I Was Just Down at UCLA

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1speech,
I am reading your case with interest as well as Dr. Chhetri. I was just down at UCLA (from Seattle) seeing a a vascular surgeon for TOS and it was somewhat of a bust and a huge disappointment. He took no time looking at my scans and said my EMG testing was “inconclusive” for TOS which I already knew. I had hoped at a minimum, I would get some diagnostics ordered such a a MR Neurogram or Fiesta MRI. All I got was an order for PT for pectorals minor syndrome. Aside from slowly loosing hand and arm function the past year, I also have had some sudden mild hearing loss and total loss of acoustic reflexes in my middle ear (they wonder if its facial nerve causing that). It’s all right sided. I cannot tell you how disappointed I was leaving that consultation. We all have felt that feeling after being dismissed by physicians.

I just sent a request to go back to the neurosurgery department where I was seen in the 90’s and early 2000’s for bracial plexus and compression as well as other nerve compression.
I have long standing neck instability (CCI) and TMJ (get botox in jaws and temples). I had both ES surgeries in 2020 which did include GN decompression as part of the surgeries. My positional vertigo is worsening and I am taking notice of this in certain neck positions - i almost felt a pre-syncope for the first time this week.I have no doubt I have some compression in one or more areas, just haven’t been able to find the right doctor to tease this all out. I am starting the suggested PT as well as vestibular PT this week. Im going to a oral facial consult in a week.

I don’t mean to highjack your thread. Just looking for some guidance from you and kooldude. Im starting to get to my witts end on this.

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@Snapple2020, I don’t know much about TOS, so maybe @KoolDude and some other folks can weigh in that are more knowledgable than myself. I just know that tracking down sources for the pain is certainly a journey. Sounds like Eagle’s has been taken care of. Is it possible you have other cranial nerve compressions? Have you had a fiesta MRI? That’s how they found my cranial nerve compressions. Have you been evaluated for hyoid bone syndrome? Have you had a neck CT? That’s how they found my elongated hyoid bone. I’m not saying you have any of these things. I’m just going on my experience that these are the steps I had to go through to track down my pain sources. Did you have vascular compression of the glossopharyngeal nerve shown on a scan prior to having it decompressed, or was it something that was found during styloid surgery?

I’m going to be out of commission for a bit, so I’m sure other knowledgable folks on this forum will weigh in some of their thoughts.

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Thanks 1 speech.
The ES surgeries performed by my surgeon (SAMJI) almost always include the GN nerve decompression and SAMJI generally does not evaluate for IJV or other compression. No venogram which is unfortunate and I think necessary. He includes these procedures on his operative reports. Almost like it comes with the territory. He requires no more than standard CT of neck and goes no further. Still having neck pain…more occipital. Ive had CT and MRI but not Fiesta…having a hard time finding doc to order it. Was hoping for that at UCLA. Good luck on your upcoming procedures.

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Would you PCP order it if you request it? If not, something to consider it consulting with a neurosurgeon that deals with facial pain and vascular compressions on the daily. I’ve found that even neurosurgeons specialize and some may not deal with facial pain as much as others. Dr. Lim is supposed to be a fabulous neurosurgeon in California that specializes in facial pain and vascular compression. Dr. Mark Linskay in California, too. A fiesta brain MRI is needed in most cases to see vascular compression of cranial nerves. Mine were NOT visible on a regular MRI with contrast. Dr. Chhetri is the expert in hyoid bone syndrome. If you’ve had a neck CT done (even without contrast) elongated hyoid bone can be seen. However, I think it would take a head/neck CT angiogram (or even a dynamic CT angio) to identify vascular compression of the carotid artery from the hyoid bone. Again, don’t quote me. @kooldude and others more knowledgable than me will weigh in.

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PCP I think is ready to retire and I had to twist his arm to get CT to diagnose the Eagles a couple years ago. Even then, he poo poo’d the eagles diagnosis and said it was TMJ. He was wrong. More recently he wouldn’t even order a simple GI test and Im not in an HMO. Ive been looking for a new PCP but difficult during COVID to shift. No doubt I need the additional imaging and need to get to right doc to get it ordered and evaluated. I think CT angio and Fiesta MRI at a minimum. Thanks what I hoped to get when I saw the vascular guy at UCLA. I should have known better to go to a neurosurgeon instead. I’ll get there…eventually. As you know, gotta keep knocking on the right doors to get to right doc. Thanks for those docs names. Ill check them out. Thanks for confirming what I kinda was thinking.

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What is Dr. Lim’s first name and affiliation? He out of Stanford? Michael?

