By: THOMAS E. MERCHANT, D.O., PH.D., HEATHER LEE, M.D., JUNHONG ZHU, M.S.,
XIAOPING XIONG, PH.D., GREGORY WHEELER, M.B.B.S., SEAN PHIPPS, PH.D.,
FREDERICK A. BOOP, M.D., AND ROBERT A. SANFORD, M.D.
Departments of Radiation Oncology and Biostatistics, St. Jude Children’s Research Hospital,
Memphis, Tennessee
Object. The goal of this study was to determine the influence of hydrocephalus on intelligence quotient (IQ) in children with infratentorial ependymoma before and after the administration of focal radiation.
Methods. Measurements of ventricular size, including Evans index (EI), cella media index (CMI), frontal horn diameter (FHD), and ventricular angle, were performed using magnetic resonance imaging at the time of diagnosis and again at 3, 6, 9, and 12 months after the initiation of radiation therapy. Of the 59 patients (median age at time of radiation treatment, 4.1 years), the clinical diagnosis established in 50 (85%) was hydrocephalus and 23 (39%) required placement of a cerebrospinal fluid (CSF) shunt. Extent of resection was gross or near total in 50 (85%). Before and after radiation treatment, IQ was measured using age-appropriate testing. The correlation between multiple ventricular measurements and IQ was investigated using standard regression techniques and a generalized linear model.
Patients with a higher EI (p = 0.04), CMI (p = 0.001), and FHD (p = 0.0002) at the time of diagnosis were more likely to have lower IQ scores before radiation treatment. Patients with higher CMI (p = 0.04) and FHD (p = 0.01) at the time of diagnosis were more likely to exhibit an increase in IQ score after radiotherapy. The rate of change in IQ after radiation treatment was positively correlated with the CMI intercept (p = 0.015) and negatively correlated with the rate
of FHD change (p = 0.006).
Conclusions. Changes in IQ score before and after radiation treatment are significantly influenced by the extent and treatment of hydrocephalus at the time of diagnosis. Hydrocephalus is an important factor to include when analyzing the effects of treatment. Patients who undergo a second surgery for ependymoma are more likely to require the placement of a CSF shunt (p = 0.0001).
KEY WORDS • ependymoma • hydrocephalus • cognition • radiation treatment • pediatric neurosurgery
5 comments:
After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. www.youtube.com/watch?v=jFQr2eqm3Cg.
Dr. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.
Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.
Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy.
“Unnecessary risks are being taken by patients seeking the liberation treatment.” says Dr. Avneesh Gupte of the CCSVI Clinic. “It has been our contention since we started doing minimally invasive venous angioplasties nearly 6 years ago that discharging patients who have had neck vein surgery on an outpatient basis is contra-indicated. We have been keeping patients hospitalized for a week to 10 days as a matter of safety and monitoring them for symptoms. Nobody who has the liberation therapy gets discharged earlier than that. During that time we do daily Doppler Ultrasounds, blood work and blood pressure monitoring among other testing. This has been the safe practice standard that we have adopted and this post-procedure monitoring over 10 days is the subject of our recent study as it relates to CCSVI for MS patients.”
Although the venous angioplasty therapy on neck veins has been done for MS patients at CCSVI Clinic only for the last 18 months it has been performed on narrow or occluded neck veins for other reasons for many years. “Where we encounter blocked neck veins resulting in a reflux of blood to the brain, we treat it as a disease,” says Gupte. “It’s not normal pathology and we have seen improved health outcomes for patients where we have relieved the condition with minimal occurrences of re-stenosis long-term. We believe that our record of safety and success is due to our post-procedure protocol because we have had to take patients back to the OR to re-treat them in that 10-day period. Otherwise some people could have run into trouble, no question.”
Calgary MS patient Maralyn Clarke died recently after being treated for CCSVI at Synergy Health Concepts of Newport Beach, California on an outpatient basis. Synergy Health Concepts discharges patients as a rule without in-clinic provisions for follow up and aftercare. Post-procedure, Mrs. Clarke was discharged, checked into a hotel, and suffered a massive bleed in the brain only hours after the procedure. Dr. Joseph Hewett of Synergy Health recently made a cross-Canada tour promoting his clinic for safe, effective treatment of CCSVI for MS patients at public forums in major Canadian cities including Calgary.
