I have been diagnosed with ES, jugular vein type. Occasionally (approximately once a week) I have trouble standing after I have gotten up in the morning. It feels like the muscles in my legs are stiff, and I have trouble moving them. After I sit down for a few minutes, it goes away. Is this a symptom of ES?
The styloids can compress nerves in the neck, but it’s where they exit the base of the skull, the nerves to the legs exit the spinal cord lower down, so wouldn’t be affected by the styloids. That said, members have found weird & wonderful symptoms which don’t seem to be based on any anatomy! Postural changes because of ES pain & stiff muscles can affect muscles lower down in the back though, so it could be related to that…
Thank you very much. Your answer is clear and comprehensible!
Hi, if you have VES causing high pressure inside your skull then this can cause pressure & pain inside your spinal column too (CSF fluid) & we have at base of our spines an area that is meant to handle spinal pressure variations. If pressure is too high overall then that base of spine area can be affected & this is obviously close to hip/leg areas. This may be a factor. But I am not a medic, just sharing what I have learnt from medic consults. D
members have found weird & wonderful symptoms which don’t seem to be based on any anatomy! Postural changes because of ES pain & stiff muscles can affect muscles lower down in the back though, so it could be related to that…
This is what I came to say! Autonomic issues due to vagus nerve irritation/compression could absolutely be a large contributing factor here, as well. I am personally looking forward to seeing just how much of my autonomic neuroapthy/dysautonomia is caused by the ES and how much of it is secondary to my vEDS, postop, in a few weeks.
@Deans - I experience similar issues + some other related ones. I have had to use a wheelchair for walking any sort of distance for just about a year, now. I do have peripheral neuropathy that is attacking my feet, legs, hands and arms pretty badly. However, I cannot help but wondering what of it is related to the vagus nerve damage ES has caused me and what might improve after surgery (slowly) as the nerve heals itself. The same goes for autonomic issues. My HR rests very low along with my BP - this was a sudden shift about 5 years ago from having pretty normal vital signs for a woman my age/size. Now, my body temp is also a full degree lower than average, my blood sugar regularly sits below average by quite a bit, and my GI system is WRECKED. I have gastroparesis and rely on enteral nutrition via a J tube + a central line for hydration. Now, I have dealt with GI issues since I was a small child, but they got exponentially worse and very suddenly so when I was 24/25 and kept worsening from there. It’s also intriguing to consider what of this was worsened by vagus nerve damage, which can quite literally cause GP - but so can my primary Dx, vEDS. I also have postural issues (tachycardia) but a general autonomic dysfunction Dx rather than POTS due to the large range of other autonomic issues. However, when I get up my HR will go from 40s to 140s or higher and sustain. I also have SVT with no electrical path/cause that could not be ablated, so at this point EP and cardio are convinced vagus nerve damage is what causes my SVT. Wild, right?
All this is to say you are not alone in these symptoms. Many with ES experience them. While they would not be anatomically caused by compressions of the IJVs (mine are compressed on both sides as well - pretty sure that’s what causes some of my other symptoms like feeling as though my head is full of water, horrible pain in my scalp and so on) - the symptoms you describe could definitely be attributed to vagus and other nerve damage. It’s all so complex.
Yes! That vagus nerve is quite the hero or villain in our bodies. A hero when it’s happy because of all the body functions it manages & a villain when it’s upset because of the havoc it can wreak! I hope for you both, @slekeille & @Deans, that once your styloids are removed & IJVs decompressed, you have very significant improvement of all those symptoms potentially caused by the vagus nerve (as well as other nerves that are currently unhappy).