However, there is now a stem cell procedure offered by Dr. Todd Malan at The Center For Regenerative Cell Medicine in Scottsdale, AZ that has helped almost every Arachnoiditis patient get some, if not most, of their quality of life back. Arachnoiditis patients have had their pain greatly reduced and have gone from wheelchairs to being able to walk, exercise and even working again. Stacey has had a couple of phone consultations with Dr. Malan, and found out that he is an excellent candidate for the procedure.
Tracy and I have set up this fundraiser as a way for friends, family and anyone else that can donate to help reduce the burden for the cost of the Stem Cell Procedure. Friends, he so desperately needs this to have any chance of surviving this life-threatening, debilitating
disease! We are trying to raise enough for the procedure, length of stay there and all the travel expenses to and from Arizona. Even though Stacey didn’t want to, he had no other choice but to go on disability, because it is impossible to work with this disease. He barely gets enough to live on, and although he is thankful and blessed to have that, he has no way of paying for this procedure on his own. So any amount that you are able to donate will be a true blessing beyond words. Just know that no amount is too small and everything is appreciated! Also, please pray with us for Stacey. He has no quality of life right now and is having to spend 80% of his day in the bed. Together with the Lord's hand, this procedure is his only hope of getting his life back. Just months ago we lost our brother to cancer, and it breaks my heart to see another one suffering so hopelessly. Only give what you can and what the Lord lays on your heart, please share this with your friends and most of all, please pray for him because we don't want to lose Stacey!
Following is Stacey’s Story, information on Arachnoiditis, and all about the Stem Cell Process written by his best friend, Tracy McCready.
What is Arachnoiditis and What Causes It?
Stacey and I have been best friends for over 8 years and roommates for most of those, so I have seen first hand what this cruel disease has done to him. Arachnoiditis is a debilitating pain disease caused by the chronic inflammation of the nerve roots inside the spinal cord and the Arachnoid layer. The Arachnoid layer is one of three membranes (the middle) that surround the brain and spinal cord. This layer contains the cerebrospinal fluid (CSF) and nerves of the spinal cord. This is the fluid that protects the brain and spinal cord, supplies nutrients and removes waste products. The nerve roots start to clump together and start to adhere to each other and the membrane, which can alter and impede the CSF causing some symptoms. The most severe form of Arachnoiditis is stage 3 called Adhesive Arachnoiditis (AA), which is the stage Stacey is in. In AA scar tissue grows in the CSF, which then impinges on the nerves, even choking them out. It pushes nerve roots aside and can ultimately fill an entire area of the spinal canal. When calcification occurs in the scar tissue, then the AA patient becomes paralyzed while still feeling all of the excruciating pain and other symptoms.
AA causes a multitude of symptoms, which can affect any area or organ in the body. If the nerve root that supplies an organ is damaged, then that organ malfunctions. Of the many symptoms AA causes, the most debilitating is constant, crippling pain. Other sensory symptoms include numbness, severe “electric shock” like sensations and uncontrollable twitching of all limbs. Motor functions affected include weakness (including paralysis), muscle spasms, muscle cramps, joint and muscle pains and Fibromyalgia. Most AA sufferers will develop spasticity, often to the point of feeling like their joints are being pulled apart. Bladder and bowel disfunction also occurs. It also causes profuse sweating w/temperature control problems (hot and cold intolerance), daily headaches and migraines due to low cerebral spinal fluid, blurry vision, depression, difficulty thinking clearly, memory loss, tooth decay and the list goes on and on! It is said to be the most painful disease known, because the pain is cruel, unrelenting 24/7–365 days a year.
So how do you get such a merciless disease, or more importantly, how do you keep from getting it? That’s what the government and most medical professionals don’t want you to know, and why it is known as the deep, dark secret of the medical system. The majority of cases come from spinal surgeries and epidural injections, including anesthetic for child birth and epidural steroid injections. It can also be caused by lumbar punctures (spinal taps), or any invasive spinal procedure. A few cases come from illness such as meningitis. However, medical practitioners will not warn you of the risk of this disease. Why not? There are a few reasons but two main ones. First, is that they claim it’s extremely rare, but try telling that to its thousands of victims! In actuality, it’s not that the disease is rare, but in truth that no one in the medical field keeps records on this disease or statistics on patients. This fact is also explained by the second reason doctors won’t mention it. Unfortunately, we have a corrupt medical system. Most surgeons/drs and major pharmaceutical companies are more concerned about making money than the safety and well being of patients. If you look online at support groups, you will quickly see the lack of support that most of these patients receive, from evasiveness to outright lies about whether they have the condition. It seems to me that if the medical field cared even a little, they would keep up with these poor individuals suffering from this debilitating disease just like they do for cancer, ALS, AIDS/HIV patients and all other diseases. That way they would not only have real statistics, but they would also have protocols and treatments for this atrocious disease. Unfortunately, it's kept hidden since it's mainly caused by human error.
One thing Stacey really wants to do is bring awareness to this terrible disease and how easily any of us can get it with a spinal procedure. If it can save just one person from ending up with this horrific disease, then it's all worth it! It actually took us almost a year after his spinal fusion before we could even find out the truth of why he was having so much more pain in his lower back, lower limbs, and so many other symptoms that weren't there before his surgery. His Neurosurgeon kept lying to him saying everything looked good on his MRI, but when we got his records, the Neuroradiologist had already diagnosed Arachnoiditis on that same MRI. So instead of telling the truth his surgeon just called his condition, Failed Back Surgery Syndrome (FBSS), as we found out they do to almost every Arachnoiditis patient in the US that has had back surgery. This led to the disease progressing and getting worse day by day. We found out, by way of Arachnoiditis groups, that others have gone up to nine years and more before finding out the truth. We have had to do all the research ourselves for 3 ½ years, to not only find out what disease he had because of the lies, but also to study and research the best medications and treatment. His Family Practitioner, like most doctors, has no idea about the disease. Usually only Neuroradiologists, Neurosurgeons and some pain management doctors are familiar with it.
