How I got diagnosed

My doctors were simply attributing my symptoms to my EDS and recommending physical therapy. In the summer of 2021, a physical therapist, told me she thought I had CCI. I had wondered about this, for many years, but had been dismissed in gaslighted by my Boston doctors as a whole… Even my neurologists. It was actually a PT that motivated me to seek opinions outside of major Boston hospitals. That is when I flew to MUSC, medical University of South Carolina, for an outside opinion. Unfortunately, MUSC dismissed me as a patient before I could get surgery… Simply because they found Medicaid in my Medical history. In 2022, they started a new hospital wide policy dismissing all patients with any Medicaid on their history.

I got diagnosed in 9/2021. My CCI was listed on both medical reports, upright MRI and motion x-ray. I was officially diagnosed by a neurologist at MUSC, Dr. Sunil Patel. 

How my CCI started

I was having chronic migraine, daily chronic pain, headaches, dizziness, nausea and vision problems. I believe things may have started after the Boston marathon bombing in 2013, which I survived with brain injury, neck injury, shoulder injuries and low back injury. I also had a disabling stage accident in 2006.

My symptoms

I still have chronic migraine, chronic pain, daily headaches, dizziness, nausea and vision problems.

Treatment for my CCI

My CCI diagnosis put me on my current path seeking treatment. I tried physical therapy first, but my PT felt forced to dismiss me, as my CCI symptoms were triggered by her exercises. I am unable to find a Neurosurgeon, in any major Boston hospital so far, who will accept either my upright MRI or DMX/Motion x-ray imaging or the! reports showing that I have CCI. I am in communication with two doctors in New York, Dr. Greenfield and Dr. Bolognese, hoping that they will assist me in what CCI treatments to try first. Personally, I always see surgery as a last resort.

So far I have tried so many treatments: physical therapy, acupuncture, yoga, meditation, massage, trigger point injections, prolotherapy, supplements, detoxification, medications. Unfortunately, none of these cured my CCI.

How I got diagnosed

As I just mentioned, I got diagnosed in November 2020.  All doctors I’d seen told me they couldn’t see anything wrong and my cervical spine and they said it wasn’t causing my symptoms. The ENT doctor diagnosed me with post-traumatic vertigo and the neurologist not only accepted this diagnosis, but also treated me for positional vertigo by performing a specific maneuver. After that I was doing so bad, I felt terrible! I thought my head would explode, I was nauseous and I could hardly stand… 

Eventually I got diagnosed with CCI and AAI by Dr. Marcus Grad, a neurosurgeon. I don’t have EDS.

How my CCI started

I was in a car accident on May 14, 2018. A woman drove into my right side at high speed when I was about to turn left. The impact left my car standing on its side. 

My symptoms

I get dizziness when laying on my back and on my left side. Muscle pain all over the place, headaches, feeling of not being able to hold my head, numbness in my right arm, numbness in my fingers when holding my mobile phone, numbness in my feet, back pain, mucus in my throat, difficulty swallowing, burning in the lungs with coughing and inflamed foot tendons. I also have CMD, difficulty finding words, memory problems, less concentration than before unless the topic interests me, allergies and intolerances as well.

Treatment for my CCI

Arlen’s Atlas Therapy made me much more stable than before and many symptoms only come back when I am off medicine. I got a jaw splint in order to improve my bite, which makes my atlas holding the adjustment better. The Janda short foot exercise helped me with my feet position which also helps holding my correction. I’m also using antihistamine for the mucus in my throat and cortisone spray for my lungs. Kuklinski’s NME’s also improved me a lot.

How I got diagnosed

Last year, 2021, I got diagnosed with Craniocervical and Atlantoaxial Instability, Intracranial Hypertension, Chiari Malformation, Tethered Cord and Cervicomedullary Syndrome by a neurosurgeon. I’m suffering from Ehlers Danlos Syndrome, which is causing these problems.

Obtaining a diagnose has not been easy. So far I have been seen by 9 neurosurgeons total both from my country and abroad (online). They have done thousands of tests, and I had to be a pioneer in carrying out special protocols to achieve these diagnoses in my country that are extremely unknown. I’ve been dealing with medical gaslighting for years because doctors said everything was just in my head. The horrible comments from doctors almost made me give up, but I didn’t allow it to happen. It all was happening parallel to the fact that I was (and am still) trying to survive with my condition, along with many other problems, being very sick and bedbound without getting treated.

It hurts a lot. The gaslighting is so much that it has caused me depression, anxiety and post-traumatic stress. I didn’t want to talk to anyone anymore and I didn’t want to go to another doctor, because I already knew what they were going to say. I even wanted to simply die because I believed there was no way out of all these problems.

I had to go to multiple doctors traveling all around my country, and after I ran out of options here, I asked for 2nd and 3rd opinions but there I didn’t get any answers either. I had to self advocate for getting several appointments with specialists from other countries where I got dynamic studies done. This finally gave me some very important answers and diagnosis. These doctors were really dedicated and took the time I needed because my case is pretty complicated. They recommended me to do fusion as I’m too unstable.

Now I can connect the dots, at least that one step has to be taken. My case is already very severe and there is too much damage, but the question is how to get the surgery as I don’t have the money to do it and I can’t work because of all these symptoms. I have already achieved a part of my diagnosis thanks to help, donations and campaigns, but above all, with a lot of dedication as I don’t want to give up.

It’s very unfair everything took so much time because of the lack of financial resources, lack of availability of imaging and CCI specialists. I wish it would be different, because raising funds in a situation like this is too difficult for me. Especially when I have no motivation or energy, or my hopes are extinguished every time I try and I simply do not succeed because it doesn’t depend on my will but on resources.

