Thanks @KoolDude@vdm@Jules
Appreciate your help. I will try those things mentioned.
I just also wanted to get your opinion…
I have a dentist appointment tomorrow. The pressure in my head has led to me grinding my teeth over the past year, so I need some work done.
Is it safe to have dental treatment (just fillings) whilst going through this?? Im scared to make my symptoms worse but I also need dental care, mostly on the teeth at the front - the back teeth are fine. So it shouldn’t disrupt any of the nerves at the back of my mouth.
I had one of my molars redone on the side of the longer elongation. It was difficult to open the mouth widely or keep it open for long times, so before the work started I told the dentist about the situation down to all the details, got the panoramic xray, and said we would need to do it very slowly and carefully. It did the trick, though the dentist admitted it was like working through the peephole.
Ah, also I said absolutely no to any gadgets held between the teeth to keep the mouth open during the procedure.
@vdm thank you! Just had the appointment. I explained everything to him. Had to keep my jaw open for some time. Hopefully it doesn’t cause me a massive flare up.
Pretty sure my numbness will last all day. But I’ll take that over pain.
Apologies Doglover, I missed this altogether. Seems I may have killed my link/notifications. My bad.
A consultant who listens??? Ohh, now don’t I wish, that would be my utopia.
I have had the ‘joy’ of 6 neurosurgeries and with each it has been me who has identified an issue, not the Dr’s. In fact I had been discredited by the medical fraternity for 20yrs, made out to be every type of crazy because ‘You just can’t be having pain like THAT…’ So I’m driving down the road one day and the lights went out, I couldn’t see. I pulled up called my girlfriend to come and get me, went to the dr had a scan and the Dr comes out with the line ‘Ohh look what we found…’ as if it was all new. The medical rollercoaster has been ongoing ever since.
Every dr seems to have another view, their own opinions, so trying to find some sort of consensus… …near on impossible. So, ‘Do you have a consultant who seems to be listening…’ Nope, I have learnt I need to be my own self advocate.
I was told by my surgeon recently I likely did/do have POTS from the jugular compression of scar tissue and my styloid. He asked if my dizziness upon standing improved since surgery and it has. He also said he feels POts is a bs diagnosis because it’s typically caused by something, it’s not just a spontaneous thing. He also suspects I have Ehlers Danlos and a lot of people with ES do seem to have that as well. Definitely seems to be a connection.
As for the venogram, I had a venogram/angiogram in 2020. It is unpleasant but pretty much painless. I was awake but they gave give me drugs that helped me relax. The catheter is navigated up into the veins/ arteries in your head and then the dye is injected. You can’t feel the catheter moving through your body or anything, but the dye injection felt warm/hot on my face depending which side they were on. The pressure testing was most uncomfortable as I could kind of feel something in my head. Didn’t feel the insertion of the catheter into my groin or my wrist, cuz they numb those areas, and I had minimal bruising. No stitches or anything, it is basically like an IV insertion. Worst part for me was having to lie flat for a few hours afterward so as not to bust open the femoral artery. If the radiologist uses a plug into the little hole in your artery it cuts the time down.
I have been reading this thread going back and have found some great information and has be re-evaluating some of my still existing symptoms. Im still struggling to understand the whole IJV compression thing.This was never evaluated before my ES surgery as my surgeon assumes when he removes styloids and calcifications that any existing compressions will release. I am questioning this approach and still wonder if there is scar tissue in there he never addressed or even looks for during surgery.
Based on a variety of what appeared to have been unrelated symptoms (ear, vestibular, hearing, loss of arm/hand function), Im heading to a vascular surgeon to be evaluated for TOS surgery. My various specialists have all been scratching their heads for over a year trying to figure out the cause of ear problems and vertigo which seems to be triggered by a “traumatic” tooth extraction. Thankfully my hand surgeon who specializes in EDS suspected enough to get me on the right track and order some EMG testing. Alot of my MRI’s and CT’s are normal except for one small minor finding my ENT blew off. Recent ear testing has found some abnormal findings. My deep dive research along with all my varied testing indicates it quite possible I have some jugular compression in my bracial plexus area. I had TOS surgery on my left side 20 years ago because I had compression from scar tissue. Not uncommon with EDS patients. Im reading all your guys/gals past posts with much interest especially about vascular compression and it is very helpful.
