2 YEARS POST OP // CCI & Chiari Surgery Experience Part 1
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- Опубліковано 3 чер 2024
- Here are some my raw thoughts/reflections on my chiari malformation and craniocervical fusion surgery. I was fused C0-C2, and a piece of my skull was taken out to decompress my chiari malformation. What a journey it has been!
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#ChronicIllness #ChiariMalformation #CraniocervicalInstability
I think it is important for people to see these raw and informative videos to know the reality’s of surgery. So with that being said thank you so much as you inspire me and others to keep up the fight!
Thank you for your kind words! I'm glad it is helpful in some way. ❤️️
@@HealingWithRachael hello mem chiari malformation surgery success full help me
Thank you for sharing your story! It's so helpful.
Thank you for making an update. I saw the most experienced neurosurgeon in the area, and he said he had never seen any deformity like mine in his 26 years. Was thinking Dr. H was my only option but was steered to a more up-and-coming surgeon to help. My CXA is 118, other measurements are off, and I have retrolisthesis all the way to C6. I have my first appointment June 16th. I have no clue what Dr. Yu will say, but I’m glad I at least have your experience to look at.
Thanks SO MUCH for sharing your honest experience on this. I'm bed ridden and I'm in so much pain sometimes that it clouds my judgement. I make it seem like surgery will solve all my problems to escape when I don't actually think it would
Prolotherapy Dr Hauser
I just want to let you know you have truly helped and inspired me through my own illness journey. People have no idea the amount of strength it takes to go through this. Keep fighting and inspiring others. God bless you.
Thank you for your honest feedback!! I'd rather hear the raw reality even if it didn't work out the way as well as you hoped you are very brave thank you xx
Thankyou for this ♡
I'm pre fusion and this has been eye opening ♡
Thanks for sharing your insights and experience!
Thank you Rachel for sharing your raw emotions on this, it must be emotional to talk about some of your harsher/less positive outcomes of such a major decisions. But it is very important for the community, so thank you for making a video about this!
I have a question, please feel free to answer if you feel comfortable answering and if you also think the answer could be useful for others to know. Exactly what about the fusion has led to an increase in anxiety for you? I guess it must be partly related to the surgeon's advice of not moving your neck to not ruin the fusion? I have also thought about if a limited range of motion in itself could cause anxiety in some way, because it's a less natural state for the body to be in.
Thank you again for the video! ❤️
I can see the trauma in your eyes and feel it through the screen. Thank you for showing tremendous courage and talking about your experience. You aren't scaring anyone, your raw experience is what it is. You speak your truth, it is helping people. Have you considered getting therapy? I can tell you have been through hell, you deserve to be at peace with what has happened
thanks for the honest video, your honesty might prevent some unnecessary fusions as they try other things first. Thank you.
Thank you so much for sharing your story.. May I ask what was your main reason to do the surgery? what was your symptoms
Thank you for sharing your story, I need someone to talk to about my neck i feel alone and depressed.
You are incredibly powerful. Your strength to speak is changing lives. Have peace in that. I would like to reach out to inquire whether you have approached the inflammation component since Lyme/CCI in tandem result in inflammatory cytokines which increase pain levels.
I would like to offer some insights.
Love your resilience
Thank you for being truthful, especially about really hard topics. It’s evident your journey hasn’t been an easy one. Your perspective and faith through it all is a tremendous encouragement. We love you💚 - Megan&Danielle
You are the sweetest! 💚 Thank you for your kind words and encouragement. I hope to get to meet you and Danielle one day :) Enjoy your last days in Florida!!
@@HealingWithRachael you’re welcome!! We hope to meet you too someday:). I have a good feeling it may be a very likely possibility!! If I can find a way, I will. In the meantime, I love being your friend from afar💚
Never doubt your decisions. They come from your heart and mind based on facts and circumstances when the decision was made. That said, you’re here, you’re lovely, you’re accomplished and you have family and friends who love and support you. When I watch your videos, I feel like I am seeing and listening to a good, good friend. Never give up. Keep fighting the good fight. And I will always listen and always respond. 😇😇😇🌹🌹🌹🙏🙏🙏
Thank you so much for your kind words and support! ❤️❤️
Thanks for sharing your thoughts 🙏
❤️❤️
Thank you for being so courageous and sharing when it is so difficult to even be upright. You are a powerful force.