My case is very complex. All the systems in my body are compromised and my head literally hangs by a thread that can break at any moment, which is why I’m wearing my neck collar all the time. 

How my CCI started

My story with CCI has been a journey of setbacks and victories. It all started since I had full anesthetics with intubation.

I’ve been having symptoms since I was a child, but I didn’t realize it until now. Symptoms ranged from chronic headaches, heavy head, pressure at the base of the skull, persisting migraines, pressure, throbbing, numbness, dysautonomia, fatigue, dizziness, hypotension, tachycardia, fainting, intolerance to temperature changes. Symptoms get worse when standing or sitting, moving around, coughing or sneezing, crying or laughing. I’ve also always had muscular problems, tremors, loss of strength, cramps, tinnitus or “ringing in the ears”, problems with balance, walking, eating, moving in general, problems with organs, visual problems, urinary, gastrointestinal, respiratory problems, many other neurological symptoms such as seizures and sometimes paralysis. All symptoms gradually got worse over time. I’ve had other complications as well such as osteoporosis, low weight, nutritional deficiencies, MCAS and problems on a cardiovascular level from dysautonomia.

My symptoms

My symptoms are severe and life-threatening so I need to get treated. I have pain all the time, medication doesn’t help and it even weakens things instead. My instability affects my entire nervous system which creates a domino effect. I get paresthesias, weakness, hypotonia, arrhythmias leading to fibrillations, tachycardia and bradycardia, extreme hypo- and hypertension, heart and kidney failure, urinary problems, extreme fluid retention, ascites, anasarcas, fainting, seizures, hypoxia and respiratory arrest. Other symptoms are distortion of sensation and proprioception, dizziness, swallowing difficulties, hemiparesis, nystagmus, tremors, loss of strength throughout the body,  inability to walk, abnormal reflexes, denervation of organs and multisystem failure, ischemia, CVD, brain injuries due to faints and hypoxemia and the list goes on.

Treatment for my CCI

I’ve tried literally everything, medication, physical therapy and even experimental and alternative treatments and more but nothing has worked so far. I’m currently oxygen dependent and I need to wear a neck collar 24/7, which is the only thing that gives some relief.

How I got diagnosed

I got diagnosed 2 years ago. The options and knowledge about CCI in Sweden for proper imaging is very limited. They don’t take you serious at all, they said nothing was wrong with me, called me crazy and sent me back home.

I went to a neurosurgeon in Spain who is specialized in CCI. Dr. Oliver told me I have Atlantoaxial Instability and Atlantoaxial Subluxation, which is probably causing me symptoms. I went to dr. Rosa in the US, I got an upright MRI and he and his radiologist dr. Harshfield confirmed the diagnosis.

How my CCI started

My CCI started after a car accident. I was told I have a whiplash injury.

The search to a diagnosis wasn’t easy. Not any doctor believed in this condition and they called me crazy. Thank God I met Dr. Scott Rosa in the US. He’s an amazing and very knowledgeable doctor.

My symptoms

My symptoms are debilitating and disabling. Some examples of my symptoms are brain fog, heavy head feeling, dizziness, headache, throat and tongue spasms. 

Treatment for my CCI

There are not so many treatment options for CCI. I joined a very helpful online community with CCI patients, so that’s how I learned about Atlas Orthogonal. It’s a non invasive way to get your upper cervical spine properly aligned, without any chiropractic manipulation and hopefully ligaments can heal over time when being in alignment. I went to dr. Scott Rosa in the US and after he made an upright MRI he adjusted my neck. This helped my symptoms: my vision has improved, my head pressure and brain fog went down. I might still need regenerative medicine to strengthen and heal my ligaments that are injured, in order to get more improvement in other symptoms as well. At this point of time we are not sure about that yet, but time will tell. 

How I got diagnosed

I was given every migraine medication under the sun (none of them worked). I was gaslighted by my old neurologist. When I was waiting for my appointment with Dr. Francomano I told her they suspected I had EDS and she said, “I don’t think it’s that.” and then when I asked her to order an upright MRI. She said, “You’ve already had so many scans. I don’t think it’s necessary.” Dr Francomano ordered an upright MRI without me even having to ask, and obviously I do have EDS and CCI.

How my CCI started

I was out running errands and a headache came on. I thought maybe I hadn’t had enough water or food for the day so I just grabbed my water bottle and shrugged it off. But then the headaches started coming back every day. They’d just come and go at their leisure.

After about 2 weeks of this, my headache set in one day and never left. I tried for 9 days to get it under control at home but nothing would touch it. I finally went to the ER and the pain meds they gave me barely touched it so I was admitted overnight, which turned into a 16 day hospital stay where I had a litany of scans and tests and medication and they couldn’t figure anything out.

One day while I was in there, my PCP came in for rounds and he asked me if I’d ever heard of Ehlers-Danlos Syndrome. I hadn’t. But he’d been doing research on his own time because I’ve had a constant stream of issues over the years and no one has been able to figure out why. For instance- I had both my hips replaces in 2018. My hip joints were complete goners and they couldn’t say why it happened. My back issues started getting worse, and I ended up having a nerve ablation in my lower spine, which helped immensely.

So, that led to me getting a referral to see Dr. Francomano, which took nearly a year to get to my appointment with her. It was well worth the wait and my entire life makes more sense now.

My symptoms

My symptoms are, nausea, POTS (worsening), severe constipation, limb weakness (primarily in terms of walking or being on my feet for a while). The head and neck pain, nausea, and POTS are the most debilitating. Everything other than the head and neck pain and limb weakness I’ve been experiencing my entire life.

Treatment for my CCI

I’ve tried a litany of medications, shots, physical therapy, Aspen Vista collar, topical stuff. The neck brace is the thing that helps the most unfortunately.