Results of Meeting with Dr. Samji - 10/01/13

General
1

First.....I am tired! Got up at 2:45 a.m. to catch my flight to San Jose to visit Dr. Samji this morning...ugh.

I brought an "extra" burned CD with me and I am glad I did. Apparently, the one that I had sent him did not have all of the 3D scans and did not show the clarity compared to the one that I brought for him. He spent well over an hour with me......far belong the "norm" for a clinic visit :o)

Here is the skinny:

Styloids ultimately measured 50 mm, with my left one a little longer.

While he was impressed and said these were ridiculously long............we spent the bulk of the time talking about the width and curvature of these things. He said he has never (and he repeated "NEVER") seen Styloids as wide as this and curved as "strange" as these were!!!

He said if I complained of pain, I would be as "classic as an Eagle Patient would present".

However, because of the lack of pain, he was a bit stymied. Ultimately though, Dr. Samji said that these things could very, very, very possibly be causing the nerve irritation that I mention, that ultimately leads to all of my Neuro symptoms. (He did feel both of these as he reached in my throat.....where no other doctor could even feel them......ugh)

We both agreed that the risk of surgery was far less than the potential upside of removing the Styloids.

Thus, I will be scheduling to have this done in about 5 weeks or so........once I tie up some loose ends and get prepped for this.

So.......there you have it. No certain , positive way of telling if this is the root cause of my ailments, but I am going to put it in his hands and see what happens.

I will have a nice scar to show off and , hopefully, give me that "edgy" look :o)

Peace out,

Todd

2

Well, you sound like you can actually let your breath out, anyway, having this surgery (a definite direction) ahead of you.

Good job on the extra CD; I find that they are also lost very easily in doc offices...I am on my 3rd set of various CDs that keep getting lost with visits.

Are you getting both out at once? Or just that left to start? How did you not gag when he felt the styloids in your throat? I can feel mine from under my jaw, just pushing up and aft through the skin!

It sounds like the results of the surgery will ultimately yield the actual answer for you. Being that your styloids are so long, you could even be preventing some of the pain symptoms that may have shown up in later years....you never know. Sounds like he is a good doc to trust, after all the postings about him so far.

I really look forward to hearing about your surgery and results! It would be really awesome to hear that all of your symptoms- or most- are resolved when this is all said and done! Hurry up and schedule this (selfish side talking here! haha)!!

3

haha :o) I will be scheduling it for sometime in early November to mid November. the whole month of october i will be bringing my daughter to 4 different colleges that are recruiting her to pitch (fast pitch) up here in the northwest :o)

that will be my fun before the pain :o(

he just does one at a time..........the one that looks most problematic. for me, that is the left one.

and yes.......i gagged like a little girl when he stuck his fingers down my throat to feel them. (by the way, he is the only doctor that has been able to feel them.......interesting :o) not comfortable.......ugh.

so.........i guess i do not see a reason to NOT proceed is the way that i am looking at it. i have 6 months of sick leave, can work at home and still get paid, great insurance through the hospital........yada yada yada.

don't know if this will be the "fix" after all these years..........but like Andy Dufrane said in The Shawshenk Redemption........."Get Busy Living or Get Busy Dying" (love, love, love that movie !!!!!!!!!

wish me well and i will keep you posted

todd

p.s. i made his records books..........he said he had NEVER seen this long, coupled with the width coupled with the odd curves. hurrah........i am a poster child of Eagles :o(

4

Well that is great news. You getting surgery and we have a poster child for ES. :slight_smile: Wishing you well and please keep us posted on your surgery and where your daughter chooses to play. I am very curious to see what your styloids look like.

5

All the best to you! I am scheduled for surgery with Dr. Samji Nov. 13th! I am nervous, but glad he is willing to do a revision on my right side. I had 1 cm. taken out in 2011 and my pain symptoms lessened but not fully abated. Left wondering why I could not "heal" I ended up finding this site and thus Dr. Samji through various sharing of others experiences. My right side previous to my intra-oral surgery was about 41mm long, he said the Dr. did not take enough out looking at my 3D CT scan. I am hoping this surgery will do the trick of alleviating my constant burning back of my throat symptoms.

I am happy for you most of all, and maybe our timing will be as such we meet. I will be coming from Anchorage Alaska for this leaving my 3 kids home with grandma.

All the best,

Linda

6

The best of luck to you on your surgery decision. I truly hope that the styloids are the main culprit to your nerve problems. Will be following your progress to surgery. Hang in there a little bit longer. You will be in our prayers and thoughts for the best surgical outcome. Take care and God bless!

Viperbone

7

You guys are "Champs" in my book!!! Thanks for all of the positive vibes that you are sending my way !!! I can't guarantee that this is going to fix it .......matter of fact, I have tried so many things in 8 years that I am suspecting that it won't do a damn thing.

Maybe trying to not get my hopes up???

That being said, I really will be O.K. if this is not the "fix" to my ailments. I have got my hopes up so many times that I am not going to be deflated again.

My gut / intuitive instinct tells me that when an expert in the field tells me that this is one of the worst that he has seen.......there has to be something to it. But who the #### knows anymore :o(

Just found out I have Jury Duty from November 1st - November 14th.......ugh. Right when I wanted to do this !!!

So......pending a second opinion from Dr. Cognetti, it looks like I am moving ahead.

I just wish I had "typical" pain in my face so I could, without question, know that this is the root cause. I just do not have the anatomical data to support it :o(

Will keep you posted.

