Amber's Road to Recovery from EDS

Hi everyone! I'm Amber.

I'm 31 years old and live with my Mom and little bat dog, Sammy. I've found myself in a very scary situation medically, due to a genetic connective tissue disorder I was born with, called Ehlers-Danlos Syndrome.

After three recent injuries to my neck, I developed debilitating symptoms that have left me mostly bedridden, including severe dizziness and difficulty using my arms and lower body to the point that I now require the use of a walker full-time. I'm afraid if my symptoms keep progressing at the rate they are, I soon will not be able to walk at all. I'm unable to push myself in a wheelchair, and we have no car or able-bodied family that can help—so I'm desperately trying to afford medical treatment before it gets to a point of no return, physically. That's why I'm here, asking for help.

Here is a concise explanation of what is currently happening to my body:

There are ligaments in your neck holding all the bones in place. During an injury like a car accident those ligaments can be stretched and damaged which allows the bones to move too much and can create herniated discs and compression of your nerves and spinal cord causing debilitating symptoms throughout your entire body. Generally, the connective tissue in humans is like a rubber band, however, people with EDS have connective tissue that is more like taffy. Once it is stretched out, it does not go back into position and that's what happened to me after my neck injuries. 

Currently, I am not a good candidate for surgical fusion, so the best treatment is a series of injections made of dextrose, blood, or stem cells that provoke an immune response to help tighten the ligaments and pull the bones back into place.

Here's a video by Dr. Hauser of Caring Medical explaining how it works. 

The problem is, these injections and the testing required are extremely expensive, and not covered by any insurance. I have an appointment with Dr. Hauser on March 25th, 2019 for a Digital Motion X-ray that will cost $1200 plus the $375 office visit fee. Then the treatments can run upwards of $2000-$4000+ per session and most people need at least 4-6 rounds to see results. With my Elhers-Danlos syndrome, it's likely I will have a more difficult time healing and will require more extended treatment.

Sadly, Regenerative Medicine treatments are the only option I currently have to improve my health. I've been unable to qualify for Medicaid, Disability, assistive devices, a wheelchair ramp for my home, or any other assistance through my community. My mother and I are on a fixed income through my Mom's disability that has left us with no way to pay for my medical treatment.

I'd greatly appreciate any assistance- whether that's making a donation or sharing my story.

For anyone who would like a detailed explanation of my conditions and treatment options I'll include that below. :

WHAT ARE THESE MYSTERIOUS MEDICAL MALADIES?

I have a genetic connective tissue disorder called Ehlers-Danlos Syndrome and multiple conditions that commonly occur with it including Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome (POTS)/ Dysautonomia.

Basically your body has connective tissue throughout, but because mine is faulty I have systemic issues and don't heal properly from injuries.

Which leads me to:

WHAT THE HECK HAPPENED??

1/2018- I developed serious restrictive and obstructive breathing issues as well as a C. diff infection that landed me in the hospital. It took months of medications before I was able to get a bit more stable, but my digestive system never recovered and I've struggled with keeping my weight up and battling food allergies and gastric issues since.

This is what happens when I so much as walk past something that triggers my Mast Cells to overreact and POTS to flare. My skin has a bad histamine reaction where I break out in a rash all over my body and my legs turn purple from the blood pooling there. If I don't find a way to sit down and rest it leads to me fainting. 

9/2018- I went the the emergency room due to an allergic reaction to an antibiotic. It's a long story, but a nurse cleaned my ears and I found out later she had done so improperly and ruptured my right eardrum, damaged my left, and caused me to have a serious neck sprain from holding my neck side to side over and over again for more than an hour. It was confirmed later to be medical malpractice after I saw an ENT who confirmed the nurse used the wrong procedure on me and should not have repeated it as many times as she did.

Immediately afterwards I had vertigo, felt disoriented, and started getting shooting nerve pains in my face. Within a week I developed permanent muscle contractions in my face, neck, and head, migraines, TMJ, hearing problems, ringing of the ears, and Dysarthria where my lips do not move correctly and it affects my speech. An MRI confirmed damage to my right cranial nerve.

11/2018- I went to a local free pain clinic to see if I could find anyone who could help me as the doctors I had seen tried telling me I just had anxiety and tension headaches. I saw a chiropractor and told him I did not want any high velocity manipulations and asked him to examine me and give his advice. While laying down on the table he told me I had bad TMJ and before I could protest he cracked my neck once in each direction.

I immediately knew something was wrong. I felt disoriented, dizzy, shooting pain through most of my body and my neck burned like I had whiplash. Within two weeks I had developed weakness in my arms, legs, and torso and tremors in my hands.

