Part of the reason your Left cerebral venous drainage is dominant is because your right cerebral venous drainage via the IJV is non-existent which likely means there is very severe compression on the right side so very little blood is able to drain via the right IJV. I’ve annotated one of the images you posted that clearly shows that. Also, interestingly, I don’t see your left ECA (external carotid artery) which is likely there just not in the image you posted.
Since the financial aspect of getting a diagnosis & potentially vascular decompression surgery is significant for you, you’ll be interested to know that Dr. Aghayev will give you a thorough evaluation of CT imaging (with contrast) w/o a charge to you & w/ no expectation of doing your surgery. For that reason & because he’s quite experienced with the surgery, he would be a good doctor to have a consult with & to ask questions of once you get your CT imaging done.
Welcome! I’m still on my diagnostic & treatment journey but I have difficulty breathing as well. For me, it feels like my throat is constricting and I’m working really hard to pull air down. I also get laryngeal spasms that completely cut off air flow. Talking is one of my triggers too. I’ve also lost some of my vocal range and ability to project. I have IJV compression on my left side (looks like it’s due to my C1) and my symptoms tend to be more left-sided overall.
I want to recommend speech therapy as it really does help! My voice stays healthier for longer and I recover faster since starting speech therapy. Weirdly, migraine-targeted Botox helped too but it didn’t completely get rid of symptoms (I’ve only had it once, my next dose is due soon)
Because of your voice and breathing issues, I’d highly recommend seeing an ENT that is knowledgeable about speech & swallowing disorders (laryngology) in addition to the other doctor’s you’ve seen; ideally someone who is aware of ES and other conditions with overlapping symptoms, like spasmodic dysphonia. Of the neurologists I’ve seen, my movement disorder neuro and migraine neuro have been the most helpful (my general neuro really didn’t know what to do with me).
The dry throat is interesting; I wonder if it’s actually dry or more of a neurological sensation. If it’s actually dry, it makes me wonder about rheumatological conditions like Sjogren’s. I have dry mouth too but I’ve had that years before any of my other symptoms popped up so I think it’s a coincidence for me.
@Isaiah_40_31 Thank you for your helpful reply! I am not versed in this topic, as in the case of CCI/AAI. Sadly, it seems that in this condition the role of patients has to be very proactive as well!
Let’s see how I am able to manage the situation. In any case, I should get a CT imaging (with contrast) and perhaps other images as the one you already suggested me before checking with one of the specialists in this issue.
Although I see that decompression is not cheap at all, the financial aspect is not the most pressing thing right now; it is my health. This dimension could be problematic in the future if I lost my job or needed several surgeries. With a great effort and my lifetime savings, I am fortunate enough that I could pay privately for one surgery with one of these names, but it would be very difficult to deal with both a decompression and a fusion separately (the latter is considerably more expensive). I think I will try to get the images covered by my insurance or the public health system.
One of the key points could be the issue of instability, which seems quite unclear so far and where I also appreciated very much your nuanced comments. It is possible that people like Dr. Costantino and Dr. Hepworth, who collaborates with instability specialists could shed some light on it. The opinion of Dr. Aghayev could complement well their perspective.
Thank you very much for your message and the advice. Actually, one of the channels I have opened is a specialised ENT in a voice unit who works with a quite specialised speech therapist. Let’s see if she helps. At least, this doctor seems very willing to help and I want to see if I can rule out other conditions.
I also thought about Sjogren’s syndrome (not rate in EDS), as I also suffer from dry eyes…
What makes me suspicious about the compression (and the upper-cervical instability) is that the symptoms seem to have started after the car accident.
One of the most difficult things is that I do not know when I can just trust the doctors criteria without doing research on my own. It is exhausting.
I am not versed in this topic, as in the case of CCI/AAI. Sadly, it seems that in this condition the role of patients has to be very proactive as well!