Craniocervical Instability - My journey to get diagnosed
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- Опубликовано: 5 окт 2024
- In this video i talk about my long journey to get diagnosed with CCI. Thank God for caring medical and for prolotherapy ! below i have links to the products that have really helped me dealing with CCi
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Yep a neurologist told me that the involuntary muscle twitches that occurred throughout my entire body multiple times per second when i lied down at night were just in my head.
I really appreciate and admire your strenght. It is indeed frustrating to go from one specialist to another without an answer or a proper diagnose, dismissing our symptoms as mere stress or psychiatric disorders. It scares me to think in how many people out there are in sertraline or psycho pharma without needing them.
You’re absolutely right man, it is a bit sad that none of these so called experts or doctors don’t even consider structural damage and then the relevant treatment for that, which actually works because it’s addressing the root cause! Yep, we are the experts in these conditions no doubt because we’ve lived thru it for what seems like forever. Hope you make a full recovery soon and thanks for spreading the awareness on these types of conditions and sharing your story. I know exactly what it’s like.
I realized right away that there wasn’t a lot of content out there regarding CCI and the common causes. I just want others to find something that actually gets to the root cause rather than just putting a bandaid on the problem. Thanks so much for watching
I home they develop medicine soon that can help with the weakened or stretched ligaments
@@andytorres8507 yes, and diagnosing the ‘issue’ correctly and efficiently and affordable is just as important. Most of the standard scans such as MRI or cat scans aren’t enough and don’t show enough. A digital motion Xray or similar is needed and should be much more accessible for everyone!!! Also, the correct analysis and people skilled with enough experience to be able to properly interpret and read the scans/X-rays to be able to correctly give a diagnosis. Technology can and will be able to help with this.
@@andytorres8507 yes, and diagnosing the ‘issue’ correctly and efficiently and affordable is just as important. Most of the standard scans such as MRI or cat scans aren’t enough and don’t show enough. A digital motion Xray or similar is needed and should be much more accessible for everyone!!! Also, the correct analysis and people skilled with enough experience to be able to properly interpret and read the scans/X-rays to be able to correctly give a diagnosis. Technology can and will be able to help with this.
yes, and diagnosing the ‘issue’ correctly and efficiently and is just as important. Most of the standard scans such as MRI or cat scans aren’t enough and don’t show enough. A digital motion Xray or similar is needed and should be much more accessible for everyone!!! Also, the correct analysis and people skilled with enough experience to be able to properly interpret and read the scans/X-rays to be able to correctly give a diagnosis. Technology can and will be able to help with this.
I am going through the same thing, I have been to orthopedic doctors neurologist, neurosurgeon, ENT been doing PT for years oh also chiropractor. I even tell them my head doesn't feel stable they look at me like a deer in the head light and say there is nothing they can do. It is so heartbreaking. The pain is awful, the ringing in ears the eye problems, couldn't walk a straight line if my life depended on it. I am still searching glad you found your relief.
I have a number of family who have had medical issues doctors seems to give no care to actually investigate how to solve. Glad you are making progress!
6 months? Try 16 Years....
I’ve dealt with this for over a year. I’m only 23 and I don’t know what to do anymore. It feels hopeless to find a solution. Thanks for sharing your advice and story.
We do not need an x-ray to assess this…palpation with hands and ortho testing should be enough, and especially when combined with facial, tongue and postural assessment.
Thanks for sharing and I know exactly what you are going thru. Over the past 15months, I've seen over 20 specialists with no clue. I have very similar symptoms as you, and I've had 4 neurosurgeons, 2 orthopedic surgeons, and 2 neurologists all tell me that there is nothing that would cause all these symptoms in the neck. They simply don't recognize that CCI is even a thing. I recently got a DMX revealing a very lax transverse ligament and hyper mobility at C2. I have a difficult time holding my head up and can no longer work or do much of anything. It's rough.
I’m so sorry to hear that. Are you going to try and get prolo ?
@@theprolopatient They want me to go straight to PRP and/or PICL. I'm really not sure if PRP has any added benefits over Prolo, and it's a lot more $
@@mountaindweller9118You should look into ProloZone Therapy. It’s cheaper, safer, and maby even more effective, also less painful with smaller needles. But any of these Therapy’s are really worth it because its giving the body what it needs to help repair the ligaments. ‘Beefing up the ligaments’ is what’s needed.
Hypermobile spine here…life is brutal.
Ridiculous how similar our stories are. Useless emergency room visits, framed as a mental patient, even the benign hemangioma!
Sadly, I've had an MRI 5 years ago after severe vertigo and fluctuating blood pressure. I have scoliosis and cervical arthritis. Running from one specialist to another. No one helped. I just manage the pain with natural remedies. Now my eye pressure has gone up a couple of months ago and I found Dr. Hauser's videos by chance. I went to a neurologist yesterday and supposedly having a new MRI tomorrow. Gave him an idea of this but he doesn't seem convinced. We're awaiting MRI. I feel lost.
Thank you for sharing your journey w/ us. This could be life saving for so many!
May God bless you & keep you well! 🙏❤️
Thank you for watching!