I would like to speak with you with regard to your most significant symptoms.
Pls contact me.
Do you suffer at all from CRPS symptoms? I have burning/inflammation pains throughout my body due to CCI and I’m curious if this is a common CCI symptom. Thanks!
Thanks Rachel ,you are so brave and honest this is so helpful to others going through all this, appreciate you talking about it even if it's difficult for you. I have all the same diagnosis EDS,CCI AAI chiari and Lyme.not operated not sure if it will be possible to avoid surgery. When you talk about regenerative therapies and PICl have you heard of EDS CCI patients having good results from this???I can't find much information on positive results with EDS only trauma.
Thank you.
Thank you for your sweet message! I'm so glad it has been helpful in some way. Yes, I've heard of lots of EDS patients that have had good results with regenerative medicine :) I've found this FB group helpful: facebook.com/groups/308026379766495 (Janelle’s Medical Journey - Keeping her head on!) She had very severe instability/eds and was told she needed emergent surgery and opted for the PICL and had great results! ❤️️I know everyone is different/there's no way to know how we will all react, but honestly, I've heard much better results with EDS and regenerative medicine than I've heard with EDS patients and surgery. I sure hope insurance will cover it in the future! :) Wishing you the very best with your journey!!
You are so brave and I am with you girl. You really are such an inspiration! I think I am going to go to Colorado and try that first. What do you think of Caring Medical in Florida vs Colorado?
Thank you for your sweet message! I personally don't have experience with either of those places for regenerative medicine, so I can't really say for myself. But I have done research on both of them, and have heard positive things about them. One of my friends just went to caring medical and she had incredible results. She has a channel too where she shared her experience at caring medical: ua-cam.com/channels/Z55R_0iRpzK8geKLms8a8w.htmlvideos
As for regennex in CO, there is a FB group where a girl shares her story with the PICL procedure & many others as well: facebook.com/groups/308026379766495
(Janelle’s Medical Journey - Keeping her head on! ) I think the big difference is that CO is the only place that has the PICL procedure. But some do well without it, too!
Hope that helps! Wishing you the best ❤️️
@@HealingWithRachaelThank you so much for that Rachael!
My wife and daughter both have had decompression. Stay well!
Thank you for sharing
Thank you for sharing!
Of course! ❤️️
Can you talk about what did improve for you after surgery?
Can I ask you question , how many vertebraes had ur surgeon fused??? Is it from the skull???
Where do you get the prolitherapy and PRP and stem cell
What's the difference between PRP and prolotherapy ?
Thank u for sharing
Also has the surgery improved your quality of life?
I decided against it after watching your experience. I was scheduling with Dr H when I saw some things that scared me. You and some others in the fb group really worried me. My quality of life isn’t great but I just don’t think I want to move forward right now. You’re very brave though. 💚
Wow, I’m sorry to hear your quality of life isn’t good, but I’m glad you were able to make the best decision for you. My intention is never to scare people or persuade them to try or not to try a treatment, just to share my experience/thoughts (for what it’s worth, haha). I hope you are able to find a way to find relief soon no matter the means. 💚
Have you seen good stories with stem cells?
Thank you for sharing! To be honest!
I had the surgery in June 2020 (C0-C2) and I had to go back in October. I was doing well after the first surgery the first weeks/months. After being sick for years and the last years before surgery totaly bedbounded. I couldn't sit up only flat in bed. Lots of neurolagic symptoms. It was the last thing for me. But not an easy choice. I had to go back in October because it went bad again. Lots of test and I had to go back in for surgery. I had a hernia and instability c5-c6 and now I am fused C0-T1. I understand your feelings! It is hard and also mental this time. No movement in my neck and all do I make small steps I am still most of the time in bed! Sitting up is hard my muscles can not carry the weight because the muscles are too weak! I am happy with the steps that I make but this way is so hard and long! I am a proud mother of twins (16 years old) and my dream was getting up more and eating downstairs again. Being more up! I feel you! It made me cry your video. I am better than I was before surgery but still sick and mostly bedbounded and in pain and now with no movement at all. The guiltfeeling is so hard! I have an amazing husband and kids and family! But it is not easy! But so blessed with them!! I am happy with your honest video and you are right consider it only when you are out of options and you have no quality of life. Because it is not easy! Sorry for the bad English. I am from the Netherlands. I wish you all the luck!!
