Words of Widsom from Dr. Samji

As I prepare to visit to Dr. Samji in about a week and a half, I emailed him about one of my biggest complaints and/or issues that I continue to suffer with.......Eustashian Tube Dysfunction!

Essentially, I asked him if there could be a link between my 55 mm styloids and the ear issues that I constantly deal with.

Again, I feel somewhat deflated with his answer :o( Everything points towards these "tusks" causing the majority of my issues, but his answer was not what I was hoping for.

I guess I will see when I get down there what he thinks and if surgery will cure me of what I have been going through. (See below for his comments)

Any thoughts / suggestions on what he had to say???? Should I be discouraged or just see how it plays out??? I just want a diagnosis as to why I continue to feel this way........ugh.

"Unfortunately there is no linkage between the styloids and eustachian tube dysfunction that I am aware of. However, I do think that the glossopharyngeal nerve is involved and that nerve does have branches to the nerve. It is theoretically possible, but there is no concrete evidence. As for imaging, CT is the gold standard. While some people undergo angiograms for vascular compression, I do not feel this is informative. "

Thanks for sharing!

Don't be discouraged. Every Dr. I talked to has their own opinions on what symptoms are and are not associated with elongated styloids. Please share if the surgery helps with the eustachian tube dysfunction.

I think he was about as encouraging as he can be. It is theoretcally possible,but no concrete evidence. The glossopharyngeal has many branches. It sounds like he is being as honest as he can be. He certainly did not say you are wrong, but there are so many of us with different symptoms, and our nerves are still an elusive part of our bodies. Our nerves are still a long way from being understood.

All we can do is roll the dice, do we have surgery or not. If we do we try to find the best doctor possible. Best wishes to you whatever you choose.

Hi. Before I had surgery and talked with Dr Samji, I had similar questions. But the feeling that my ears were full was really nerve pain. All the ENTs that I went to always said my eardrum was fine. My Eustachian tubes were always clear, because I could plug my nose and blow gently and my eardrums would “pop”. Dr. Samji told me that my vertigo could be related to the Jacobsen nerve. Because there is this alien bone in there, I just thought the irritation/inflammation could affect many different structures in that area. Dr Samji also said my styloid was huge. It was 47 mm. Yours are much larger. No wonder you are having ear issues. Good luck.

Wow.....thanks Polly for that insightful sidebar to what we have went through. You really nailed it!

As a get ready to see Dr. Samji in 5 days for my consult visit, I am still trying to gather as much info. as possible.

I met with my current ENT physician (who knows zero about E.S.) yesterday in Seattle. He is still 100% convinced that this is Migraine Associated Vertigo and needs to be handled with medications. (Even though I have taken every med at every dosage already..........for 8 ###### years!!!!)

To have a surgery that was unnecessary and not helpful is definitely a scary (and disheartening) thought. I am not "pro" surgery, but I am "pro" ........"getting better".

I am still awaiting Dr. Cognetti to call me back, as I have sent him a burned CD of my anatomy in my neck region with the 3D CT Scan with Contrast. I wanted a second opinion prior to seeing Samji on Tuesday.

I can't even imagine feeling "normal" anymore........albeit I do not have the pain that most everyone suffers from, my personal hell is bad enough.

Will keep you guys posted. Thanks for the continued support, prayers and words of wisdom.

Party at my house if I get cured.........and the steak, lobster and wine are all on the house. (And I am a man of my word)

Todd......the ultimately confused, and ultimately sick of being sick member :o(

I just had my cerebral angiogram, and it showed a pressure difference across one of my styloids. This helps me to know that not only is it compressed, but could be contributing to the veinous outflow problem that I have. The other side is also compressed, but didn't show a pressure gradient, so that one probably doesn't need to be removed. It helps me because you know that a garden hose can be pinched a little, and you can still get a lot of water through there. However, there is a point where it's too pinched off, and you can't get enough water through to water your plants. There is a point at which it becomes a problem and I think measuring the gradient helps in making a decision about whether to take the styloid out.

