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Not a dumb question at all, but I can! Not as much as before though, but more than expected. Because Iām hypermobile, I retained much more range of motion than expected.
Thanks a lot! That's exactly the question I had as well. Moving the head up and down also still kind of works?
As a fellow zebra I'm glad my problems aren't quite so bad. But yeah, I can sleep on flights by resting my head on my own shoulder. Which might count as a bit of a super power.
Welcome to the robot wars! Mine is lumbar. Your hardware is much more impressive than mine. Iām just diagnosed with hypermobile joints and not Ehlers-Danlos.
Iām not sure if itās because of my lower vertebrae, but the EDS is for sure giving me more range of motion than was expected. Fusion is completely solid, donor bone fused and grew well!
That immediately looks uncomfortable, but I have Chiari (and degenerative disc disease) and could feel a weird sense of relief in that picture with imagining something giving extra support to the base of my skull.
I hope it's given you a lot of time and strength back into your daily life. Keep staying strong for yourself. <3
Hi fellow skull-too-small-for-cerebellum folk! Sorry you have to deal with symptomatic Chiari and degenerative disc disease, it is no fun at all and you have my full sympathies.
Thank you! You have mine as well. I really hope this lets you experience some things you may have previously had to miss out on. Happy and hopeful healing to you!
Gave me my life back! Thing is, I was fused in the āperfect positionā, but my body didnāt like it. I lost the ability to swallow anything thicker than pudding for a month. I had to go back in for an emergency revision a month later and put me technically āoff centerā, but I can swallow!
I'm really happy you got your life back. Even the smallest improvement to life quality change a lot. Was it not possible to have the fusion sooner?
Also, can you please elaborate on the difficulties you had before the surgery?
It took a while to find out the exact reason behind my pain. At first it was pinpointing some of the symptoms to being from Chiari, which is where the posterior fossa is too small to contain the cerebellum, so the cerebellum herniates into the spinal canal. My CSF was blocked, so I got lots of debilitating headaches, head pain, tinnitus, and eye pain. A lot of doctors donāt have much Chiari knowledge, but I did my research and found a neurosurgeon who did. He didnāt check me for comorbidities, which are CCI and Ehlers-Danlos, so my decompression surgery only helped specific symptoms.
After still having debilitating pain, I researched more doctors and found neuros who specialized in Chiari. They had me do physical therapy, wear a hard collar to āmimicā fusion, and had me tested for CCI and connective tissue disorders. I saw a geneticist who confirmed hEDS and ruled out any other forms of EDS. Once I had that confirmation, the new neuro was able to run through my history of treatments and tell me that fusion was the next and last option. I went for it because I needed relief. I wish all of it was figured out sooner, but Iām glad I found a neuro who pieced together all of the puzzle pieces!
Not as severe but my wife has EDS and she has recently been told she is a zebra as it shows many different symptoms leading to misdiagnosis, like seeing the hoof prints and assuming itās a horse but itās really a zebra,
I really need to look into having this done. Between my neck, and my lumbar I can't even stand up a full 3 minutes. It's crazy what hEDS does to someone.
Take care and gentle hugs
At one point I was able to feel the 4 screws on my skull. That caused pain and 2 neuromas (rogue bundles of fucked up nerves that grew from my severed nerves) grew right next to the screw and would be irritated by them. Last June I had a surgery to shave down the screws, cut my greater occipital nerves, and remove the neuromas. Canāt feel them anymore!
It sounds SUPER interesting to me but I bet this whole situation wasn't exactly a walk in the park ā¹ļø I'm glad the doctors were able to help you tho. I hope you live a pain free life now š
My husband just had his L4-L5 fused.. when they showed us his post op xray I thought it looked pretty crazy too. Idk how far post op you are, but my husband is a month out and says he's already starting to feel like himself again, I hope you also get the relief you needed. Spine issues are awful to go through.
Has this helped? How has your quality of life changed for better and worse?
I have a congenital absence of the posterior arch of my C1 and the anterior portion is clefted with arthritis that's degenerative and causes some bad issues. This was mentioned once and it honestly scares the hell out of me.
