5 Years Post Op // Craniocervical Fusion Surgery (My Experience & What Actually Helped Me Heal)
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- Опубліковано 13 тра 2024
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You are poised, honest, and insightful. You have had a significant impact on my healing journey. It is so brave of you to go into your past and relive some of these traumatic decisions and moments in your life all for the betterment of others.
Rachel you are a gift. I am so appreciative of everything you do for the self healers out there.
Thank you for this video - my 12 yo is ill and I think she has CCI based on her scans, her CXA etc. I am someone who has posted on FB asking about why you credit brain retraining for your healing when you have had other very major things done. I didn't mean to upset you! My feeling is that your brain retraining wouldn't work very well until the ligaments were stabilized....your description of how fearful you are about your neck is how I feel about my child. I feel terrified that she's going to get hurt and get more sick. The fear is tormentuous.
did you use Henderson?! Or Bolognese? I guess you are keeping it secret?
You deserve huge respect for what you have been through.
It’s impactful to hear about how much this surgery, and the ones following, negatively impacted you. Especially to hear about how it’s impacted your breathing and airway. It makes a lot of sense hearing the concerns for folks with EDS being offered this operation. The potential for adjacent segment damage below the fusion area should be talked about much more.
BTW: I’d watched all your older content and the battle you’ve had before and after fusion. I don’t think it’s right that people would give you a hard time when you share your experience about this. All our bodies are different and especially with an operation like this, it’s super major, and has life long impacts.
This is coming from me, someone who spent 14 years trying to get better while utilizing many modalities of treatments, diet and, other practices for my health. In the end I had c1-c2 stabilization for a total instability and posterior dislocation. I’m very lucky it’s helped me regain control of my body because I have seen how many people this surgery hasn’t had the improvements they deserved and the complications are brutal.
All to say I’m rooting for you Rachel. Seeing your content while I was in the midst of making my choices helped me feel like I was going into all this eyes open. Even if it was hard to see the potential for worsening I was at a point I needed to know. I’m really glad that you have much more health today. I feel for you what it must be like to grapple with the harder parts of what you’ve been through. Your strength is beautiful.
Rachel
One thought: I had a craniocervical fusion, Chiari decompression, and tethered cord release in February 2021. The next 3 years were extraordinarily tough with a chronic csf leak, immune problems, severe leg weakness around 2 years post op. But I had done brain retraining and physical therapy before the surgeries, and never saw the benefits that I am seeing now from brain retraining and physical therapy (including lymphatic drainage massage). My pcp really is convinced that 3 years post op I'm finally seeing benefits from the surgery. I really think that the anatomical changes have allowed me to benefit from pt, brain retraining, ivig, etc in ways that I didn't pre surgery. I identify with a lot of what your saying, particularly getting sicker post surgery. But at least for me, it has allowed me to benefit from other treatments in ways I didn't before.
this was my thinking too but she's saying other areas of instability have also healed.
@@stephaniew4168true but it’s also possible that the other stuff could only work once the brainstem is ok
@@GhostSubstitute yes that's a possibility....so brainstem compression can create instability all throughout the body? That certainly defies science as well...who knows at this point!
@@stephaniew4168 well, but it’s more of a brainstem controls many nervous system functions. If we assume the nervous system could be the causative factor for these issues then it makes sense that if the physical anatomy makes the brainstem give faulty signals. Maybe it’s related?
@@GhostSubstitute it's possible but that's certainly not the science anyone is working with. They are simply stabilizing the cervical spine and not ever saying that stabilizing that will stabilize fingers for example. This would be brand new science.
I came see Dr bolognese and his people and as the neuropsychologist told me it’s not a cure but it can help you. Thing is we don’t know what percentage looks like for everyone. Everyone is a different case.. I did everything for 2 years and I still can’t get to a place where I wanna be my neck just hurts so bad from being unstable so I believe I’m making the right decision.
I tried to get in with Dr. Bolognese too, but he doesn’t accept patients who are still working full time. I’m lucky I’m still able to work but damn I just wish I could get in with a specialist who studies the upper neck seriously.
@@ssgg23 where did you hear that??
@@andresavelar8352 Directly from Jeff Wood, a former patient who now works for the office and handles potential patient inquiries for Dr. Bolognese.