Stacey before Arachnoiditis
Stacey always loved life and lived it to the fullest daily! He had more energy than anyone I have ever seen, was always goofing off and he just loved to have fun, smile, laugh and to see others doing the same. He was constantly on the go; working, playing, volunteering, he just truly enjoyed life! He loved everything outdoors, sports, traveling and anything fun new and exciting. He grew up working on farms, doing construction and anything he could to make money. Once he finished college with a BA in Photography & Digital Imaging, he went on to work as a videographer for the news and sports, then a job shooting all types of still photography, then to Samaritan’s Purse shooting video with their media team. Stacey always had some type of camera in his hands. That is definitely his passion and he was made for it! He also loves helping people, and he volunteered at church for over 20 years before becoming disabled. He has a very big heart and he would do anything to help anyone. He loves seeing others happy, that is what makes him happy. He truly cares about others and loves that feeling you get when you have made a difference in another person’s life.
However in March of 2014, everything changed after his injection and spinal surgery. Sadly, he is now the complete opposite of his former self. He spends at least 80% of his time in bed, just lying there in pain unable to sleep for any relief of more than 2 hours at a time. He can rarely get out and the more movement he does, then the more he pays for it afterwards. About the only time he does get out is just to go to his doctor appointments. All of life’s laughter and fun for Stacey has all but faded away. He is not able to work, play, volunteer or do anything that requires standing or sitting for too long. Another AA sufferer described it as their “body has become a physical prison with a life sentence.” This disease and the isolation that has come from it causes him to fight depression daily. I have seen this disease progress at an alarming rate over the past 3½ years and it will continue to progress. Eventually, without the stem cell procedure, he would become paralyzed but still have to deal with the pain and other symptoms. And he'd be at high risk for dementia/alzeihmers. As if this disease isn’t horrible enough, the medication he has to take for it is also very dangerous and could kill him. It’s already damaging a few organs in his body and putting him at a high risk for cardiovascular problems which have been showing up on an EKG for over a year.
As a best friend, it’s been so heartbreaking for me to see him suffering, and to watch all of that energy and life slip away knowing there’s nothing I can do to ease his pain.
The Hope of Stem Cells
With no other way to help, I started searching the internet. I came across an article about Dr. Sara Davis who has had the same disease for many years and spent nearly 15 years in a wheelchair. She saw Dr. Todd Malan in Scottsdale, AZ in August of 2014 for high dose stem cell therapy. Not only did it take away almost all of her pain and help her walk again, but she’s now a practicing physician 4 days a week.
After that, there have been numerous other success stories with Arachnoiditis patients. We’ve spoken personally with a few of them that told us if it weren't for the Stem Cell Procedure they wouldn't be here today, because they would have commited suicide.
Unfortunately, this procedure is very expensive, around $20,000, and insurance does not pay for it. But how can you put a price on quality of life? Dr. Malan is one of the true pioneers of fat derived stem cells in the US and offers a high dose therapy. Instead of extracting 5-10 million cells, he extracts hundreds of millions of cells. He then transplants them back into your body intravenously and with a stem cell paste. He is the ONLY doctor FDA approved in the US to perform this type of stem cell procedure. He has studied and trained extensively in Europe where they are far more advanced in stem cell research than the US, and his work and research in stem cells is renowned. There are other clinics that offer stem cell therapy for a fraction of the cost, but they are not high dose stem cell treatments. You have to go back for more than one treatment, so the costs keeps rising.
Now, Stacey has something to hope for besides going home to the Lord. Stacey has the potential to get his life back! I pray that we can raise the funds necessary for Stacey to get this treatment. He would do anything for anyone, has such a big heart and genuinely cares about others. A huge reason why he agreed to this fundraising campaign was because it gave him the chance to bring awareness to his friends and others about the risks of getting this terrifying disease. He does not want to see anyone else suffer from it. So Please Share This!!
Altogether, any amount that you can afford is greatly appreciated, no matter how small. Stacey not only has the opportunity, but the plan to get his life back. So we are praying that each of you will consider taking a part in that chance to help change Stacey's life. Whether you are able to give or not we ask for your prayers. We know that God is in control! It has truly been a struggle for all of us thinking of asking anyone for donations. He even hated to tell others of his condition, but we just told him that sometimes everyone needs a helping hand, just as he has helped others. We want to thank all of you in advance for the prayers, donations and sharing. Please check out the information below to learn even more about Arachnoiditis and the hope of stem cells. May God bless each and every one of you!
IF YOU CAN ONLY SEND CHECK OR CASH...I HAVE A SECURE POST OFFICE BOX AVAILABLE:
PO Box 402 Meadowview, VA 24361 ...if you want to send cash without it going through the mail and sort of the post office & w/out others handling the envelope. Just take it by the Meadowview Post Office & put my address on it with a stamp & hand it to the official there & ask them to put it straight into this PO box OR if it's a some type of check, just mail to the above address.
More Information About Arachnoiditis & Websites
It was estimated that 15-20% of back surgeries result in Arachnoiditis. In 2011 alone, there were 2,296,331 total back procedures performed and out of those 1,448,400 were spinal surgeries. Also, epidural steroid injections are increasingly being used to treat back pain of all kinds, with nearly 9 million spinal injections annually in the U.S.
Article about Dr. Davis & the stem cell process:
Dr. Malan's Clinic:
Article describing Arachnoiditis & how you get it:
FDA Warns About Epidurals
- Julie Lapiska
- Pam Crane
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more