I can’t thank you enough for your prayers and your kind words. This forum is filled with truly kind people. I plan to participate in the forum more, so I can be a light for others that are struggling. I’m preparing my full story and will share it soon.
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Do you know if gastroparesis and microvascular compression of the vagus nerve has ever been previously described in the literature or occurred in any other case?
Do you know if they plan to write a paper/case study on your case? If such a paper exists and it’s unpublished, do you think early access is possible?
In the literature MVD surgery for vagus nerve is only described for stuff like chronic cough and a disorder called HeLPS
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Hi Bowser: My initial Fiesta brain MRI showed compression of cranial nerves 5, 9, 10 (trigeminal, glossopharyngeal, and vagus nerves)–see attachment.
Before surgery it was stated to me the primary reason for MVD surgery was to address compression of the trigeminal nerve (cranial nerve #5) but they would also address other compressions if needed during surgery, depending how things looked (sometimes things can look different on MRI versus actual view during surgery). So, my surgery was not performed with primary focus of correcting vagus nerve compression.
During MVD surgery they found the trigeminal nerve compression and fixed it. Then Dr. McGregor unexpectedly found an “entanglement” of cranial nerves #9, 10 and 11 (glossopharyngeal, vagus, and accessory nerves), and all 4 roots of the vagus nerve were compressed. This was surgically repaired successfully and teflon padding was placed.
I unfortunately had significant post-op complications and other contributing factors, so a linear association of vagus nerve compression and gastroparesis would be difficult in my specific case. However, several of the GI physicians made reference to the association between gastroparesis and vagus nerve dysfunction (verbally to me).
Unfortunately, Ohio State has done NOTHING in terms of using my case for a case study, which is disappointing given they’re a huge research facility. But I can tell you, anecdotally, that fixing the vagus nerve compressions did help my gastroparesis. It wasn’t the only factor contributing, but the surgery did help.
I hope that helps. I’ve included brief screenshots from my Fiesta MRI and MVD surgical note.
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It’s so fascinating that even with all the scans & technology we have, it still seems as though often it’s very different when the surgeons go in! I’m glad that the gastroparesis has improved…
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Thank you for the detailed reply!
I would like to know more about your other symptoms: Did you have chronic fatigue/difficult concentrating, severe anxiety and/or photophobia - intolerance to bright lights?
The photophobia has been getting so much worse for me.
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Did you ever see Dr Old at OSU? His office called me for an appointment. I did have them specifically ask him if he did Vascular Eagle Surgery and knew about the internal jugular vein and carotid artery issue. They called me back and told me he did.
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No problem! I’m here to help! I did have chronic fatigue and severe anxiety, but did not have photophobia.
I hope you guys don’t mind that I’m posting applicable copies of my medical reports. It just helps with validity of info.
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I did not see Dr. Old at OSU. I saw Dr. DeSilva (ENT) at Ohio State, who ruled out Eagle’s Syndrome for me. He did diagnose me as having hyoid bone syndrome, but it’s not the primary reason for all the issues I had.
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Thank you, Jules! My surgeon appropriately cautioned me that things often look different once they’re inside. My trigeminal compression looked pretty much like they thought it would. But my compressions involving cranial nerves 9, 10 and 11 were much worse than they anticipated. Even though it was quite a journey, my MVD surgeons did an absolutely amazing job
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@1speechpick - I know you’ve mentioned who did your MVD surgeries but don’t remember. Was there anyone besides Dr. McGregor who helped with your surgeries & Dr. DeSilva who diagosed your HBS? It would be great to have their names so we can share them if we have other members who suspect they need MVD surgery. Also, I’ve forgotten if you had surgery for HBS or if it became a mute problem with all the other things you had going on. If you did have the greater horns of your hyoid shortened, who did that surgery?
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It was just Dr. McGregor who did my surgery along with a neurosurgical resident (Ohio State is a teaching hospital). I did not have surgery for HBS. I’m waiting to let things settle out for awhile before contemplating any next steps.
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No worries at all about posting medical reports, we’re really glad of your help & info 
(And very pleased that things have improved for you, you had us worried! 
)
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I added Dr. McGregor under Dr. DeSilva on our Doctors List in case other members need MVD surgery.