“That just couldn’t happen here, but the sooner we develop written standards and best practices for the liberation procedure and observe them in practice, the safer the MS community will be”, says Dr. Gupte. “The way it is now is just madness. Everyone seems to be taking shortcuts. We know that it is expensive to keep patients in a clinical setting over a single night much less 10 days, but it’s quite absurd to release them the same day they have the procedure. We have always believed it to be unsafe and now it has proven to be unsafe. The thing is, are Synergy Health Concepts and other clinics doing the Liberation Treatment going to be changing their aftercare methods even though they know it is unsafe to release a patient on the same day? The answer is no, even after Mrs. Clarke’s unfortunate and unnecessary death. Therefore, they are not focused on patient safety…it’s become about money only and lives are being put at risk as a result.”
Joanne Warkentin of Morden Manitoba, an MS patient who recently had both the liberation therapy and stem cell therapy at CCSVI Clinic agrees with Dr. Gupte. “Discharging patients on the same day as the procedure is ridiculous. I was in the hospital being monitored for 12 days before we flew back. People looking for a place to have the therapy must do their homework to find better options. We found CCSVI Clinic and there’s no place on earth that’s better to go for Liberation Therapy at the moment. I have given my complete medical file from CCSVI Clinic over to my Canadian physician for review.” For more information Log on to http://ccsviclinic.ca/?p=866 OR Call on: +1 (404) 461-9560.
My name is David Summers of Murfreesboro, TN and I have had MS for 16 years. I am 37 years old and as of January 2012, was effectively an 8.0 on the EDSS scale. Originally RRMS, my disease progression had become SPMS (very progressive) within 4 years of onset. Normally anyone in my position and with my bleak diagnosis is limited to a short future, absolutely no quality of life and a painful end...possibly prior to my 40th birthday if the current progression of the disease continued (without the slightest hesitation or glimmer of hope, my Neurologist just told me: “ Prepare to deteriorate”). But after I heard about Dr. Zamboni’s ‘liberation therapy hypothesis’ in 2010, I began my search for the vein-widening therapy. This put me into a clinic in Duluth, Georgia where they were doing the liberation procedure. I received immediate positive results post-procedure...along with the surgeon’s warning that 50% of the MS patients who undergo the liberation therapy suffer a re-narrowing of the jugular veins within a year or so. Sure enough, within 3 months I knew that I was going to be among the unlucky 50%; all of the original improvements disappeared as I relapsed.
I felt the only way forward was to get it done again, hopefully this time with more enduring results. But where would I go to get this done again and how would that be possible? If my neck veins restenosed after the first treatment, what was to prevent that from happening again...and again? I began to read the Internet blogs and forum chats placed on the many new CCSVI sites by MS patients about where to go and what their experiences were. In this respect, the Internet became a valuable educational tool for me. On several of the blogs, I discovered a New York clinic where they placed a stent during the procedure to keep the jugular veins open, and that positive results were being seen. Grimly, I also discovered that although rare, the prospect of death as a result of this procedure was also a risk. At least one person in a recent study had died when the stent migrated to his heart. But I was willing to put those thoughts and the risks aside. What did I really have to lose? I was dying a slow death. As long as someone was able to treat me there was a chance to hope, and I was down for it. But that wasn’t the main question I was asking myself.
As my disease rapidly progressed and my disabilities became more overwhelming, the question I was asking myself was, was it too late for me? Although I was happy with the fact that my original liberation therapy had diminished most of the symptoms above my waist, I had to ask myself if getting stents was merely settling for a compromised improvement. Having had some success, if I had this done again, I wanted more! Don’t get me wrong, I think the liberation therapy is a miracle discovery from God. As soon as I had my first procedure my cog fog lifted, the vision in my right eye improved greatly, the numbness in both hands dissipated by a few degrees, my ability to taste food returned, my energy levels were ’off the charts’, and my sleep was so sweet. Also, because MS had robbed my body of the ability to regulate body temperature by sweating, I had not been able to handle the hot, humid Southern summers where I live, except to blast cold AC non-stop as a survival method during those sickly ‘dog days’. After the procedure this changed too. I knew it when deodorant suddenly became necessity for my personal hygiene once again!