It was around this time I saw my currently doctor at our local spine center and he diagnosed me with Ehlers-Danlos Syndrome, POTS, MCAS, Barre-Lieou Syndrome and Cervical Instability. Basically the manipulations to my neck had caused my ligaments to become stretched and as a result my neck is unstable and likely compressing on my brainstem and nervous system causing many of these symptoms:

Tests confirmed I'd lost the curve to my cervical spine as well as developed issues near my C5-7 area of the neck.

I also have been developing worsening scoliosis in my thoracic and cervical spine due to the instability in my  neck

12/18- I followed up with my doctor who did a physical exam

on me. As part of the diagnostic criteria for cervical instability he performed a Cervical Traction on me which is when you pull the head up off the shoulders to try and decompress any nerves and see if there is relief. My Doctor did not know at the time that this procedure is not advised for patients with EDS as it causes our ligaments to stretch further and because we don't heal they don't bounce back.

Right away I developed severe vertigo, dizziness, disorientation, and neck pain. Within a few days I began having vestibular issues including trouble keeping my balance, nausea, my eyes began having issues working together and I had double vision when looking towards my left, my dysautonomia got much worse where I can only stand for a few minutes before my blood pools and I begin to feel faint, and I'm dizzy 24/7 as though I've been spun around in circles.

I followed up with my doctor 2/2019 to go over results of my Upright MRI: 

I was told I have 2 bulging discs and something called Retrolisthesis which means one of my vertebrae is sliding backwards over the other. Upon physical examination my Dr confirmed I'm experiencing abnormal neurological reflexes in both arms and legs and weakness in my arms and entire lower body.  

I'm currently down to 86lbs and am having trouble putting weight on between my food allergies, limited budget (we get $56 a month in food stamps), and inability to cook due to body weakness and dizziness.

I'm stuck in bed most of the time and when I'm up I require the use of a walker. I've been instructed to wear a hard cervical collar full time to protect my neck from further damage. Even with my walker I'm unable to walk long enough to go shopping at a store or do things like my laundry. Losing my independence in this way has been incredibly difficult especially with no able bodied family that can help me accomplish these things. 

WHAT'S NEXT?

I've been discussing treatment options with my doctors and we want to avoid surgical fusions as much as possible because they have a high risk of failure in patients with EDS, often require more surgery once the areas around the fusion begin to become unstable, and severely limit your ability to move your head. Plus there is no guarantee a fusion will alleviate my issues since I have extremely complex medical conditions.

THE ALTERNATIVE TREATMENT:

My Doctor and I discussed Regenerative medicine procedures like Prolotherapy PRP (Platelet rich Plasma), and Stem Cells that inject a solution into your damaged ligaments with the hope of tightening and healing them. If you have any kind of instability in your neck after an accident this can potentially treat some of the damage. It may not be a lifelong solution especially for someone like me with EDS as my body does not hold itself together as well, but if they do help even needing repeated treatments throughout my life would still be an amazing option since surgery is likely not possible for me. 

This is a video showing how effective these treatments can be in repairing cervical instability. 

 

THE COST:

This is where things get tricky. Right now I'm scheduled for a Digital Motion X-ray and consultation at Caring Medical on March 25th that will cost $1200 for the test and $375 for the office visit. There is a clinic in Colorado called Regenexx who is known for being the top of their field in Regenerative medicine procedures including Stem Cells and anterior injections for cases of severe instability. 

A phone consult with one of their doctors will cost $450. Their Stem Cell treatments for the Cervical Spine are roughly $7000 plus the cost of medications, any testing, lodging, and travelling costs from Florida. Most people need between 4-6 treatments to know whether these procedures have been effective. Sometime the doctors will choose to use different solutions like Dextrose or Platelet Rich Plasma which are less expensive, but often require more treatments. 

I will not know my exact treatment plan until I get the Digital Motion X-ray completed, a consultation with a doctor, and also depending on the state of my health and ability to travel for treatment. All money raised will without exception will be used towards my medical costs and I will of course update as I'm able to with what options I'm pursuing. 

HOW YOU CAN HELP:

I would greatly appreciate any assistance in affording the treatment I need to hopefully get my life back. I understand I will likely never be even as healthy as i was prior to my injuries, but any improvement whatsoever especially in my ability to walk and use my arms would be incredible.

There's no way I can make this happen without assistance whether that's making a donation or sharing my story so I can reach the most people possible. 

Thank you in advance for your help and here's to hoping things to get better! 

<3 Amber