Thank you for sharing your story too. I'm sorry you are suffering. I'm fused C4-C7 and fear needing my entire neck fused. Thank God you have your husband and your children, an absolute blessing. I'm a 47 year old woman and I've never been married, no children either, no family other than my elderly parents and my older sister who isn't close. I've been in chronic pain since I was 22 and it's held me back in many ways. I've found a little bit of comfort talking in a chat room with others who've experienced spine problems. The website is spineuniverse and they have a "pain community", it used to be called a forum, which I like better. If you haven't found them yet, you might like to hear different perspectives on how to feel better etc. Keep the faith you will be feeling better!
Hi Cindy,
Thank you so much for your kind message and for sharing a piece of your story. It sounds like you have been through so much. It is tough not to feel guilty, but please remember it isn't your fault. ❤️️You certainly aren't alone.
Wishing the very best for your and your family, and hope you see improvements in your health one day!
-Rachael
All is karmic retribution. Bearing with faith and prayer makes it possible. Life is a test of patience and faith as we have to suffer past life karmas. May your faith in God grows stronger and complete.
@@user-gh3rv1of2b having one good person in life is Paradise. So it's not a problem if you don't have husband, destiny is supreme in that matter but never lose faith in all seeing god.
Did you get your treatment in the Netherlands?
My daughter’s condition mirrors yours, Did you use a special pillow to sleep with?
Thank you for sharing your story so bravely. I had fusion surgery 6 years ago from C4-C7 and just recently had a pain flare so bad I brought out my neck brace to wear. Fusion as you know can wear out the adjacent structures in your neck. I have crunching and grinding pain sometimes and it feels like things are slipping out of place, even into my bicep. For a while I had arm spasms where my arm would spasm as if I was trying to scrunch it up to my shoulder, I haven't found a doctor to tell me what that is.
I don't have EDS, nor Chiari Malformation, but I can identify with the spine pain and symptoms. My 3 discs were compressing my spinal cord causing constant horrible pain, weakness, numbness, tingling, dizziness, and I've had tinnitus most of my life. They told me I had to have spinal surgery because if I fell I could become paralyzed. Although, the day of the surgery they give you a form to sign that you acknowledge the surgery is elective, ha. No one has ever told me I have instability but when I hear the symptoms I relate to it.
At the time of my surgery, no one was talking much about PRP or Prolotherapy. I was trying to get artificial discs instead, but I would have had to go to a hospital outside of the US for many thousands of dollars out of pocket at that time because I needed 3 levels.
I have found Regenexx as well and it's not far from my home, but the doctor that works there has many negative reviews. He has 4.1 stars out of 28 reviews on Google. Some comments of patients sound like their pain has increased and it hasn't gone away. I've been afraid to try them. To go to the next location would be a far for me. Also, it's expensive and as you know you need to keep going back.
I see some people in comments mention Caring Medical. They make many videos online that make a lot of sense. They offer prolotherapy, but they too have many horrible reviews of it not only being useless but increasing their pain. It seems to be hit or miss and incredibly scary. You mentioned PRP helped, any advice on how to find a good location?
I haven't been on it in some time but there is a great resource that lets you talk to others with spine issues, surgery, etc. It's called spineuniverse and you have a chance to join their community to talk to others and share what might help, etc.
I just found your channel and appreciate you offering your experience. You are strong and a fighter. Thank you for sharing your journey that is deeply personal on such a public space. May you continue to heal! ❤️
Thank you for your kind comment and for sharing your thoughts! I'm sorry to hear you have been struggling so much with your neck.
Totally understand the fear of negative reviews, etc. But something I've found over the years is that no matter what treatment/doctor/surgeon it is, there will always be someone out there trying to convince you not to go with that particular treatment/doctor. There will always be negative reviews whether its from a truly negative experience or even from a crazy person (sorry for lack of better words, haha).
