Spoke with Dr Samji!

General
1

I spoke with Dr. Samji over the phone yesterday (Saturday) for about an hour.

First, let me tell you that from working in healthcare, this is (by far) NOT the norm for physicians and I think it speaks volumes about his sincere care, compassion and willingness to get his patients better. Unheard of for an MD to that.........still amazed :o)

So.............

He said he has viewed my 3D CT Scan with contrast and measured my styhloids at a little over 50 mm on each side........with the left one having width and curvature issues.

Not knowing as much as you guys do, I asked him point blank how does that rank to the patient population out there.

He said while this is not the longest that he has seen, I would be in the upper 1/8 of 1% of patients out there. "Impressive" was the word.........ha.

He could not believe that I do not have pain from what he was seeing on the scan! However, he did not discount my neuro issues......fatigue, tinnuitis, eustashian tube dysfunction, light headed, yada yada yada. Essentially, he said that many patients have these issues, but fail to tell him because they are so bothered by the pain that they can only focus on one issue at a time! The ringing ears, fullness in the ears, fatigue, everything else that I mentioned could certainly be an ailment of these things according to Dr. Samji.

In his mind, there is an obvious link to why I have felt like shit for 6 + years, 24/7 and these wooly mammoth tusks that he saw.

He said that he would absolutely consider me for surgery.......the external approach.

I will, first, have to have a clinic visit in San Jose and then move on from there.

This would all be so much easier to proceed with if I had the "classic" symptoms ....... I would have no doubts whatsoever.

I want to feel better so BAD that I am still tempted to move ahead, as I have exhausted every other form of treatment to date.

That is where I stand.......kind of dazed, but also somewhat relieved that he saw "something" that may be causing all of my issues that I have been dealing with.

Thoughts, Ideas, Suggestions???

Todd :o)

2

This is great news.

I had vascular eagles on my right side with several of your same symptoms and they were resolved immediately after surgery. I think it's likely that your symptoms are due to vascular eagles.

Dr. Samji did my third eagles surgery and it was by far the easiest recovery that i had and it cured my symptoms right away. I believe he is a very skilled surgeon.

I also think it makes sense what he said about people not even realizing they are having some of those symptoms because of the severe pain they also experience.

3

Being in the same boat, I am going to have an angio done to measure jugular and carotid pressures, and the rate of drain from my head. They thread the wire up through my hip flexor area (femoral vein) and the wire goes all the way up into the neck/head...they inject dye and watch where it goes and how it flows- whether it's restricted, the pressure difference across the styloid, whether there's a restriction lower in the neck, and if it's slow to drain from my head overall.

This is going to help determine if surgery is going to help.

I have no pain, either...just the same issues that you do.

An interventional radiologist is going to do this procedure for me this month. Maybe see if you can get that done -- it's more info for your decision, and it's a simple procedure.

4

Very interesting Tee. I will bring this up with Dr. Samji

Have they been able to measure your ES with the CT Scans?

You are one of the very, very few that does not exhibit pain.......but do suffer from all of the neurological issues that I describe.

Wish there were others that I could bounce this off of.......major surgery to go through unless you are sure this is the root cause of all this crap!

Todd

5

Yeah, that's why we are doing this test. I don't have anyone who can say, "Yes, all of your symptoms are due to Eagle Syndrome...we have hundreds of patients who have had your same issue and we resolved it all with surgery!" Oh the joys of having a 'rare condition'. :) I didn't want to 'find out' if my symptoms were due to the styloids, based on whether surgery was effective or not! That's a big risk, in my opinion.

Mine are near 4mm....not as long as yours. They also do compress the jugulars for sure on the scans ("very rare" the radiologist said). My body has built alternate pathways to drain the blood from my head, and in my CT images, you can see those veins that were 'constructed' by my body...they are in the back of my head, below the skull. They show up as very large, tortuous (twisty) veins that are not normally there on people. They are called 'collaterals'. They are there to do what the jugulars cannot do: drain blood from my head.

I keep saying this, but lately (last few weeks), I've actually LOST a lot of the symptoms because I found hardened muscles that come down the front of the neck, slip behind the collarbone, and attach to the first rib. (I think these are scalenes) I have loosened a lot of it up (it's almost impossible and still hard as a rock...has to be worked on every day, several times a day). Also they are very hard to 'find' and to realize that they are not bone...but hardened muscle. I believe, very strongly, that this affects blood flow to the head...and causes an arterial obstruction. It's too complicated to type out, but it also causes pain in my arms and pressure in my neck.

Levator scapulae or something in this area also seem to be problem causers- right smack on top of the shoulders, where military epaulets/stripes would sit...press straight down on those...my sinuses feel that-right behind my nose! All this time, I thought I had a sinus infection.

