More updates about my complicated case

Well, I have more updates. So here it is:

I just spent 35 mins in an appointment with Dr. Chhetri (based in California). In my humble opinion, Dr. Chhetri is the BEST hyoid bone specialist in the USA. He spent time looking at ALL of my scans (and there are a lot). He showed me the pictures and made sure I understood what was going on. He saw things that my local team missed!!!

As it turns out, @kooldude was right. My left greater cornu (of the hyoid bone) is traversing through the carotid bifurcation and is indenting the left external carotid artery. The right greater cornu touches the spinous process of the cervical spine and causes neck pain. Soooo, I will need hyoid bone surgery. Dr. Chhetri will remove 25% of the right greater cornu and 25% of the left greater cornu. He touted the surgery as a “piece of cake”. He also looked at the styloids on my scans and said they are very small and not a problem.

He also looked at my fiesta MRI. Dr. Chhetri said HBS would not cause pain in the soft palate radiating into the ear and shouldn’t cause the severe throat pain I’m having (it can cause mild-moderate throat pain). He recommended proceeding with the MVD first and then doing the hyoid bone surgery after I’ve recovered from the MVD surgery.

So, I have a journey ahead. But at least I have answers as to what is going on. I’m putting this all out here so others can benefit and hopefully get some answers too. If you think you have hyoid bone syndrome, go see Dr. Chhetri. He is so knowledgeable about the condition, is also able to incorporate that info into the bigger medical picture, and really cares about his patients.

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@1speechpick This is good and at least now you have covered all the bases. I was afraid that you might need another surgery in your left hyoid Cornu if in the future your left Cornu’s constant rubbing against the ECA becomes symptomatic. On a scale of 10, how bad is your GPN/Trigeminal neuralgia ? Is it tolerable with medication ? Based on @boogs99’s experience who has seen multiple doctors who all were concerned about the success rate of MVD, I am beginning to think if it is safer to do HBS surgery first and see how you feel afterwards. Any reason why he recommend to proceed with MVD prior to HBS surgery? I guess perhaps due to the severity of your neuralgia symptoms. I do not know much about MVD, but regarding the recovery time and the area of operation, HBS seems less risky and less invasive.

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Thank you for your reply @KoolDude. You’re right. At least now I know the reasons for my pain. The GPN/TN pain is an 8-10 when it’s cycling which is very very often. Unfortunately I’m not tolerating the medication due to side effects. Dr. Chhetri was able to help tease out symptoms of neuralgia versus HBS symptoms. I have both. Dr. Chhetri recommended MVD first, and says he does not operate when people have arterial loops on the affected side. I’ve found much of MVD success can be in the skill of the surgeon. In good hands, it has an 85% success rate. HBS surgery is less risky but unfortunately I need both surgeries. I’ve sought opinions from 5 top neuralgia neurosurgeons and 2 top HBS specialists. They all say the same thing. MVD first, HBS second. So at some point I have to put faith and trust in divine intervention and my doctors in order to try to get out of this pain.

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@1speechpick Well seems like we have consensus if 5 top neurosurgeons and 2 top HBS doctors agree to do the MVD first and your pain is on the severe side. We just hope that it addresses your health issues in the end. I am sure many people will benefit from your case as you seek help in complex health issues.

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@KoolDude, Dr. Chhetri was so good at helping to tease out which symptoms are from HBS vs. GPN/TN. He was pretty firm about HBS causing pain in the vicinity of the hyoid bone and upper chest but not in the retropharyngeal space, soft palate, tonsillar fossa, and ear areas. He said that area is innervated by the glossopharyngeal nerve. Another interesting note Dr. Chhetri made…he said mild compression of the external carotid artery doesn’t typically cause presyncope/syncope but more of a pain response in the carotid area. He said compression of the internal carotid area typically causes presyncope/syncope. Looking at the imaging he re-affirmed the styloids are not an issue, as well. I have great images of the elongated hyoid bone and GPN, but I’m not skilled enough to find the TN on my scans.

The thing that was the most helpful was his ability to look at the bigger picture to help determine what’s causing what.

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So pleased that you had a good consultation with Dr Chetri, and that you have a plan for going forward! Good too that Dr Chetri will do both sides given both could be causing issues as @KoolDude saw with the scans too. I’m sure all the info will be really helpful for others in the future so thank you for giving us updates!
Do you know how long the wait will be for the MVD surgery, & have you got a preference for which doctor you’ll see for it?
We’d be grateful if you keep in touch about how your surgeries go too :hugs:

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@1speechpick Dr Chhetri is the authority on this as he deals with this all the time and I agree with him that ICA compression causes more severe symptoms with presyncope/syncope as it supplies blood deep in the brain. ECA supplies blood to facial & neck area so the symptoms might be bit milder if the compression is mild as the doctor put it but also can cause a whole host of symptoms including presyncope if the compression was supposed to get severe.

