I’m sorry your neck is still puffy, @Ddmarie! Tender is to be expected but I’d think the swelling would be significantly reduced or gone by now. That said, we do all heal at different rates so perhaps your body feels the need to keep that extra protection in place awhile longer.
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@blistle - Do you know what was abnormal about your ECG? Hopefully this was just a fluke.
Sometimes an ECG will come out wonky if you’re stressed at the time of the test as that can throw your heart rhythm out of wack just like it can create artificial high bp i.e. it’s only high for the moment but not normally. I hope your next one either comes out fine, or based on the results, they set you up for an echocardiogram to follow-up to better see what’s going on.
I hope the 4th is a go for you as well!
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Thx! I hope it helps if your surgeon says PT is a good idea for you 
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I think I actually had low blood pressure? Here are my numbers if you’re curious:
I’m wondering if this has something to do with the JV stenosis/hypoplasia situation. A low resting heart rate makes sense because I do regular cardio/weight training, but I have no idea about the rest of it. Did a quick google and searched this site and I didn’t find any info on it. Procedure has been rescheduled for the 18th now & waiting for my primary care doc to get back to me.
Honestly, your BP isn’t that low & lower BP can go along w/ high levels of fitness just as a lower heart rate does. Mine normally runs in the range of around 110/60s-low 70s. I did have a problem w/ my blood pressure bottoming out during exercise before my styloids were removed. Then my heart would race crazily to re-oxygenate my blood. It made me very dizzy, & I’d have to stop my workout for a couple of minutes until everything settled down. I chalked it up to vagus nerve issues as I don’t believe I had IJV compression, and that problem has stopped since my styloids were removed. I’m expect, IJV compression could add another dimension to your BP being on the lower side of normal though.
As far as the other readings, I’m sorry to say I don’t know what they mean.
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Are you set for the imaging today blistle? If so, I hope it goes okay 
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Thanks for the well wishes. I got rescheduled though, couldn’t get clearance in time. Whoops.
Thankfully my new procedure date is only a couple weeks out!!
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Hi, so I also get low blood pressure readings that I believe are due to JVs & trapped blood. I used to get high readings (over 120 too) but as recovered from styloid surgery that has lessened.
If you have swelling still I have found lymph drainage (Vodder.com) has helped me, try to find therapist with deep ossilation machine (Hivamat 200) but even mLD will help.
Good luck. D
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Also my last recent cardio review was all clear, which I felt supported my view it was not my heart causing the issues, but my head. D
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thanks, going to ask my doc about this!! my lymph nodes are inexplicably swollen & painful near the problem area so will definitely check it out. i’m glad to hear you’re doing better.
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Good to ask but in my experience (in UK) most medics don’t understand the benefits of lymph drainage work. I decided to try it & see & it’s been an excellent help for me. If it doesn’t help then it’s easy to stop. Germany seem to know more about this topic. D
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The Khan Academy you tube content (image above I hope?) is a simple & helpful resource for learning about lymph system, which is closely related to our blood circulation (but with no pump so fluid gets stuck). Hope helps. D
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WOW! Thank you so much for the great video links, @PatientD! I will watch all of them as the lymph system is definitely a mystery to me.
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Above image show glymphatic system flows/lymph nodes in head & neck. Other images show lymph flows in our body (complex) but major ports are in armpits, groin area where meets thighs and under clavicle bones (where lymph from entire body returns to blood circulation system). So we have a lot of fluid being moved around our body & coming back to ports just below our necks.
I think of it like a series of tanks that fill up with fluid & if my upper body chest & shoulder area are too full up then the fluid backs up in my brain & neck as it can’t escape, making me tired & giving me brain fog, pressure & pain.
I am not Vodder trained clearly (it’s a very tough training) but will try to post some of the tips etc they have given me soon. D
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More great information, @PatientD! Thank you so much!!
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Thanks for the info. Khan Academy is the best
Update on the imaging procedure:
I had venography/angiography & balloon occlusion on the 18th. Good news is I have okay blood flow despite the stenosis, which is apparently because of the collateral veins compensating. It also seems like the doctor really believes me now & is on my side in all this.
It wasn’t all good though. The procedure itself went super smoothly & all the docs and nurses were great. But a few hours or so after it was over, I had a bad reaction to the contrast or maybe one of the meds they gave me & had to return to the hospital after leaving. It started with a crazy headache, nausea/vomiting/general gastrointestinal distress, and progressed to temporary vision loss/aphasia/discoordination. When I got released from the hospital a second time and all the meds wore off, my face and entire body puffed up as if I was having a true allergic reaction.
It was probably probably the scariest medical thing I’ve ever gone through. I’m still getting residual migraines, still have vision problems, and the catheter sites are still all bruised up and it still hurts to move those areas/use those muscles. But I’m told this sometimes happens when contrast is used near the brain & I happen to have multiple risk factors in my medical history so it kinda makes sense. I’m also told it’s all temporary and will resolve in time.
So last night, I swallowed something and heard a louder-than-usual snap in my throat. It also felt more intense than a normal throat snap thing does. I think maybe something broke off, because I immediately felt less pressure on that part of my throat. This morning, this is is still the case & it feels like the pain on the other (left) side is more intense. It’s like now that the pain on the right side is lessened, my brain is processing the left side’s pain as worse?
WOW! Super scary reaction to the contrast/meds! I can imagine it was a nightmare for you.
An elongated styloid can occasionally break during a laugh, cough, sneeze, & now I’ll add, a swallow. We’ve had a few other members who’ve had a similar experience to you i.e. hearing the pop or snap then noting a reduction in pressure/pain. It does make sense that you’d be noticing your other side more now that the right side has had an adjustment. I’m sorry the left is flaring up though. Would have been nice for you to have a break!
I don’t know if you’ve seen the conversation between @PamelaInNYC & @KimberlyNYC - NYC surgeons? - #6 by KimberlyNYC, but if you aren’t settled w/ a surgeon yet, there may be one closer to you that you could check out. I’m unsure if the doctor they’re considering is familiar w/ VES though.
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I’ve only met with one surgeon so far who is familiar with VES: Dr. Peter Costantino (appears here sometimes as Constantino but correct spelling is Costantino). I had the ES diagnosis when I saw him, and based on my symptoms he suspected IJV compression and sent me for MRV. I now know I have bilateral IJV compression. I have a second consult with him next week and will know more then … happy to share. He does approx. 8-10 ES surgeries/year, external approach only. He also advocates for removing one styloid at a time.
Of note, everyone on his team (office and clinical) with whom I’ve had contact has been incredible so far.
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