Thank you for sharing your experience; I was diagnosed with POTS Syndrome but also have headaches that are always in my neck and believe CCI may be what is the root cause of my headaches and POTS symptoms. Also, the quote at the end gave me chills, so true ✨️ the jouney to just getting a doctor who listens and truly cares and can help, can be exhausting in and out itself
This is what is happening to my youngest child (she just turned 21). She figured out what was happening because of the grinding sound in her neck.
Thank you for summarizing my life for the past 2+ years
Glad you're doing well!
Josh, wow, thank you for sharing… It hits close to home more than you know… You are extraordinary keep spreading the word and sharing your story! Thank you!
I appreciate you sharing your experience and helping the rest of us. Thank you.
It’s crazy how they didn’t see ligament damage in your neck . These doctors are ridiculous
Hi, I’ve been on a journey for a diagnosis for only a short while after discovering that CCI is what I most likely have. (Birth injury! I’m 35 now) Thankfully I have a primary care doctor and my current PT who believe me (the PT can see and feel my instability) I’m struggling to locate imaging near me in MA. Just wanted to say hi and thank you for making these videos and sharing your story. You’re helping lots of us! ❤
Wow a birth injury I’d be interested to know more about that please reach out to me on instagram!
Same story here, doctors didn't really try and certainly had no empathy for what I was going through. Prolo therapy was brought up, but never recommended. Don't know why and wouldn't know where to go for it.
Thank you for this video it's nice and somewhat comforting to know that we are not alone on this crazy journey of trying to get an accurate diagnosis by medical Drs and how the system has failed us. So happy that now I am also a patient of Caring Medical about to get my 5th treatment dextrose prolo c0 thru c4 only bc when I got my retesting last time my c5 thru c7 instability was resolved 🎉 so I know it's working and tightening my ligaments up but still have a while to go for hopefully complete resolution of my symptoms bc my worst instability was also c1 and c2 causing me, weakness, muscle tension, tremors, twitching, tachycardia, shortness of bresth, etc. I'd say I'm about 20 or 30% improved since I started treatment. You're so lucky you are already in Florida I have to come from around Pittsburgh
I am so glad that you found help caring medical also what an amazing place! How are your symptoms now? Do you still have shortness of breath?
@@theprolopatient I do sometimes still get tachycardia and shortness of breath but it's weird bc it's kinda random now whereas before there were def things that I tried to avoid that would trigger my symptoms and now I am able to do more of those things without getting the symptoms. I painted Dr Hauser a shirt and he framed it and hung it on the wall (you'll have to look for it when you're there next 😅) and I do not believe I could've painted at all before the prolotherapy bc anything I did/do with my arms and hands would trigger my symptoms very badly. Sometimes I couldn't even drive bc I was like too weak to use the steering wheel!? Today I cried bc I did a small dance with my arms and hand motions for the 1st time in 17 months with no immediate symptoms except a lil head tremor 🎉🎉🙏🙏🙏 so I'm trying to stay positive bc I know I'm getting better it's just kinda a rough journey unfortunately but it makes it worth it when you see your improvement! I'll def check out your other videos are you gonna make one documenting your progress? I plan on doing that
Not to comment on op’s dx, but not every confusing neck or hypermobility symptom is gonna be cci. Sometimes different symptom clusters point to something else, even if it still involves co-c2, and dexa isn’t always the best way to see this. Sometimes a good quality mri or xray is best. Hauser at caring medical might dx cci, but what are his differentials? Does he do differentials? I would also caution against dr hauser in specific due to his strange track record which you can find online, and that prolotherapy might not be indicated in some hypermobility
Wish you all the best on this healing journey!
how are you now?
This is happening to me right now. Jan 2022, got super sick. Many symptoms. Emergency room visit, after emergency room. Visit. 30k in medical bills and they found nothing. I left the state and started visiting mayo clinic. Mayo clinic found a pituitary adenoma. I traveled to California and Dr. Kelly performed brain surgery, removed it. Finally came home and realized my symptoms were not gone. Today I'm somehow still living, I don't know how, but still fighting for answers. I believe CCI and in less the 12 hours I travel to Arizona again, to see a top nerologist and be treated for this. I will be there for 4 days and hope I finally leave with answers. So frustrating what some people have to deal with, I think many people think I'm a liar. Tomorrow I hope is a new start.
Who are seeing in Arizona?
Dr. Saperstein. I actually am not seeing him no more. I was diagnosed with lyme recently and doctors believe that's what caused my symptoms. Now on heavy antibiotics.
Can you please make a video soon about how long did it take you after getting diagnosed to get rid of the symptoms specially brain fog and lack of concentration and memory issues and the vision problems ? Thanks
Gonna have to watch more of your videos. I just got an xray today to see the spacing in my vertebrae. My doctor had me lean over and she pushed into my neck which caused my body to shiver/rumble.
Tomorrow I should get the results from that but so far from your video i can relate so much to the list of symptoms accompanying my hEDS. Thanks for sharing your story
Can you please make a video where you explain how prolotherapy changed your symptoms? For each symptom, can you rate how bad it was before the treatment on a scale of 1 to 10, and how much it has improved or worsened after the treatment?
