So call me Crazy...maybe

Oh my goodness, what a difference a day makes! Since I was already off work this past Friday from a tooth extraction on Thursday, thought it would be a good use of time to go get copies of my CT scans and the corresponding reports over the years. Although my most recent scan done in May of this year, requested a look see of the styloid processes, there was no mention of it on the CT /radiologist report. When the appt I had previously made (about 2 months prior) with the neuro surgeon finally arrived, I told him that I had just been diagnosed with ES. He asked a little about it and then pulled up that same scan on his lap-top and says "wow, those are some really long SPs to which I agreed since I was there looking at them too! So that tells me those were obviously visible on the scan so I asked my PCP that ordered the scan in the first place to call over to the radiologist to ask for the scan to be revisited and a again requested a report on the SPs. The radiologist reported back pretty quickly with the standard normal size measurements and stated no ab-normalcy was found! Huh???
On another note, I’ve been patiently waiting for Dr. B’s office to call me to set up an appointment to see him as a second opinion. My PCP called on Friday to say Dr. B’s office had called them that morning to say he doesn’t do ES! Huh???
I specifically called there a couple of months ago and while I was on the phone, the young lady put me on hold to go ask the Doctor if he treated ES and when she returned to the phone she says…yes he does and you will need to do, “this and that and the other” and we will set you up with an appt to see him once he has reviewed you info. Info was faxed weeks ago!
Soooooooooo…it would appear I am back to CRAZY!!! I sure hope Dr. Krempl doesn’t get weird on me!

kiZe6159 - WOW! I was hoping by the way your post started that you had great news to share but it was sadly the opposite. I would say the radiologist in question needs to review what standard length SPs look like & how long they’re supposed to be on average (2.54 cm or 1"). If they’re visibly long to you & your neurologist then obviously something’s amiss in the radiology dept!!
I’m also sorry to hear about your second opinion doc’s office bailing on you. I’d call back & ask for the office manager or someone higher up (or if you know who you spoke to originally ask for that person) to get a second verification that this doctor really doesn’t do ES. Sometimes the right hand doesn’t know what the left is doing even in a medical office.
Since Hadassa has given such a high rating to Dr. Krempl, we’ll hope that he stays the course & is greatly helpful to you.
I’ll pray for that!

:pray: :blush:

Good morning Isaiah_40_31
We all know how the story goes by now, but it doesn’t make it any easier to choke down! You wouldn’t believe what all kind of drama I had to go through to get that tooth out and on and on it goes. When I was out gathering info last Friday, I also became aware of a piece of info I wasn’t aware of before from my brain scan back in 2013 (neuro looking for MS). I don’t remember the exact wording but something about several areas of white matter usually seen as normal on elderly but given my age, most likely series of small artery ischemic episodes. I do wonder if that is something that happens when that ligament gets stuck on my horn or whatever is happening? I am always so panicked I just don’t know. The one thing I do know is nobody gets in a hurry anymore about much of anything, so I will wait for August 21st and beyond! You and everyone here have been so helpful for me! I do have hope that it will get better and I will get my life back before I am too old to even care or enjoy it. And I haven’t had anymore truly dark days since joining you guys. Prior to that it was a pretty regular happening and wasn’t sure I was going to continue to be able to back away from that edge. Every little set back just sent me into a melt down. I really want to be able to just scream at the radiologist but maybe he honestly isn’t seeing it…the measurements he gave are the standard 2.54 & 2.52! Why are the doctors and me looking at the same scans seeing it? Neuro I saw last week says he strongly believes that mass under my ear/jaw bone is where the tip of my right SP is, same mass my regular ENT felt the moment he diagnosed the Eagle. Thanks for listening to me rant everybody…baby steps, baby steps!

kiZe6159 -
I’m so glad you’re encouraged by the discussions on this forum & the input you’ve received. I was 58 (am 61 now) when I was diagnosed w/ ES. I was also very blessed to get diagnosed soon after my symptoms started. As you’ve seen on here, that is rare. Surgery was a “no brainer” for me & I faced it fearlessly because I fully trusted that God put me in Dr. Samji’s hands. It was the right decision, of course. It did take about a year & a half for me to be fully back to living in my preferred fashion but I got there in the end & am back doing everything I enjoyed before my little ES side-trip.
I’m so glad you have key doctors advocating you. This will only help your case. If all else fails in OK & you can afford it, you could have a phone consult w/ Dr. Samji & potentially come to CA to see him. I’m here to give you support if you come this way.


Do your appointment with Dr. Krempl…Do NOT go on the information you are getting from the Front Desk. You are on the right track…I was never impressed with the Front desk so, just go prepared with whatever you had faxed to OU Physicians. They handle so many patients and things are sure to get misplaced.

Just stay cool and when you see him, ask the questions, listen to what he says and if he has to do some of the tests that you’ve done before, do them. I know he did allot of the same tests like, putting a long thin scope up my nose and down my throat and I remember seeing it on a screen. He’s the one who diagnosed me…Then, he sent me to another OU Physician named R.Layton Runkle at Norman Regional. He’s the one who did the surgery. He passed about 8 yrs. ago but, Dr. Krempl might do the surgery now??? So, just stay calm and if the Front desk/operator is not up to snuff, bypass them and just deal with Dr. Krempl or his nurse.