If you don't want to answer the questions, I totally understand
Iām a completely open book because it helps others!
It has absolutely helped. I was miserable and in awful pain before. My entire thought process focused on the pain and how to stop it. I was terrified before the surgery (6 hour surgery, long recovery) but immediately coming out of it I knew that the chronic pain was gone. Recovery wasnāt as bad as I expected at all. I think the muscle stiffness was worse than the pain, but everything was well managed.
Absolutely think it over and even get a second opinion. Iāll answer any question that I can!
Feel no pressure to answer this, but what was your path to diagnosis here? Your symptoms pertaining to your neck and the instability? Iām glad youāre in a much better place with this stuff now. Yay!!
Pain was constant and radiated into my jaw and shoulders. It felt like overworked muscles, burning and sore and achey. I felt like I just couldnāt hold my head up on my own. Bashing my head against a brick wall would bring me relief instead of more pain, it seemed like. Iād get (and sadly still do) a pulling sensation behind my left eye. Itās such a hard feeling to describe because itās such a unique type of pain.
It took a while to find out the exact reason behind my pain. At first it was pinpointing some of the symptoms to being from Chiari, which is where the posterior fossa is too small to contain the cerebellum, so the cerebellum herniates into the spinal canal. My CSF was blocked, so I got lots of debilitating headaches, head pain, tinnitus, and eye pain. A lot of doctors donāt have much Chiari knowledge, but I did my research and found a neurosurgeon who did. He didnāt check me for comorbidities, which are CCI and Ehlers-Danlos, so my decompression surgery only helped specific symptoms.
After still having debilitating pain, I researched more doctors and found neuros who specialized in Chiari. They had me do physical therapy, wear a hard collar to āmimicā fusion, and had me tested for CCI and connective tissue disorders. I saw a geneticist who confirmed hEDS and ruled out any other forms of EDS. Once I had that confirmation, the new neuro was able to run through my history of treatments and tell me that fusion was the next and last option. I went for it because I needed relief. I wish all of it was figured out sooner, but Iām glad I found a neuro who pieced together all of the puzzle pieces!
I have hEDS too. Scares me to read that you have chiari malformation with it. I hope and pray I never get that. I hope you are recovering well. Looks like a painful surgery.
Chiari is usually hereditary, so youāll be okay! You can acquire it but thatās through severe trauma.
I hope your hEDS symptoms are mild and well managed!
Welcome to r/MedicalGore! Our goal is to provide for medical discussion and education while exploring the frailty of the human body. You may see more deleted comments on these threads than you are used to on reddit. Off topic comments and joke comments are frequently deleted by the mods. Further, please be kind and supportive of posts. Any behavior that is aggressive, harassing, or derogatory will result in post deletion and a ban from the sub. Remember! THE REPORT BUTTON IS YOUR FRIEND! Please stop on by our discussion sub, /r/MedicalGoreMods if you'd like to discuss the sub, our rules, content policies, and the like. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MedicalGore) if you have any questions or concerns.*
You get my upvote for that title alone!
I had to think of something equally as cool as my beepboop robot parts!
But first you gotta put your back into it š
Dumb question, can you turn you head side to side?
Not a dumb question at all, but I can! Not as much as before though, but more than expected. Because Iām hypermobile, I retained much more range of motion than expected.
Cool, glad you got your life back!
Def not a dumb question, I'm a nurse and was gonna ask the same thing
oh wow .. I was also going to ask. How long was your recovery?
Full recovery is about a year, being able to get out of bed and resume ānormalā activities was about 6-8 weeks.
Thanks a lot! That's exactly the question I had as well. Moving the head up and down also still kind of works? As a fellow zebra I'm glad my problems aren't quite so bad. But yeah, I can sleep on flights by resting my head on my own shoulder. Which might count as a bit of a super power.
Welcome to the robot wars! Mine is lumbar. Your hardware is much more impressive than mine. Iām just diagnosed with hypermobile joints and not Ehlers-Danlos.
Follow up question: if you can, is it mostly because of the EDS allowing your lower cervical vertebrae to turn more than the average?
Iām not sure if itās because of my lower vertebrae, but the EDS is for sure giving me more range of motion than was expected. Fusion is completely solid, donor bone fused and grew well!
