No sleep apnea. I do normally have very low blood pressure but at the last 2 dr appointments it was high or high for me 133/80 normally I am like 110/70. The rheumatologist is testing for different myositis’s. I have for the part 4-5 years been telling doctors that it feel like something is cut of or stuck, like a kink… hard to explain. The xray from my femur states sclerosis with medullary infarct
I even don’t know what to suggest… Those “kinking” sensations might be anything either real (like some deep muscle spasm) or so called referred sensation, coming from affected nerves (nerve root compression/irritation because of bulging/herniated disc in the spine etc), so perhaps it’s best to evaluate it from multiple angles.
But from my own personal experience, for example, I found that I had issues with very tight calf muscles on one side, causing other leg muscles to compensate and causing pain in the below highlighted spots because of misalignment. Fixing the calf muscles helped with some weird sensations (not that it solved it completely though (yet)).
It’s weird how everything in the body can be interconnected in the most unexpected ways.
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I am seeing a few doctors over the next 2 weeks and want to bring pictures of some of my 3-D scans. Which ones would you recommend that I bring of the ones that I posted?
I typically bring my laptop and show the things in real time, so that the dr could properly see whatever I find interesting. It helped at some times to convince them that there is a real problem. Esp.when they can rotate and slice the 3D model by themselves.
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That is a great idea! Thanks
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Good idea to take images. As many have found, (it seems) some doctors will not look at scans they didn’t order. Would assume they are trying to prevent liability issues (?). If you have an ipad or other that will show the images very clearly, that would be good … and/or get the best, clearest, largest image you can.
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Yes I think possibly liability issues. I tried showing images on my phone phone, but my oncologist would have no part in that today. I saw the rheumatologist, but she said she can’t read neck scans, which makes sense to me. I thought I would just try tomorrow is the neurologist so maybe she’ll take a look at it she’s a headache neurologist, but still maybe she’ll take a look. I also sent an email to the radiology department asking them to re-evaluate my CT scan but I haven’t heard anything back yet. Lol.
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Went to the headache neurologist today. She looked at my CT scan although she had no interested in viewing the 3-D portion of it. She said my vein/arteries looked good and maybe it was my grinding my teeth or migraine causing this. Sometimes I just feel nuts. I think I need to just keep trying to get someone to listen? I had UCI send me a CT scan I had done in October just to compare with my latest neck CT . I think my left styloid looks longer but doesn’t appear to be hitting anything. My right is just a calcified ligament but it is thick. I think maybe the IJV doesn’t look as compressed.
I’m not an expert in migraines or teeth clenching issues, but from what I know, among the other problems, these two can also be contributors to variety of symptoms.
Teeth clenching, bite misalignment - they may cause distortion in the whole body’s posture and proprioception:
As for migraines, my opinion might be a bit “against” the typical doctor’s, but I believe, any migraine is a result of something else in the first place. Blood flow issues is one of them.
In general it’s a pity that the neurologist brushed it off. For one, I can understand the whole situation. This surgery is always a risk, no matter what some people here on the forum or somewhere else may say.
It may help to go to an Eagle’s syndrome (and other similar/related conditions) specialist to get it properly ruled out. While looking at your scans, they might be able to find something less common, maybe even beyond anything we heard here on this forum.
Regarding the styloid processes, IJV compression… They do look a bit affected. Styloid processes do look hypertrophied too, so it’s a good idea to keep looking into this possible condition too, unless it can be completely ruled out somehow (e.g. by using lidocaine injections into the tonsillar area by someone with experience doing these injections etc.)
But I guess, you will need a lot of patience and determination… Often these conditions are a long journey until someone finally finds the culprit(s).
Another area worth checking is TMJ disorders.
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Very frustrating for you… 
Vascular doctor says everything is normal no distention and no compression and that a calcified ligament hitting a vein would cause pain. Tomorrow is Dr. Yian the ENT mentioned on this site so I am praying and hoping for some understanding. Keep swimming 
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@stephanie - From what I understand, veins don’t typically hurt when they’re compressed or contacted by calcified ligaments, but arteries do i.e. the internal carotid arteries can cause pain when the styloids/calcified s-h ligaments are bothering them but the internal jugular veins don’t under the same circumstances. I don’t think the vascular doctor gave you accurate information.
