ENT cancelled surgery

General
41

Shindig--move on to the next Dr you can ID. A head/neck surgeon or a skull base surgeon. My last surgery-successful after 2 "tries" was in Sept 2013 and was good and it is short.

the Dr you get needs to say it will be removed-not shortened, snipped of or anything else less than cut back to its original length-about 1cm.

I've been through it all-delays, failed surgeries and Drs. cancelling and telling me to find another. A neurosurgeon is not appropriate.

My last one did a very good job in Sept 2013 in LA.

I read this and had to respond as I see nothing changes in our quest.

This doctor hunting is more wearing than the ES at times and I can't understand why. But keep moving on to new Drs don't go back even though its tempting. I don't think you need an expert just a dr who know how to cut. An expert removed my hyoid bone by mistake so that's no guarantee.

Good luck and keep in touch. hello everybody!

Shawn

42

Need an LA doctor let me know I have 2 who are experienced in this but are also good surgeons and that takes precedence.

43

I've had a complete nightmare at UW. I had a visit with the physician's assistant for the pain clinic, she walked in and asked if I knew what we were supposed to talk about, saying she usually has notes but the doctor didn't leave any.

Within a couple minutes she pulls my name on the computer and says you have to stop taking oxycontin which I've been prescribed through my neurologist for more than a year. The PA says you're only 30, what are you going to do when you're 40? I said I won't be alive when I'm 40 if I don't get this pain figured out.

She wrote in my notes that I'm a druggy, have developed dependency to opiates, blah blah, with no real knowledge of what things were like before I found a medicine regime that worked.

So yesterday I had a follow up with my neuro and told him about the nightmare at UW. He looks up my notes and reads the part about dependency and says I'm not comfortable treating you anymore (after 2 years), that's why I referred you to a pain clinic.

I guess I'm not convinced eagles is the reason for my facial pain. I have neuropathic pain across my face to my eye. As well as a knot in the back roof of my throat going forward along the left side roof of the mouth.



eagleheart said:

I also saw a dr at UW who agreed to do the surgery but had never done it before. He said he'd team up with some other doctors. He never followed up on it and I couldn't get anywhere else with him, but I decided I wasn't interested in being his first surgery, anyway. Don't think his name started with F, but I can't remember his name anymore after such a long time. Some young guy that seemed capable and was able to find the styloid, but I don't like to be a learning experience.

44

That's terrible shindig. I had a bad experience with a pain doctor, too. He hurt me with a bad injection and to try to cover his tracks he dumped me and referred me to a psychiatrist. Very offensive.

45

Shindig, Eagles can definitely cause facial pain. The styloid is right there by the facial nerves. I had glossopharyngeal neuralgia pretty bad and it was cured when I had my Eagles surgeries. I've read that trigeminal neuralgia can also be caused by Eagles.

46

Ok this is really CYA for them-they give you the meds to deal with the pain then act like its your fault so they can't be held responsible. I went to the pain center at cedars and Dr. Graff-Radford listened to my history and after suggesting many pills I've been on recommended removal--after 15 years wow! but it was the start down my road to surgery. drugs do nothing so we should have it removed. Wow! quite a novel idea. But I finally had surgery.

Shidig--do you have your scans? Anything that shows your styloids? My best pics were a panorex--reading the posts there is always this thing we need to do--to get so much info to get the doctor to operate and they still don't. I think its just luck to find the one who will do it. Then we start trying to convince ourselves that our symptoms are there. because we have so much time to kill between diagnosis and action.

I forgot how quick medicine can be--in 1990 I was diagnosed with ES on the right in sept. and it was removed in November. In January I was diagnosed with bladder cancer and 1 week later the tumor was removed.

I do not get this snails pace of nothing ness. do it or get me to another doctor! they just make you wait and then tell you are addicted to rx's they gave you? To quote monty python--"intercourse them".

Can you go to another doctor? if I follow your trip----They have no records don't know what to talk to you about show they are amateurs, but whatever it is, it's your fault. move on now-these doctors aren't doctoring-they are wastes. or is it "do the most harm".

If this is their reasoning advise them that they are the ones who prescribed in place of operating. turn it around and ask them what are you going to do when you are 40? since they are so worried. It might not help but getting it off of you is a great feeling.