I know you have asked about finding the TN nerve in Fiesta MRI in the previous posting so since we play armature/pseudo-radiologist and continue to learn. I wanted to show you how the trigeminal nerve look in Fiesta MRI sequences. I am pretty sure you can navigate to this level since you already have gained extensive understanding on how to read CT/MRI sequences.

Here is kool site (cranial nerves anatomy | MRI axial cranial nerves anatomy | free cross sectional anatomy |) that will make you an expert on reading cranial nerves in Fiesta MRI in short time. You can navigate it through the mouse and it has annotation to show you most of the cranial nerves in Fiesta MRI sequences.

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@Jules, thank you! The tricky part here is not finding someone who does MVD with Trigeminal Neuralgia, it’s finding someone who has successful MVD experience with Glossopharyngeal Neuralgia because it’s so rare. I interviewed Dr. McGregor at Ohio State, Dr. Forbes in Cincinnati, Dr. Amin Kassam in Chicago, Dr. Sekula in NY, Dr. Lim in Cali., and Dr. Horowitz in Florida. They all have experience with GPN which is imperative. Dr. Forbes cuts the glossopharyngeal nerve, so that is a no-go for me. Too many risks. Dr. Sekula would only fix the GPN but not the TN, so that is a no-go as well. I’m down to either Dr. Kassam or Dr. McGregor. Either would be great choices. Right now I’m scheduled for July 11th but hope to get it moved up to next week.

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Not too long to wait then! I’ll pray it goes well, fingers crossed you can get in earlier! :pray: :crossed_fingers:

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@KoolDude and @1speechpick, Just to clarify, the 40% I mentioned in the previous thread was specific to my symptoms and my imaging and that surgeons opinion. I was not suggesting that MVD only has a 40% success rate in general.
I’m glad things are lining up for you @1speechpick.

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@KoolDude Thank you! He didn’t say the compression was severe, and it is on my non-pain side. All the pain is on the right side at the moment. And has been for a long time.

Does this look like right sided TN?

@boogs99, No worries at all. And thanks for the clarification. Everyone’s case is completely different. You are very smart to not rush into an MVD. It’s a big decision. One that should not be taken lightly, and should be heavily researched prior to jumping in.

By the way, have you had any improvements after your surgery? I know it’s still early on.

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I think its a little too early to say for certain if the surgery helped.
( the trigeminal nerve is a little lower than the last image)

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Not this image. It looks like the pick I sent you above. Use this link (cranial nerves anatomy | MRI axial cranial nerves anatomy | free cross sectional anatomy |) to navigate. It will show where it is. As you navigate you will see where the TN is.

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@KoolDude @boogs99

Is this the Trigeminal Neuralgia on the right?

Yep, thats it. Can you show a couple more slices? I’m just curious to see the interaction between the vessel and nerve…

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@boogs99, I’ll try lol. Fair warning…amateur here! I included arrows in the pictures. It’s my assumption that the more vertical structure is the trigeminal nerve and the angled structure is the arterial loop, but I’m not completely sure. I don’t know why but I’m having more trouble picking out the trigeminal nerve. The Glossopharyngeal nerve was much easier for me to spot.

At any rate, here’s what I think could represent right Trigeminal Neuralgia…please correct me if I have the wrong structures. Thanks!!




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Thanks for sharing. The big fat one is the trigeminal.

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@1speechpick Good, you found the TN nerve. You also found what appears to be Anterior Inferior Cerebellar Artery (AICA) compressing it at root of the nerve where it exits. I could be wrong but I think another artery - Superior Cerebellar Artery (SCA) also appears to be compressing it at the top of TN nerve. Did the doctor mention only AICA compressing the TN nerve or he also indicated that SCA was involved?

Cyan arrow pointing to Superior Cerebellar Artery (SCA) compressing the TN (red arrow as you pointed it) and the small purple arrow pointing to Anterior Inferior Cerebellar Artery (AICA) compressing it at root of the TN nerve.

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He only mentioned the AICA loop compressing the TN. But I will certainly ask about the SCA, as once we are in there, we want to take care of all compressions!!! Thanks for the heads up.

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