I am also wondering if the vertigo and dizziness is triggered by hand/arm movement specially when you try to drive a school bus which requires movement of both arms. Do you recall any incident where hand/arm movement caused these symptoms? Also in addition to the vertigo, tinnitus, hearing loss and blackout, did you also get blurry vision and loss of balance in those episodes?
I think you are right about the blood flow issue. Although the ENT dismissed the sigmoid sinus estasia/diverticulum, I read something along the way that TOS can compress arteries and cause backup in the sigmoid sinus area. Ive been watching when I get these spells the past few days and it seems it is when my head/neck is tilted far right ie: ear almost to shoulder and looking up. This is the position I was in, in the car and usual position when I get out of bed. I will talk to my OT more about this.
As it turns out, I have a video appt with my PCP today. I will work hard to get him to order the dynamic CT Angiogram. Heās been a bit of a putz about ordering things I request. AT a minimum Ill get a referral to the specialist he feels should order it. I might enlist my ENT to order as well. Iāll focus in on that.
As for vertigo triggered by riding the bus. I was not driving the bus. I was riding in it as an aide to disabled children. Very bouncy up and down, back and forth, leaning over to see out the front windows. The day I went home, I recall the bus was turning a sharp corner which triggered the event. The vertigo was so bad, I had to hold my head and wanted to drop to the floor. I didnāt want to scare the kids so I rode it out. I got a tremendous headache after the spell.
Definate loss of balance. As for burry vision, I tend to close my eyes when the vertigo occurs and hold my head to try and stop the spinning. I actually used to drive a bus (2017) but had to transfer out of that position due to arm/hand pain - it only took about 6 months to trigger the pain. This is when I discovered I had severe osteoarthritis in my elbow. I can thank my EDS for that! A few months ago, I went into my hand surgeon (knows EDS) to get a steroid shot for the elbow as I needed a tune up after a few years (COVID). When he was having problems getting reflexes he said no steroid shot. Get EMG testing. Thats what led me to the possible TOS diagnosis. Down the rabbit hole I go. 
1speech,
Interesting ur experience. How did you find/diagnose the neuralgias?
Im pretty certain there was nerve involvement after extraction (lower right molar). I also learned from TMJ doc that virusās can lay dormant in the nerves in the jaw? Something caused three blisters to break about 5 days after extraction. It was not shingles as they went away fast. I dont have a history of HPV but without having done testing on the blister, I will never know. I did also have a bone graft at time of extraction. I wondered if it was a reaction to the graft?
The tooth was highly aggravated at time of extraction. I had endured an attempted root canal and the endodontist could not get me numb (not uncommon with EDS)ā¦that in itself was a very traumatizing experience. It certainly put my nerve pain in hyperdrive like you describe. Took me 5 days to get into an oral surgeon. It was about 30 days of hell. I have a pretty high tolerance for pain, but this was over the top. I wished I could just be put in a coma it was so bad.
During this incident (after extraction) I could feel the nerves (?) on the lower and upper teeth throbbing. It was all right sided and the throbbing stopped at the front teeth (Trigmenial nerve brach?). The most pain was at the TMJ. I eventually got injections in jaw to try and knock it down, but it really wasnāt all that effective. I suspect the oral surgeon overstretched my jaw and the ligaments and nerves reacted. Im not sure Ill ever know what happened other than some sort of trauma occurred that caused a cascade of problems.