Tell them to lead, follow or get out of the way. You are stuck in the viscous circle and you need the exit with this group.

I'm speaking from experience and it only ended by blind luck when my uncomfortable cedars ENT sent me to UCLA head & neck and my cedars insurance saw the fees and found doctors in house to save money. same avoidance but the outcome was good this time.

I'd been to USC, Cedars many times, UCLA, CU med in Denver and then I see doctors at cedars I'd never heard of and they were there all the time-even though my surgeon might have been in chief intern in Denver when I went there.

I know its hard to look elsewhere since I didn't because I thought one more appointment will convince them--no not true. One appointment is all it should take to get surgery if the doctor has any smarts.

That became my mantra-one appointment if I don't see light in their head I moved on.

I was in so much pain "don't waste our time" was my exit line.

good luck and move on you really don't need this crap I've read. wow I had a bitter 15 years!

47

Shaw
Who did you see at Cedars? I’ve been to House Ear Clinic, UCLA and Cedars. I had one styloid removed need the other one done.

48

Ruth--no names. I'll send you in private.

49

Ok thanks



shaw said:

Ruth–no names. I’ll send you in private.

50

oops I forgot I sent you friend invite.

51

Heidemt-- my son has glossopharyngeal neuralgia & I believe eagles. I have been told he cannot have both & have been advised that I should do MVD for the GPN first. We have second opinions coming up soon. How did you decide to do treatment for eagles first? Did your doctors see compression of the GPN in your brain? Did you have ear pain before your throat pain started? Would love to hear from you.



heidemt said:

Shindig, Eagles can definitely cause facial pain. The styloid is right there by the facial nerves. I had glossopharyngeal neuralgia pretty bad and it was cured when I had my Eagles surgeries. I’ve read that trigeminal neuralgia can also be caused by Eagles.

52

You can definitely have both. Lots of people do. This makes me so mad when doctors tell people things that are blatantly wrong.

The doctors were trying to manage my GN by medication. Baclofen worked the best for me. The GN pain came first, then I started feeling like I had an ice pick in my neck. That's when I started realizing I had Eagles and I also thought the styloid was hitting the GN nerve - and as it turned out I was right. The doctors didn't do any tests to see if I had compression of the nerve - I was diagnosed by my neurologist by the symptoms I explained. The neurologist didn't know about Eagles and I don't think he believed me. But I had an intra-oral operation for the Eagles by my local ENT and about 90% of the GN went away. Then when I had a revision surgery on that styloid, the GN was resolved completely.

I sure would hate to see your son go through something he doesn't have to. I honestly think it's very likely the styloid is hitting his GN nerve. My left styloid was the one causing the GN and it was shorter than my right styloid. I don't remember how long it was, but it wasn't super long compared to a lot of people on here. I really think if at all possible you should try to go to one of the experienced Eagles doctors and get his Eagles fixed. I think that could resolve a lot of his problems.

Ear Mom said:

Heidemt-- my son has glossopharyngeal neuralgia & I believe eagles. I have been told he cannot have both & have been advised that I should do MVD for the GPN first. We have second opinions coming up soon. How did you decide to do treatment for eagles first? Did your doctors see compression of the GPN in your brain? Did you have ear pain before your throat pain started? Would love to hear from you.

53

You are the ONLY person who believes what I believe to be true. Have you seen any medical documentation that supports that GPN and Eagles have existed in the same individuals? I would love to have copies of those. Or do you just know from talking to people on sites like these? We do have a 2nd opinion but not until the end of June with Cognetti (I have read a lot about him on this site), but 3 other ENTs have said no to Eagles just because it is too rare and he is so young and unlikely because of GPN and PM....etc. We are moving forward with the MVD because my son is debilitated and is begging me for the next surgery to help him and so far NO ONE will do the styloidectomy so we have no other options. They just are "not comfortable" with it. Meanwhile, he is in pain 24/7 with almost no relief at all. We have tried a dozen medications over the years and nothing is helps or is without severe side effects for him. The pain does spike throughout the day, but he is never pain free. Was your pain constant with spikes like my son? Eagles makes so much more sense to me because as it turns out, he has calcification of the styloid process on both sides and his pain is bi-lateral. He did have his adenoids out and all of this started a short while after that. If it can happen after a tonsillectomy, why not after an adenoidectomy? The doctors just don't know enough. I just keep praying and we have more information now than ever! 6 months ago I didn't know about GN or Eagles...I am so thrilled to hear that the styloidectomy worked for you. My son is having shooting pain in his neck now too. I have so much hope. I call Cognetti's office every day and ask for cancelations so I can possibly get him in sooner.

heidemt said:

You can definitely have both. Lots of people do. This makes me so mad when doctors tell people things that are blatantly wrong.

