Shock! I met a Doctor in LA who will do surgery--many questions to group now

General
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OK I asked for it and now I'm getting it. Any comments, questions, concerns will be greatly appreciated.

After 15 years, 2 failed surgeries, and 20+ reluctant doctors I kinda was giving up again. My medical group denied my latest referral to UCLA because they said they had a group at Cedars who could do the surgery in plan. I gave that no confidence. Yesterday, I met with an ENT for the first time, Dr. Henry Chen, who looked at my CT's, palpated my styloid (that always hurts for about 2 days following) and is going to schedule surgery for August probably!

It really bothers me that after all this wait, this took so little - is it a dream? This could have occurred 10 years ago after the last botched attempt.

I think I would rather have just complained until I died. Surgery scares me and with my ES history I have no idea what they will find in there. He wonders too. I appreciate his honesty about the condition of my neck after 2 surgeries.

He is a great doctor only judging from the things he said:

Intraoral this time since the scar tissue on the outside of neck will pose an access problem.

Offered to conduct a balloon shunt? on my 2 carotid arteries to see what would happen if my left one needs to be pinched off to compare blood flow and see if right carotid was able to handle flow alone. I told him that test didn't really matter since no matter what happened during that test, if it needed to be done during surgery it would still need to be pinched off so why bother seeing what would happen first with 2 more initial surgeries. Plus he asked if I have any family history of heart attacks, strokes or any other blood flow issues. I don't.

He showed me on the CT what he will remove. It only seems 1-2 cm longer than the one on the right but it does not feel that way-when I mentioned that he thought I was funny trying to teach him anatomy. A bit defensive but since I've lived with this for 15 years he can listen to my concerns and questions about what I feel in my mouth.

Doctors are sensitive.?!

He has done it before with no complication-am I supposed to ask for his ES resume?

He's from Colorado so that's a plus to me.

He said he will need to remove my left tonsil to get access. Anybody had to do this in conjunction with styloid removal?

I've heard that adult tonsillectomies hurt but I guess I'm having my throat cut open from the inside so a little more pain is insignificant?

I don't feel I'm going forward with this uninformed. Yet.

I'm so happy?

Please raise any questions-I might be so glad I'm blind to issues.

Shawn

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I have read that it is very common, almost mandatory that the tonsil be removed when the styloid is involved. So that sounds very reasonable. I guess the intra oral is the right approach if you already have scar tissue from the external. Didn't someone remove part of your hyoid instead of the styloid?. I get confused, but I remember that you have been suffering for a long time.

I know you are afraid of another botched surgery. After a botched tear duct surgery that left me unable to breath completely clearly, I was terrified of trying to get it corrected even though I had the first one done by another doctor with no problem. That doctor had quit doing adults and I could not get him to help. The second surgery was horrible. It took me 11 years and 3 excellent specialists later to finally bite the bullet and have surgery. Result, first time in 11 years, that I felt like I got air into my left lung clearly and fully. The doctor had to remove a piece of sinus that had been stitched to the tear duct area.

The decision to make the plunge is all yours, and it is such a tough one. Can you trust the doc or not? Will you get relief or not? We will be supportive of whatever you decide. So many prayers coming your way. I hope that someone on this site has heard of Dr. Chen and can give you some peace of mind. Did you ask how many ES surgeries he has done? That might make him defensive, but if he says lots or several or about 30, then you at least know that you are not the first, even if he might have exaggerated.. Sounds like he has some experience because he didn't give you any ridiculous answers.

Been waiting this long, take the time to think it through, a week or a month of trying to find out more about Dr. Chen might not hurt. Good luck.

Another question I might ask is "how he completes the intraoral surgery?" Badeagle's second intraoral doctor had to smooth off the remaining bone because the first one did not and the bone was literally stabbing him.

After my surgery, I went to Badeagle's second doctor for an opinion about my first surgery, he was satisfied that my surgeon had done a good job, though poking in my mouth did not help reduce the last of my pain. It is much better now. Several months out.

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Hi Emma--Thanks for the advice on the rounding off of the bone. Never thought of that so it is something to take up with him. But I never thought of asking about a lot of things that ended up happening, like removing my hyoid bone instead or only removing 1 cm of a 5 cm styloid. I relied on their skills-silly me. But who would ask if they are going to do such ridiculous things? That might be why the questions I asked Dr. Chen seemed dumb--but dumb things have happened to me so I need to open the door to my concerns.

