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tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

I'll try to make this short. My regular ENT found my tongue tumor and referred me to the best H&N surgeon in the city. He is the only one to use the TORS too so this was a no brainer. Here is the problem with him treating me.

As far as a surgeon, he saved my life. Very skilled and takes his time. He did the partial tongue removal and radical neck dissection two months later. On both operations I never received decent pain relief. The suffering I went through with my tongue was the worst 10 pain I've ever had. Trying to get some stronger medication wall impossible. He came right out and said "I don't want to talk about it". My wife would love to strangle him BTW. Even in the hospital the nurses were very frustrated because they saw how much pain I was in and had no power to change his mind. Oh well, that's over and done and it turned out okay.

The second thing is whenever I saw him he of course scoped me. He would bill my insurance for surgery and I had to pay $150 co-pay for every visit so far. That sure added up when added to the rad bill.

Thing is I don't want to continue the follow ups with him anymore. I am supposed to see him and my rad Oncologist every two months since treatment ended. What I want to do is go back to my ENT and let her check me and coordinate with my Oncologist. What do you all think? It's not that I can't afford the extra bill, but I am still very mad about the pain relief. Is this a stupid move? My Onc doesn't want me to change but I just can't get over this.

BTW, my first PET since treatment ended (April 3) is tomorrow. I have full confidence that it'll be negative.

Thanks for letting me get this off my chest.

Tommy

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I am all for being appreciative of someone who saves my life however, you matter too. If your onc wants you to stay with a surgeon I would stay with a surgeon but I'd find one with as much skill but more compassion. Nobody needs to suffer that kind of pain. I do know that with certain throat surgeries there is tons of swelling and when a patient is over medicated there is a risk of him/her not breathing if the airway gets closed off and they are too medicated to realize it. People have died from being over medicated with these types of surgeries, while rare it does happen. Perhaps this was your surgeons concern but he could have explained this to you and not said he didn't want to talk about it. I would honestly either find a new surgeon or do as you said follow up with ENT and onc. I love my surgeon and I left my prior one because he was such a jerk! He is world renowned, several celebs have gone to him here in Los Angeles but no thank you, not for me....this girl needs a little hug now and then not some arrogant surgeon who is cold hearted.
Good luck to you I know it's not an easy decision.
Billie

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

as my personal feeling is that the anger clouds and obscures the clarity of the situation. There is absolutely no reason why you can't continue to see this guy a couple of more times and keep him available in case you should need him again. Surgeons are control freaks because they know it's a rare and specialized skill set and are proud of it. My surgeon is also very proud but I trust those hands explicitly. Thats why you chose him so keep those options open. Continue to see the ENT as he/she will be looking at different areas of your throat. 8 months down the line you and proud surgeon man can part company amicably. Billing nowadays is just insane. Perhaps they have to code it as surgery to get reimbursed by insurance. My Otho surgeon billed me for surgery in his office for draining fluid out of knee with a needle. This is our fault in many ways because we never ask a doctor how much something will cost and I don't advise you start with proud surgeon man.

hwt's picture
hwt
Posts: 1834
Joined: Jun 2012

Might consider keeping the surgeon and speaking your piece. Basically, what you just said was "I am forever grateful for what you have done for me but I have to be honest, I was disappointed with the pain management and when you scope me in your office, your staff codes it as surgery so I have a $150 copay". Hopefully, it will all work out and you won't need to decide.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Sorry you had to endure pain that you shouldn't have had....

My ENT was also my surgeon, as for the tonsils coming out. He still scopes me, but has always been good as for pain meds.

I know you feel a certain sense of loyalty, but he's a professional..he did his part and did it well. But as for the scopes your ENT should be your main man now through maintenance and recovery.

He obviously is qualified, he detected your problem from the start.

I don't even understand why your surgeon is still involved personally.

Either way, I would definitely entertain the idea of moving to your ENT for your follow-ups, though with my ENT being both the surgeon and the ENT...I don't know where one stops and the other takes over...both I presume.

Your follow-ups are different than mine.

My ENT and onco both had me one a 6 - 8 weeks follow-up schedule the first year..rads MD only saw me at six months and a year post Tx.

Second year, cut loose from the rads MD...3 - 4 months on the ENT scopes and chemo MD follow-ups...mainly blood work and scans.

Third year was and remains at around six months...