I think he's just really saying that there isn't evidence for the eustachian tube dysfunction being from Eagle's, but remember, there isn't a whole heck of a lot OUT there about Eagle's to BEGIN with... and there is even less about the vascular version.

I know that blood backing up in my head is swelling things up- I can make this happen, and feel tissue in my face and nose swell up. I think the tissue forming the eustachian tube also swells at least a little bit, and closes the area. However, I think the main cause of the eustachian issue is the neck muscles-- I am actually a little bit improved on the eustachian problem, now. It used to be ALL the time. Now it is NOT all the time. When I do pushups and kettlebell swings, the eustachian issue is worse. That says a lot.

I think neck issues and Eagle Syndrome have a connection, with one making the other's symptoms worse. Either neck issues exacerbate Eagle's symptoms, or those styloids kick off a neck muscle reaction (or the pain from the styloids-for those with pain-cause them to hold their neck muscles in contraction or very still, shortening them over time).

The angio was no big deal; I had it yesterday. It was painful when the dye was squirted, but that's it. The biggest pain is laying flat for 4 hours afterward in the hospital bed, so that your femoral doesn't open back up and pump blood out.

I'm overall feeling pretty great since I have figured out the neck muscle connection; I was having one of my best days among a couple of great weeks when I did the angio. I would have liked to see what it showed when I had my worst days.

I would consider that it's entirely possible that your eustachians are connected to Eagle's. He certainly isn't saying NO. He can only go with what was published and what he has seen. BUT...from my own experience, I'd seriously consider the neck, ESPECIALLY if you were weight training in the gym, trained with something like a crossfit workout, or know you have horrible neck posture with work or leisure activities that you spend a lot of time doing.

(I realize you already know a lot of this; I'm typing also because there are a lot of new people here and I noticed some neck questions earlier, so I repeated a lot of what I said in some of my more recent posts)

I have been feeling pretty normal and not fatigued or screwed up in the similar ways that we are both symptomatic-- MORE often that not, I feel pretty good! It was recently NOT this way, remember, so there IS hope sans surgery! I may need surgery to get all the way back, but I'll take what I've got so far!

UGH! Migraine Associated Vertigo. I was misdiagnosed with that by Hopkins after it was determined I did not have the Meniere's Disease that was previously diagnosed years before.

Now I have bilateral jugular compression and Intracranial Hypertension...

Tee- Thank you for explaining the need to measure the pressure gradient. Before reading that, to me, I thought that with bilateral, severe compression, it wasn't necessary to have the angiogram. Makes sense now.

Tee said:

I just had my cerebral angiogram, and it showed a pressure difference across one of my styloids. This helps me to know that not only is it compressed, but could be contributing to the veinous outflow problem that I have. The other side is also compressed, but didn't show a pressure gradient, so that one probably doesn't need to be removed. It helps me because you know that a garden hose can be pinched a little, and you can still get a lot of water through there. However, there is a point where it's too pinched off, and you can't get enough water through to water your plants. There is a point at which it becomes a problem and I think measuring the gradient helps in making a decision about whether to take the styloid out.

I think he's just really saying that there isn't evidence for the eustachian tube dysfunction being from Eagle's, but remember, there isn't a whole heck of a lot OUT there about Eagle's to BEGIN with... and there is even less about the vascular version.

I know that blood backing up in my head is swelling things up- I can make this happen, and feel tissue in my face and nose swell up. I think the tissue forming the eustachian tube also swells at least a little bit, and closes the area. However, I think the main cause of the eustachian issue is the neck muscles-- I am actually a little bit improved on the eustachian problem, now. It used to be ALL the time. Now it is NOT all the time. When I do pushups and kettlebell swings, the eustachian issue is worse. That says a lot.

I think neck issues and Eagle Syndrome have a connection, with one making the other's symptoms worse. Either neck issues exacerbate Eagle's symptoms, or those styloids kick off a neck muscle reaction (or the pain from the styloids-for those with pain-cause them to hold their neck muscles in contraction or very still, shortening them over time).