The doctors were trying to manage my GN by medication. Baclofen worked the best for me. The GN pain came first, then I started feeling like I had an ice pick in my neck. That's when I started realizing I had Eagles and I also thought the styloid was hitting the GN nerve - and as it turned out I was right. The doctors didn't do any tests to see if I had compression of the nerve - I was diagnosed by my neurologist by the symptoms I explained. The neurologist didn't know about Eagles and I don't think he believed me. But I had an intra-oral operation for the Eagles by my local ENT and about 90% of the GN went away. Then when I had a revision surgery on that styloid, the GN was resolved completely.

I sure would hate to see your son go through something he doesn't have to. I honestly think it's very likely the styloid is hitting his GN nerve. My left styloid was the one causing the GN and it was shorter than my right styloid. I don't remember how long it was, but it wasn't super long compared to a lot of people on here. I really think if at all possible you should try to go to one of the experienced Eagles doctors and get his Eagles fixed. I think that could resolve a lot of his problems.

Ear Mom said:

Heidemt-- my son has glossopharyngeal neuralgia & I believe eagles. I have been told he cannot have both & have been advised that I should do MVD for the GPN first. We have second opinions coming up soon. How did you decide to do treatment for eagles first? Did your doctors see compression of the GPN in your brain? Did you have ear pain before your throat pain started? Would love to hear from you.

54

ER MOM, responding to your request:

Have you seen any medical documentation that supports that GPN and Eagles have existed in the same individuals? I would love to have copies of those.

Referencing a research article published in the Journal of Neurosurgery, "Eagle syndrome may be considered an entrapment syndrome of the glossopharyngeal nerve. It is a distinct clinical entity that should be considered when evaluating patients referred for glossopharyngeal neuralgia,"

Shin and colleagues published their study in the Journal of Neurosurgery (entitled: Entrapment of the glossopharyngeal nerve in patients with Eagle syndrome: surgical technique and outcomes in a series of 5 patients Clinical article. Journal of Neurosurgery, 2009;111(6):1226-1230). Here is a link to the full article:

http://www.lexisnexis.com/hottopics/lnacademic/?verb=sr&csi=270193&sr=HLEAD%28Eagle%20Syndrome%20New%20data%20from%20University%20of%20Illinois%20illuminate%20research%20in%20eagle%20syndrome%29%20and%20date%20is%202010

The abstract states: "For additional information, contact K.V. Slavin, University of Illinois, Dept. of Neurosurgery, M-C 799, 912 S Wood St., Chicago, IL 60612, USA."

Here is a link to info about who Dr. Slavin is:

http://chicago.medicine.uic.edu/departments___programs/departments/neurosurgery/faculty_and_staff/k_slavin__md/

My physician contacted Dr. Slavin and he agreed to perform a styloidectomy on me based on a single ENT report of eight years of symptoms and a screen shot from a 3D CT scan showing elongated styloids. He does external approach which I am of the opinion is the best way to approach it. I have ended up scheduled with Dr. Samji for surgery the end of June '14 simply because it is closer for me.

There is no reason you need despair over the opinion of physicians that are ignorant of and don't understand this syndrome, there are many of them. There are also many that do have insight into it. I would encourage you to print the academic article and give it to your uneducated physician for the benefit of the next ES patient he/she comes across and continue with what you understand to be true. Also, there are many more scholarly articles to support your experience that just the one provided above. Hope this helps.

55

EAR Mom -

sorry ...the link to the article above is only to a summary about the finding reported in the actual article. Here is a link to the actual journal article.

http://thejns.org/doi/full/10.3171/2009.1.JNS08485

I've also attached the article in PDF along with a second article about the same subject - also by Dr. Konstantine Slavin.