I have been suffering for 2 years, and nothing else explains all my symptoms except CCI. No doctors have been able to help me and I want to know if prolotherapy is worth the expense. Thank you.
4 months later update. I’ve deteriorated rapidly within the last month. So much so that I am now starting to doubt if I have CCI and I am starting to suspect a much more deadly disease like MSA. The fatigue in the last 10 days has been otherworldly, and it has me severely worried about my future. My neck still cracks and grinds (now more than ever) when I look in any direction, and my head feels more pressurized and headaches than ever.
My economic condition has held me to see doctors and specialists only through Medicaid. But I think it’s time I took an economic risk and visited one of the few places that diagnose CCI to see if I truly do have this condition. Otherwise it’s not looking good for me.
Same boat!
i have all the symptoms on cervical instability and have gone from doctor to doctor and im having a MRI this weekend and know before i go that i will get nowhere with it , im also referred to neuro opthalmologist so im waiting for that and again will likely get no positive diagnosis . i live in the uk and cannot afford to go to usa to be seen by caring medical so what chance have i got of ever getting back to normal ? its saddening that our medical professionals seem to know nothing about this .
what caused yours? mine was caused by my truck being totaled in Feb 08
I am going through this right now. I am constantly being dismissed and being referred to therapists or whatever. Its so depressing because I am 17 and I feel like my life is going downhill. I dont know what else to do
I am from India same symptom 2month ,here haven't Dmx and only one prolotherapy centre,how we recover lost hope, my age 31
I got my second round of polo and i’m 1 month in i feel dizzy again it there a time you start to feel dizzy for a week
I wonder how much the testing is at Caring Medical.
I went to Caring Medical in 2022. The testing was around 3,000.00 then if you need and want the neck injections they were 1,400.00 EACH with most people needing at least 6 treatments. Also, these treatments cannot be done all in one week. You need to visit the clinic every month or so until you're feeling better. Caring Medical is a top notch facility but overall pretty expensive for an average individual as nothing is covered by insurance. My testing showed I had problems but I couldn't afford the treatments and continue to suffer. Good luck to you.
@@EdmundD1962: Sorry to know that. Did you have any injury? I had a whiplash injury from a car accident about 2 years ago and since then I have had a variety of mysterious symptoms..
@@sumr1000 No, I didn't have an injury. It is believed my neck problems were developed over time by working at a factory where I was constantly looking down. It's commonly referred to as "forward head posture" or "text neck" as it is from everyone looking down at their phones, tablets and computers.
@@EdmundD1962 : sorry to know that..did you try upper cervical chiropractic NUCAA
Very helpfull video. Gives me hope. Do you have any after-effects of the disease?
I am still on my healing journey
Wow I been with this for 3 years ! And I get no results 3 MR 2 ultraljud and nothing . Is bad I get bad
Hi there, I have a question, in your last video's you said that you had extreme sound sensitivity and you couldn't tolerate any loud noises, so I wanted to know how were you able to do MRI scan because those machines are so so loud.
I have been dealing with alot daily chronic symptoms of CCI since 5 year's after getting a head injury, been to many doctors and even did CT scan for brain and neck but now the Neurologist wants MRI don and I'm so scared because I have debilitating severe SOUND SENSITIVITY and I won't be able to do it even with sedation 😢
Plz give some info on how to get MRI done with Hyperacusis
So sorry to hear you are suffering, I pray you find some relief soon. As far as the MRI and other scans, I just used really good earplugs, not gonna lie some of them were really miserable. My advice how ever is get a DMX first. That’s the best way to see instability in the neck. I had a dozen MRIs and other scans that showed “normal” results. Nothing to indicate my symptoms, however when I got a DMX it told the whole story and showed extreme movement within my whole spine. Sending prayers, thanks for watching!
@@theprolopatient thank you so much, really appreciate your reply.
Unfortunately I'm in Kenya and I can't find anywhere to get DMX. they don't have the machine's, The only option is to get an MRI, without it the doctor's don't want to start the PRP injections
Is ent through all this but was tricked by the ent and they did a sinus surgery and gave me empty nose syndrome which is suffocation
Do you have any experience of NUCCA? Please share. Thank you.
Prolotherapy or prp? People suggest prp is better. Any thoughts?
Prp is stronger but in some cases dextrose alone will stimulate enough healing where PRP is not necessary. If you have severe instability, I would highly recommend PRP and in really severe cases i would recommend stem cells.
I am from India love from India,r u recover fully ❤❤
I am still receiving prolotherapy, and still recovering, but I would say I’m about 80% there. Thanks to Prolotherapy I’ve almost got my life back
@@theprolopatient r u take only prolotherapy or prp injection?
I have heard mixed results from prolotherapy. Are you cured?
Is recovery 100% possible ? And won't these pains and symptoms and the same disease come back after some time ?
I will let you know I am still on my healing journey. But I do believe it is possible.
@@theprolopatient 🙏🏼🙏🏼🙏🏼
Where you dizzy
is DMX xray safe?
Much more than an MRI
@@bluesgirl65 how so?
Very. Same amount of radiation as the phone in your hand.