LOVE LOVE LOVE the picture!!
Hadassa!
Iâm very interested in your story and Dr. Krempl. I have an appt to see him in September. I hope to be seeing Dr. Baranano at Integress as well. Please let me know how you are doing now and what type of symptoms and presentation you had. I am in Norman - suffering with this for 20 plus years!
My story begins in Alvin, TX. It was Dec. 24th, 1987. I never had any warning or symptoms prior to that day. I had just had a child on Dec. 8th, 1987. I did not have any kind of throat issues during my whole life prior to Dec. 24, 1987. I was baking cookies for Christmas and I decided to eat a breast of chicken from LeMenu. I took a bite and as I swallowed, it felt like something had gotten stuck in my throat on the left side only.
I ended up going to the local ER in Alvin, TX. You talk about the fear I had. It was horrible! The small hospital in Alvin sent me to another hospital in Houston, TX. and then that hospital sent me to St. Lukeâs Hospital in the medical center in Houston, TX. They took me to surgery and they scoped me to see if something was stuck in my throat. They found nothing.
From then on, I suffered with the poking in my throat. I went to all kinds of doctors who told me I was depressed, I was having post partem depression and all kinds of things. It was dysphagia and everything but, the real diagnosis. It wasnât till I moved to Yukon, OK. that my steps were ordered for me to pursue my healing.
Because technology had advanced, my Gynocologist Dr. Deabn Carpenter at Mercy Hospital gave me a referral to OU Physicians. I was at the end of my rope because the styloid had calcified quite a bit and the left side felt like something was stuck in the right side. I was able to make an appt. and Dr. Greg Krempl with the physician I saw for my first appt. He did allot of the same tests I had in Houston so, I was worried I would be going backwards. Fortunately, he knew a doctor who was a professor at OU Physicians named R.Layton Runkle at Norman Regional. He spoke to Dr. Runkle and that same week I saw Dr. Runkle.
Dr. Runkle has since passed but, Dr. Krempl is still at OU Phiysocians. Iâm not sure is he is still diagnosing ES. I am now doing well and I praise Yah for healing me. It was a very hard surgery but, I survived it. Dr Runkle was so kind. If you have any more questions just email me
Good Morning!
Thank you so much for your response. I have yet to see Dr. KremplâŚsaw Dr. Vason at OU Health Sciences Ctr ENT dept. several months ago for this same issue, but specifically my right parotid gland. It has almost ceased to function - lots of dry mouth and throat issues. 2 CT scans and office visits later and yet another diagnosis of ânothing wrong with youâ! But since I havenât seen Krempl they are treating me like a new patient and the appt I made about a month ago isnât until September 11th. Meanwhile I am also trying to get an appt with Dr Baranano at Integris. When my ENT of 10 plus years finally diagnosed me a couple of months ago, he did not recommend surgery and referred me for PT. Not knowing anything about ES at that moment, I was willing to try itâŚhow could it get any worse!!! As you might guess, it could and did get worse. I stopped the PT after 1-1/2 weeks because it only aggravated and amplified my issues. Not surprisingly the PT facility never heard of ES either. So, here I am waiting/begging for a surgeon who knows whatâs up. I am so glad to finally get a diagnosis because these doctors truly had me believing I was crazy for a few years now.
I am only willing to do the extra-oral approach for these surgeries and hoping that is what Dr. Krempl did for you. I am quite certain there will be complications with nerve involvement and possibly artery involvement as well. What kinds of tests do they do to confirm (already had another CT and pan-am radiograph)âŚhow long did your surgery takeâŚwere you released to go home the same dayâŚhow long was your recoveryâŚwas the recovery painful or mostly just a reliefâŚwas neuro involved for any nerve damage or pinching?
Thank you for your story and offering to share your knowledge and experience with me - SO VERY MUCH APPRECIATED!