For more information please visit our site http://davidsmsstemcelljourney.blogspot.in/
But it ended by the 90-day point and I was right back where I started. Immediately following the procedure I had dreams of rising from the wheelchair I’d been confined to for ten years and walking like a real man; but even with the incredible improvements overall, it seemed that the only healing occurred above the waist. Perhaps I would just have to accept that even if I could improve to what the full extent of the liberation therapy would allow, I would always be in a wheelchair. While researching the New York clinic and other places, my parents and I came upon CCSVI Clinic through a Google search. We discovered that they are essentially a research clinic operating under an IRB but with a major difference. For the past year, having seen even better results than just doing the liberation therapy alone, they have also been transplanting adult autologous stem cells, cultured and re-injected into the body shortly after the neck venoplasty. If I chose to go there instead of New York, the procedure would be done at CCSVI Clinic at Noble Hospital in Pune India and I would have to get there essentially as a partially paralyzed patient transported in a wheelchair. There would also be a requirement to stay in the hospital for 10-12 days. But after researching the improvements demonstrated in MS patients in stem cell clinical trials, I simply decided that as long as they would take me, nothing was going to stop me from making that trip. On calls with the clinic, it was also explained that stents were not necessary as the stem cells injected intravenously could be enough to keep my veins from restenosing. My confidence in their method increased when I discovered that Dr. Gupte, the neurosurgeon, had been transplanting autologous stem cells for 4 years for a number of different neurodegenerative conditions, including MS and based his therapies on completed stem cell trial methods done in a number of hospitals and universities outside of the US (to be absolutely sure, I confirmed this through searches on Google Scholar). He had already done over 2000 successful transplants! Regarding my communications with CCSVI Clinic, I need to confess here that we did not tell the doctors the truth originally. My mother, who arranged the treatments, told them that I was an EDSS 6.5 in order to qualify. Basically she knew that they wouldn’t accept me into the program if she said I was higher. But if they saw my actual physical condition could they refuse me on the clinic steps? I hoped not.
So in late March it was off to India with my father who is a strong man, and my capable assistant. We arrived on March 26, 2012, and met Surjo Banerjee, CCSVI Clinic’s Managing Director at the airport. He drove us from the airport to Pune, a surprisingly modern city just south of Mumbai. I was amazed to see that the hospital and the CCSVI Clinic itself, (a full wing of suites within the hospital complex) was as clean and modern as any hospital here in the States. After checking in with a number of other patients, I was triaged for the procedures. However, based on my new assessment, it was determined that I would need about twice the amount of stem cells that they had originally programmed, figuring my EDSS scale requirement of 6.5. But paying more was out of the question. We are not rich and had basically ‘sold the farm’ to get here in the first place, and the recommended additional stem cells were going to cost another $12,000 that we had not planned for. Not their fault...I didn’t tell them the extent of my condition in the first place. So the first miracle happened when CCSVI Clinic management offered to personally cover these additional costs. I had never even met some of them, but as a result of their generosity, I received an additional 50,000,000 mesenchymal stem cells and I cannot thank them enough for the difference they have made to my life.For more information visit our site http://davidsmsstemcelljourney.blogspot.in/
On Tuesday March 27
, I once again had the liberation therapy followed by the harvesting of red bone marrow cells from my hip bone. The clinic has strict aftercare protocols around each type of procedure with regard to position control and movement. It didn’t much affect my activity because I was unable to move much anyway. I was supine positioned, tilted slightly head high for two days following my venoplasty and then laid out supine again, in just the opposite tilt...head-lower-than-the-body for several days following the transplants of the stem cells. I was told that this would allow the newly transplanted stem cells to filter through the full length of the nervous system and locate to the points of injury. A Doppler ultrasound of my neck veins was done every day for 10 days following my liberation procedure. This was to check for any clotting or re-narrowing of the veins which had been widened. If they clotted or restenosed at any time I was in the clinic, they would take me back into the cathlab for a re-do. Happily this wasn’t necessary.
Following the liberation therapy, the changes within my body were just as immediate and dramatic as in my first procedure in 2010, hopefully without the fear of re-stenosis; but my ‘headspace’ almost didn’t accept it. The first time with my liberation therapy in the US, the IR found one narrowing in each jugular, the right side being more severe. This time around, two blockages were found on my right side, and again one on the left. I have heard that second and third procedures for venous angioplasty are more difficult for the surgeons because there is more build up of scar tissue in the interior of the veins, but the medical team took their time and did a perfect job. Words cannot express the emotional joy in getting the blood flowing again and getting those symptomatic improvements back a second time!
For more information visit our site http://davidsmsstemcelljourney.blogspot.in/
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