Please let us know what you learn from Dr. Yian tomorrow. I hope he’s very helpful. 
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@Isaiah_40_31 I agree with you. It gets frustrating and I feel a bit nuts, but I need to keep moving forward. I know my body. I so hope it goes well with Dr. Yian today😄
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Saw Dr Yian. He said he went over my CT scan with the radiologist and that my styloids were not elongated. I showed him images of the calcified ligament and asked him about it. He kind of ignored me and said that styloid is not elongated. I told him I would understood but what about the little ligament? He never really answered just said s surgery is a risky. He asked if I went to UCLA. I told him I tried but that I need a referral for the doctor that I want to see so he said they’ll work on that for me. He said, sometimes they’ll do injection with steroid or limit, but it’s not a long solution, but I told him anything will be helpful right now he doesn’t do those injections. He put his fingers in my mouth and felt I said something about both sides being uniform. I’m so completely baffled I guess I’ll just wait and see what happens with UCLA and maybe I should try to get in with Dr. Osborne but I read some horror stories about feeling practices there so makes me worried. I’m starting to feel a little panicky because I’m in so much pain and I feel like no one will help me😟
@stephanie - I’m really sorry for Dr. Yian giving you the runaround & not even acknowledging that the calcified ligaments could need removal. Very disappointing. I think it’s been a long time since he was recommended by someone on this forum so maybe we need to take him off our Doctors List. It does get updated from time to time as we get input from our members.
have to say that so far, I’ve heard only good about Dr. Osborne’s skill with ES surgery, but what I hear comes from the internet & from the very few members we’ve had who’ve had him do their surgeries. It seems the biggest problem w/ his practice is the lack of medical insurances that are accepted there so unless a patient has whatever coverage he does accept, or a PPO that will partially pay the surgical bill though he’s out of network, the cost for surgery with him is out of pocket. It would be worthwhile calling him since at least one of the ES doctors at UCLA is reportedly no longer doing ES surgery. That is Dr. Chhetri.
No doctor has a 100% success rate or patient approval rate even if surgery was done well. I do know that he WILL remove calcified ligaments even when the styloids are normal length & he is one of very few doctors who do that.
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Thank you. I am actually filling out forms for a consult with Dr. Osborne right now. 
Thank at least want his opinion. It was so weird Dr. Yian He wouldn’t even acknowledge that there was a calcified ligament there, even though it’s totally visible, so I don’t know how it can be otherwise. I just feel so gaslighted everywhere I go.
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So frustrating for you…I hope that Dr Osborne can help
@Isaiah_40_31 and @jules I had a video appointment with Dr. Osborne today. It was nice to get validation that I do indeed have a calcified ligament on the right side and the left side is also starting to calcify. I felt pretty hopeful about surgery until I got the quote it’s about $34,000 they want $19,000 upfront, and if my out of network insurance doesn’t cover the remainder and they want an additional 14,000 my max out-of-pocket for out of network is 10,000 so even though they’re out of network and they’re billing out of network they want more than the max out-of-pocket which is a big bummer but absolutely no way I could swing this. I will try a TMJ doctor and hopefully se the UCLA if for nothing but a steroid or lidocaine shot just to see if it provides relief. I wish someone around Orange County would provide those injections but it seem impossible to locate anyone. Guess it’s Lyrica and lidocaine patches and Motrin for a while
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I’m glad you were validated, @stephanie, but I’m really sorry for the large out of pocket Dr. O expects. I know doctors have a lot of overhead expenses, & liability/malpractice insurance isn’t cheap, but someone who charges more than most people can afford is making themselves available only to elite patients or those who are so desperate they’re willing to go into huge debt which will take them a lifetime to repay. It’s a sad situation.
There are several doctors at Cedars-Sinai in LA. Have you thought about contacting any of them?
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Thank you! That is a good idea I will reach out to them tomorrow. I also put a request for consult in at Keck USC.
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