Hello my name is Carolyn Bryan. I am posting this on behalf of myself, because no other person would be able to explain or fully capture this whole picture.
Procedure that is being done:
Very EDS experienced regenerist found at this point after all the work and nucca and PT I've done mild instability potentially at c0/1 but more so C2/C3 C3/C4 C4/C5 C5/C6
Prp ultrasound and xray to address functional spinal unit. He's injecting into epidural space borders along deeper ligaments in the disc. He's going to do prp directly into the facet joints and inner spine and super spinous ligaments. He's going to inject tight muscles in the back of the head targeted in the deeper structures. If I can swing it financially he's going to do stellate ganglion with 5% dextrose and very little lidocaine (different from traditional stellate ganglion to get more of the "off-label" effect in getting the autonomic dysfunction under control which is impacting the the ligaments strength and hold. He's said he's had great success with it just 2K a pop and the full function spinal unit is going to run close to 8 grand. All very worth to stop the AAI.
Whereas I've got several posterior before they were not targeted and this is where the needle has landed so its happening. I will make sure to keep you updated on the progress. I'll do anything to stop the AAI messing with vagus nerve and autonomic dysfunction. I'm almost 5 years into this I have a limit.
Fundamentally this is for a therapy not covered by insurance that has already delivered promising results and a relief of the symptoms and this regenerist is proven to have the specialized knowledge to finish getting stability of my complex body. I have instability of the majority of my cervical spine. I am not a good candidate for fusion due to underlying Ehlers Danlos Syndrome.
My son was only 6 when I went into a walker at 32. I have been fighting for my life back and be a functioning member of society again for 4.5 years and the complexity and expertise has had to escalate at this point.
I was diagnosed with Ehlers Danlos Type 3 in April of 2019 6 months after my final disabling round of cipro which I didnt have noticeable disabling symptoms of this disease until Id already had the drug cipro which was contra indicated for EDS yet I didn't qualifu for the EDS diagnosis and it's comorbidities until after the damage done by the cipro.
The most disabling feature was cipro attacking my weakened neck ligament sending me into a slow cascade and dysfunction and a perpetual inflammation autoimmune loop with autonomic dysfunction perpetuating degrading inflammation upon the collapse of neck structure called antloaxial instability.
In 2019, at the time of systemic collapse I was working for amazon as a senior Hr assistant and suddenly I found myself not being able to execute functions at my previous cognitive level and energy level declined. My blood pressure started to become out of control. This was the onset of autonomic dysfunction that had set in and was continuing to degrade may already struggling body. I walked into work one day, walked out and collapsed upon exit. My gait wasn't the same again, I went into a walker and was told by PT I should not be alone. Energy levels and sympathetic system are
My Journey:
"Natural solutions for my Autoimmune Life: Edsmgflox" is my page I have created to help others figure out how navigate the complex world of supplement research. [mg should be cci]. Mg is what a few neuros and then a neuro opthomologist were pointing to prior to making page.
The treatment that is being offered is unaffordable but necessary at this point. I need a very specialized person to do this. This one fits the bill he's very familiar with EDS, his care thus far is comprehensive and on point to my research and I've been following his people for years he's worked on. I've been searching for answers for 4.5 years and he has been on point with all of them . I do not take my care or my research lightly.
He's found what he's saying is minor instability (of course I've had 9 rounds of injections already to produce that stability albeit blind because supine mris were showing what needed to be shown and I had a ton of trouble finding a doctor willing to do an upright MRI.
As you can conjecture I've been in a very tight rope walk trying to find appropriate care. The disabling feature of my condition isn't pain, I fought with the Lord through the fislrst part of that, through 27 doctors, and out of pocket care from knowledgeable nutritionists, alternative therapy seekers such as func functional med doctors. I even see cbt specialists because the doctor that didn't know the importance of ordering upright imaging for a person with a connective tissue disorder such as me. This isn't even my first rodeo I lost my ear of making a living in my 20s from my shoulder joint stretching out and hanging dislocated 3/4 of the way for 15 months. This I now know is likely a deluxe combo of the antibiotics (fluoriquinlones) and my underlying connective tissue disorder. So you see, MRIs have failed me before. I had to pay out of pocket for this gentleman and since I first inquired with him his prices have gone up 300% because of his demand increase I'm guessing.
I can work through pain, I can work through sheer and utter exhaustion, but that's how I've come to be this point and the nervous system cant seem to adapt through the traumas and repeated instability causing the disabling feature of autonomic dysfunction and risk for cascades that get me deeper into physical disability.