You’re beautiful! Inside and out! You’ve helped me with my CCI route so much. Xox I document my journey with regen and carnivore soon. CCI is an absolute beast
Hey, been thinking of you. How’s it been going with the PRP treatments?
Thank you for sharing your story. The bird sounds were so lovely to hear as well.
My sister has had this surgery, along with many other surgeries. It almost seems like the more surgeries she has, the more she needs, but she is convinced that it is her body failing her that is causing more surgeries and not the domino effect. She sees all these “top surgeons” who keep dragging her down this path of more more more, without ever spacing the surgeries out to allow for any real healing to occur.
I suspect I have some of the same issues as well, but I’ve taken a different path, but also, I’m not in her shoes and I don’t know the truth of what is necessary or not.
I’d love to hear in a video or response (if you are up for it, of course). As to how those around someone with these chronic conditions can be supportive? I’m lost on how to approach her or the right things to say. Anyways, thank you & I am so happy that you’ve found a path to true healing! It’s a lot of work, but good things don’t come easy.
I haven’t experienced much progress with prolo but I have never considered the impact that a dysregulated nervous system could have on its effectiveness. Thank you for sharing that tidbit! Definitely an a-ha moment.
I greatly admire what it must have taken for you first to go through with making this video and then editing it and putting it out there. I hope you are celebrating its completion! You deserve to.
Thank you for sharing this. It must have been very difficult ❤
I am glad you have found a way! Thank you for all your videos!
Appreciate your honesty, thank you ❤
What an amazing honest video , Rachel ..!!!
I wish i could meet you in person and hug you..
You are amazing and beautiful. ❤❤❤❤
My other question for you is how could have you cured yourself if you really needed decompression for the chairi?? I don’t understand how that would have been possible.. maybe there was a delay in your healing but as they told me after surgery you gotta put IN THE WORK TO GET BETTER! So idk very interesting your story..
Thanks for your honesty Rachael! It is so helpful and glad you are healing :)
I'm glad to hear that. Thank you so much! ❤️
Rachael, you are the reason that I revisited brain retraining after writing it off for a couple of years, and it has given me so much more quality of life and hope. And that definitely a God thing. Thank you for being so vulnerable and putting yourself out there. God used and is still using you in my life and in countless others, I am sure. Keep being your beautiful, authentic self❤
Which program did you settle on??! Great comment
I had an artificial disk replacements on my neck C4-C6. Even though I didn’t have any serious complications I wish I had tried other treatments first.
Thank you for sharing your story ❤.
Thanks very much for sharing this Rachel. I can tell it was difficult talk about. I really appreciate you sharing your experiences, your channel has been helpful to me in my journey wirh CCI.
So happy to hear that. Wishing you all the best!!!
You are such a blessing! God is using you and your story to help others. My daughter is 16 and going through everything that you have. You have guided me and gave me strength to help her. Thank you, thank you, thank you! I’m so sorry that you had to experience all of this though. May God continue to bless and heal you!
Thank you for sharing your story! It’s very brave. I had a total colectomy when I was 19 (before I knew all the healing modalities I know today) and I used to always wish I could go back too and not get all that intestine out bc as you know we realize it is all completely unnecessary. BUT our bodies are miraculous and are honestly way ahead of us and your body will continue to move to a new normal that is beneficial. I am 35 now and even though I’m missing 9 FEET of intestine, I function surprisingly normally. So don’t have fear about “what could be” ,our bodies know what we want and how we want to function. These bio suits are really incredible! You’ll get better and better each year and eventually a decade down the line you may even forget anything was ever done to you. Visualize your ideal outcome for yourself. I always thought that sounded hokey when I was really sick but it truly works. I wish you the best. You are doing amazing ❤
Hey Rachel, thanks for sharing. Glad to see you're still doing so well :) I have hEDS, POTS, and gastroparesis. I've been doing pretty well though sticking to a mostly animal based diet, but one of the limiting beliefs I struggle with is knowing no.matter whay I do, I will always be hyper mobile. Like I can bend my fingers back to touch the back of my hand 😂. And I think some of that hypermobility in my spine is a cause of a lot of my dysautonomia. (Though again, I've Eben doing better animal.based and working out alot.)
Sorry for the long ramble. What I was wondering was, when you say carnivore brought your body more stability, and you no longer meet eds criteria, do you mean you actually are no longer hypermobile? Thanks again!