This is what vascular ES does - My brain confused riding with driving because I am after a syndrome called Subclavian Steal Syndrome - a condition where a narrowing of the subclavian artery near the origin of the vertebral artery causes blood-flow change from the brain to the upper arm. It is usually exasperated by arm/hand movements. This condition can cause both arm weakness due to hypo-perfusion caused by stenosis and vertigo, dizziness, hearing loss, tinnitus and loss of balance caused by blood stolen from the brain back to the arm via vertebral arteries. The only thing that does not make me very suspicious of it, is the dynamic nature of your symptoms which point to intermittent compression of some kind in these arteries. I do have strong suspicion of irregularities/irritation/compression/narrowing of either Vertebral Arteries or Subclavian Arteries. Subclavian artery irregularities/irritation/compression/narrowing will connect your hand/arm weakness with the posterior brain blood-flow disturbances. Now we need the evidence. If we canāt find it in the static CTs/MRIs, we will definitely need DYNAMIC CT Angiogram that includes the Subclavian/Vertebral Arteries to see what happens when you hyper-extend your neck or move your arm/hands. I am afraid this wonāt be found in EMG as muscle weakness/damage needs to be substantial in order to show a diagnostic EMG result. Even then, it does not tell you much regarding the cause of the muscle damage which can be many.
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Ive known for a long time there was an issue. I just didnt know what it was. Ive had regular right sided facial pain for 3 years that started after a neck surgery. Ive been passed from doctor to doctor. Through a very very long journey i ended up at a neurosurgeonās office. He did a fiesta mri of the brain and found arterial compression of cranial nerves 5, 9and 10.
I hope you find your answers for the pain
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Kool Dude,
IM working on getting the scans into the DICOM viewer, etc. Im having a bit of an issue. My daughter copied the scans off the disk onto a jump drive and Im having major problems because Im on a MACā¦I may have to work off her PC laptop. Ill take another stab at it in the am when my mind and patience is better. Its a NO GO from the PCP ordering the dynamic CT angio. Heās useless. He says its out of his wheelhouse and heās never ordered one of these in his career and heās up in years. He suggested going to a neurologist to order it. Iāll regroup and make some calls. I have a few ideas. I do have a list of EDS friendly providers and that may be a better avenue to get this CT ordered. Im a bit frustrated but Ill get there and get what I need.
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That is fine. You can share it whichever way that is easier. take your time.
That is weird given that you have EDS with neck instability. I have read a dozen of studies linking EDS with intermittent vertebral artery compression due to hyper-flexibility so I am surprised they wonāt investigate that given the dynamic nature of your symptoms. I guess when the neck is neutral position, it might be hard to catch it in static CT scan. Anyways, I will see what I can glean from the current CT Angio. I am hoping this includes the neck as well.
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HI Kool Dude,
Thanks for your patience on this. My son is going to hook up an external drive and get this uploading figured out. He is in finals this week at university so it may take a couple days. Sorry for delay.The folders my daughter put on a jump drive are so numerous, it is difficult to sit down and figure it out. Im usually pretty good at tech stuff but Im overwhelmed with appointments and some work deadlines. The ANGIO does include Head & neck.
I have stepped up the heat this am and requested my PCP send a referral over to an EDS friendly neurosurgeon in Seattle. Additionally, I sent to UCLA doc a request to give me an order for the dynamic CT and told him how disappointed I was no diagnostics done after flying all that way and sent some additional files. Weāll see how that request goes.LOL. Ive also put in a video consult request to one of the top neurosurgeons in the Neurology department (Has EDS and Chiari experience) at UCLA who basically saved my life back in 1998 after being bounced from doc to doc and told I was drug seeking. I should have probably gone to that department in the first place.
I requested access to portal from doc who did EMG testing and found old consults from 2018-2019 (Just prior to ES diagnosis in 12/19) from his associate (Spine pain center). This is why it is so important to have all your records after every visit.Duh, I should known better. Even back in 2018, there was concern about possible TOS and referral to right arm. I did not remember this as I donāt recall we spoke about it. It is in the records though. We even did diagnostic blocks back then which provided no relief but indicated pain in back of neck and upper trapezius. Several office visits indicate probable components of nTOS, cervical dystonia, probable occipital neuralgia, chronic cervicalgia w underlying hypermobility.
One way or another, I will get the CT done.
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It is good that you have stepped up the heat. These doctors need that additional push to get the imaging done. I am hopeful something will turn up specially when you try to recreate symptoms while imaging. Hopefully sooner than later.