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Yes. If you can make it to him, I’d do it. I’ve heard he’s very good. He can help rule out stuff. If you’ve had a neck CT, you could consider getting the images (either download or on a disk) and find the hyoid bone and get an idea of what it looks like…that’s what I did. The radiology neck CT report did not identify an elongated hyoid. The ent found it

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His credentials look pretty darn good! Ive had a bunch of CT’s and mRI’s the past couple years, I would have hoped Dr. Samji would have noticed an elongated hyoid prior to ES surgery in my CT scan but Ive come to learn he may not look outside his box.Doctors miss things all the time so thanks for the heads up. I have all my scans on disk. Sorry I didn’t mean to hijack your other thread. Thanks so much.

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But have you had a neck CT (not a cervical spine CT)? I would assume you have, since you had styloid surgery. Here is a picture that shows my hyoid bone touching the spinous process of the cervical spine. Again, this was not found by the radiologist but by the ENT looking at the images.

Screen Shot 2022-05-24 at 10.07.52 AM
Screen Shot 2022-05-24 at 10.07.52 AM756×1030 201 KB

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Wow. That is significant!

I do have a neck CT. Amazing how radiologists miss so much. This is why I always get my scans on disk and have specialist review them. They know what to look for. Radiologists are really more generalists. In 2015, I had CBCT at UW Oral health center as well as a TMJ specialist. After finally getting the CT scan that showed the Eagles in 12/ 2019, I had them re-review those scans and sent me screen shots. Clear as day you could see the calcifications in my neck and elongated styloids! Bottom line, is they don’t consider them to be findings to be concerned about. I had classic signs of Eagles. Unfortunately alot of docs out there dont believe in Eagles…even many ENT’s in CA whom have been having behind the scenes discussions about it.

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Snapple, I’m so sorry to hear about your terrible experience at UCLA. Even at the more highly regarded medical institutions, there are “good” doctors & “less good” doctors. It’s very unfortunate that you saw one who didn’t take the time or care enough to consider all the facts of your situation & press for further testing that could have provided more definitive results. I’m so glad the @1speechpick has experience to share w/ you that may get you to a doctor who will be more thorough & helpful.

I know your journey has been long & at times very frustrating because of your CCI & ED. I truly hope seeing Dr. Lim (or whomever you choose) will provide some significantly helpful info. L.A. was a long distance to travel for such a poor experience. Hoping your next travels are very positive! :hugs: :heart:

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Thanks Isaiah!
He was suggested by my favorite EDS hand surgeon so I thought he would have considerable knowledge of EDS /TOS and why I had high expectations. He didn’t appear to have much EDS knowledge or indicate he did. I did find out he was out all last week on a family emergency so maybe he was distracted? Either way, I wont be returning to him.
UCLA made the mistake of texting me a survey a couple hours after the visit. I didn’t mince words. :rofl:
Yes, his suggestions were helpful. Easier to fly into San Jose than LAX. LAX was a nightmare.

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When it comes to ruling out cranial nerve vascular compressions, a skilled neurosurgeon is your best bet in my humble opinion. I’ve had facial pain for a few years and had been regularly seeing 2 different neurologists during that time, and they both missed the diagnosis. I finally had a virtual appointment with Dr. Sheng-fu Larry Lo at Northwell Health in New York. And he diagnosed me in 5 mins. He said my case was “classic” for Glossopharyngeal Neuralgia. He referred me back to my geographical area where I saw a neurosurgeon, who ordered a fiesta MRI. Like @KoolDude mentioned, consider the possibilities of causes and then consult with physicians whom are familiar with those conditions. Unfortunately in this day and age, most physicians only work within their wheelhouse of speciality. There isn’t always that holistic big-picture approach like there should be.

Dr. Lim is definitely knowledgable about cranial nerve issues, if that’s an area you’re looking further into. Of note, he offers a virtual “meet and greet” initial appointment that is free. That’s something you could consider and there’s nothing to lose other than the time for the appointment. You can also do a standard office appointment. He is not able to “diagnose” or order scans during the meet and greet as he is not licensed to do so out of the state of California. However, when I did the meet and greet with him, I already had a diagnosis…and he agreed with the diagnosis when looking at the symptoms and imaging. He did recommend an MVD for me during the meet and greet.

If you are looking into hyoid bone syndrome, you could consider combing through your neck CT images to see what the hyoid looks like.

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deleted - duplicate post

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@Snapple2020, When you mention tooth extraction and it taking the pain months to calm down, the first thing it makes me think of…could there some form of nerve involvement? I don’t know much about EDS and it if could also have some effect on pain after a tooth extraction. I just had an emergency tooth extraction 2.5 weeks ago and it sent the neuralgia pain in complete overdrive. My dentist couldn’t understand why things were so painful for so long, and then we found the neuralgias.