Thank you for sharing your experience. I have also started the carnivore diet, done prolo therapy, and done many other therapies. I am a year and a half post prolo. I love dr Hauser and Caring Medical, I feel like they gave me a year of amazing life, I however cannot afford to go back every year for tune ups. I am now completely destabilized again and back in the neck brace almost full time and using my wheelchair again. I am at a last resort for help again. I am considering the surgery. I am grateful for another opinion and shared experience to give me more to consider. I am so glad you are getting better and healthy.
Ps my name is also Rachel Elizabeth lol
I had the PICL procedure 2 months ago and am hoping to avoid fusion. I have been following “the steady coach” and “Christina Choy” on here and the neural retraining videos are so, so helpful. Thank you so much for always sharing your story.
So glad you have been doing so well recently- I've been following your journey for years as we've had very similar paths. I'm curious if you ever received treatment for your sleep apnea? Do you use a CPAP machine?
Long video, long reply 😜 1st… Thank you for sharing your journey, you’re giving people hope. It saddens me that my wife and I missed meeting you and Jake at Caring Medical. Treatment the same day, just too far apart for it to work out. My wife’s journey a little different but gut wrenching and traumatizing it was, for both of us. I needed Jake as much as she needed you at that time. Your videos helped though 👍 Kudos to Jake and your family support as well… “they also should take a bow”. In the future maybe Jake could post about what he went through. Caretakers can be beat down, more so if the family support isn’t there. I need to probably do one as well. My wife doesn’t feel she could do it so I’ve been shedding light on her story on X. She’s in a lot better place mentally now, as my wife was on 4mg of Ativan due to her issues. Now been off over a year 😊She was on that still when she started treatments at CM. It still helped to where we could heal the mind and now she’s pretty well. We can’t get any good chiro help here in Ohio. They’ve only hindered her healing so we are heading back to Florida and finishing her up with Dr hutcheson in a couple weeks. What a man he is 💪
Blessings to you and the family and again… Thank you for doing what you’re doing. Keep thriving young lady and go claim that neck back!!! You got this!!! 🫶 #HeIsInYou ✝️
Yesterday i had c1 and c2 fusion today is the second day my neck is painful 😮 im still laying in hospital bed .i can wait to get up and walk again
Hoping all the best for you!!!!
Hey, saw your comment.
I had my C1-C2 fusion 6 months ago and it helped me with many of my symptoms and I’m walking again. It’s a slower recovery with an operation like this. I’m still early in my recovery (6months) ans considering the magnitude of this operation it takes time. Please be kind to yourself.
@@Rachelspathexcited to see an update video from you!
@@StarHarvestOfficial Hey Star, thanks very much for your message. I will be making an update video sometime soon, but in the meantime, I do have a 3-month update video that you may be interested in.
3 Month update: C1-C2 Fusion Surgery #AAI #CCI
ua-cam.com/video/1AMPHPCyv7s/v-deo.html
I recognize that I have been very fortunate to have a positive outcome from this operation. It sounds like, for Rachel Elizabeth, the surgery worsened some of her health complexities and she still faces many challenges from the fusion.
In my case, I’ve had major gains so far. My CCI and AAI were the result of an accident, not EDS, although I do have some hypermobility. After the accident, 14 years before diagnosis, I didn’t understand why I was improving in my protocols and abilities to support my overall health but was experiencing increasing neurological setbacks, eventually leading to my condition becoming critical.
I am now six months post-surgery. While it's still early days, I’ve had no post-surgical complications or new symptoms. Despite previous paralysis, I’m fortunate to be walking and getting stronger, without reoccurrences of being “locked in.” My sensory and brain injury symptoms are still in the early stages of healing, with ongoing vision and balance challenges. I’m doing daily rehabilitative exercises to manage these issues. I still have shaking and some vision flashing, but no more white-outs or vision loss. My cognitive limitations are challenging but are slowly improving, and I no longer feel like my brain is starving. I swallow better, don’t wake gasping for air, and my walking is strong. My C1-C2 area feels better, but I do have damage throughout my cervical spine, including stenosis, so I know working with all these layers will require time and care.
Overall, I’m much better in most areas, though still homebound except for walking. I believe continued brain and body rehabilitation will bring further gains over the next few years. I have good support and receive weekly treatments at home, feeling hopeful despite daily challenges. I’m lucky in many ways and am doing everything I can to maximize this opportunity for healing and future function.