Trina Kizer
A CT with contrast will show if thereâs any blood vessels being compressed. I donât think MRIs will show any nerve compression; most people have to wait until after surgery to see what improves.
Shalom Trina,
I think my husband said it was about 2-3 hours??? Dr. Runkle was the one who did the surgery @ Norman Regional. At that time, Dr. Krempl did not do that surgery but, maybe
he does now or, he will send you to a doctor within the OU family at the Otorhinolarygology Clinic in OKC. For the recovery, it took me about 4 months because at the time I was
an insulin dependent diabetic.
I wonât lie to you, it was a hard surgery and it was very painful. I could not drink Daisani water but, I was able to drink Aqua Fina. Donât ask me why but, Daisani burned me a little
and because you are so raw after the surgery, you donât want to feel anything going downâŚAs for my hospital stay after the surgery, I stayed 4-5 days. As I said, it was a very hard
surgery. The only thing I say to you, to encourage youâŚis, do what you have to do. Living with ES is NOT an option. It was literally killing me and I did not want to live the rest of
my life in having a poking sensation under my tongue and feeling miserable.
I had young sons and I had to get well. I want to encourage you to pursue your healing with everything youâve got. I want to know when in September you will be seeing Dr. Krempl???
I also want to meet you there for support. I want to help you with all your steps in getting healed. I am 59 yrs. old, Hispanic female, been married to the same man for 36yrs. I have
2 grown sons who live up here in Edmond. My husband is retired and we both have health issues, LOL
I will help you in any way I can. I had no one to help me except my Elohim who I prayed to and he sent me from Houston, TX. to Yukon back in 97.
You can call me at my home phone at 405-â â â â .
Sandra Hemphill
So nice of you to respond so quickly to all my questions SarahâŚus ES people seem to be full of them! lol I feel the same as you, living a minute longer than I have to with this is not an option. I know all too well why this is also known as suicide syndrome. It is maddening!
Dr. Krempl is now the head of the ENT department at OU. He does have experience with ES but I have grown to distrust doctors over the many years of being dismissed as a hypochondriac. I am no stranger to surgery so Iâm not terrified of this surgery but I do have some reservations since I have had ES for so long, Iâm concerned about all the things that may be involved. Thus I will be seeking a second opinion from Dr. Baranano at Integris who says he has ES experience. Kremplâs office is trying to get me in sooner and have me on a call wait list.
I also have had a lot of dental issues - in fact having my last lower molar extracted on Thursday. I clench my teeth almost 24/7 and as a result have fractured a lot of my teeth. At least that is what I assume when I have pain, but ânothing wrongâ with the tooth. And a root canal does NOT fix it.
Too funny how similar our profiles areâŚI am also 59 years old, married for 35 years. Only one grown son who lives in Colorado. I am so happy that you are healed and no longer suffer with this.
Thanks Jules,
I was so hoping I wouldnât have to have yet another CT scanâŚIâm quite sure I glow in the dark at this point! But, Iâm prepared for whatever is necessary. From all the reading on this subject I have been doing, there is some sort of mapping to be done? Iâm readyâŚjust bring it on! LOL
Not all doctors want a CT with contrast; yes, itâs best not to have too many scans⌠for example Dr Samji doesnât. Iâm sure an experienced surgeon will be aware of any risks & will be able to work round them.
BTW- you mentioned about the teeth- I have Trigeminal Neuralgia, & I get toothache in several molars- I saw the dentist a few times as I presumed it was a problem with the tooth, but theyâre fine. Luckily I didnât have any teeth removed unnecessarily. (I think that the TN is caused by damage from the styloid processes) Could that be whatâs causing your toothache?
Morning Jules!