I got prolotherapy about 2.5 years in after I found out it helped.
I've found stay ahead of the inflammation, stay ahead of the cascade of autonomic disruption through the vagus nerve as well as other nerves and autonomicfunction lie at the brainstem, I wouldnt continue to degrade.
The issue and neuro symptoms and decline are rooted in the instability of the neck resulting in a misaligned atlas will induce a sympathetic state which became chronic and lead to systemic inflammation due to all the "proper workings" of the cns performing sub par . Being in chronic sympathetic will also interrupt your sleep cycles and delay healing...
. Many different things fall into one big stress bucket until the body can no longer compensate. This is why the atlas issue is so tricky. It can be impacted by biologic stress, physical impact, mental stress, toxins (for me it was vipro but this can extend to lime, mold etc.... Stress, toxins and structure abnormalities are what cause one to lose the hold on proper atlas position and proper vns communication several other biologic processes...
As you can see I have been battling hard for answers for not just me but others in my situation. I have benefited from everything I've done and have dropped thousands upon thousands probably close to 30 K so far on multiple modalities to get me back to working order. I'm at the end, Ive had some significant breakthroughs. I just need to stabilize and stop the concussion syndrome so I can have a quality of.life with consistency again.
Whereas I can walk yes but the autonomic difficulties that I had to endure over the past 4.5 years are severely impairing because it effects the entire bodies ability to cobserve ebergy and go into a repair state. I degrade rapidly if left untreated.
The improper structure of my spine went unnoticed...the imaging I've needed because of the underlying eds is insane. But its a real thing, doctors did not know how to order so they say well we dont know what to tell you...
I finally got the imaging I needed last month by paying an expert out of pocket to order and analyze ...
This verifies cervical instablility of CO/C1 C2/C3 C4/C5 C/5 C6. The atuonoimic dysfunction is within thee nerves has been so disabling. Ive been doing CBT and neuro therapy for 2.5 years, done oils, exercise tolerance, deep breathing, parasympathetic tools, the autonomic dysfunction is perpetuating the weakness and turning on MCAS cycles. I have to end the cascade which is where this money is going to. And if your questioning why I have not gone through insurance, I have, Ive seen 6 neurologists. Not one knew how to order the upright imaging. Not one pointed me to answers just kept referring out I even attended UCI medical center which said go to cbt. The gaslighting, the fight of all of this has been disheartening to say the least.
Unfortunately the autonomic dysfuction and antloaxial instability with the nerves involved degrades me far and fast and the complications of EDS, CCI, and Flouriquinlone toxicity have limited my options. The regenerist I've found has worked with EDS and worked in the clinic I've been following for years. He found my issues, he knows EDS and he knows how to do targeting injections to provide the needed stability, he professes so many of the therapies I've already found to be helpful. Hes also gotten people functioning at normal capacity that struggled with similar difficulties as me. He knows his stuff but he's exorbitantly costly because of his expertise.
Adding my most recent post for context to my journey, why regenerative and not "standard insurance covered medical treatment" :
oct 8, 2019. I'll never forget that day i was disabled out of my dream job. This was from flouriquinlone antibiotics attacking my tendons and ligaments, attacking my mitochondria, landing me with autonomic dysfunction, cervical instability, POTS, concussion syndrome, MCAS, periodic paralysis symptoms, severe adhd, lack of bloodflow and oxygen around 90%. This was/is horrific.
It took 2.5 years and 2 heart doctors to get diagnosed with dysautonomia, doctors didnt believe me about the antibiotics doing this even though according to a cedar sanai neurologist it's "well documented" but there is "no cure or treatment." There are 5 blackbox warnings on this drug and people are being slowly disabled daily yet 2 million pills are still being prescribed a daily to your loved ones, to your pets even with the FDA posting warnings it's still prescribed and not believed about the consequences.
4 neurologists and 2 neurosurgeons could find "nothing wrong with me..." asked if I got the COVID shot because people were showing up with these symptoms. Apparently the present differently in everyone but since I had "abnormal neck anatomy " that was already weakened, that showed up normal on a "supine MRI..." I researched and begged for an upright sue to my hypermobility diagnosis that took me two years to get because it was so "rare" and I didn't fit the genetic componenet. Yet after many treatments and a descent amount of improvement but stagnation, I paid out of pocket for a highly sought after regenerist, one who's original studies Id been following for years...I had to pay out of pocket took 4.5 years to get my CCI diagnosis. I was gaslit my neurologists/ neurosurgeons for years.