I’m glad you’re digging further. I always believe there are reasons for our pain but it can be so hard to find the source. Glad you’re here on this site. There are great people here to support you on your journey.

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@Snapple2020 I really do sympathize with you and we are all too familiar with feeling of dismissal and total rejection by the folks who were supposed to care for us. We all went through it getting ES diagnose. I am NO more knowledgeable than the folks in here. I guess I am the loudest while others prefer to be quiet. The problem is most doctors do not spend much time in looking at individual cases and miss subtle things that could explain symptoms of the patients. Perhaps, they are too busy and do not have the time. We are not doctors but where we all help each other is to do little more research on an area where we think they are not looking into it in detail so that we can bring the much needed attention of the doctor to it so that he/she could focus on it and do the appropriate medical tests to either confirm or rule out as an issue. This I think is gap in the current overloaded medical system and is where the patient needs to do their bit to guide their physicians.

In your case, I really do not have a clue what could be causing mild hearing loss, loss of acoustic reflexes and loss hand & arm function. There could be many different etiologies (causes); Autoimmune diseases, Tumors ( Such as Acoustic Neuroma), Vascular compressions…etc. Even connective tissue disorder is linked to hearing loss. So one needs to rule out all of these as cause. Not sure if you have eliminated all of these, if not yet, you will certainly need contrast enhanced MRI and CT to rule all of these out.

BTW, you have a good reason to suspect the facial nerve as it runs through ear canal along with vestibulocochlear nerve and whatever is irritating/compressing can also potentially affect hearing and balance. Perhaps, an MRI to rule out any pathologies in cerebellopontine angle would be better. This will eliminate 7th and 8th cranial nerve pathologies. You said you had presyncope, was that an actual presyncope or vertigo? sometimes it is hard to distinguish between the two. I am not doctor, I am here to help you as much as I can. if you had some recent imaging such as MRI or CT, that will be definitely helpful.

Internet picture showing the close proximity of the facial nerve and vestibulocochlear nerve.
image

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LOL. Kooldude. I tend to be more loud than quiet too! I appreciate your perspective. I agree the overload on the medical system can impact care greatly. I think I have a combo of things. One neck, other, arm/shoulder/bracial plexus. Add EDS into the mix and aging, it’s quite a soup.

I am super lame at trying to take this conversation private to avoid highjacking this thread. Isaiah was able to separate it w/ 1speech, I hope she or Jules can do the same with this conversation with you.

Ive had all kinds of scans and evaluations by ENT in the spring. Went thru a battery of ear and vestibular testing which suggested facial nerve involvement. That is where the testing found the lack of acoustic reflexes. The only thing the ENT suggested we could do is another scan of the ear with contrast to see if the facial nerve has a lesion. Because I was being evaluated for TOS shortly, he left it alone for now. I will revisit that with him given the blow off of TOS surgeon.

MRI Acoustic w/wo (11/21) Cerebellopontine angle/internal auditory canals: no mass or abnormal enhancement; Cranial nerves VII/VIII: normal. The only thing that was noted on was borderline right sigmoid sinus ectasia vs small diverticulum. No sigmoid plate dehiscence. ENT dismissed that as not important.

I do have EDS-hypermobility and have a history of nerve compression. Had scar tissue removed on bracial plexus (L) in 2001. Struggled with neck issues for decades and did have a 2 whiplash accidents in my late teens. Ive had just about every treatment known to man for neck/jaw chronic neck pain, MRI’s and CT’s never show anything significant aside from Eagles.I did not realize how long I have been living with pain and some dizziness until reviewing old scan reports and consults.I also have low blood pressure which doesnt help and Ive just blown it off as that for years.

Ive has numerous hand/wrist surgeries for nerve compression. I did have rotator cuff surgery (total tear) back in 2012 on this side. I have wondered if my rotator cuff surgery is failing…not uncommon in EDS. I have not had an MRI or imaging on my shoulder. yet. I got referred for EMG testing by my hand surgeon for evaluation. Im losing my grip and dropping things. Not much reflexes. Hands/arm going numb and cold.

The bad vertigo was first triggered about a year ago (June) after an emergency tooth extraction (lower molar). I went thru excruciating pain in my jaw and ended up in the ER over that one. Did have small amount of assumed viral bumps come out below corner of my mouth. (Not shingles or HPV) NO one seems to know what was the cause of this extreme event other than it was a trauma to my jaw. TMJ doc said based on bruising, it may have been an aggressive extraction? Even though oral surgeon knew I had TMJ/EDS, I suspect he may have overextended my jaw. I continue to have nerve spasms above my top lip below nose.Took months for pain to calm down the jaw pain after extraction.