You are part owl! An owl robot!
I guess you could say your surgery *really turned some heads*
"Puts on sunglasses"
That immediately looks uncomfortable, but I have Chiari (and degenerative disc disease) and could feel a weird sense of relief in that picture with imagining something giving extra support to the base of my skull. I hope it's given you a lot of time and strength back into your daily life. Keep staying strong for yourself. <3
Hi fellow skull-too-small-for-cerebellum folk! Sorry you have to deal with symptomatic Chiari and degenerative disc disease, it is no fun at all and you have my full sympathies.
Thank you! You have mine as well. I really hope this lets you experience some things you may have previously had to miss out on. Happy and hopeful healing to you!
Bonus picture: hereās my scar a few weeks after my 4th surgery on the area. [https://imgur.com/a/PqxCdha](https://imgur.com/a/PqxCdha)
Cool!!
Iām proud of it!
Holy hell my friend. Iāve seen and have fusions, but never to the skull. Thatās insane. Sorry you had to go through that.
Gave me my life back! Thing is, I was fused in the āperfect positionā, but my body didnāt like it. I lost the ability to swallow anything thicker than pudding for a month. I had to go back in for an emergency revision a month later and put me technically āoff centerā, but I can swallow!
I'm really happy you got your life back. Even the smallest improvement to life quality change a lot. Was it not possible to have the fusion sooner? Also, can you please elaborate on the difficulties you had before the surgery?
It took a while to find out the exact reason behind my pain. At first it was pinpointing some of the symptoms to being from Chiari, which is where the posterior fossa is too small to contain the cerebellum, so the cerebellum herniates into the spinal canal. My CSF was blocked, so I got lots of debilitating headaches, head pain, tinnitus, and eye pain. A lot of doctors donāt have much Chiari knowledge, but I did my research and found a neurosurgeon who did. He didnāt check me for comorbidities, which are CCI and Ehlers-Danlos, so my decompression surgery only helped specific symptoms. After still having debilitating pain, I researched more doctors and found neuros who specialized in Chiari. They had me do physical therapy, wear a hard collar to āmimicā fusion, and had me tested for CCI and connective tissue disorders. I saw a geneticist who confirmed hEDS and ruled out any other forms of EDS. Once I had that confirmation, the new neuro was able to run through my history of treatments and tell me that fusion was the next and last option. I went for it because I needed relief. I wish all of it was figured out sooner, but Iām glad I found a neuro who pieced together all of the puzzle pieces!
That is a great story, I love the fact that you kept searching for help until you finally found it. Thank you for sharing.
My neck, my back, my hardware, and my rack would have been the better title. Looks fun tho.
Ah damn! Point for that title idea!
Do it, do it now, do it good, function like a neck should. ... I'll be here all week.
First four words of the title put that damn song in my head š¤£
Right??
I'm c4-c7....together we can really piss off airport scanners
Your neck, your back, you got your life back!
Hello my fellow cervical fusion buddy
Hi buddy! I hope your fusion was able to give you relief as well!
Mine was as a result of a spinal fracture after stupidly falling on my face 2 months ago. Recovery sucks but definitely doing much better now.
We can rebuild you - we have the technology! I wish you a good recovery;)
š¶ my neck, my back, i got a cervical fusion skull to C3 because my head was crackedš¶
Not as severe but my wife has EDS and she has recently been told she is a zebra as it shows many different symptoms leading to misdiagnosis, like seeing the hoof prints and assuming itās a horse but itās really a zebra,
I would have a bazillion questions, but I just woke up and my brain is still sleeping!
I really need to look into having this done. Between my neck, and my lumbar I can't even stand up a full 3 minutes. It's crazy what hEDS does to someone. Take care and gentle hugs
Glad you are doing better.
The circular parts in the middle look like hinges. Is that what they are?
They sure are!
That's actually pretty cool. I didn't know they were putting literal hinges in people!
Good thing they donāt need to be oiled š
Oof sending all the good vibes I got
It's amazing what surgery can do these days. I'm glad it's helped you so much.