I’m sorry for your setback. As I’ve found, with ES you have to be your own advocate. Most Dr’s, in my experience, either don’t know about it or think it’s so rare that you can’t possibly have it. Family and friends don’t understand that the Dr (radiologist) could be wrong and have no idea what you are going through. For me, it’s hard to explain what I’m feeling and to be honest, I don’t really think most people want to know. Most times I just say I have a headache (which I do) but I don’t say my eye feels like it’s going to pop out, my sinus hurts, my jaw hurts, my throat hurts, I’ve got tingling/numbness in my face, my neck hurts when I turn my head, etc. Sometimes I think my wife thinks I don’t want to talk to her or do anything. Even Dr’s who know about it aren’t experienced with it and aren’t sure what Dr to which you should be referred. I’m 58 and was diagnosed about 3 years ago but I believe I’ve had this for 20-30 years and the symptoms have progressed over the years.

I’m sorry for ranting about myself in response to your post, but I want you to know that we are not crazy. It’s a comfort to be able to communicate with people who understand what you are going through. I have a consult call with Dr Samji next Tuesday and hope there is a light at the end of this long tunnel and it’s not a train (gallows humor).

God bless and keep you!

Morning Isaiah_40_31
I think I have just done this doctor and dental thing for so long I have admittedly become biased toward most of them! I can pretty much tell before I even go what the outcome will be. I wish I could afford to come to CA and see Dr. Samji! However, as you might guess I’ve spent a great deal of funds on these many years of docs and dentists and chiropractors - don’t have a lot of savings. I don’t even want to think about dipping into my retirement. You are so very kind to offer support should I end up out there and I so much appreciate you (not ruling it out at this point).
I am no stranger to surgery, been there and done that on numerous occasions! ES is not the only RARE thing my body has done to me! LOL Look up Ducts of Luschka if you have a bit of free time! That one about killed me! So, if Dr. Krempl ends up sounding flaky or not experienced enough I will NOT have him poking and prodding and snipping! I don’t think I could accept yet another…Uh-Ohh! And since I suspect I’ve been dealing with this for quite some time, I am concerned there will be a mess once he gets in there!

Morning eaglesnest
Yes, I am learning to be my own advocate as as we all know, most docs don’t like it! I know many of my family and friends don’t get it and as a result, I have pretty much faded out of social life over the last 3 or 4 years. LOL…those symptoms you mentioned pretty much cover it on a daily basis, add a few or subtract a few. Some days are almost normal but not many! I’ve had a rough week trying to get through yet another significant bite change after that extraction last week. Since my once awesome dentist prefers crack over dentistry, I don’t have my night guard anymore to get me through! No worries about “ranting”…that’s what we are here for - right?
Yes, I have spent the last 3 or 4 years accepting that I was crazy and through that acceptance have lost my self confidence and zest for life in general. So, I am trying to adjust to this new information and come back to the here and now. I think it’s going to take some time and of course waiting for what seems like forever before I even get in for just my consult doesn’t help! Ok, I’m done with today’s rant…thanks everyone for being patient with this die-hard pessimist!

Morning Hadassa
Thanks bunches for the reinforcement! I’m just so tired of dog and pony shows…I’ve seen so many I can’t even begin to tell you. Much like how I felt when I saw another doctor in that department last year for this atrophied parotid gland (one of my many symptoms). As per usual he dismissed me with a “everything looks fine and dandy”!

kiZe6159 ~
I totally understand there’s a huge cost financially (physically & emotionally, too) to travel, have surgery, live someplace unfamiliar, & travel home again. I’m praying you will find the right doctor near you to take care of your situation.

Been so busy today, went to Orientation for about 3 hours for Edmond. I am a substitute and then I ran around all day. Just walked in the door
and saw your email. I am glad you will be seeing Dr. Krempl soon. Just hang in there. You are on the right path. It’s a journey but, you just have to take

it one day at a time. I know it feels like an eternity. I gave up so many times.

I was at the end of my rope but, Yah had a more perfect plan.

It’s okay to call me if you need to. I will not get upset. Sometimes I cannot sleep and I stay up very late.

I wished I had had this Blog on ES when I felt the first symptoms. I had nothing except my faith and praying

girlfriends in Yukon. HE brought me out of so much and he still does.


Sandra (Hadassa)

It’s so interesting how flaky some doctors become when ES comes into the picture. My radiologist was the one who found my ES. My ENT was sure my issue was just nasal polyps and didn’t even want to do a CT scan. I insisted! Interestingly enough, I have not heard ONE WORD from my ENT about the results of the scan. It has been 3 months. I know he got it because the radiology lab sent it 3 times. Guess who I won’t be seeing anymore.

LOL…I know, this isn’t funny, but these medical professionals are about as weird as the ES! My issue is just the opposite in that the radiologists don’t seem to have a clue (I’ve had several scans and ES has NEVER been mentioned by any of the radiologists reading the scan). Of course I won’t be seeing my long time ENT again either even though he is the one who finally diagnosed me.

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