Ive only recently been hearing rumblings about the cause of POTS blossom ie: jugular compression. Ive seen the POTS data show increasingly (60%) more people with POTS have EDS. There is no doubt a connection. Alot of EDS patients have TMJ. There appears to be alot of ES patients with TMJ and/or IJV compression. There isn’t enough research being done to connect the dots yet. As we all have discovered, alot of ENT’s poo poo ES surgery and consider elongated styloids as benign.
I study this POTS and EDS data very closely given my daughter (age 27) is disabled from POTS/EDS. She started passing out at age 7 and it took her down at age 13. It came on slowly and worsened over a period of 6 years. The vast majority worsen in girls at puberty so hormones play a role. I have flown her all over the country to POTS specialists including 10 day inpatient study at an autonomic center. I suspect the EDS (genetics - ligament laxity) and possible viral trigger contribute to the worsening of POTS. Something triggers the nervous system to go out of kilter and the cascade expands from there. I suspect at age 7, she would have been too young to have developed scar tissue or jugular compression to trigger vagus nerve issues. She did have a recent CBCT and you got me curious now to take a look at her styloids.
They are seeing alot of long haul COVID patients being diagnosed with POTS. It’s pretty clear in those cases, it is triggered by a virus. What predisposes them to it, is the question and likely genetic and our immune systems. Sorry for my lengthy babbling.
@Snapple2020 There is good chance that a combination of both (jugular vein compression) and a little know variant of TOS called Craniovascular Hypertension Thoracic Outlet Syndrome (TOS CVH) which causes increased hypertension in the brain might also have role in your situation. You need to investigate this since you suffer from TOS. This TOS CVH can also cause POTS as well. Also vagus nerve compression or irritation can cause the vestibular symptoms such as vertigo/tinnitus along with POTS. This is explained well in MSK Neurology site posted here (New paper associating vascular ES with IIH 2)
According to this article, 70% of folks with Jugular Vein Stenosis (Narrowing) have also have TOS (see the quote below)
Ding et al. 2019 found that 70% of patient with cervical spondylosis had some degree of uni- or bilateral jugular vein stenosis. Ahn et al. 2014, interestingly, found that up to 70% of patients with thoracic outlet syndrome also had internal jugular vein stenosis! In my clinical experience, there is a very high prevalence of TOS in ICH patients.
Thanks so much for the info KoolDude for all this wonderful info! I will read it with much interest.
I have found a few items on the MSK website before but will take a more in-depth look my desk top computer. I found something recently that states:
“Tinnitus in patients with TOS and/or costoclavicular compression is a result of compression of the inferior bicuspid valve of the internal jugular vein. This results in turbulence of the venous return, like pouring water in a glass. The blood backs up into the sigmoid sinus adjacent to the tympanic membrane in the ear that the patient interprets as a low pitch sound or ringing in the ear - described as swooshing sound in the ear. The sound may be triggered by just placing a tourniquet, blood pressure cuff or hands around the upper arm obstructing the venous return that triggers the complaints in TOS patients.”
I have had all kinds of MRI’s and CT’s of my neck and brain and essentially it all normal except for “borderline right sigmoid ectasia/small diverticulum”. No findings to suggest sigmoid plate dehiscence." My ENT blew this finding off as nothing to worry about however that was before the recent hearing/ear testing and TOS diagnosis. I have just found out I have a total loss of acoustic reflexes on my right ear and mild hearing loss there as well. My hand surgeon sent me for EMG testing because I didn’t have reflexes on my right arm. Those findings do suggest TOS and physiatrist recommends botox of the scalenes. Im already getting regular botox in my jaw and temples so my neurologist is adding the scalenes in a few weeks from now. He said it would be helpful for the vascular surgeon to know if it gives me any relief. I do have an appt with a vascular surgeon who specializes in TOS the end of May so no stone will go unturned on this one. I have felt for many years that at times depending on my postural position like someone was squeezing something and I had pressure backup in my head.