Todd

8

Hey Todd

I hope that everything will turn out so much better for you. November is not far away.
About the pain… I have it… Big time. Combined with enlongated styloids. (Not as long as yours :wink: … But my surgeon said that this is NO guarantee of ES. And NO guatantee that the operation will cure me. He even said that there are people out there with longer styloids than mine… with no pain. So… I do not think that any of us can be 100% sure of anything.

But we can be hopefull … We are too young and alive to feel like this.

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Congrats for the official diagnoses of Eagles Syndrome!! After reading your post, I made an appt to fly out next week to see Dr Samji. I was trying to get all my health history, imaging reports, and symptoms mailed and was too much. I have the CT scan that shows my styloids are bigger than normal range & a local ENT said my styloids have “some” "calcification. Local Drs all say, Eagles syndrome is so rare. Frustrating!! I have been in unbearable pain, migraines, with auras, muscle spasms with weakness. I have sympathetic hyperadrenergic, my BP drops and have near syncope. If you don’t mind me asking what were symptoms? Similar to mine?

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Almost exact opposite symptoms Amy.......which is the scary and frustrating part of all of this. He (Dr. Samji) could not believe that I do not have pain in my face by the size, width and curvature of these tusks.

I have Eustastican Tube Disorder, ear fullness, ringing, light-headed, slight vertigo/off balance moments, never feel "quite right". When symptomatic, my left ear feels like it is being irritated by a nerve deep inside my head.

I have Neuro issues vs the pain. I know it is probably easy to say the pain is worse. Trust me......this has been no walk in the park. It is 24/7, going on about 7 years of so.

Good luck with Samji.......cool guy and very sharp. I hit it off with his nurse , who was a cardiac transplant nurse for 10 years (which is my field). They were all very welcoming, compassionate and sharp.

Maybe we could arrange a "buy one, get one free deal"???

todd

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Cath lab cardiac nurse as well. That is until my pain and issues were too much. Hopefully we will be able to return one day.

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Ahhhh...........we see your patients after you punt them to us !!! After stents, medical managed, etc......the Cardiologists eventually say "Uncle" and give them to us.

Let's get through this together!!! I just had my birthday last week.........will be celebrating my 19th anniversary next week and I am done with shit.

I am here to bounce ideas off of...........or just to complain to. I will reciprocate as well :o)

t

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LMAO!! PUNT or too much pillow therapy …>) Maybe I am getting some payback, idk! Just want to feel normal cranky self!!! I didn’t think I was being nurse ratchet too much, maybe so!!:))

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So glad to hear you're getting this taken care of and very interested to know how it turns out. I think it was "R.B." who first suggested Dr. Samji to me in a previous thread. My wife and I are grateful. She finally has her appt with Dr. Samji this Friday. We're fortunate enough to only be about 60 miles from his office but riding in the car is brutal for her. It really flares up her symptoms. She just signed up here today (she's already addicted to this site!) and I'm sure she will providing updates on her progress as you all have been generous enough to do!!

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Hi Go Cougs. I would also like to add to what my husband said (kickazzosx). Reading your post about what Dr. Samji said about the nerve causing the neuro symptoms gave me the extra push to schedule to go see him. I was hesitant to even explain my symptoms to yet another Doc because I feel like they always look at me like I have two heads. So frustrating and exhausting! Thanks :)

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You are all certainly welcome.

I am cautiously optimistic to say the least. I have tried so many things during these past years, from meds to perilymph fistula surgery to you name it!

I am hoping against hope that this will have some positive effect on my Neuro issues.

Still no pain.........I know, amazing with that long of styloids but it is what it is!!!

Tinnuitis, visual auras, foggy, horrible fatigue..........and it goes on 24/7.............ugh.

Will keep everyone posted after the surgery

Todd

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Hi Todd. Glad your visit with Dr Samji went well. Having my styloid removed sure helped with stopping the vertigo and the ear pressure. I sure hope it helps for you. I was back to work in 2 weeks with a hardly noticeable scar. I have to point out the scar because people don’t notice it. After surgery he put on a pressure bandage on for 24 hrs which was quite uncomfortable. Then, under the scar felt like a rope for about a month. He said that was normal. My only other complaint was the prednisone which affects me by making my thoughts race and for a few hours I was an emotional wreck. My RN friend called it the steroid storm. I hope it helps for you because i really like lobster. Haha!! Keep us posted. Good luck. Polly

18

Thanks Polly! Did you have any other "non-pain" issues, like the ear pressure and vertigo? I do not fall into that bucket.......just curious if you dealt with other issues that do not fall into the proverbial "ES" bucket?

Thanks!

Todd

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All the best Go Cougs! You are in my thoughts and prayers, I trust all your issues will be dealt with after you have had the surgery. I have had my right side done last Friday and are doing really well. Keep us posted :)

20

Hi. I had a little pain at the angle of the jaw. Mostly ear pain/ pressure and dizziness when I turned my head and vertigo(benign paroxysmal postural ). I also would have terrible coughing jags as the bone was down in my throat. So i got diagnosed with biderline asthma. Mostly I felt like hell. That improved along with only one episode of vertigo just a month after the surgery. It’s been 2.5 years. I am starting to ride a bike again and can climb a ladder without being dizzy. Now I get episodes of pain on the other side at the angle of the jaw to the tonsil area. Some tinnitus too. Sounds like tree frogs. Hope that helps.

Polly