Since I started going to the chiropractor.. (I have stopped since Selma/my friend on Facebook told me that was a bad idea). My head feels really heavy. Like the past two days it has REALLY gotten heavy. He (the chiro) said.my odontoid was turned the wrong way the last time I was there, and kept popping it because it wasn't moving like it should have.. Basically he kept twisting my head repeatedly and finally said it was "better than before". Well since then I don't feel better than before. My head feels like it's a bowling ball and trying to move it makes it feel wobbly and shaky. Could he have messed something up?
I can hold my head up. It just feels like it weighs a lot. I've noticed when I walk my head hurts worse and feels like it has a lot of pressure. Also some tingling in the back of my head (low where my neck meets my head at). That and putting my chin to my chest and trying to pick it up and down makes my head shake.. kinda like something is grinding and causing friction. It doesn't hurt to move it up and down though. But holding my head up straight is a tiring process now, if relax so it doesn't feel like I'm "forcing" it to stay straight my head is tilted to the right. Idk my head just doesn't feel normal.
I have too experienced the 'my head feels too heavy for my neck' feeling.
Before I had my surgery it was intolerable, I literally felt like my head would just fall because it was so heavy (bowling ball reference is a perfect example). I am now almost 6 weeks post surgery and I feel better as far as the heaviness of my head (I joke with hubby that some of my big brain leaked out in surgery making head lighter) but my neck muscles post surgery are still weak and get tired easily. About halfway through my day I have to lay down and rest because my neck is tired and hurts..but I think that is just from surgery and I'm still healing.
I'm not sure whether u have had surgery or not, but I hope I was able to she's some light on it or at least let u know that ur my alone with a bowling ball head...lol
Also, I he heard from all of my drs (PCP, Neurologist, and Neurosurgeon) that chiropractors and Chiari are NO BUENO!!
Yeah my Neurosurgeon forgot to mention that little bit of information, in fact he was the one that told me to go.. No, I haven't had surgery yet. I'm seeing Dr. Oro in Colorado next month though. Hopefully I will get the proper info on what to avoid and know where I stand then.. because this NS here isn't the greatest obviously lol. I do have an appt Friday with another NS that a Facebook friend suggested. Going to try him before I go to Colorado (expensive)
It's so hard to get the right/correct information when the drs are uneducated or misinformed about Chiari. Unfortunately some of them won't admit it and won't educate them selves for their patients. I was fortunate that my NS specialized in Chiari!
It was funny you mentioned that Idk what it is really.. but I showed a friend I met on Facebook my MRI.. and she told me my odontoid was bent in toward my spine. (It was what the chiro was cracking or something). I didn't know it was anything bad.. my NS never mentioned it.. but I've decided he is a moron after this last week. I asked my PCP to test me for EDS, but she said you need a really good pathologist (I think) to read the test for that.. there's not one here. She also said she didn't think I'd have it and is not worried about it.. So I don't know what to do on that issue. My NS is trying to kill me and I can't even get my PCP to order a thoradic spine MRI (because I hurt there between my shoulder blades really badly a lot). But since I didn't have a syrinx in my cervical area she said my mid back is fine.
A good Chiari specialist and NL even a good rheumatoid Dr can do a diagnostic on u, yes, after that they may send u to a geneticist for more testing as there r several types of EDS and that is the only way to tell which ones u may have, but a clinical eval can determine if u have it.
I also did not think I had EDS, my one friend and DD thought I did and I said they were nuts...well they were right,,...
I have no idea if the Dr u r talking to has the information on chiari and related conditions or the experience with them to give u advice, u really need to get to a specialist.
As for ur friend on FB...they may be able to suggest, like we can here....but u still need the right Dr.
Ur PCP should not be doing all the MRI's the NS should....PCP can be limited as to what they can order even in the way of meds and the strength of the med bcuz of their status.....(no pain management)
Not sure what u mean by ur NS is trying to kill u????