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Hey Kool Dude,
My son was able to open up the scans on his PC however there are too many files on the disk to upload to online viewer. He said it would take 12 hours to upload and the online viewer is not made to upload that many files. Unless you have any other suggestions? I am now resorting to getting the scans on separate disks. AT least I know for the future to do this. I do recall they took sometime to burn the disks as well as copy them when I was at UCLA. I happen to be going into Seattle today will try and get the CT ANGIO on separate disk.
1speech,
We all know about these long journeys and passed from doc to doc. Im not sure what the difference is between MR Neurography and Fiesta MRIā¦I think they are similar. It seems like we go from journey to journey. 
It was a neurogram that finally found the nerve compression in 1998 on my sciatic nerve. I cried when they told me as I had been told I was drug seeking by a previous spinal surgeon. Gotta have the right tool for the right job. And of course the right doc.
Did your neck surgery cause the compression of your cranial nerves? ie: scat tissue?
@Snapple2020
Iām unsure what a MRI neurogram is; Iām not familiar with that. I had a recent brain MRI with/without contrast that didnāt show the compressions. They finally did a FIESTA brain MRI which gives a much clearer picture of the cranial nerves. That is when the compressions were found.
These symptoms cropped up right after my neck surgery, but weāll never really know what caused it.
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1speech,
I think the neurogram or MR Neurography (MRN) was developed before the Fiesta. Generally MRN is high resolution 3-T that is effective in reading peripheral nerves. Fiesta MRI is high resolution T-2.
āFIESTA-C/CISS is currently the sequence of choice for CSF-cisternography for visualizing cranial nerves at the skull base. When used in the 3D mode, it provides high signal from CSF based on T2/T1 contrast and high spatial resolution. Furthermore, like FIESTA/TrueFISP, it has inherent flow compensation because of its perfectly balanced gradients.ā
I think they are learning to develop software and resolution that targets specific things within the bodyā¦more nerves that I can see in these two types. Very hard to see in traditional imaging.
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Kool dude,
I have been out of commission for several days barely functional. The vestibular physical therapy I had Wednesday induced vertigo then triggered massive headache and then woke up with throbbing skull pain the next day, now shooting nerve pain in back of skull into ear/temple. I suspect my neck muscles were aggravated and went into lock down causing more pain and nerves to go haywire. ENT thinks it triggered vestibular migraine and he does agree I need evaluation by a neurologist ie: neck and TOS. Like my PCP, the specialized imaging I am requesting is out of his wheel house. He did try to accelerate the in-house neurosurgeon appt w/ EDS friendly doc however I missed their call Friday and playing telephone tag.
I was shockingly able to get a video consult later this week with head neurosurgeon at UCLA. He has agreed to review my case and refer me to appropriate provider. I regret not starting in that department in the first place. This doc does primarily Chiari and other head/neck tumor surgery but has good diagnostic skills and was able to refer me previously to the right neurosurgeon and/or diagnostic testing after a few years of going doc to doc. It is so frustrating I canāt get the proper imagingā¦its hard for me to sit upright at this point. I did order the disk and will get that uploaded as soon as I am able.
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@Snapple2020 I think you should stay away from vestibular physical therapy if it is the one where they put you on table and move/twist your head and neck. I think you are on the right path. I hope whatever test they do includes dynamic blood flow test on Subclavian and Vertebral arteries something makes me very suspicious of intermittent blood flow disturbances.
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Kool,
Yes, I cancelled future pt given the reactionā¦and that I can hardly function. The only reason I am on computer is I promised to do a funeral brochure for my aunts funeral and Im not sure how I will do this am. The longer I sit at computer, the more my head hurts. Luckily my daughter knows photoshop pretty well and I think I will hand this job over to her.
Yes, they did move my neck around and had these goggles on that measure nystagmus in eyes which I did have. I communicated to the Vestibular PT person I had cervical neck instability and EDS but I honestly think she did not grasp the severity of it. She let my head drop off back of table unsupported and I had to hurry and grab my head to stop the neck pain it caused. Medical professionals just donāt listen or think outside their box. They often think when you have such good range of motion, you are just fine and donāt use the caution they should. I almost puked a few times and it definitely induced vertigo which I guess can happen in attempt to move the crystals in the ear. It was somewhat torturous. This one is going on the back burner for awhile.
