapy Restores Hope for Amanda

Friday, April 25, 2008–Unreliable and Somewhat Archaic Testing for SCI Patients

As a result of revealing my test results from Craig Hospital to Dr. Creasey, it has become clear that the current motor sensory tests are outdated, inconsistent, subjective, and due to their unreliability, not convincing.  Additionally, the tests do not record data such as deep sensation (only light touch and pin prick sensations are recorded); pain levels; spasticity changes; bodily changes such as increased muscle tone, and reduced or increased edema and swelling.  It was discovered that there was even a discrepancy with the Urodynamic Bladder Tests done over a seven-year period.

Dr. Creasey has been consulting with Dr. Daniel Lammertse, the current Medical Director for Craig Hospital.  I don’t feel as though I am betraying either Dr. Creasey or Dr. Lammertse by posting their comments below, which pertain to the questionable testing procedures.  I fully respect both Dr. Creasey and Dr. Lammertse, and am grateful for their professional advice and the time they have taken to reply intelligently and concisely to my questions.  Dr. Lammertse commented:

“The important “scientific” point here is that any clinical test has an element of precision which describes the likelihood that two separate examinations of the same quantity will yield identical results-in layman’s terms, how “reliable” is the measurement; is 1+ really different that 2- on two different tests, etc.. This applies to both the test-to-test precision (the same person doing the test two different times) and examiner-to-examiner precision (two different examiners doing the same test). In the case of motor/sensory testing in SCI, there are known problems with the precision of the measurements: motor testing can easily have a partial to full grade test-to-test or examiner-to-examiner variability, sensory testing has an even worse reliability record. In your case, the exams were performed by two different experienced examiners and 7 years had elapsed in the interim-a time period during which, the examination standards were significantly tightened (improved) at Craig in an effort to improve precision. The bottom line: the changes on these tests (2000 to 2007) are within the boundaries of the expected variation of the measurement-we can’t objectively say that you have changed. This is not to deny that you have changed (I sincerely hope that you have), merely to say that if you have changed, the magnitude of change is less than our threshold of objective detection…and our threshold of objective detection is admittedly a weak link here.”

With regards to my urological testing, the most recent report from 10/18/07 clearly states in the Assessment and Plan: 

The patient does show some spontaneous bladder function without the use of the bladder stimulator.  She can generate pressures using Valsalva maneuver to stimulate the bladder to contract that are as high as the pressures generated with the Vocare bladder stimulator.

Dr. Lammertse commented:

I do not at all question your (Amanda’s) report of significant return of bladder emptying capability. As a scientist, however, I must ask the next question: why? Is it because of neurological recovery of the pathways that normally participate in the control of detrusor contraction? Or is it because of a change in your ability to empty by use of a Valsalva maneuver? And…whatever the underlying physiology, what is the mechanism that best explains the change? I remain intensely curious!

 

I am happy for you (Amanda) and the changes you are experiencing, but at the same time must take a look at your experiences through the lens of the scientific “rules of evidence”, and act upon my responsibility to give patients my best advice about the benefit/risk tradeoffs of proposed treatments…for now, I will advise them as I advised you last year. The “rules of evidence” in the scientific world are the same for Geeta Shroff, Geron Corporation, Novartis Pharmaceuticals, Alseres Pharmaceuticals, Acorda Therapeutics, Graham Creasey, Dan Lammertse, etc. etc.

 

The primary focus of my scientific career has been to push Craig and the field forward with research on treatments for functional recovery, and we have come a long way over the past several decades. During that time I have seen many controversial and innovative treatment ideas come and go. And I have seen many Craig patients that have accessed controversial treatments, all of whom gave enthusiastic reports of change. Unfortunately, I have yet to find compelling evidence of benefit, other than patient self-report. I truly hope that Geeta Shroff is on to something important, but if she wants to convince the scientific world, she will have to produce some scientific evidence. In the meantime, I will withhold judgment for or against: to paraphrase Graham’s explanation, “the absence of proof is not the proof of absence”.

 

Dr. Creasey went on to comment: 

“This may sound confusing, and I think it illustrates how difficult it is to come up with measurements which are convincing to people who do not have direct experience such as sensation. Unless the measurements are very carefully and consistently done there are often many possible interpretations. Of course this is a very important stimulus to developing better measurements and performing them meticulously. I hope the discussion later this week (during the lecture at Stanford) will stimulate people here to look more intensely at these questions and devise better ways of collecting evidence.

I’ll make a few Powerpoint slides of some of the sensory and motor data and share them with you, and it may be useful to show them to the audience after you have spoken, Amanda, so that people have a clearer sense of what we are wrestling with. There are a great many people trying to push this field forward and it’s important to work together!”

After my presentation at Stanford, Dr. Creasey attended the Americans for Cures State of Stem Cell Advocacy Conference 2008 in San Francisco with me.  We met many key individuals in the stem cell world.  While I could only attend for a few hours, I was reconnected with Bernie Seigel, Founder and Exec. Director of Genetics Policy Institute.  In a complete 180 degree change of attitude toward me, Bernie Seigel invited me to speak at the World Stem Cell Summit 2008 on September 22nd in Madison Wisconsin. (http://www.worldstemcellsummit.com/).

I was honored and a little stunned by his invitation.  It is time that the players in the stem cell world awaken to the fact that individuals such as myself, whether we are desperate or not to find a cure, are traveling abroad for stem cell treatments, and, the collective “we” are showing improvements.