That toothache thing is a real struggle for me! I donât know if I have had teeth pulled unnecessarily or not, but it stops the pain! I try to determine how it achesâŚwhen it is super sensitive to cold and sugar and it sends me through the roof, I assume it isnât the ânerveâ from ES causing it. I really donât know anymore, but as I saidâŚit stops the pain. The one up for extraction has a 2nd crown on it! This is why I am now having them extracted (I will NOT pay for a root canal and a crown anymore only to end up extracting). I have spent a small fortune on my mouth and now I will need to deal with implantsâŚMORE money! Of course I wonât be able to do that until after the ES surgeries because of finances and not being able to tell whatâs real and what isnât. I have to take 1 tramadol and 1 flexeril every nite before bed just to relax enough to sleep for a bit. Iâve been doing that for 20 years and it really isnât enough anymore. I also have issues with pain medsâŚnausea is not my friend and most of them make me sick to my stomach. I had a great dentist at one time who made me a splint/mouth guard. It had to be adjusted often because my bite changes frequently. That old splint saved me and was the best 10 years of my life. Getting up in the morning without an excruciating headache was like I imagine heaven to be. Crazy as it sounds and just my luck, it turns out he was also a crack head and right in the middle of getting started on my lower bridges and such, he went back to the crack! Finding a competent dentist is way more difficult than you might imagine! I am NOT the textbook patient!!! LOL If I were to type up all of my experiences, it would take me a week or two. But it took a month to get insurance to approve my latest CT WITH contrast. The Neuro I saw a couple of weeks ago required a recent CT scan and I wasnât going to do it without contrast because I wanted that to be my last CT scan! My PCP ordered it and requested Cervical Spine and Eagle. The tech completely ignored the Eagle part and only reported on the cervical. So she assumed it didnât show what we needed to see reference the SP. Low and behold, the Neuro guy pulled up my scan on his laptop during my appt last week and had a clear view of my SP! However, he didnât give me any kind of diagnosis or summary of my visit so Iâve got to call and ask. Also Iâm going to call my PCP and see if she can call the radiologist and get a report on the SPs and what they are up to since they most certainly are visible on the scan! All of this orchestrating is wearing me out and I get soooooo frustrated! Because it is a catch 22âŚthey donât like it when you take control of your own health (some kind of ego thing I assume), but somebody has to.
What kind of tooth aches do you experience? And were you diagnosed with the TN when you had your surgery or was it a separate thing?
Wow, you have been through the mill! If getting the tooth removed helps, fair enough! (Benâs Friends have a Facial Pain group- theyâre really helpful & have lots of info. I read on there about people whoâve had dental work, & itâs made things worse, so I never had any treatment. It moves around between teeth too! Itâs a gnawing sort of pain). I had the toothache a while before I was diagnosed with ES, then had salivary gland problems, & it was during tests for that I was diagnosed. I still have a bit of pain after surgery, but it is better- it was getting worse before surgery with numbness on my face too, thatâs better).
The radiologists should be able to review your scan & comment on the styloids without needing another one, frustrating for you having to keep hassling people, it can be exhausting⌠Hope that you can get the report re-done without too much trouble.
Hey Jules,
I will jump over to Benâs Friends Facial Pain group and check out. I may have had some teeth removed early on that were due to ES, but it/they would start throbbing so badly I threatened to pull them myself and would have! I also have spent many moments throughout my days and nights digging at my jaw joints because they hurt so bad from the clenching/TMJ???
What sort of salivary gland issues did you have. I have had trouble with the right parotid for many yearsâŚthe left one is just getting started. I have a small mass in my right parotid (pea size) now that was scanned about a year ago (twice) My regular ENT ordered a scan and one of the ENTs at OU (2nd opinion) ordered a scan. The 2nd opinon looked at it felt of it and said he didnât know what it is, maybe just normal anatomy but sure it wasnât malignant. The 1st scan radiologist said it was all that was left functioning of the gland??? WHY oh WHY did they not notice the Styloid Processes at that time??? So, you can see why I just figured I must be crazy - CAUSE THEY ARE MAKING ME THAT WAY!!! lol
How long since your surgery and does the pain continue to improve for you?
