@Leah - Thank you for your update! Lots going on for you with some hard to diagnose symptoms. I’m glad you’ve made good progress in dealing w/ the occipital pain & hope if you decide to do ablation, it deletes the pain for years to come!
To be clear, these are current symptoms you have now that you believe may have been masked by gabapentin prior to your ES surgery?
This is all very good news! I think getting as functional as we can in the bodies we’ve been given is the best we can do. I like your mindset. I’m sorry you still have some intermittent IH issues & hope no more surgery is necessary to deal w/ that. Please let us know if the Diamox helps when you try it.
I had my post op appt. & suture removal today. All is going very well. My incision is still pretty swollen but not painful. My husband & I are on our way back to California, & I helped do some of the driving today which didn’t increase my symptoms.
One thing I’ve noticed is my First Bite Syndrome, which onset after my first ES surgery in 2014 & never fully went away, has re-awoken. It’s not terrible just more pronounced than it’s been for several years. The cross-over effect of nerves is so interesting since it’s on the opposite side to the surgery I just had. I’ll deal with it by staying super hydrated as that’s what’s helped most in the past. Tinnitus is very loud tonight but that’s not unexpected.
I’m so happy that your surgery went well @Isaiah_40_31!! I know you were in the best of hands with Dr. Hepworth! Now we wait to see how it heals. Meanwhile, i’m glad that you’re feeling well!
@Leah , I’m sorry that you’re still on a long journey with your health, but glad you have had a few positives on the way…I hope that the injections that are helping do last a good long time, interesting as some members have had these in the tonsil region for ES but not heard of them for the occipital nerve. I hope that the diamox helps too if you have that in the future, let us know how you get on
Wow, that’s great you could do some driving! Sorry that the first bite has flared again, hope the hydration helps like it has before…interesting it’s the other side though, as we’ve been told it’s due to inflamed parotid gland nerves following surgery! Unless maybe it’s because of the jaw being stretched during intubation? That could maybe flare FBS up on the opposite side if that’s susceptible?
Praising God for your surgery & continued prayers for good results
Thank you for your thoughts on my FBS, flare, @Jules. What you said makes lots of sense! At least I still only have it on one side - that’s something to be happy about!!
Hi @Isaiah_40_31 ! I’m so happy that everything is going well for you and that you are once again on the road to recovery. It sounds like Dr. Hepworth did a great job with your surgery. He seems to be one of those doctors who is invested in his patients receiving the best care possible. I will be praying that your recovery continues to go smoothly. Thank you so much for the updates. As you know, the ES journey can be such a long one for many of us and it is so helpful to get updates from everyone as they go through various things on their way to getting better. Looking forward to hearing about your improvements as you recover. I’ll continue holding you up in prayer!
In the future, keep a look out for those that use a different method for anesthesia such as the TIVA method. I have had it and another poster here used a different method than most for all his surgeries.
It might provide clues as to the cause. It won’t be “proof” but it might be something for others to think about in this whole process. I didn’t have any of the normal issues related to anesthesia that people get after surgery since another method was used notwithstanding the whole Eagle Syndrome mess that I am sure I had at the time
Thank you for your thoughtful message, @vap! Have you been able to make an appointment to see any of the VES surgeons on our list? With your busy life, I imagine it’s difficult to fit in appointments to places outside of your area. I hope you’re able to make forward progress soon & am praying your symptoms aren’t debilitating for you.
Dr. Hepworth is vested in seeing his patients to as full a recovery as possible. Now that he’s in his own private practice, he’s instituted periodic follow-up scans & appointments for his VES patients so he is aware of how they’re doing over time & not just dismissing them after surgery. I was very happy to find that out at my post op appt.
Dr. Hepworth’s anesthesiologist used profolol as the anesthetic. It worked well for me & didn’t leave me mentally “mushy” as I have been after some other surgeries. It’s really nice to have my brain feeling pretty sharp after this surgery!
I’ll look up the TIVA method as I’m not familiar with it.
Many of the nerve issues were before surgery and helped with Gabapentin and now helped with time/healing. Others like the weird nerve sensations in the legs, arms and torso, clumsy fingers, etc. were four months after and I noticed them when stopped taking the multi-vitamin with 25 mg of B6. The histamine (MCAS?) symptoms happened about 6 weeks after surgery.
It’s so good to hear that time has helped with healing. We can’t emphasize enough on here that the first few months post op are miserable for some of our members. I clearly recall it taking about 6 months after my first surgery before some of my more uncomfy symptoms really started disappearing. I think we don’t expect recovery so long after surgery but I had more disappear at 9 & 12 mos, too. My healing seemed to occur quarterly.