This was something I encountered a lot when trying to choose a surgeon. Even with the very best, there were always negative stories. This can be so overwhelming when you really just want to make the right decision for your health! The best advice I can give is to go with your gut/intuition after your own research. ❤️️
I had my first round of PRP done at In2it Medical in Pleasant Grove, Utah and had a really good experience. It was a local place for me at the time. There are many out there, I'd just make sure you find someone that has lots of experience with spinal/neck injections (if that's a route you feel you should go down).
Wishing you the very best on your health journey!
@@HealingWithRachael Thank you for your kind reply. I agree, almost everyone has a bad review about them or no reviews at all. Some could be unwarranted or unfair. I saw quite a few surgeons before I picked mine. After my fusion my right vocal cord was paralyzed and never came back. They told me none of their patients has ever had that happen and there is a less than 1% chance of it occurring. Also, there are some disc fragments still left in my spinal cord that I can see on the MRI. I asked my surgeon about it, and he had nothing to say, leading me to think he accidentally missed it. I thought perhaps it was too dangerous to pluck out of my spinal cord.
Would you mind sharing how often you need to follow up your PRP injections? I'm very interested but it is quite an investment.
I heard that you had spasm in ur hands it's called spasticity , by the way u had weakness right how many months did it take to recover, now you are alright right ?? Bcz I had a surgery 7 months ago , I've had the same compression in my ç3 and I've fused skull to ç3 blow I'm regaining strength and reducing spasm in my hands and legs hope u can share your survival journy with me❤️😘
@@-Ghost._ My surgery was C4-C7 and it was 6 years ago. When i posted my post above I was feeling worse. My pain will flare sometimes and it's always upsetting to me because not only does it hurt and make it hard to think, but I don't want more fusion limiting my movement. I'm feeling a bit better now. I tried something different to my usual pain regimen. It's not recommended but I bought ThermaCare Heat Wraps that are made for your lumbar spine. They heat when you open them and it lasts for about 8 hours. I wrapped one around my head so it was covering about my C4 and up, where my pain was the worst. I wore it for 4 hours then slept with it. The directions say never to sleep with it, but I did. I woke up 4 hours into my sleep sweating and took it off. My pain felt much better though after doing that. The safest way would have been to lie down on the heat wrap while awake. When I wore it sitting up it didn't make enough contact.
As for my spasms I'm not sure why it flares at times and then it's fine. The doctors don't know what to tell me either. I had an mri of my brain and everythings fine. I do have some pieces still pressing on my cord from rither the ruptured disc or part of the donor bone fell out into the spinal fluid. There is a section of the donor bone spacer that looks smaller than the other 2 and the amount in my spine is the right size. Right after my surgery I was being wheeled back to my room and I couldn't talk yet from the strain of the surgery. The orderly moving me left me unattended and didn't lock my guerney. I started to roll backwards out of the room and into the hall and hit a wall. They did an xray and everything looked fine, but then you can't really see the donor bone well on it like you can on my mri. That's just my theory.
I'm sorry you are suffering. I wish you all the best in your healing.
@@user-gh3rv1of2b bro the pain will come when u strain ur neck example:- when ur reading Book, playing games, walking for hours etc , bro my question is did you regain your strength in your arm bro the spasm is because u said that the bone pieces is still touching the spinal cord that's why it's spasming ur hand ❤️ by the miracle of God I wish you have a good life😉 2nd question after your surgery done can you able to move ur head that time, bro icant move my neck after the surgery after 3 months of proper exercise I can able to move my neck iam very happy but I can't move my neck that much but iam happy with it😁 and surgeon said it will increase a lil bit after 1 year😁
is driving difficult for u?
All your feelings are completely valid & I feel the same about mine also! So many similar feelings I can relate too. Also my anxiety has gotten worse since my original posterior cervical fusion, but I had chiari decompression 3 1/2 yrs earlier. Dr. H even was impressed by how well my cerebellum stayed in place since I had CCI & AAI also. My AAI was at a 90% facet loss..
I was Diagnosed with the ff:
1.Chiari 1 Malformation( had already decompression surgery 4 months ago but until now I'm suffering from headache)
2.Obstructive Hydrocephalus
3.Myopia( everytime consultation to opthalmologist because my vision becomes blurry and blurry)
4.Scoliosis
5.Severe Sinusitis( I had surgery 4 yrs ago)
Because of these illnesses I quit to my Job,without my parents to feed and helping me everyday I am not able to live any longer, I am depressed and suffered from anxiety and want of surrendering but seeing my parents who are doing everything for me push me to still fight and get alive 😭😭 Lets all keep fighting my friends!! Let us keep our faith to God and he may help us🙏🥺
How is ur pots now
Beautiful fair skin girl ....surgery is mostly safe..
