I have been undiagnosed for a decade, was been dismissed by doctors as psychosomatic. After finally getting a diagnosis of myalgic encephalomyelitis, I did an extensive research and found that in my case the cause is very probably CCI/AAI. I got it confirmed few days ago by a neurosurgeon as well as the diagnoses of internal jugular vein compression and tethered cord syndrome. I am not nearly as severe as you were, but I still suffer a lot and hope it will come to an end with treatment soon. Thank you so much for sharing your story and raising awareness on this. Stories simmilar to yours helped me get my own diagnoses. I am sending you lots of love and support, you have been through A LOT. 🫂💜
I can’t thank you enough for taking the time to share a little about your story. Coping with complex chronic health is a brutal endurance marathon and a testament of how truly strong our minds are as we keep pushing through. It doesn’t have to be nearly as severe as my case became for anyone else’s experience to be life altering and debilitating. Your voice deserves to be heard and your psyche respected for all you’ve been coping with. It resonated deeply when you shared being treated as if your psyche was the root cause. This is such a painful experience and even more it leads medical persons away from trying to source our actual diagnosis and treatment. Over the years I became afraid to seek medical attention even during times that were unsafe to delay. I remember an incident where I had a sudden onset that caused me to loose part of my sight, balance and speech. It was a week into noteworthy and unsafe symptoms before my family begged me to get checked out. I see now how I was coping by using unsafe avoidance when I needed help. Honestly I was so afraid that if doctors didn’t find anything obvious they would misidentify my neurological symptoms as mental and add those notes to my file. I am on of the lucky ones to have made it this far and with a science based diagnosis and treatment. I’m grateful that you are on the road and getting answers too. Finding the roots and the right treatment plan is so valuable. I’m wishing you points of ease in navigating these next steps. 💛Rachel
CCI and thethered cord often go together, I don’t know more than that. In my case, it was a car accident, although doctors say I’m hypermobile which made things worse.
@@MissHaotic I’ve seen car accident a lot when it comes to CCI. However, would tethered cord have affected you had you not been in that car accident? Also, how were you able to get a diagnosis on tethered cord?
@@DynamicUnreal I’ve also heard the link between AAI/CCI and tethered cord. I’d be curious how C1-C2 instability could possibly relate to that too. I wonder if there is research. This is different but when I was doing research for my surgery there were studies on how AAI can be linked to things like chiari malformation, syringomyelia and I think they said stenosis. Previously surgeons always used to do decompression with the AAI stabilization surgery but one neurosurgeon started doing the AAI stabilization without decompression. He found that in 6 months to a year their scans showed notable improvement without doing decompression. The belief, if I remember correctly, was that the CFS drainage was impacted and additionally the body was responding to the mechanical compression in C1-C2 and the CFS was a sort of attempt to protect the nervous tissue. So the hypothesis is that instability was a root cause for those conditions and changes in nervous tissues. I don’t understand it all but it’s a pretty interesting. i don’t know if it relates but before surgery i had a an intense sensation of pressure in my spine that would build. It was debilitating and aggravated some of my other symptoms. Since surgery I still have to lie down a lot and have pain in my spine and some pressure but it’s significantly better than before.
It’s a huge medical blindspot. I was having heart palpitations, like 30 or so per day and decided to go to a cardiologist. They did all kinds of testing on my heart, the palpitations were unexplained. I told him that I believe it stems from CCI, a condition I haven’t been diagnosed with but all my symptoms fall into. He looked at me like I had just mentioned a science fiction illness.
I was having heart palpitations and irregularity for several years. For me, it was never totally consistent and I couldn’t figure out a pattern to why and when it was happening. It was only after I was diagnosed with AAI and CCI that I started to notice a clear link between stresses to my neck and those symptoms. The mechanics of my actual heart were ok but my brainstem wasn’t and this was why my heart was all over the place. Prior to this I kept trying to link exercise with my heart irregularity, but in the end it was things like sitting up too long, lifting, using my arms, or even physio treatments that triggered more symptoms. It also stands out to me that you have some strong clues and instincts about what is going on with you. It’s so jarring when we aren’t heard and brushed off. Our experiences could be valuable data in learning about this condition. Diagnosis can be a valuable starting point to making a treatment plan and figuring out what is and isn’t helpful for the specifics of our case.
Had I not received a diagnosis and gone ahead with major surgery, I do not know how much longer I could have gone on. It was by luck that I was recommended a doctor who had an in-depth understanding of how to assess and effectively image for AAI. Had I not met him when I did, I do not know if I would be here today or certainly not be having such a positive outcome. Every AAI case is different but it needs to start with a science based diagnosis. I was in the medical system with progressive and debilitating neurological symptoms for 14 years. I did not start getting answers until I had dynamic motion, x-ray (DMX) imaging and rotational CT imaging. See my description to learn more about my story.
Guaranteed the reason this condition falls through the cracks is because it's ignored on purpose because of the liabilities to the medical practice, at least what it comes to surgically treating this. Also, I've learned there is more profit to be had in superficially treating symptoms for some complex medical conditions rather than addressing and reversing the root cause. At least in America, out healthcare system is rotten with cowardice and greed.