@@StarHarvestOfficial
Hey Star, thanks very much. I will be making an update video sometime soon, but in the meantime, I have a 3-month update video that you may be interested in.
3 Month update: C1-C2 Fusion Surgery #AAI #CCI
ua-cam.com/video/1AMPHPCyv7s/v-deo.html
I recognize that I have been very fortunate to have a positive outcome from this operation. It sounds like, for Rachel Elizabeth, the surgery worsened some of her health complexities and she still faces many challenges from the fusion.
In my case, I’ve had major gains so far. My CCI and AAI were the result of an accident, not EDS, although I do have some hypermobility. After the accident, 14 years before diagnosis, I didn’t understand why I was improving in my protocols and abilities to support my overall health but was experiencing increasing neurological setbacks, eventually leading to my condition becoming critical.
I am now six months post-surgery. While it's still early days, I’ve had no post-surgical complications or new symptoms. Despite previous paralysis, I’m fortunate to be walking and getting stronger, without reoccurrences of being “locked in.” My sensory and brain injury symptoms are still in the early stages of healing, with ongoing vision and balance challenges. I’m doing daily rehabilitative exercises to manage these issues. I still have shaking and some vision flashing, but no more white-outs or vision loss. My cognitive limitations are challenging but are slowly improving, and I no longer feel like my brain is starving. I swallow better, don’t wake gasping for air, and my walking is strong. My C1-C2 area feels better, but I do have damage throughout my cervical spine, including stenosis, so I know working with all these layers will require time and care.
Overall, I’m much better in most areas, though still homebound except for walking. I believe continued brain and body rehabilitation will bring further gains over the next few years. I have good support and receive weekly treatments at home, feeling hopeful despite daily challenges. I’m lucky in many ways and am doing everything I can to maximize this opportunity for healing and future function.
You are so Lucky to hace been able to have this surgery... ( Thanks GOD )...
Im dying from severe AAI / ICC with several respiratory pauses during for jours, its pure hell... The worst synptom !!!
With swalowing matters, simili paralysis, Heart and tension matters, vert sévère dysautonomias... sévère pain, bedbound 23h55 / 24h since several yesrs etc etc etc
But unfortunately, im unable to afford even only one surgery...
Im glad you recovered enought to enjoy Life a minimum
Are you able to use any kind of insurance, or something similar? I've heard in the US some have been able to get help from Medicaid, but I'm not in the US so not sure what it takes. If not that, do you think a gofundme or something like that may help? It's unacceptable that you're not able to get help when it's that bad, imo.
Brain retraining, carnivore and prolotherapy she's saying was most helpful
May I suggest maybe looking into the blood type diet as well.. I think I felt my best when I followed this. Take care love
Thank you so much for sharing! Do you feel the stent surgery helped your intracranial hypertension? Or was something else more helpful for that?
I would love to try the carnivore diet, especially after hearing about your healing on it. I'm completely bedbound with similar issues as you suffered from. But my kidneys are failing due to medication I'm on to save my eye sight from intracranial hypertension. I'm not allowed much protein due to kidney issues sadly.
I was reading there is a low carb vegetarian option
I went to caring medical as well. Dr. Hauser is the best. ❤ I do wish I would’ve started primal trust prior to doing prolo/prp. I had multiple vasovagal responses after treatment which was terrifying and had to get a lot of treatments. Many more than you. It has helped me immensely on its own, but I truly wish I would’ve started primal trust prior to prolo. I know I would’ve faired far better.
Love the birds chirping in the background of your video 🥰
What are vasovagal responses?
@@B3l0v3d05 it’s basically an overstimulation to the vagus nerve. I already did not have a hardly functioning vagus nerve at all due to chronic illness/severe nervous system disregulation. So when I would do the procedures I would get that response because it’s a lot of stress to the body. Your blood pressure and heart rate drop and you get certain symptoms like dizziness, tunnel vision, sweating, turning pale, and sometimes passing out/fainting.
@@Narrowway7 gotcha. I get some of that
Did you have parethesias (weird nerve sensations) after prolo or prp with Hauser? I had the vasovagal stuff and now seem to have nerve damage, with the nerve weirdness continuing now 8 months later....
@@mollyr9149no I did not get that! Sorry to hear that. I do get weird sensations in tops of my shoulders right at the base of my neck if I’m hot outside doing a hike or something. Hard to explain. But that seems to have gone away now.