I then began riding in a school bus (NOV 2021) with kids as a job and it triggered major vertigo and I had to quit the job it got so bad. No doubt the bus riding (which was bouncy and jerky - not good for neck instability) triggered something included the sudden hearing loss and heightened tinnitus and noise sensitivity. That was an ER visit too. Initial thoughts were munieres or tympani tensis but ruled out. I feel like Im always on the edge of vertigo. Certain positions push it to that.

The past week felt more like almost almost blacking out. It was different than normal vertigo. (My daughter has POTS/EDS so I know the difference) I had my neck in an extreme position (to the right) and looking up at interior lights of car while in drivers seat. I turned my head to the left getting out of bed yesterday, and felt similar. Previously I felt the dizziness looking up primarily. I know this is worsened by neck position.

This is what imaging or reports I have in my possession (i didn’t plan to go back this far but I got curious and started writing it down to see if there is a pattern. Ive been complaining of pain in my ears and dizziness for 25 years! its just getting worse) Interesting to see different radiologists readings thru the years:

(7/99) MRI Neurography Face- Eval for trigeminal nerve pathology. Normal

(7/01) MRI Cervical Note: There is minimal left paracentral disc protrusion at C5-6 which extends over a broad base of approx 8mm and extends beyond the vertebral body margin by 1-2mm. Does not contact the cord or produce any significant central canal stenosis. Compared to 9/98 at C5-6 level, the disc appeared slightly asymmetrically prominent toward the left, whereas now a more discrete change is characterized as a broad based minimal protrusion.

(9/01) C-spine with flexion/extension: mild instability C3-4 and C4-6 within range of normal.

(4/2015) MRI Cervical w/wo and Soft Tissue Neck Note: C5-6 slight bulge in the annulus without canal or foraminal stenosis. C6-7 mild diffuse disk bulge.

(8/2018) MRI Cervical Spine Note: C5-C6 Small central protrusion w/ mild effacement of the ventral CSF space. Minima; bilateral unconvertible hypertrophy. C6-7 Small right perineurial cyst. Note is made of dominant left vertebral artery.

(12/19) CT Neck w/o (Eagles Diagnosis)
(8/20) CT Head (concussion- fainted?)
(6/21) MRI Brain W/O contrast
(6/21) CT ANGIO Head Neck w contrast
(10/21) CT ORBIT SELLA FOSSA IAC w/o contrast

(10/21) CT Cervical Spine w/o NOTE: Mild degenerative disk disease C5-6 and C6-7. Facet arthrosis most notably C2-3 on left.
(11/21) MRI Brain/IAC w/wo contrast

Sorry for the length. I went down a rabbit hole. I can try and post some imaging to you privately if you have any thoughts on this.

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Which side was the tooth extraction on and which side do you have possible facial nerve issues on?

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All on the right.

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In the absence of masses, lesions, and any other pathogenic processes in the brain by the MRIs makes me suspicious of transient/brief compression of vertebral arteries when you turn your head right by your cervical vertebras based on your medical history of EDS/hypermobility, the new onset of blackout (which can be a brief cut-off of blood-flow to the brain) coupled with long standing dizziness and vertigo. The reason I suspect about vertebral arteries is they supply blood to the back of the brain and generally cause vertigo and dizziness along with brief blackouts if the blood-flow is temporarily disrupted. They also originate from the subclavian arteries which might also need to be investigated for any irregularity since they are implicated in TOS which you also happen to be under investigation for. There is thing called cervical rib which sometimes causes compression/dissection of the subclavian arteries and can potentially cause cascading effect to the vertebral arteries all the way back to the brain. This also can cause the symptoms of both TOS, Blackouts, Vertigo and Dizziness.

While we will try to take a look at some of the recent MRI/CT scan to see if some subtle things were missed regarding the blood-flow to the back of the brain, I think you will need a dynamic CT Angiogram to look at the vertebral arteries and Subclavian arteries to rule out any brief disturbances of blood flow to the back of the brain when you turn your neck to the right or up. This is my hypothesis - It might even be that due to these brief blood-flow disturbances that your hearing and some of the other cranial nerves are affected since the internal auditory system vessels are supplied by the basilar artery which in turn is supplied by the 2 vertebral arteries. We can only know if dynamic angiogram is done to rule it out or confirm this hypothesis.

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