■■■■.1.jns08485GFNEntrapmentwithES.pdf (2.77 MB) 535-jns.2002.97.1.0216_SlavinCasereportandreviewoflit.pdf (86.6 KB)
56

THANK YOU ALASKA EAGLE! Thank you for taking the time to find these and post them. I will read, print these and add them to my collection as we move forward. I agree that doctors can be ignorant, but the ones we have seen are supposed to be the "best of the best" and it is hard to challenge them without medical support. It also wastes my time and money because now I need to wait to see the next doctor at my child's expense. Every visit takes time and the waiting in between is as hard as the pain the condition causes.

Alaska Eagle said:

EAR Mom -

sorry ...the link to the article above is only to a summary about the finding reported in the actual article. Here is a link to the actual journal article.

http://thejns.org/doi/full/10.3171/2009.1.JNS08485

I've also attached the article in PDF along with a second article about the same subject - also by Dr. Konstantine Slavin.

57

I completely understand EAR Mom. Now you know the facts you don't have to waste your time and resources with people who don't. It's not their fault, they just don't know what they don't know. But you do.

In my search for someone closer, my physician had also tried a referral to a neurologist at Oregon State Health University. The man was arrogant and condescending even on the phone with talking with my doctor. He took the attitude that he was the specialist and "yeah, sure you have a patient with ES...do you know how rare this is?" My physician remained steadfast and finally got him to agree to review the chart notes and images for consideration of scheduling a surgery. He stuck with his guns and specifically made the point that I was looking to arrange to travel for a pre-scheduled surgery based on review of already complete medical records. Then the guy had the audacity to call me and instruct that I should travel to see him for him to do a work up and evaluation on me and that if he diagnosed ES he would then refer me to an ENT for surgery. Seriously!!?? I told him, "No thank you. That won't be necessary, I already have a diagnosis." What arrogance! I was dumbfounded.

The thing is...it is all intimidating. As you pointed out, they are supposed to be the best of the best. I wouldn't have known to run from that situation had I not heard so much from my own doctor about competition among the disciplines for "interesting cases." Also, the anecdotal stories about cancelled surgery, etc. on this very site have given me insight into the ways we can be given the run-around as well. I'm grateful we all have this platform in which to share insights and experiences. EAR Mom....trust your own judgement and don't be intimidated...you know what you know and you can empower your son to stand up for his own experience and get the help he needs as well. Best of luck to you. Keep us posted.

58

Here is another article I found in a past discussion. This article states:

" The most common secondary cause of neuralgia is the Eagle’s syndrome or styalgia. It is a glossopharyngeal nerve hyper-excitability syndrome caused by compression of the nerve against an elongated or fractured styloid process or a calcified stylo-hyoid ligament."

http://www.sma.org.sg/smj/4010/articles/4010ra1.htm

I know I've seen other articles too. I'll keep looking for them.

59

There are two articles in this discussion that would be helpful to you Ear Mom.

http://forum.livingwitheagle.org/xn/detail/6309075:Comment:15597

In the MedScape article, the first page discusses that the length of an elongated styloid varies greatly. On a subsequent page, it states that GN can be a differential diagnosis for Eagles.

60

Thank you heidemt. I have not seen this one either (the one from Singapore). I will read it tonight. I have seen the NIH documents and the PubMed abstract (but can't get the full article), and I have even asked our pediatrician to order the full article from numerous CandaPubMedCentral and PubMed abstracts. Unfortunately, the doctors we have seen to date use >3cm as a standard regardless of the range documented and the fact that my son is a child. Thank you so much for taking the time to find these links for me. Thanks to this research, I am more determined than ever to see Cognetti before we allow MVD surgery. A styloidectomy would be easier than brain surgery. Is there anyway that either of you are aware to see the vessel complications surrounding the styloid process? Does an MRI of the neck show the vessels in relation to the styloid process? I didn't read anything that stated that it could be seen pre-surgery. Curious.

heidemt said:

Here is another article I found in a past discussion. This article states:

" The most common secondary cause of neuralgia is the Eagle’s syndrome or styalgia. It is a glossopharyngeal nerve hyper-excitability syndrome caused by compression of the nerve against an elongated or fractured styloid process or a calcified stylo-hyoid ligament."

http://www.sma.org.sg/smj/4010/articles/4010ra1.htm

I know I've seen other articles too. I'll keep looking for them.