Hi everyone! Providing another update, 20 days post-op, and feeling good. My throat is still healing and has some scarring still, but no pain meds, no limitations on eating, just healing away! My swallowing function is good, I no longer get the sensation that my soft palate is falling on to back of tongue, and generally very happy with the result specifically as it relates to my throat.
The skull base, spine and shoulder issues were not resolved by the styloid resection, so onward and upward on exploring what is causing those. Prior tests showed that I had bilateral internal jugular vein stenosis at the level of the foramen magnum, so if I need to continue to explore that I will. Prior surgeons suggested that ballooning my jugular vein may be necessary, but I did not continue to work with that group. Unfortunately, quality of life is still limited as a result - I am getting nauseous and have intense spinal pain that radiates to upper back, shoulders and upper arms after any kind of activity (sometimes it feels like my skin hurts). I have a follow up with my neurosurgeon tomorrow to see what we need to do about that. Breath is also still hitting a nerve in the throat that shoots pain to my right ear.
I was hopeful all issues would be resolved, so it goes without saying that I am disappointed. Generally, trying to stay positive and press ahead with the hopes that life will be normal again one day. For now, just happy that a bone isn’t poking through my throat anymore
Very glad that you have some improvements after the surgery, but a shame you still have a way to go…having had bilateral jugular vein compression- which I was lucky enough to have resolved by surgery- I feel so much better, so I would say that it’s worth looking into getting that dealt with if possible. I hope that your appt goes well tomorrow, & that your doctor has some suggestions.
I agree w/ what Jules said, if ES surgery didn’t take care of your jugular compression, but also feel the need to say that you’re still in early days of post op recovery. It can take up to a year or more for nerves to heal & can take many months for pinched vascular tissues to re-open to whatever extent they will. It is too early yet for you to decide that your surgery didn’t resolve all your issues though it is possible possible you’ll have some residual reminders of ES even some years later.
ES surgery is a “cure” for ES if enough of the styloid &/or calcified stylohyoid ligament are removed. HOWEVER, it is not an instant cure. Recovery takes time. I am 5.5 years out from my first ES surgery (I had it bilaterally so two surgeries were required) & am still noticing damaged nerves improving. It can be an agonizingly slow process. It took a full two months after my first surgery before I had notable improvement in pain & other symptoms I’d suffered & nine months for some of my damaged nerves to resume more normal, pain-free function. Additionally, recovery can be a 3 steps forward, 3 steps back proposition w/ great days being followed by terrible days. That said, over time, the good days begin to outweigh the bad & eventually will win “the battle”.
This is not meant to discourage you, but to let you know that you need to be patient & allow your body to take the time it needs to heal. You had a major surgery. Many nerves, muscles, vascular tissues, etc. were affected. Just take it easy (i.e. only do what your body is ok doing w/o over-doing) & watch your recovery unfold.
My vascular issues took at least 6 weeks, maybe more, to resolve post surgery. One day I noticed it was gone. I got so used to my head pounding every time I stood up that I barely noticed when it stopped.
