How to start after first diagnosis - need a little help

Hi All,

I had my first diagnosis this week for ES. I panoramic x-ray was reviewed by an oral surgeon and he pointed out that I had ES. I went home and found this site and realized how many symptoms I had that line up perfectly; however, I don't know where to go. I want a second opinion first but who should I go to? Neurologist? ENT?

How would you go about your next move to avoid wasting time, etc?

What tests should I get? All I have is a dental panoramic.

I have an old MRI from 2 years ago that I could ask someone to re-read.

I'm in Pennsylvania and I already called Dr. Cognetti's office and they want all the test results before meeting. I just don't even know what they want and who I should go to for them.

Thanks for the help!

ENT (this is their ballpark). Make sure his office gets a copy of the panoramic x-ray, and ask about the possibility of getting a 3d CT scan or CT scan WITH contrast, so they can confirm. MRI's are generally useless and costly when it comes to our particular syndrome. Hope that helps,
Nick

Also, your regular doctor should have no problem requesting/submitting for a 3d CT scan, which I am sure the ENT would apprieciate and would save you another appointment. Also I cant spell apprieciate,
Nick

Thanks for the info! I have to find a better ENT, mine is not so great. Happy to have a plan! Thanks again!

ENT's have not proven helpful-actually helpless. diagnose yourself and get a panorex and a good surgeon. It may be here but ENT's only know nose jobs. My orthodontist knew and cared more.

I really cannot emphasize enough the word "surgeon" !

Hi Shaw,

My ENT advised me, even knowing the ES diagnosis, to get PT for my TMJ for now. He suggests avoiding surgery, which he has performed but didn't seem comfortable with the results. I think he's worthless.


shaw said:

ENT's have not proven helpful-actually helpless. diagnose yourself and get a panorex and a good surgeon. It may be here but ENT's only know nose jobs. My orthodontist knew and cared more.

I really cannot emphasize enough the word "surgeon" !

I can understand both your frustrations, I had a very poorly done surgery, by and ENT, but at least he gave me the diagnosis. And ES really does seem to be a ENT covered disease, perhaps emma can correct me if I am wrong, but aren't most of the doctors on the approved list ENT's?

Hi ent are god for initial maybe. But they are not surgeons. With the diagnosis, find a reconstructive, skull base or even a plastic surgeon. Ent s can tel you have a sinus infection and their knowledge ends there. Mine admitted it pretty much as to the limits of his comfort, ability level. I stress a surgeon who has done this before and has a background in the surgery. It is no guarantee but you can only do so much to get the best outcome. My 1990 doc removed hyoid bone in 202 so bad can ooze out. Cedars in la sent me to a great head, neck, vascular, reconstructive, skull surgery group. No ent just child and adult surgeons I had a great outcome. But it ultimately could be just luck no matter how much you feather your outcome.
JCW said:

Hi Shaw,

My ENT advised me, even knowing the ES diagnosis, to get PT for my TMJ for now. He suggests avoiding surgery, which he has performed but didn’t seem comfortable with the results. I think he’s worthless.


shaw said:

ENT’s have not proven helpful-actually helpless. diagnose yourself and get a panorex and a good surgeon. It may be here but ENT’s only know nose jobs. My orthodontist knew and cared more.

I really cannot emphasize enough the word “surgeon” !

I can’t spell spell. Ent is diagnosis. Surgery is serge on. See no spell check. You have your diagnosis now move up the food chain to a surgeon. Notice ENT doesn’t have surgeon in their name…have I beaten a dead horse.



JCW said:

Thanks for the info! I have to find a better ENT, mine is not so great. Happy to have a plan! Thanks again!

In 1989 my first diagnosis was TMJ…wrongdoing Mary loo…we are not that simple to diagnos…we are very special and these medical people need to realize that…even we need to to acknowledge we have this very rare thing and advocate for ourselves in the crudest mas yeast terms sometimes.



JCW said:

Hi Shaw,

My ENT advised me, even knowing the ES diagnosis, to get PT for my TMJ for now. He suggests avoiding surgery, which he has performed but didn’t seem comfortable with the results. I think he’s worthless.


shaw said:

ENT’s have not proven helpful-actually helpless. diagnose yourself and get a panorex and a good surgeon. It may be here but ENT’s only know nose jobs. My orthodontist knew and cared more.