Due to my muscle work (or just flat out coincidence, but I doubt that highly), my visual disturbances and pulsing face/neck and eustachian issues are less than half of what they have been. NO more 'stars' and rarely blurriness, now! Each time I even move these muscles, my sinuses 'open up' VERY noticeably, right away...I actually feel a 'pop' on and off all day after this. It's kind of awesome how it feels...SO much less pressure! I feel INTENSE pain in my shoulder blade area when I press on these muscles in my NECK.

It's kind of a shame I'm getting this angio test done NOW...as I would have liked to see it before I figured this muscle thing out. I don't know if it's all or part of my problems, but I know it plays a part. I have been more 'alert', 'awake', and 'normal' feeling WAY more often in the last 4 weeks than I have been in a YEAR. I plan to write something more on this at some point. I never would have guessed this would have been a factor at all, given the seriousness of my symptoms, and that they presented almost exclusively as neurological.

I hesitate to bring up the muscle connection too much, because I think people brush it off and think their symptoms are 'too serious' to be related to what I'm talking about. I would have been the same way if I didn't find out for myself. I feel very lucky to have made this connection, because I feel a heck of a lot better these days!!!!!

6

I am so happy that you finally have something definitive regarding the ES and that you have found what appears to be a great physician.

I don't have the classic pain either and while I have had minor symptoms to date, they seem to be progressing. My last scan ( 3 months ago) measured the "tusks" at only 4.5 cm, so there is still time for me to experience what you have been going through for the past few years, mind you, I have had a few scary moments when I thought I might collapse and have often wondered if I have had a minor TIA at some point in the last 2 years. I will be getting a new scan (this time 3D with contrast in saggital plane view) on the 30th of this month, so I will know a lot more about my particular situation. I am also hoping to find out if my growths are the result of "ossified elongation of the temporal styloids" or "calcification of the stylohyoid ligament".

My thoughts, for whatever they might be worth, are to learn as much as you can in the least invasive/expensive ways possible. If your "tusks" are the "ossified elongation of the styloids", and it sounds like they are, then they should be removed regardless of whether they are causing your CURRENT problems, because they WILL cause you problems in the future.

If your "tusks" are from the "calcification of the stylohyoid ligament", then they are most likely causing some of your problems, but LEARN even more about what the removal of the ligament(s) will mean to you're post op life before removing them. Ultimately though, I think removal is inevitable.

I hope this helps a bit. I wish you the best of luck in coming to a decision.

Red Pill

7

Red Pill, do you have a reference to help figure out what removal of the ligaments does to your life post op....? I cannot get an answer to this, and have wondered this for so long. I have really looked for this answer and tried to deduce something intelligent from anatomy books, but I can't figure out what it would do to 'post op life', as you say. I thought it might affect how the swallowing happens, if anything? No one here has described such an experience, though post surgery? Thanks!

8

Hi Tee,

I don't have any concrete specifics, but from what I could gather, there may be some movement loss to the tongue as well as some loss of taste in certain areas of the tongue. This concerns me as my sense of taste plays an important role in my work life. I believe the hypoglossus muscle is part of the stylohyoid complex.

You may get some more answers from this video. http://www.youtube.com/watch?v=NC3_RNRAvQc

During the brief initial visit with my ENT, I asked him that question. He admitted that it is an unknown at this time, but that the body has an amazing ability to adapt. That is why he would never do surgery on both sides at the same time. Firstly to give the body time to adapt and secondly, to find out how everyday life is affected.

The wait for answers builds anxiety, which is abated once you get some, but then those answers lead to more questions, which builds the anxiety back up again. Almost as frustrating as the symptoms!

I wonder if there are other forums on the internet, whose members have personal experience with this?

As for me, I will wait for the scan and if it is the ligament, then I will start to worry about it, but not till then, as I need all the worry free breaks I can get.

Good luck,

Red Pill

9

I'm pretty sure I read somewhere here on the forum that people do fine after having the ligaments removed - but I don't remember where that was. I think it was about 3-4 months ago.

10

fyi......prior to scheduling a surgery or aggressively moving forward with this, I am sending another burned CD to another well respected physician for a 2nd opinion.

I want to be sure that everyone is seeing the same thing!!!

I have already sent the CD out and will (hopefully) have my answer within the next 2 weeks.

If I hear the same thing, let's get ready to get rid of these babies!

Quick question for people that have gone through it: Dr. Samji does the procedure through the neck, leaving an incision , but making me look much more rugged.....i.e. Clint Eastwood.

I am supposed to remain in San Jose for 5 days just for him to evaluate me and make sure everything looks O.K.

What kind of shape will I be in during those 5 days? Do I need my wife to come down, or will I be fine flying solo in the hotel room? Just curious.

Todd

11

Dr. Samji's office told me that I should have someone with me - especially for the first night. I'm pretty sure they want someone with you for several nights. And they want someone to come pick you up after the surgery - You can't leave in a taxi.

So I had to arrange to have friends of friends pick me up from the surgery center. They took me to their house until my friend could drive in from San Francisco and take me back to her place.