@Snapple2020 I know you will be thorough but please demand that the vascular surgeon do a Dynamic Angiogram/Venogram to investigate if any major veins such as the Jugular/BC Veins are collapsing when you move your head/neck in addition to the investigation of the TOS. I have read somewhere rare cases where Styloid was removed but intermittent Jugular Vein compression remained due to muscles of the neck compressing it when it is turned or moved up and down…etc.
It’s helpful to have the visual aids and easily understandable explanations. It sure makes the case to have CT venograms and/or angio’s prior to Eagles surgery. I also see the value of having the DMX (digital motion x-rays). Im not sure why some ES surgeons are not requiring venograms to have that information prior to surgery. I never considered this prior to my ES surgery and wish I had educated myself more about this.
I have no doubt my C1-C2 is the bain of my existence and regularly rotates out. CCI and EDS joint laxity go had in hand. I get what this doc is saying in regards to steps of invasiveness and it does make sense generally. PICL treatment is very expensive and not covered by insurance and there is a reason for that. PICL is just another name for an umbrella of treatments re: PRP (Plasma rich), Stem cell and/or prolo injections to stabilize ligament laxity. I wouldn’t exactly call PICL treatment non-invasive given a bone marrow aspiration is required. I wish there was more data to support its effectiveness. I personally found no benefits of doing prolo-therapy and evaluated PRP.
This was a great video! Thanks for sharing it Nolan
Good advice Kool dude.
I am going to UCLA vascular & nuerosurgery centers for evaluation. This is where they did my 1st TOS surgery in 1999 as well as a few other nerve compression surgeries. They did surgery on a close friend with Chiari and it was a narly surgery and they are an impressive group (or were back then). These groups usually have some cutting edge diagnostics available. Im going to be hanging down there for a week in hopes of taking advantage of the testing available. I will definitely be speaking to them about this angio/veno as you have suggested. I am hopeful that I will get the full evaluation needed.
Wishing you all the best @Snapple2020 . Due to your hypermobility (EDS), chances are they might discover something that the numerous MRIs/CTs could not ( I am assuming here they were all static, not dynamic).
Correct, I have never had a dynamic test for anything. Looking back, it should have been something I should have had years ago. So hard to find docs that have a really grasp on EDS hypermobility.
WOW, Nolan! This looks like a great video. I don’t have time to watch the whole thing now, but I suspect it will provide some very interesting & educational information for our members w/ CCI.
I’m so grateful for the way our members help each other on this forum - in every way - with helpful info, via research, videos, & personal experience, AND ESPECIALLY w/ the mental, emotional compassion/encouragment & advice for dealing w/ the physical aspects of ES.
THANK YOU for posting these 2 YouTubes. Dr. Michael Arata is my hero. I improved a lot after his venoplasty treatment in my bodywide veins. Alas, he could not get his catheter up through my jugulars because of the bony Styloid to C1 compression. That was in 2015. (This video might be 2013?). For me, stenting was never mentioned. It seemed I was almost left hanging, because he warned that styloidectomy was not a benign procedure. He did, however, suggest Atlas Orthogony and a few more conservative approaches. I did them but didn’t have much relief.
Fast forward to 2023. I got Stanford to do a CTV. Its Radiology report found exactly as Dr. Arata did, jugular compression by styloid and C1. What to do? Stanford said no one there could help me. I persisted (have Stanford connections and felt empowered to press on). A neurologist there at last mentioned that if I were in Philadelphia sometime I might want to consult Dr. Cognetti. (Mind you, disability for 18 years? YES I might want to consult.)
I shall continue in replies to some more of the comments here.
It’s really a shame that the FDA did this. Angiograms and balloon angioplasties on arteries are done absolutely routinely. I don’t know the specifics of the particular interventional radiology instruments that this seems to be about, but in general veins are far more flexible than arteries and would tolerate these ballooning procedures with greater safety than arteries, my family practice doctor advised. I’m so grateful that he OK’d my getting this procedure.
