FIRST EPILOGUE Oct. 25
This is a summary of some of our experiences in Shenzhen and my stem cell treatments. For a complete day-by-day experience see entire blog.
I have had Machado-Joseph diesase symptoms for about 16 years. My CAG repeat is 72, I have late-onset MJD. I was looking for a 5-10% improvement.
CARE, COST & CONVENIENCE
Even though conditions are spartan by American standards, risk of infection appears minimal, especially in comparison to Western hospitals, where risk of infection is high. Rooms are cleaned daily. Blood pressure taken twice daily, tempeature once. MRI, EKG, and two sonograms were also included in the price. The current cost is $17K for four injections and a month's care and rehab at the hospital, $20K for five injections. I recommend five injections.
The treatment evolves over time, so my treatment may not be the same as yours. The most consistent features are the injections, which are normally four, 10,000,000 umbilical (cord blood) stem cells each. Sounds like a lot, but in volume is probably a cubic mm or so, suspended in a 1 cc nutrient solution. However, these grow and multiply once in place, especially neurons, which are large. This growth can take up to three months, according to doctors, both here and abroad.
The injections are administered in two ways: Intrevenously or lumbar punch. With the blood-brain barrier, few of the stem cells reach the brain or cerebellum with the IV method, but are more effective for joint and musscle problems, eyesight, etc.; wherever blood flows. Since 90% of cord blood stem cells are hematopoeitic (pre-disposed to become blood, muscle or immune cells,) what you essentially get is high-tech blood doping. In fact I and others receiving IV injections got a perceptible "rush" that lasts for hours, making sleep improbable. IVs are given in your room, with a small IV of Nerve Growth Factor, to help coax the stem cells into neurons. A yellow fluid, NGF takes about 1/2 hour, and then you're free to move about.
Lumbar punches are more elaborate, and more effective for ataxians and brain or spinal-cord damage. The stem cells are injected into the spinal fluid. Your bed is wheeled into a clean room, where a Doctor does the lumbar punch. You curl up into a tight fetal position on your left side,the Dr. probes your #1 lumbar under a local anesthetic, finds the proper position, removes a volume of spinal fluid, and then injects an equal amount of stem cell suspension. You are also given the IV bag of NGF. You are then instructed to lie on your back for six hours, moving as little as possible to minimize spinal fluid leakage.
Any thrashing about or gross movements may cause leakage of some fliud, resulting in the dreaded spinal headache. The hard bed bothers some, but the boredom bothers all. A iPod or audio book help-s.You are instructed to fast for three hours prior, but will need to pee sometime. You want to avoid #2 for awhile. At the three or four hour mark, you can pee, (and snack) but resume the position afterwards.The spinal fluid cleanses and rejuvenates anew in three or four days.
I got three spinal and two IV injections. I could have arranged for all five to be spinals. The extra injections cost extra, but I recommend five or six. Many patients stay for 8 or more. You can also arrange sedation before the punch, which is easier on you and the Doctor, and makes it easier to lie still.
There is some question whether any immprovements from the procedure are the result of the stem cells, or the intense physical therapy. My answer is: Probably both; and the PT isn't that intense. The therapy is to enhance and train the new cells.
The physical therapy, or SPOT (for something (unknown) physical and occupational therapy) is individualized, but for me, consisted of morning and afternon sessions. Morning was "voice" which consists of an electrical impulse collar worn for 1/2 hour to improve swallowing & speech by passive stimulation of throat muscles. followed by 1/2 hr of acupuncture,and the 1/2 hr. of leg and arm massage. It was easy to nap through most of that. Afternoon sessions had me on the exercise bike for 15 min, walking and turning, and the rocker board for 5-10 minutes each. Not much, but I walked better every time I did it. Spinal cord & paralysis patients get maximum attention.
The acupuncture and massage have been added to the regime in the past few months. Other components may be added/subtracted in the future based upon success or failure with various ailments.
RESULTS AS OF 10/24
Dr. Susan Perlman at UCLA, an acknowedged expert neurologist specializing in MJD, examined me using a standardized MJD exam just before leaving for China and just after return, a month later. I scored higher on the return, despite severe fatigue and jet lag. Progress continues, and Dr. Perlman wants a re-exam at six months.
Would I go back? Yes. Probably in 12-18 months. There are lot of unmeasurasble intangibles: better energy, people say I talk stronger and seem more alive. I certianly have a renewed outlook and hopefulness.Most patients see some sort of improvement somewhere in 10 days or so from the first injection. For me working on emails one night, I realized I had full feeling in my feet, which had gradually gone numb 12 years ago. Unfortunatelythis disappeared afterward for the duration of my China stay, but have since sputtered back to life off and on for the last few days, more so on the left than right. This is accompaniewd by a cold feeling that can't be warmed when they go numb, again followed by a period of warm, nearly full feeling and no cold. I am hopeful this resolves soon, as it is driving me nuts. What I would dearly love is some relief from the similar neuropathy in my hands. Occasonally I fancy an improvement in my left hand (I'm left-handed), but I think it's just wishful thinking.
Walking and Balance? Lousy, but I'm still jet lagged, and have drug hangover from sleeping pills. Ask again in a week or so.