I read up on him and the entire ENT group. They have a vast resume of experience. I need to contact another ENT friend I know.

Yes, botched surgery makes you gun shy--but with all my delays and effort to find a surgeon I forgot, now that I might have a date the trepidation is setting in. Watch what you ask for, you might just get it.

I am beginning to think the defensiveness of these doctors is to determine the relationship-and that they are in charge. I can't let that happen. It is our relationship not just a one-way street, so I hope I made it clear that this is very important to me since its been 15 years and he needed to respond to my questions-which he did. His comment would have normally cowed me but no more. I said before I pity the next surgeon who gets me since I'm knowledgeable and tired.

He said over 20-successfully done. He has no complaints filed.

thanks, shawn

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That is good news Shawn. I agree with emma. It is ok to be nervous considering your past surgery. Keep us posted on your journey. Try to remain optimistic and hopeful. Take care.

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Shawn, I agree with Emma and Bigsbug. Hang in there, my friend, and don't let the tonsil thing scare you. I understand where you are coming from about doctors and botched up surgeries. I was afraid going into my surgery knowing what happened to me in the past. I followed my gut feeling and went forward. Time will tell if my symptoms will diminish but I hope that some of them are gone. Take care and do your research to feel comfortable with your decision. O.K.!

Viperbone

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Hi Viperbone (Formerly known as viperbone!) How's Viperboneless? I don't mind the tonsil taken out--all of his comments and procedural descriptions show me he know what he's doing more that the others. OK, that's not the greatest complement, better than the worse but its better.

Bigbugs-I had such a positive surgical history and outlook. It great docotros destroyed that now its up to this one to restore my faith in medicine. A large burden I think he felt at our meeting.

To every body.......any questions I should ask you can think of would be great. I've asked all the ones based on my history. Have any based on yours you think should be addressed?

Shawn

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Sounds like he knows what he is doing. and if he is offended by the questions, just remind him that any dumb question you are asking is because these are some of the things that caused some of us to undergo second surgeries or live in pain for a lot more years. It is not that you think he is not capable, you just need reassurance from him. Let him know that you need to ask the seemingly dumb questions for your own comfort.

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Hi Emma; Thanks for the assurances.

I know the drill that's why I refuse to be cowed by them anymore. My history should be enough for them to realize what I've been through and to just shut up and listen and answer my questions and concerns that have developed over the past 15 years. I think he did, he just had other patients and didn't expect to spend so much time with me. He has already contacted my Primary and group ENT to get information so he seem thorough in the pre op respect.

My group ENT just called to tell me he talked to Dr. Chen and to let him know when this is done-he wants to hear the fat lady sing and close the 15 year book on this. He knows Dr. Chen and has every confidence in him looking at my CT's and the procedure Dr. Chen has mapped out-tonsil and all.

What do they say in South Park "there are no dumb questions, just dumb people". I've run into enough of them. He seems open to my panicky mode and did back off of the "teaching him anatomy" comment. I realy was just commenting on the CT pictures and voicing surprise at the length of my left compared to the right one that was shortened in 1990.

So here we go-again, again, again, again--wow I'm tolerant.

Thanks and if you think of anything let me in on it.

shawn

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Hello supporters;

I found out from my UCLA doctor what he thought he saw in my CT scan. He thinks I have Carotidynia, a tenderness of the carotid artery cause by the proximity of my styloid to the artery. Dr. Berke at UCLA said the best way to get the styloid removed and have a better chance to reduce the carotid pain is through the neck-not through the mouth. I've asked all my doctors to consult each other so they are on the same page when one cuts me open. Anybody have this diagnosis on top of the ES? It would explain my pain in my neck below my ear.

I have lots of opinions; I just want 2 to agree and none do.

It also known as Fay Syndrome-another syndrome (FS). So I have FS caused by ES!

Any info would be great.Shawn

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Hello Shawn. I haven't heard of carotidynia, but it doesn't suprise me that it's due to your styloid. If you have your surgery intraorally, the tonsil is normally removed. I had intraoral surgery in April. Its not too bad. I already had my tonsil out from a previous Doctor who misdiagnosed my styloid as a mass in my tonsil. Both surgeries were about the same. I'm interested to hear about what your doctors will agree on. Dr Chen sounds like a good doctor. Please keep us posted. -Dawn