The angio was no big deal; I had it yesterday. It was painful when the dye was squirted, but that's it. The biggest pain is laying flat for 4 hours afterward in the hospital bed, so that your femoral doesn't open back up and pump blood out.

I'm overall feeling pretty great since I have figured out the neck muscle connection; I was having one of my best days among a couple of great weeks when I did the angio. I would have liked to see what it showed when I had my worst days.

I would consider that it's entirely possible that your eustachians are connected to Eagle's. He certainly isn't saying NO. He can only go with what was published and what he has seen. BUT...from my own experience, I'd seriously consider the neck, ESPECIALLY if you were weight training in the gym, trained with something like a crossfit workout, or know you have horrible neck posture with work or leisure activities that you spend a lot of time doing.

(I realize you already know a lot of this; I'm typing also because there are a lot of new people here and I noticed some neck questions earlier, so I repeated a lot of what I said in some of my more recent posts)

I have been feeling pretty normal and not fatigued or screwed up in the similar ways that we are both symptomatic-- MORE often that not, I feel pretty good! It was recently NOT this way, remember, so there IS hope sans surgery! I may need surgery to get all the way back, but I'll take what I've got so far!

I am not sure it's for everyone, but I was not feeling too decisive about the info I had so far to make a surgery decision.

Some people have scans that show enough that it is a more clear decision, or they have the nerve pain that makes living with the styloids unbearable. (I don't have pain). I had/have neuro symptoms, like Todd has, so I am looking for a more concrete explanation. My scans do show compression of jugulars by the styloids, but I did grow a bunch of collaterals in the back of my head to help drain the blood, so the theory is that I really shouldn't be symptomatic from the jugular compression. The collaterals should be taking care of it. The angio looked at all of this, and the docs are discussing it and I am waiting to hear what they think.

It's possible to have these long styloids and live a totally normal symptom-free life, too...it's just some of us who they cause problems on when they are long/calcified.

Sorry to hijack your thread a little bit, Todd-- I can't wait until you get to go see Dr Samji and can discuss everything with the scans!

No need to apologize Tee........you are sharp and I value all of your info that you post!

Dr. Samji (in our phone conversations) has never brought up the idea of having an Angio done, but I will be sure to bring that up with him.

Our symptoms (or sometimes lack thereof) mirror each other so much that I will try to bring back as much info as possible on my Tuesday clinic visit and share it with you. Take off at 5:00 am from Spokane for a 9:00 am clinic visit in San Jose.....back in Spokane by 5:00 pm ha :o) travel warrior!!!

Let me know if there is anything else specifically you would like me to ask him and I will certainly do it.

Still waiting to hear from Dr Cognetti (whom I sent another burned CD to) to get his thoughts on this jumbled mess in my head.

Birthday today :o) So I will forget about the "blahs" and enjoy some good vino with my wife tonight to celebrate!!!

Cheers all!!!

tcs

Happy Birthday! Let's go for ONE HECK OF A YEAR for you....it's about time this gets figured out! You better crack that wine open!

I think it's VERY GOOD that you are actually traveling to see him-- I hope it turns out to be as helpful as we all want it to be! I hope he gives you a bigger chunk of time than normal patients who can just drive on over any time.

What I am really curious about is whether the idea of increased intracranial pressure could be going on if the jugulars are restricted, and whether hypoxia (lack of regular bloodflow to brain, hence less O2 delivered like your first doc suggested) is what could be going on if carotids are restricted.

Those questions really bug me and I'm curious what he thinks...it's not so much for my case, but I want to know in general if those are real possibilities. I tend to think you could have both restrictions going on. I keep thinking about these things when I look at the way blood flows and what could happen with any restriction of it, in or out.

You're probably going to ask him anyway, but ask him if you have to swallow differently if he removes the styloid process. What else...hmmm I'm on the spot...can't think of anything else! :) Is he doing testing on you? Like imaging? Or just going with what you've got already?

Yeah, that's quite a travel day for you....but it's efficient! I guess you have to rent a car and all of that?