I agree that there are many barriers for those facing complex chronic health issues. Our symptoms are often treated with medications, but especially with CCI, the root cause harming our neurological structures isn't addressed. This makes it even more crucial for our voices, experiences, successes, and challenges to be heard. It will take time but the physicians who have a compassionate curiosity about complex health will be a good way to start getting this on the medical radar.
I go for surgery c1 C2 Instablity dr atul goel my neurological symptoms I can't control i am in bed. Before i have cfs then aai, my age 31 is surgery is hope,r u back your life please tell how u doing.
Hi, thank you for your comment. I feel for you with all you’re going through. It’s such a difficult life coping with debilitating neurological symptoms and being stuck in bed. My surgery was 4 months ago and I am a lot healthier now than prior to surgery. I am still homebound and I have a lot of recovery ahead of me but this operation saved my life and I am continuing to see healing and improvements. I am very lucky that my neurosurgeon is so skilled at these c1-c2 operations and I haven’t had any complications from surgery. I had undiagnosed and worsening CCI and AAI for 14 years so it will take time for me to heal and hopefully gain much more function and life back.
@@partharoy6077Thank you Partha. Your compassion and care is so appreciated . I too pray that you can have healing and freedoms again in your health and life. I was injured and have had AAI and CCI since I was 26years old (undiagnosed). People like us just want the opportunity to be well enough to live and function. We all deserve this. 🙏🏼💛
Hey, thanks for reaching out. It’s really hard to recommend a surgery this major because it comes with a lot of serious and long term risks. Had I not been critically ill I don’t know if I would’ve been willing to take those risks and I likely would have continued to try non surgical options first. I spent most of 14 years trying to find function in my life while progressively loosing more neurological function. What I would say to others is that getting a diagnosis is incredibly important and finding experienced specialists to assess and make recommendations based on your specific case. If your symptoms can be managed non-surgically, I personally would want to check that out first. For people experiencing severe neurological symptoms and instability in c1-C2 that can be well linked to brainstem and spinal cord compression, surgery may be the only viable option. I was very lucky that my surgery went as well as it did and my dangerous symptoms are better post surgery. It’s still very challenging living in my body 12 weeks post surgery but I’m walking again (which is pretty miraculous) and hopeful that I will continue to see improvements, especially in my sight and sensory. My surgeon was exceptionally experienced and I believe that played a major roll in why I’m seeing the improvements I am. I had help with my original assessment and DMX imaging from Dr. Blaskovich and found him kind and knowledgeable navigating my options based on the specifics of my case.
@@unregistereduser5457 That’s great I’m glad you have that support with Dr Blaskovich. Yes, I have had some improvements with my vision. My vision is still one of my hardest symptoms though but I’m only 12 weeks into my healing so I could continue to improve in the future. I’ve had a lot of challenges with my vision for the last 14 years, but it was particularly acute in the 2 years before surgery. I currently still have a lot of static and shaking in my vision and any type of movement or tracking is still very challenging for me but has improved a little. I have to use a lot of assistive technology to do things like this but I can do a little bit more than I could prior to my operation. Additionally, before surgery, I constantly felt like my brain and eyes were starving. After surgery, I don’t have that starving sensation anymore. Before surgery, I was progressively having more times where I’d lose my vision for short times and I’d regularly get a flickering unclear signal of white between vision. I was also having a sort of lightning flashes, even when my eyes were closed which have also stopped. I suspect that with more healing, I’ll be able to revisit the visual rehab and likely make some of the gains that I couldn’t prior to surgery.
Hi, thanks very much for your question. Yes, I regularly felt like I couldn’t hold my head up. Additionally, even when I was in bed with my head supported, I felt like my neck wasn’t able to let go and rest into a pillow. My neck was constantly exhausted and couldn’t get a break, even though lying down was the better option for me. I felt this most notably at the back of my neck below the base of my skull. Like my muscles were stuck on but I felt like my neck was spasming trying to hold onto my head. I worked with Physio and Massage and found that treating my neck might give me relief, especially related to blood flow, for a few hours but shortly after I’d be flared up and having more neurological symptoms. I tried at points doing gentle strengthening exercises guided by physio but I found my symptoms became much worse as a result, lasting for minimum of days, but usually weeks or longer. Rachel
@@BradLessy It was only after seeing the DMX imaging and looking over my case that my surgeon wanted me to get the CT scans done. In my case the DMX was useful to start because it highlighted that I had multi directional (total) instability. My imaging also showed that I had the most slipping when actively in motion versus when my neck was just turned and held. Both were significant though. I believe the surgeon always requires CT scans before approval. The first CT scans I had done for surgery were in supine with my head turned left then right (not in motion but in held position). I travelled to Bellingham to get those scans done.
@@RachelsCCIpath how was that rotational ct? I had one done about a year ago, though both radiologists and surgeons don’t exactly have a good idea on what’s normal vs abnormal. Did you ever pass out when you turned your head? That can sometimes be a sign of how hunters syndrome with aai.
@@BradLessy The rotational CT was challenging for me and I had some symptom flaring like stuttering, confusion, body dropping and balance, vision whitening, and was dizzy and light headed. From the travel in the car I was also much more symptomatic after. Do you have someone looking at your imaging and case that has a good understanding of AAI?