I really cannot emphasize enough the word “surgeon” !

Too bad it’s a hockey game. Sorry. I’m a anti doctor advocate. Us yes doctors no.



LivelyCadaver said:

ENT (this is their ballpark). Make sure his office gets a copy of the panoramic x-ray, and ask about the possibility of getting a 3d CT scan or CT scan WITH contrast, so they can confirm. MRI’s are generally useless and costly when it comes to our particular syndrome. Hope that helps,
Nick

Maybe for me my view on this is the way it is because the ent who did my surgery albeit poorly right, diagnosed me within 9 months of my symptoms when I was at the end of my rope. So I will always thank him for that, as I don't get looked at like I'm nuts since then and the surgery. But I hear you shaw, there is a strong chance if I wasn't lucky enough to be diagnosed I would be immensely frustrated by the waffling of medical professionals.

I agree the most with your description of the frustration of time, the looks, the attitude, of their treatment of me, my desperation and sssssllllloooowwww medicine.

I had a CT of my pelvis on a Friday, diagnosed with bladder cancer on Monday and tumor removal on Friday; one week! After My eagles experience, I forgot medicine can move quickly. I just wish after any view confirms ES, action would occur fairly fast for all on this site-it doesn't--your nine months, my 1.5 years, my 15 years. just kinda unfare. I had no pain with the cancer but such severe pain with the ES. both were important and both had visual proof so what's the diff.

My issue or sadness is based on the fact that after 10 ENT's in 1989-1990, my orthodontist diagnosed it just from description of my symptoms. an oral surgeon did the panorex and a reconstructive one did that surgery. But then he removed wrong bone 10 years later so its just a crap shoot I've discovered so I try to get the most possibly able person even though they might suck. There are enough stories here that show my theory is full of it.

My biggest gripe with all of them is the amount of coaxing it takes to get anywhere with them. That's why I was shocked amazed pleased when my last surgeon said its too long we will just have to take that out. pretty concise and I never heard that before. So its probably better to say pick who you trust not desperate to do something because they said they would. I went that route with #2 out of pain desperation (I see I wasn't thinking clearly) and it want bad too.

But how did yours do it poorly? plus all the hemming and hawing delay. When I got symptoms on the left in 1997 I knew what it was no Dr. needed to tell me but it took 5 years for failed surgery, 1 more for failed surgery, and 10 more for correct surgery. So it seems we have the same experience and opinions based on this sordid history.

I just came up with the surgeon desire after realizing I'd been going to ENT's for so long and getting nothing except a description of their lack of comfort doing it. I needed someone who knew what they were doing and would dive right it. so to speak.

So my answer is ugh! This might be over--doctor free in 2014--maybe.

I think the best I can do is give my experience and what might be a quicker way to get a gung-ho good Dr. but it didn't work for me to well so in typing this I realize I was just lucky.

I ain't on here for my brains or my good looks hence the pic of my kitten. Well maybe my brains and experience but spell check doesn't correct the wrong word if it's spelled right. My slikdexia doesn't help either.

My ENT just ordered the 3-D cat scan for maxofacial - is this good enough or should I have the rear of my head done too? Just want to do it the right way. Thanks!

JCW, if you can call him up and ask him if that 3d Ct will include everything from that area down to your cervical spine, stopping at your T1.

^^ this is what I had done, more specifically a 3d ct from the top of my ears down to my t1, and the results were excellent.

Oh also since it is a 3d cat scan if the front of your head is being done, so is the rear =- )

JCW said:

My ENT just ordered the 3-D cat scan for maxofacial - is this good enough or should I have the rear of my head done too? Just want to do it the right way. Thanks!

Oh! I guess I should have figures that out! LOL

How much radiation is a 3d ct scan compared to a normal ct scan? Not that it matters any more when you get these syndrome.

bah no more than a couple delta flights give to all their passengers vince. ( while in a plane you are exposed to low levels of radiation as you are higher in the atmosphere, 4 hours of flight time is generally puts the body through the same amount of radiation as a 10 minute MRI) I believe CT scan's actually give less radiation then an MRI, because my 3d ct scan took .... wait for it...... 30 seconds....30 seconds to get diagnosed.....and doctor's don't give them out readily....that is just fucking beyond me..... meh pardon my french