I was told by my then HMO insurance since I'd lost my insurance 6 months into this, because I couldnt return to work, that I wasnt supposed to spend more than 10K on state insurance so my husband and I had to pay out of pocket for a PPO that ended up costing us thousands when he continued his job and we owed ultimately on taxes.
Since I've done 5 rounds of thoracic prolo injections, 5 rounds of posterior neck injections, another 5 rounds of prp including one full functional spinal unit in the neck. There's not treatment they tell me, there's not even a diagnosis code yet I was able to find treatment, just not covered by insurance.
My husband and I have spent thousands and thousands that has now pretty much sucked the life out of my marriage, I lost 50K in stock from amazon (that was my down payment on my house and everything Id worked for...)because I was unable to return to work. Missed out on 6 figure income in the 6 month window and have had to fight disability all the way to a judges hearing for a tiny stipend of pay. I still, today, cannot sit for more than an hour. I went to church twice today and ended up with a csf headache because my body stayed upright for too long...yet disability says since there has been "improvement" im no longer disabled even though I cannot yet work and is making wait another 8 months for a hearing...1.5 years after waiting 2.5 years for the judges hearing. My condition is worsened by stress.
People say sue big pharma, yeah well theres a statute of limitations on medical lawsuits and have to be proven, there is no test for fluoriquinlone damage and still no diagnosis code although its still being fought for because there are thousands upon thousands seeking help from this drug poisoning.
You see, the fluoriquinlones [cipro, levaquin flagyl and there are more...] are a failed cancer drug. Big pharma decided to make it an antibiotic because conveniently there is antibiotic resistance so they could make loads and loads of money and still do. The FDAs bolos arent getting back to doctors. What this means is you have to be sosososo careful. These antibiotics cannot tell the difference between bacteria mitochondria and your own cellular mitochondria. It also attacks tendons...guess how the blood flows back up to the heart, your tendons and muscles. And if you get extra fun like me, cervical instability, if c0 is is bothered then so is your autonomic function.
Even though the FDA put out a bolo in 2016 about these drugs (i had been taking them since I was 16 at high doses paired with steroids a big no no, and this was for frequent sinus infections etc) but even though it was put out to only take in "life threatening situstions" these ultimately annihilated my system in 2018 for a uti (3 ER visits, fainting, tremors, the whole gambit) still did not identify I had to read past the side effects and indications several pages down on the "severe side effects" day 14 into this mess when i stopped and thought it resolved, but it was a slow fade into destroying my career, independence just a mere 9 months later. The systemic issues paited with a high stress job made me very very sick, very fast.
I'm sharing this with you for several reasons.
Btw God was with me through this the whole time guided me on my decisions for wellness advocacy...
1) even they tell you no, it's not possible, it totally is with natural solutions. Natural Solutions for My Autoimmune Life edsmgflox
2) the medical system is messed up. So is the social security system. Be kind to the grumpy disabled.
3) fluoriquinlones should only be given in life threaten situations, please show your doctors this so they can gain awareness as well as you, protect your friends, families and pets
4) advocate for yourself, you're worth it
5) CCI is not as straightforward treatment as one would think. If you did not get in a major accident, youre hadly believed. It is scary doctoring world out there hence the out of pocket ♀️.
.
I know ligaments were weak from underlying eds from my dads side and underlying neck dysfunction from my mom, putting me into a systemic cascade when attacked...I've met at least 5 others with similar issues I've had the most success thus far and I'm sure I'm going to be an inspiration to others when this is done.
The suggestion by the regenerist is 7800 for dynamic PRP including intraspinous ligament and 2 to 3 stellate ganglion blocks modified with less lidocaine and more dextrose to reset the autonomic system at 2 K each. This is what I need to get the systemic inflammation down and stop cascades to start functioning like a normal human. It's going to get me back to work which Ive been working hard for years. This will be my 10th treatment but first targeted and based of this guys extensive expertise I should only need one to stop the instablity of the lower vertabrae causing weakness movement in the upper enough to inflame the brain stem and leave me with concusiion syndrome over and over and over again.
Stellate ganglion can regulate the autonomic system especially the version he has designed. For 2 years I was trapped in my body so heavily I couldn't even cry without losing the ability to walk. I got out of that with other prior regenerists but I need this specialist it has to be.
I thank you for reading if you got this far. God Bless you.
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