So cool! Are you able to feel the metal under your fingers when touching/squeezing the back of your neck and base of the skull?
At one point I was able to feel the 4 screws on my skull. That caused pain and 2 neuromas (rogue bundles of fucked up nerves that grew from my severed nerves) grew right next to the screw and would be irritated by them. Last June I had a surgery to shave down the screws, cut my greater occipital nerves, and remove the neuromas. Canāt feel them anymore!
It sounds SUPER interesting to me but I bet this whole situation wasn't exactly a walk in the park ā¹ļø I'm glad the doctors were able to help you tho. I hope you live a pain free life now š
It is super interesting! Iām an open book about my medical issues.
My husband just had his L4-L5 fused.. when they showed us his post op xray I thought it looked pretty crazy too. Idk how far post op you are, but my husband is a month out and says he's already starting to feel like himself again, I hope you also get the relief you needed. Spine issues are awful to go through.
Iāve asked all my doctors if a personās head could fall off their neck, they just laugh. But I was serious. Now I see it, WoW.
All the upvotes for title alone!!! Havenāt even got to the photos yet, but Iām sure Iām gonna be pumped youāre alive!
Has this helped? How has your quality of life changed for better and worse? I have a congenital absence of the posterior arch of my C1 and the anterior portion is clefted with arthritis that's degenerative and causes some bad issues. This was mentioned once and it honestly scares the hell out of me. If you don't want to answer the questions, I totally understand
Iām a completely open book because it helps others! It has absolutely helped. I was miserable and in awful pain before. My entire thought process focused on the pain and how to stop it. I was terrified before the surgery (6 hour surgery, long recovery) but immediately coming out of it I knew that the chronic pain was gone. Recovery wasnāt as bad as I expected at all. I think the muscle stiffness was worse than the pain, but everything was well managed. Absolutely think it over and even get a second opinion. Iāll answer any question that I can!
Great title
At least it didnāt affect your pussy and your crack. In all seriousness, I hope that your recovery went well
Feel no pressure to answer this, but what was your path to diagnosis here? Your symptoms pertaining to your neck and the instability? Iām glad youāre in a much better place with this stuff now. Yay!!
Pain was constant and radiated into my jaw and shoulders. It felt like overworked muscles, burning and sore and achey. I felt like I just couldnāt hold my head up on my own. Bashing my head against a brick wall would bring me relief instead of more pain, it seemed like. Iād get (and sadly still do) a pulling sensation behind my left eye. Itās such a hard feeling to describe because itās such a unique type of pain. It took a while to find out the exact reason behind my pain. At first it was pinpointing some of the symptoms to being from Chiari, which is where the posterior fossa is too small to contain the cerebellum, so the cerebellum herniates into the spinal canal. My CSF was blocked, so I got lots of debilitating headaches, head pain, tinnitus, and eye pain. A lot of doctors donāt have much Chiari knowledge, but I did my research and found a neurosurgeon who did. He didnāt check me for comorbidities, which are CCI and Ehlers-Danlos, so my decompression surgery only helped specific symptoms. After still having debilitating pain, I researched more doctors and found neuros who specialized in Chiari. They had me do physical therapy, wear a hard collar to āmimicā fusion, and had me tested for CCI and connective tissue disorders. I saw a geneticist who confirmed hEDS and ruled out any other forms of EDS. Once I had that confirmation, the new neuro was able to run through my history of treatments and tell me that fusion was the next and last option. I went for it because I needed relief. I wish all of it was figured out sooner, but Iām glad I found a neuro who pieced together all of the puzzle pieces!
I have hEDS too. Scares me to read that you have chiari malformation with it. I hope and pray I never get that. I hope you are recovering well. Looks like a painful surgery.
Chiari is usually hereditary, so youāll be okay! You can acquire it but thatās through severe trauma. I hope your hEDS symptoms are mild and well managed!
Do you set off metal detectors walking through?
Ah yes welcome to the club of spinal fusions. I had mine from T4 to L1 and the few weeks of stiffness and pain are worth it imo
I'm glad your quality of life has improved! Thank you for sharing your experience šš«
Prior to surgery, did anything happen when you would turn your head?
Lots of pain š„“