I had the pain btwn the shoulder blades and no syrinx either, it can be chiari or EDS....as I have both it is hard for me to say which it is , but many with chiari do get this pain,
NO, u could have a syrinx in the thoracic, or lumbar spine, too many Drs only check the cervical spine as it is the weakest area for one to form after an injury, however the ones we get r not due to injury but to an obstruction of CSF flow.....and u will have others that say the flow will be obstructed in the cervical spine area, but that again depends on the length and width of the herniation,
We have had too many members here with a syrinx in the thoracic and lumbar spine for me to say ur Dr is right that she checked the cervical spine so the rest of ur back is fine.,..hogwash!
Yeah that was what I meant lol. He sends me to chiropractors and things that are dangerous for Chiari. My pcp orders my tests because my NS doesn't. He seems to think my 7mm herniation isn't big enough to cause me problems even though he pointed at my MRI last visit and was like "it's a little snug right here". But he changes his demeanor every visit (I don't think he even remembers me when I go in). Because one visit he was telling me how I had Chiari, the radiology report from another MRI said I didn't even though my first two said I did, and so he was like well good news is you don't have Chiari. So I was all confused and asked him if it could go away... he was like no, but nothing has said you have Chiari. So I handed him all my prior reports that said I did, and he was like oh.. let's go look at your MRI (I'm guessing he didn't even look at it and just took the radiology report before). That was when he was like oh well you do have Chiari.. report was wrong. Then he ordered a stand-up MRI. That report came back negative for Chiari too (even though I measured it myself and have a 7-9mm herniation depending on which slice it is) and he called me a few days after I had it, left a voicemail telling me "good news i don't have Chiari" again. I see him Tuesday whereas I imagine it will be the same thing over... I will go in for my appt and he will tell me I don't have it.. then look at my MRI and tell me I do, then order a new one.. heh. I've noticed my odontoid curves toward my brain stem since she pointed it out, and there is a white spot above it. Is the white spot normal?
White spots can indicate a few diff things on MRI's and it depends on the way the MRI was done, sometimes it can be called a lesion which can be the result of severe HA's...it can also be a pocket of CSF... and it can be an artifact, basically an abnormality with the MRI machine....so do not read too much into it.
Ur biggest problem is u do not have a chiari specialist....once u get one u will see a huge diff and it is worth the time and effort to travel to get to one.
Hello all. I've just found this forum and am so glad to see others that are so informed about this condition. I've had back problems since i was a young adult and continue to see my first Ortho Surgeon. About 2 years ago i went to him complaining about pain in my upper back, neck and shoulder/arm. He did MRI's and told me i had Syringomyelia. He literally told me nothing about it, except that he couldn't fix it surgically as it would paralyze me. Then he said to have another MRI in 5 years.
So i know very little about all of this, which frightens me.
I live in Vermont and wondered if anyone knows a specialist in the east coast? Thank you; i look forward to knowing you all.
I am glad u decided to join us....as I said there r many here that can share with u their experience with syringomyelia.
We do have a list that the members compiled of Drs they have been seen by and liked....u do have to research all Drs on the list and see a few to compare to find the right Dr for u as having the right Dr is key.
If u use a phone and have issues finding the list please let us know and I will post a link.
I am going to see Dr. Oro September 24 Selma :). I'm pretty excited. I gave up on that Neurosurgeon once you told me chiropractors were dangerous for Chiari and the (you don't want to know the word id love to put here) told me to go to one. I sent my stuff to Dr. Oro and his office called me the same day and told me he would see me. So yeah, I just have to try to save up the money to get there now. :( I love 23.5 Hrs away by car ;(
So happy to hear you stopped going to Chiro. I was blessed to have a good chiro who actually knew about Chairi and he wouldn't touch my neck. I have heard really good things about Dr. Oro. even read a book which had his name mentioned in it. The book was called Conquer Chairi if your interested in a good read. It is a very informative book. So happy for you that your heading to a good specialist. Best wishes.
Thanks Linda :). I will check that book out. I'm glad someone told me to stop going because I was scheduled to see him EVERYDAY for the next couple months then twice a week after that lol... no telling what I'd be like after that. Especially considering I feel worse now.
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