I am a neurosurgeon
Are you able to walk ok
You are hard as nails!
Why are you wearing collar all the time??
I don’t wear it all the time. I believe I explained in the video, I wear it as needed-and it significantly helps with symptoms (though I’m trying to not wear it as much as possible)
@@HealingWithRachael I had a fusion from skull to c3 my doctor requested me to avoid collar after 3 months after surgery , that's why I asked you😁
@@HealingWithRachael can I ask you one more question, did you not gain a little motion after 2 years
@@-Ghost._ How are your symptoms after surgery?
2 years since your surgery, and you're still in a neck brace?!?!?
Yes, I was. My instability after got worse actually. My surgery didn’t help me unfortunately! But I found healing in others ways and am doing great now. I just posted a 5 year update.
U couldn’t just went to bioxcllerator and would’ve healed with out the surgeries
Actually, my surgeries have only made my healing more complicated.
It break my heart that you have been taken advantage of so many times by bad doctors on your chronic illness journey and continue to be. Please continue to do research and follow CDC guidelines on conditions
Thank you for your message! ❤️ It has been a rough journey, but I don’t really feel like I have been taken advantage of by doctors, thankfully. And unfortunately, the CDCs guidelines for some of my conditions, like lyme disease can actually be very harmful to patients!
The cdc gives shit advice on chronic conditions.
Up until recently the cdc used to recommend graded exercise for cfs.
Fuck them
The CDC has been horrible to chronically ill patients. If the medical establishment actually cared and had their act together many people wouldn't go through this amount of hardship and suffering just for some help. There is constant doubt, skepticism, and gaslighting of patients symptoms and experiences. The CDC is particularly bad to Lyme and MECFS patients for no logical reason. Many doctors don't even know about POTS and think it's caused by anxiety for crying out loud. Despite all the amount of good research being done on these complex illnesses, they are hardly being applied. Serious change needs to happen.
Just get rid of neck brace step by step. I am.from China. Many people with cervical instability I know have recovered by exercise muscle.
That is the case for many! However with Ehlers Danlos syndrome our ligaments are faulty and even after having a fusion many (including myself) need to wear a neck brace at times to relieve severe symptoms. Physical therapy is always done first.
Yes definitely, thanks for sharing, Maura! :) Most people who wear braces are doing their best to come out of them, but it isn't always simple.
Physical therapy made my instability worse.. even though I walked through my CCI & AAI surgery with my therapist. I needed further fusion below my C0-C2! Trust me, I worked hard in PT and pt isn’t always the ticket... second fusion c4/5 c5/6
@@HealingWithRachael I still wear my neck brace.. 18 months after posterior fusion. I HAVE TO I seriously dislocate and sublux my cervical spine. I take muscle relaxers and sleep in my brace.. seems to help.
@@HealingWithRachael In June of 2020, I had neck brace for one month, then I felt worse and found my neck cannot support my head, because neck brace makes muscle weaker. In November of 2020, I found on.Internet that there is one doctor in China who treats cervical instability, and many of his patients recovered. Then I was.not.anxious anymore. I kept exercise since then. Now I have exercised about six months. I felt better. My doctor said most people recovers 80 to 90% in a year. Fully.recover need 3 to 5 years. I started to knew.a lot of people exercise with cervical instability. Their story really impressed me. One thing I want to mention is I used to.be.diagonised as c1 to c2 instable in small city in China. Then I went to see a famous doctor in Beijing who only diagnise and fix problem with c1 and c2 and for 30 years. He told me many people were diagnose wrongly as c1 to c2 instable. I did find some people i knew with cervical instable had the same experience. Normally our c1 to c2 cannot be instable except hour head is hit by a.strong force. I hope this will help you. Do not feel anxiety and depression. If you know many people recovery experience, you will feel better. Any questions, you can ask me.At last, u really admire Americans who can choose Prp and prolotherapy.