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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I’m trying acupuncture now. It’s about the only thing I haven’t done.
Dr. Cha wants me to do a venogram and lumbar puncture. While I’m there she would do another dose of botox. I really feel the pressure more in my ear than the rest of my head. I kind of feel like the tension on my neck and jaw builds up to a point that if I pop it I get relief. Then it starts build back up. I still haven’t really had a doctor explain why the muscles are pulling me out of sync or what the root cause is. I’m kind of worried the ear pressure is different than the head pressure they are looking to treat.
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Do you have any current imaging you could upload on the forum for us to look at @stuuke? If you don’t want to put it on the public forum you could PM me or @TML to look at it & give you a lay opinion. We may not see anything that hasn’t already been noted, but sometimes we do find something obscure that could be causing a problem.
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I’d be happy to share it. I just need to get my disc back from my chiropractor. I actually sent a report from one of the forum members to Dr. Cha. She thought it was a report from Dr. Hepworth 
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Brilliant! 
Can you refresh my memory on how you upload to DICOM Library? I tried zipping the DICOM folder and uploading it but it says that it has too many studies when I upload. It looks like there are over 3000 individual files.
My son helped me upload mine because I’m so untechy. He used an external disc drive to upload my images onto my computer, & from there, I was able to drag & drop them into the dicom library upload. It took overnight for one set of images to fully load, but for some reason the next set went quickly. I recall I also had a lot of images, but I didn’t get a message there were too many. Is there any way you can separate your files & only load part at a time? Sorry if that’s a lame question. I’m really in the dark as to how all of this works.
If dicom library fails you, try radiantviewer.com (Pcs) or Bee Dicom Viewer App (Macs) which will convert your images to 3D. The only hassle for you is covering/deleting your personal info before posting anything on our forum.
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I just uploaded it to Google Drive and sent TML the link. I was able to view the images myself with Radiantviewer but have no idea what I’m doing or what I’m looking for After 12+ years you’d think I’d have an honorary degree in radiology.
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