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For purposes of clarification, Dr. McGregor (Ohio State neurosurgeon) is now semi-retired. He no longer does MVD surgeries and shunt care. I’m not sure who is now specializing in MVD surgery at Ohio State. OSU lost a great one when Dr. McGregor retired. He was so gifted with MVD surgery and shunt care. And Dr. DeSilva is an ENT at Ohio State, who performs HBS surgery (I think you knew that part).
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Thanks for that info, I’ll take him off again then!
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Did you have any strategies to manage your anxiety? Medications etc. Did you ever have to resort to benzodiazepines? I’ve been struggling to sleep and taking small doses of Xanax and terrified of developing a dependence. The high acid wakes me up at night and I have flu like body aches and fatigue so intense it’s hard to describe.
@Bowser - I’m sorry your symptoms are so terrible!! Have you made any headway toward getting a referral for a FIESTA MRI to get a look at your Vegas nerve?
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My high anxiety was mostly caused by a medication toxicity situation (I was on a medication for 7 years that I was genetically unable to metabolize). Once that situation was identified and I was weaned off the medication, the anxiety disappeared. I did not resort to other meds to manage the anxiety but it was a rough 3 years, especially with all the other neuro things I had going on.
I’m sorry you’re struggling with such difficult symptoms. We are here to support you in any way we can!
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@KoolDude has found several contacts of the PICA with the vagus nerve, but he’s unsure of how symptomatic this could be. I wanted to consult with Dr. McGregor at OSU, but I couldn’t because of strong objection from my family who don’t understand how bad I feel. Dr. Kamran hasn’t been very communicative beyond saying I don’t have TN and that I should just wait for surgery recovery (but it’s been four months already) and he can’t do anything more for me.
Visibly, I don’t seem to in much pain, and yes even my facial pain is at a manageable level. But the combination of fatigue, anxiety and gastric problems have produced intense suffering that’s hard to describe or for anyone to understand. Any one of these problems would have been bad enough but the trifecta of problems is debilitating. It feels like my parasympathetic nervous system has stopped working.
Another thing that scares me is how fast my symptoms seem to be deteriorating. I remember how I felt two weeks ago and I feel nostalgic for how much better I felt then.
I can’t blame my family too much. They offer me a lot of help in terms of preparing meals and managing my gastric problems. In their opinion my fatigue is entirely due to lack of nutrition. There was a five day stretch in the middle where I was able to eat well, but on the fifth day I ate a little too much and the problems restarted. But my fatigue kept increasing even as my intake was good.
I displayed severe urgency in terms of trying to address my possible vagus nerve problem but every time they become incredibly angry that I am focusing on my “imaginary brain problem” instead of my real gut issue.
Another symptom, photophobia, has gotten worse. This symptom is a complete mystery. I am sure I don’t have any vascular problems anymore. But I find it difficult to look at computer screens and bright lights.
To top it all off, my mom is going through chemo for breast cancer. The chemo is brutal but she somehow has far more energy than I have. It sounds incredibly selfish but I have lost the kind of “unlimited” emotional support I once had because the family’s focus is on treating the real life threatening disease of my mom’s cancer instead of my “imaginary” problem.
Never in my wildest dreams could I have imagined that things could get so bad so quickly. In April, after right side surgery, I felt so normal and optimistic about life.
I had blood tests done and my urea levels were very low, indicating low protein intake.
I do seem to have acquired real gastritis and H. pylori infection because of taking too many NSAIDs, but the endoscopy only described the gastritis as “mild”. People online have described severe anxiety as a symptom of H. Pylori, but then they don’t describe fatigue. And my combination of these symptoms are debilitating. Still, my symptoms surely started after taking Meloxicam 15mg for six days, before which I was taking 400mg of Celebrex. I didn’t know how dangerous these drugs were.
If the waters weren’t muddied by these additional diagnoses, the picture would be a lot clearer and my family would support me a lot more too. In their opinion, my anxiety is entirely self inflicted, due to overthinking the possibility of another mystery diagnosis instead of the “very clear” explanation of H. Pylori. But then a symptom like photophobia they have no explanation for.