I have asked 3 docs now for the specific imaging and these arteries (even the vascular docāwho still has not posted his summary visit notes?). He did capitulate to changing RX for TOS PT to OT to accommodate that therapists credentials. I am so glad you have identified some of the specific imaging needed. Unfortunately, I think it ordered more in the lane of vascular / neurologist speciality. I am laser focused on getting this testing.
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Snapple,
Iām very sorry to read about your current situation. What youāre going through sounds a lot like what our Canadian members & many of our US members have experienced w/ doctors who are more like machines than caring human beings. As you said, if itās outside their wheelhouse (& even sometimes if itās in it), they donāt pay attention to the details or do enough investigation to find things that are more obscure that could be the source of the problem(s) a patient has & send them packing. Anyone w/ the number of symptoms & past diagnoses that you have should receive extra care & time from any doctor seen.
Itās a travesty that getting the scans you need to help weed out whatās going on has been so difficult. I guess I donāt understand why some tests/scans can only be ordered by specific specialists & not by general docs as having scan results would help a PCP refer a patient to the correct specialist rather than the patient needing to āshop aroundā.
Sending you a gentle hug 
& hoping & praying your skull pain passes quickly. Have you tried ice or heat?
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Thanks Isaiah,
Unfortunately, this particular round started with my EDS hand surgeon referring me TOS vascular surgeon at UCLA. The name was relayed to me by his receptionist and it is unclear how the name was acquired. Because I have so much trust in him, I proceeded assuming it was a good referral. For all I know, his assistant pulled the name off the internetā¦I will be having a discussion with him about this.
TOS Surgeon didnāt appear to even know my hand surgeon by name and when I asked him about what he knew about EDS, he just said āhe knew about itā but I didnāt get a confident or very clarifying answer. As you know, the guy was dismissive and then just gave me an RX for PT and sent me packing! I did feel a formal complaint about how I was treated.
I think the ENT now understands I likely have other compounding issues and agrees I need to see a neurosurgeon/neurologist. Because he doesnāt know much about TOS, and doesnāt work with the specialized scans for it, he doesnāt want to touch it with a 10ā pole.
I did contact EDS support group and received a spreadsheet of EDS āfriendlyā providers in the state. I did get an immediate referral to someone on the list from PCP. AT least he does what I ask in that regard. ENT is in-house at Swedish where Neurosurgeon is and has sent over a more urgent referral internally. Im the one driving the ship it seems as none of them seem capable of taking the bull by the horns.
I have been pretty unsatisfied with my PCP for sometime and donāt like the hospital medical group he is in. I always seek referrals outside that system on my own as his past referrals were not to my liking. He sent me my labs a few weeks ago saying they were ok when in fact one was way out of range which I brought to his attention. I learned along time ago, to request copies of my labs due to these kind of errors. Ive been trying to find a new PCP but with post-COVID world, so many have closed practices now. Being on medicare now has also complicated it. I think I need to look for a female PCP for the next provider.
I think general docs donāt always understand some of the more advanced testing/scans and complex conditions, they donāt even know how to interpret the results. My PCP also is board certified in internal medicine so you would think he had a better grasp on this.I think he is burnt out to be honest and doesnāt have a grasp on the nuances and needs of EDS patients.
Like many of us who finally get the Eagles diagnosis, it took a long and winding road to get there. Iāll get thereā¦eventually. When I can actually sit upright without being in pain. I have tried both heat and ice. As long as I am laying down and my head/neck supported properly I am ok.
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Such a long, tortuous journey for you. I hope the next docs you see dig in their heels & commit to help you find answers!
Finally Kool Dudeā¦took my kids a couple hours. They say the website is very slow. Not sure you have the same experience. I guess with over 1000 imagesā¦
https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20220619203414365.20535514327969100332
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