Elongated styloid processes that show up in a CT scan taken for another diagnosis are frequently missed because so many doctors are unfamiliar with Eagles Syndrome. There have been a number of members on this forum who, after becoming symptomatic w/ ES, found they had elongated styloids which were visible in old CT scans. Sometimes these diagnoses came from other doctors as they reviewed the scans & in some cases, the members themselves observed the styloids & reported their findings to their doctors. It is an obscure ailment.
Salivary issues range from no saliva to hyper salivation. Headaches & jaw joint pain are among the more common ES symptoms.
Iâm so sorry youâve been dealing w/ this for so many years but am glad youâre finally getting answers.
They sent me specifically for CT scan to see if I had Eagles Syndrome.
Nothing showed on my CT, but specialist Dr. was willing to operate based on my EMT feeling the ES when he put me under. But she did say CT showed my carotid artery curved around where she didnât want to operate on outside. So did inside and âground it offâ . So how the hell did the CT scan not show anything?? Iâm with you all - sometimes the CT doesnât show stuff it should! Just know know that this has been living hell for now 3+ years! Almost 10 months since surgery and Iâm still in pain!
I had a stone in one of my salivary glands (sub-mandibular), same side as the ES was worse. I donât know if it was linked or not, I donât produce enough saliva, but also have dry eyes so it could be an autoimmune thing⌠Iâve not had any more stones since surgery, & less face/ jaw/ neck pain.
It would be so good if there was a way to raise more awareness about ES amongst the medical profession! I personally think itâs not as rare as theyâre taught, but that itâs more common & not diagnosed!!
Morning Jules!
Ouch on that stoneâŚreally uncomfortable when the saliva backs up! Have you had the lip biopsy to test for sjogrens? It isnât terrible, but mine came back negativeâŚgot that dry mouth going on too. I carry a bottle of water with me everywhere I go!
I completely agree with the ES not really being so rare! The awareness needs to change! I often find myself getting angry about all of it. Then I go back to being so thankful the doc finally realized what my problem is. Could it be that I wonât actually have to live my senior years in constant imaginary pain? The neuro I saw last week made the commentâŚwell they (radiologist) wouldnât know to look for them (SPs) unless they are told to! I would think it would be a glaring flag if you were looking at anything in proximity!
Happiest of Wednesdayâs to ya!
Morning Isaiah_40_31
Thank you for your words of encouragementâŚat least I can see a glimmer of light at the end of this long dark tunnel. Crazy with the salivation issues, not sure which would be worseâŚnone or too much! I swear I think I had too much in younger years and maybe thatâs why my parotid is dying - over worked? You guys have made such an incredible difference in my general attitude. Knowing I may get some relief is good for the soul, Iâve had some pretty dark days. As far as symptoms go, I finally sat down and put them on paper and I filled up 2 sheets of those little miniature legal pads. Getting rid of the pain is of course my first hope, but getting rid of this tinitus is second - maddening!
Happy Wednesday!
I decided not to have the lip biopsy- Iâd read of several people whoâd had lots of problems since having it, & also I donât think currently itâs bad enough to want to take the medications, so not too much point getting an official diagnosis. If things worsened, then I would. Iâve changed my diet, the ES is sorted, Iâm getting fitter & feeling great at the moment. Hang in there, hopefully itâll be your chance soon!
I totally understand the tinnitus issue! ES surgery did help mine for awhile but sadly I acquired Meniereâs Disease after a head injury from a bicycling accident & that is now the âjoyousâ ringing/buzzing I get to listen to on a daily basis. Iâm ok as long as thereâs noise (conversation, city sounds, etc., but when itâs quiet, the ringing in my ears takes overâŚ).
I get the tinnitus also. It comes on suddenly and I usually have pain with it but thankfully it doesnât last long, so far. It would be maddening to have it all the time. Itâs bad enough with the throat pain, headaches, facial nerve pain and so many other symptoms.
Good luck and may God bless.