She said we could do the shots as long as I want but recommended surgery just to fix the issue for good. She has a surgeon she works with there in Minneapolis. If I don’t see an improvement from this round of shots I’ll probably try one more at a stronger dose and see how it goes.
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@stuuke - You FINALLY have answers!! Unfortunately, Dr. Hepworth generally won’t do revisions of his surgeries, so if you decide that surgery is ultimately necessary to get optimal symptoms relief, seeing the surgeon Dr. Cha works with may be your best bet. (S)He may even be someone we could add to our Doctors List. Of course, there’s always Dr. Costantino & Dr. Nakaji, too. I’m sorry your left styloid wasn’t cut as short as you expected & is thus still contributing to your symptoms. I ended up in the same situation w/ another surgeon after 2 styloidectomies, my left side was significantly longer than the right - so much for “skull base” resection, however, there’s always the caveat that the surgeon will cut the styloid only as short as can be done safely w/o causing nerve injury. I think some surgeons are less risk adverse than others though.
It’s great to hear that Dr. Cha spent so much time with you, too! Sometimes that’s the advantage of end-of-day appointments.
I hope the injections are helpful in relieving your symptoms. Please let us know how you do w/ them & what your MCAS testing shows up. It would be interesting if you’re diagnosed w/ MCAS to see if your other autoimmune situation clears up w/ MCAS treatment.
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@stuuke I hope the shots work out for you. Dr. Nakaji does a lot of revision surgeries if you want to check him out.
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Just out of curiosity, why doesn’t Dr. Hepworth do revisions?
My best guess is that he feels he’s done what he safely could the first time around, but maybe I’m wrong. I based my comment on knowing of a couple of people who were still symptomatic post op & saw via follow-up CT scan that the surgery hadn’t completely accomplished the vascular decompression they’d hoped for so asked if he’d do a revision surgery, but he declined. It was necessary for them to go to someone else to get the revision. In at least one case, Dr. Costantino did the revision surgery. I don’t remember about the other one, but it could have been done by Dr. Nakaji.
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Two weeks and no noticeable difference after the neurotoxin injections. Dr. Cha said it would take 3 weeks to peak so still a little hopeful but I thought I’d feel something. This flare-up has been 3 straight months now.
I saw the cardiologist yesterday and he didn’t see any reason to have concerns about my heart rate. I had one extra beat in the three days I wore a monitor but he said unless I have symptoms like fatigue or lightheadedness that we didn’t need to worry about it. I told him I have fatigue and lightheadedness every day for the past 12 years 
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I’m sorry the neurotoxin hasn’t even given a hint of helping you, @stuuke! So frustrating. Maybe you’ll notice some positive changes over the next week, but I know what you mean by expecting some sort of sign of efficacy by now.
Sad story about your cardiologist! YIKES! What did he say when you let him know you do have fatigue & lightheadedness?
Oh no, that’s a shame for you…good that he wasn’t concerned about your heart…I guess that he ignored the comment about feeling lightheaded?! 
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I think he just felt it wasn’t an issue since I’ve been dealing with fatigue and lightheadedness before the heart rate issues. There wasn’t really anything glaring about my heart measurements other than one extra beat over three days. He said it was good that my heart rate could get up to higher rates while exercising.
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I know we’ve had lots of discussions about your health challenges over the last few years, @stuuke but I’m wondering if anyone has considered your vagus nerve as a contributor to your longer lasting symptoms. Some sure seem like they could be vagus related.
I’m glad you’re able to exercise w/o fear of having a heart problem though your other symptoms may make you feel less like doing so. Even a nice leisurely walk will raise your endorphins which can help a lot to induce a more positive sense of being. I think too many people feel like “it isn’t exercise” if it isn’t done “full throttle”, with lots of sweat, & a high heart rate over an extended period. That exercise ideal has been shown to be more detrimental than beneficial overall. I have to say I practice the full throttle approach for a number of years & have paid for it physically. 
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I definitely think the vagus nerve plays a part in my issues. It seems like it would be the cause of my digestive issues, trouble sleeping and autoimmune. I just don’t know how to resolve it or what doctors would look at Vagus issues. I would guess the contracting muscles irritate the nerve so hopefully if I can get them to relax the vagus nerve will calm down.
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That makes sense, @stuuke. Do you have access to a PT or massage therapist/myfascial massage therapist who may be able to help? Dry needling has also helped some of our members (including me) with tight muscles.
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