Hi! My body is diagnosed with CCI and also recently severe dystonia with swallowing and issues walking. What helped most with the dystonia? Thank you
Rachel, I have followed you for years. Our daughter has followed a similar path. She actually looks a little bit like you too. She’s a beauty. I really wanted to listen to this video but the birds chirping make me crazy! Talking about is so important! if you ever do a remix without the bird songs, we would just so much appreciate it! isn’t it crazy how the microphone captures the bird sound?
It's possible to google a website that lets you download youtube videos and then you can find a website that reduces or even takes away background noise
You truly are a miracle!
Hi! Can i ask you from all the knowledge you've gained until now would you say these alternative treatments can help someone who has cci from trauma? I was hit in the head with a huge amount of weight and since then hell started for me. I can't find any info if this is different from eds patients, since whatever you heal in your body the damage was from an outside force.
Hi Rachel
What medications do you take??
Did you find any physiotherapy that helped? Such as strengthening and stretching exercises?
That birdie is trying to talk over the top of you! Haha x
Did you benefit from curve correction and seeing dr. Hutcheson?
Yes I did! 😊
@@HealingWithRachael So happy, i'll be coming to him from Europe next month!
Wow! Hoping all the best for you!!
What is your history with B12. Carnivore will probably increase B12. Do you have a level you feel works for you?
I’m honestly not sure!
How did you safely transition to carnivore?
Do you regret the tethered cord surgery ?
I don't regret it because it didn't cause me any complications. But it also didn't bring me any progress/improvements!
Thank you for the reply
A retired orthopedic surgeon said he never saw one spinal fusion patient that didn’t end up with more problems above and below the fusion. Spinal fusion is not a cure.
That doesn't surprise me at all! Thanks for sharing.
It depends brotha, how fucked your neck is.. someone who’s payed sports like football and rugby or had a connective tissue issue and gets a fusion of course there gonna have issues occur quickly because of wear and tear compared to someone who’s never played sports and doesn’t have Eds.. so that fusion could last him a long time and no issues below or upper.. for example people who get fusions because of fractions compared to ligament damaged for some reason do way better IDK WHY! Fucking mystery!!
Keto can be amazing for healing - especially for chronically ill people. I was carnivore from 2016-2021. I got reactivated EBV in 2019 and had a lot more EDS/POTS/MCAS and immune problems. My blood labs and my heart have big problems. I’ve recently restarted carnivore for several reasons. I’ve been in bed for almost 5 years and there are no other options. Low Dose Naltrexone and low dose Methylene Blue have been almost a miracle for spine and neck pain. I never saw Henderson after I had the upright MRIs that showed bad results. I never considered surgery. Your story confirms that there are other alternative treatments that work despite fusion surgery. God can sustain a human body that has all kinds of problems. I’m praying that you continue to thrive! 🙏🏻 I have been very encouraged by your videos! ❤️❤️❤️
@@leslietascoff9784 what reactivated EBV? I read that 99% of the population have this but it could be dormant and something can trigger it.. I had a trauma accident to the neck that took my neck out..
Wow!
You are so Lucky to hace been able to have this surgery... ( Thanks GOD )...
Im dying from severe AAI / ICC with several respiratory pauses during for jours, its pure hell... The worst synptom !!!
With swalowing matters, simili paralysis, Heart and tension matters, vert sévère dysautonomias... sévère pain, bedbound 23h55 / 24h since several yesrs etc etc etc
But unfortunately, im unable to afford even only one surgery...
Im glad you recovered enought to enjoy Life a minimum
I am so sorry to hear of what you're going through, and really feel for you. But if you watch the video you'll see that the surgery actually worsened my health and brought me many complications. It wasn't what helped me to recover.
I'm truly wishing you all the best and hope you find healing.
@@HealingWithRachael thanks a lot, and GOD bless you 🤲🏼🤲🏼🤲🏼
I know its a very risqy survery that dont make Always miracle, but Glad that you Can be out in nature, with a pretty little, but existent, quality of Life .
💐💪🏼
Thank you so much ❤️ I am actually doing very well now! It was a carnivore diet, prolotherapy, and brain retraining / nervous system work that has helped me heal. Truly wishing you all the best. Don't give up hope for healing!
@@LG-dm7nvseems like she's living more than a small life!