I asked Dr. Graham Creasey to share the platform with me at the World Stem Cell Summit.  I have agreed to continue with the motor sensory testing, regardless of the apparent inconsistencies and frustrations.  So, on April 22 and 23 I traveled back to Craig Hospital in Denver for two consecutive days of motor sensory tests, with the same physical therapist.  I came away frustrated and edging on the side of doubt.  My email addressed to the key doctors read:

“While I am prepared to continue getting tested to record my progress, I can’t help but express my frustration with the whole procedure.  In my opinion, it is archaic.  Again, the muscles I use in “combination” to crawl backwards obviously require gluteal muscles to fire–yet when tested in “isolation” as I tried to squeeze my gluteal muscles together recorded barely a trace (1?).  A level of subjectivity also factors into the equation.  Given the subjectivity of whether a 2- is different or not from a 1+, will the test infer that “objectively I still haven’t shown any improvement”?

 

While I could verbally tell my PT where the cotton swab was being placed on my foot, calf muscle, and above my knee on both legs through feelings of tingly sensations, the test doesn’t record such data.  This I have NEVER been able to sense.  I was restricted to expressing the “normal” light touch of a cotton swab.  My PT was intrigued by my ability to sense where the swab was touching my foot or leg, in addition to when she started and stopped touching the limb or foot respectively.  I asked her to make a notation of this observation in her written notes.  I feel that the drawn testing chart as it stands at present is also “subjective”.  My PT noticed that I had improved sensation, yet her drawings don’t indicate much change at all.  In fact, with absolutely no criticism to my PT but more for the testing itself, her drawings look somewhat rudimentary.  The solid black “Absent” line of sensation is clear, yet the “Impaired” grading with “rough” striped diagonal lines is completely subjective and not definite.  My PT neglected to record any “Hypersesitive” areas at all, which I still possess on the left hip and left buttocks.  This hypersensitivity triggered the intense nerve burning pain, which has almost dissipated completely in the past nine months. 

 

Can we ever find a way to measure pain in an SCI patient?  My nerve burning pain used to be an “8” on a scale of 1-10 most of the time.  It affected my sleep and daily life.  My pain is now a maximum of a “2” or “3” at the most, but generally it is not even noticeable.  In fact, I sometimes forget what it was like to feel the nerve burning pain because it is absent 80% of the time.  

 

Additionally, I have increased spasticity in both legs, which is a change since receiving stem cell treatment.  This is a noticeable observation that has not been recorded on a chart, nor noted in written documentation.  It seems that as my muscle tone increases, the more spastic I have become.  Can you assist me with an explanation for this?

 

Finally, there has been no documentation about the obvious bodily change in the shapely appearance of my lower limbs.  In the past nine months I have grown “curves” again, and I am regaining my womanly shape.  I have increased tone in my legs hence more curvaceous hips, and also a rounder buttocks.  My calf muscles don’t look as atrophied and are more shapely.  My swelling and edema that has been so prevalent in the history of my spinal cord injury for 15 1/2 years has decreased significantly since HESC treatment.  Isn’t this worth making these two observational notes to make the records as accurate as possible?”

 

Another noticeable change in my body, which I didn’t write in this email, is the effect of HESCs on my hormones, and specifically my prolactin levels.  It has been observed by Dr. Shroff that HESC treatment is more effective on her women patients.  A significant bodily change in since treatment ten months ago is that HESCs cause my prolactin levels to increase, and cause me to lactate with slight nipple secretions.  My female body is divinely recognizing “life” with the HESCs and causing me to lactate.  I am gathering test results to record the affect of HESCs on my prolactin levels over the course of my treatment.  If this could trigger scientists around the world to ponder this phenomena to better understand the implications of HESCs on hormones in a human patient, then the results could be life-impacting in so many ways.

 

My confidence in my increased bodily sensations and motor function since receiving HESC treatment with Dr. Geeta Shroff has not waned.  Through sharing my experience with the world, and by putting myself on the line to be a case study, I can be a catalyst to help instigate the changes that need to be addressed for more specific and reliable testing for Spinal Cord Injured patients.  I believe that Dr. Graham Creasey has the capability and the sincere interest to help initiate those changes in his position at Stanford University.

 

It is on to Delhi, India in six days time.  I shall keep everyone posted with blog updates.  Please send emails to aboxtel@comcast.net so I won’t get too lonely as I am thousands of miles away.  I love hearing from my friends.  You give me courage, wisdom, and the will to persevere, which serves to remind me how fortunate I am.  My faith, hope, and love will help me to move forward positively and confidently.  I accept my challenges as opportunities to grow and transform.  I am defying the odds and I continue to believe in the impossible. 

 

Namaste, love and thanks to all. 

 

Amanda xoxo (and woof from Tucker who is resting his head on my lap asking for dinner). 

 

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1 Comment»

  Jyoti Naik wrote @

Oh my god Amanda this is exactly what I go thru when I go into hospitals with this pin tests etc etc its so frustrating . I have been going for private physio where the main mentor was trained by Dikul from the Dikul centre in Russia. I dont know if u have heard about this man Dikul, but to cut the story short he was a acrobat in a circus and had a spinal injury.for 5/6yrs he created his own exercise regime and managed to walk again . One of the trained physio there came over to England and trained others here. Basically they believe one has to listen to their own body and work from there and for sure it helps. They stretch, massage, make u walk using knee brace , treadmill etc etc. I feel wonderful . ofcourse this dreaded root pain is there to stay but my body is very toned .
I pray Dr Shroff manages to further her research and proof it to the world . Wish her all the luck.

I hope u have arrived safely in Delhi and not feeling to hot .
Wish you all the best and take care
Jyoti


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