Just wondering if there is anyone out who had ES IJV surgery and got rid of these kinds of symptoms noted below? For those that had it with these kinds of symptoms and surgery, would you do it again if you had the choice? I am questioning whether I am thinking objectively about this or whether I am just being desperate…I need someone to tell me this can actually makes things better because this is a huge cost.
My symptoms from ES:
-75% compression right side/ 50% on left side per venogram from stylohoids
-Imbalance, especially on right foot
-Cannot raise right arm past shoulder height
-Shaking/bouncy vision when moving head
-Double vision when turning head to right, or tilting head right or looking down, or moving my lower jaw to the right side
-right eye goes blurry/clear in sort of intervals of like 5-10 s
-pressure/neck pain at base and T-spine of skull and head feels floppy
-constant high pitched tinnitus, both ears
-Head pressure and pressure behind eyes
-Right eye flickers and then involuntarily closes when I turn my head to the right, or move jaw to the right
-Always exhausted, can hardly wake up in morning
-Brain fog/dream state consciousness
As you’ve noticed if you’ve read posts on this forum, there are a huge variety of symptoms that people experience w/ ES & even more when IJV compression is added to the mix.
Because of the extent of your IJC compressions, you may need to have both styloids shortened & IJVs decompressed to get the best symptoms. The symptoms you’ve mentioned that will most likely reduce/resolve w/ your planned ES surgery & vascular decompression are
-Visual changes - shaking/bouncing, couble vision, blurry clear vision all w/ head turning to the right as that is likely compressing your IJV even more which is possibly enhancing your IH & thus your vision. These symptoms could also be related to facial nerve irritation.
-Tinnitus, head pressure & pressure behind your eyes can be IH or facial nerve causing that. Facial nerve is often irritated by elongated styloids. Involuntary eye flicker/closing is also likely related to facial nerve irritation.
-Exhaustion, brain fog/dream state consciousness is due to IH & should reduce after one IJV is opened & resolve once the other one is done.
Not being able to raise your right arm past shoulder height could be due to accessory nerve irritation, but also possible due to shoulder muslce/rotator cuff impingement. If you’re having numbness/tingling in your arm, it would be worthwhile getting checked for TOS (Thoracic Outlet Syndrome) which is also the result of IJV compression lower down in the neck.
We’ve had a number of members w/ symptoms like or similar to yours who’ve had good resolution or reduction of those symptoms once the IJV(s) are re-opened. The surgery does not provide a miraculous recovery. It can take a number of months for symptoms to slowly resolve including the vascular symptoms as the brain adjusts to a level of blood flow it hasn’t experienced perhaps in years. Nerves can take up to a year to heal but often nerve symptoms disappear w/in the first month-six months post op.
I hope others who’ve had the surgery you’re considering will also post their experiences.