I am sorry for the things that have cropped up post op especially because no particular cause has been found. I hope the ablation, or whatever therapy you choose, is tremendously helpful in completely erasing your occipital pain & even other symptoms you’re still struggling with. Please let us know what you decide to do & update us as to how it’s working as time passes.
Isaiah, I knew I had missed your surgery date but didn’t realize just how far by. I am mostly off of social media (not that I was ever big into it to begin with), but specifically all the medical related ones, and just trying to move forward and do my day by day to the best that I can.
I am so sorry that I missed your date and all of these updates.
You come into my mind and thoughts so often. Thought to action can be so far apart though.
I am so happy to read that, at least up to 18 days ago, your surgery was not only successful but also so much easier for you to recover from. How are you now? How has recovery continued and how are your symptoms shifting? Of course it’s too soon for end results by a long shot, but if the recovery from the surgery itself continued to be very mild then you might be one of the lucky who are feeling the benefits at this early time? I hope with all that I am that your vein stays open and stays where Dr Hepworth moved it.
Thank you so much for your message, @akc. You’re also often on my mind, & I can totally relate to Thought to action can be so far apart though. I suffer from that problem severely.
I’m actually glad you’re staying away from the medical social media stuff. You need to be focusing on your healing and maintaining a positive mindset really helps that. Reading how others are suffering definitely makes it hard to stay positive.
I actually felt a bit guilty posting how easy my surgery seemed knowing that there are a number of our members who haven’t “skated through” recovery as I have. That said, the reason I had the surgery was a gamble to see if IJV decompression would relieve some of my tinnitus & hearing loss. So far, there’s been no change. I acknowledge that I still have swelling in my neck that could be impacting nerves, but realistically, I also know the problem is 9+ years old & the nerve irritation/damage may be acute enough the nerves won’t recover. I told Dr. Hepworth I’d give it 6 months to see if anything changes. Another strike against me is a surgery I had in 2019 to place a shunt in the endolymphatic duct in my inner left ear to try to stop progressive hearing loss has left me w/ a hole in my skull base that is causing hyperacusis in my “deaf” ear (crazy combo!). I may need that hole patched to help things along. That is a long shot, & I may elect to just leave things as they are. At least I know now that my brain has some better blood flow than it did.
I hope you’re having some improvement as time has passed, too.
Here are updated images of my incision. I’m posting both my incision at nearly 3 weeks after my initial left styloidectomy & then this recent one. I think they look somewhat similar.
I swelled differently this time. My submandibular gland was enlarged for several weeks & hard as a rock, but curiously, didn’t hurt then almost over night it reduced to normal size & consistency. The incision does look a bit less inflamed than first time around. I chuckle thinking that maybe my body remembered going through this before so knew how to respond better this time.
Oh feeling silly that I hadn’t seen this post earlier. So glad you had an easier post-op recovery from your latest surgery @Isaiah_40_31. It also looks like it’s healing very well. I look forward to hearing about your progress in the symptom department over the coming months. All the very best!
Do you know how much styloid remains now on your left side? Is it typical for 1cm to be retained? Or can the surgeon go lower than this?
Thank you for your message, @BraveKat. My operative report said my left styloid was removed at the skull base this time. Of course, my first report made that same claim when my left styloid was clearly not cut back to skull base. I think different doctors have different ideas for what cutting back to skull base means i.e. some truly cut the styloid as close to the skull base as possible, some leave 1 cm or more, & in some cases, even when skull base resection is promised, it can’t be done as close to the skull base as desired due to the internal anatomy near the skull base. Nerves that exit the skull through the skull base near the styloid can be at fault for that.
I’m heading over to read your post about how your surgery went & will comment there.
It’s been awhile since I updated this post. I’m approaching 3 months since my surgery. My hearing is still lost, but a recent hearing test showed that my hyperacusis has decreased & word comprehension has improved by 20% which takes me out of the category of needing a cochlear implant & into one where a standard hearing aid may be very helpful. HOORAY!! Other benefits I’ve noticed are the nerve pain in my neck, face, & left eye which were sneaking back are gone w/ the second resection of my left styloid. One interesting & unexpected benefit of this surgery is that I no longer bite the inside of my lower lip when I eat. This was a problem that had become chronic over the last couple of years, & my lip was really tired of its daily meeting w/ my teeth.
I’m having a little intermittent nerve pain at the curve of my mandible, but I expect that’s from a healing trigeminal nerve.
I’ve got to say I’m really thankful for what my surgery accomplished even though it hasn’t been monumental. I have a follow-up US in Feb. to check on my left IJV to see how it’s doing. Will report back after that.
My incision is still pretty swollen but not painful. My husband & I are on our way back to California, & I helped do some of the driving today which didn’t increase my symptoms. 