Best,
JG

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

honestly, there are good doctors everywhere, so dont feel like you are stuck with this result. I dont know what this guy's problem is with pain management, but it is his problem, not yours. You would have been within your rights to insist on another opinion, right in the middle of your acute hospitalization. If this guy did the surgeries, the scopes should likely be content of service. No charge. The scope is performed during a routine follow up visit, right? Start by talking to your insurance company and learn the rules regarding this as they pertain to your situation. The oncologist isnt important in your follow up. Surveillance by a competent ENT, or ENT oncologist is. You might even feel your ENT out to see how comdortable he is doing your followup, by himself.

Pat

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

how talented this guy is, a surgeon that would let his patient suffer the pain you describe is a di**head in my opinion. The problem as I see it, is this guy knows your history, he saved your life...do you really want to have to find someone else, if, God forbid something goes wrong? I would get the PET, go for the results and tell his head nurse/ office manager that you are going back to your original ENT, that you're eternally grateful for the skill of this guy and you'd be happy to come back yearly for follow-ups or if, like I said, something else would show up. Keep the option open, until you can research other surgeons. Just my opinion and I have great admiration that you were able to withstand this neglect

CivilMatt's picture
CivilMatt
Posts: 2838
Joined: May 2012

Hi Tommy,

Your bus must have taken a turn at Pain Lane. What a terrible time for you. I can’t imagine a doctor holding back (needed) pain medication. If you are through with surgeries, I would opt for your regular ENT. Part on good terms and keep him in your rolodex.

Best,

Matt

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

If it's just follow-ups in play, then I would say "Thanks, but adios, Doc," to the Surgeon. ENT should be able to deal with all your needs. And, as noted, there's always alternatives in regards to Drs, including hospital systems and Surgeons affiliated with them.

As I've stated many times, a major part of a Dr's job/responsibility is to also make it so that what is done all goes down in an acceptable way for the Patient- and that is talking about the level of pain. You shoulda had my Drs, Tommy- I was told on my first Onco visit that with what they had planned for me I would be on morphine, which I was by the early part of week #2. Though there must be criteria/standards with what is normally prescribed, it sure does sound like this Surgeon of your's must skipped-out on the pain management classes in med school. Does remind me of a long ago discussion pertaining to Drs really knowing what the H&N experience is like for us, and what if they went thru it. Uh-huh- hey, Doc, put yourself in my shoes...

kcass

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

that hurt my heart to read that kind of pain.

Lots of good opinions expressed, I will add mine.

I agree not to make the decision in frustration / dislike for how you were treated (that's gonna be hard to do anyway) but rather make the decision for your "total" body (mind and soul).

I think you should find another replacement that you fully like and then let this guy go, diplomatically (don't burn the bridge).

OR ... you could even do what I did one time with a genetics doctor in MS who had horrible bed-side manners with my wife and son, son has PKU ...(I mean this guy was AWFUL)..I wrote him a letter how we felt and in that letter I apologized if we had done something to cause his attitude towards us. I informed him in my opinion his wealth of knowledge and expertise were all negated by his very poor bedside manners towards my wife. We had located another genetcis doctor 3 hours away and would be going to that doctor (it was a quarterly appt). The doctor probably could have cared less if he even read the letter...but it made me feel better :)

Best to you Tommy ....

Tim

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

I appreciate all the support and will go see my old ENT and have her work with my Rad Onc together.

The surgeon I was referred to is a M.D.,F.A.C.S. Professor, Chief Division of Otolaryngology, Head and Neck Surgery. Wheh! That was a lot! So he is highly skilled. But what happened was that when I first saw him and filled out the new patient paperwork I told him I was already taking Norco 10/325's for a back injury. I did not refill those before surgery because I assumed he would give me something stronger for the pain. Nope. What he prescribed was Lortab 7.5's. A weaker pain med. It took begging just to get him to prescribe 10mg's. BTW, I am off all pain meds now. So that is what I was dealing with. My family Dr. who gave me the Norco said I should have been given Morphine or something of that strength. So that is why I am still angry. His lead office person said he is famous for under prescribing pain meds. I am not the first to complain. Okay, enough of that.

This morning I stayed very still for my PET scan so it should be about a week before I know anything. Like I said before, I am not worried one bit. Okay, maybe just a little bit.

You all Rock in the support division!

Tommy

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Uggg, I couldn't take it without getting sick feeling, and it did nothing for my pain..least in the dosage prescribed.

I tried it a few times, went back to the oxy or hydro...which worked much better for me.

I had to dissolve them in a little water while the throat was tore up...., which was the only time I really needed some pain management.

JG

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

Your experience with pain management was just the opposite of mine. All of my docs were very sensitive to my pain levels, and said many times "If you need something, just ask." I understand that your doc might be worried about you developing a dependency, but that is another problem for another time--if it would happen at all.

Good luck on the results of your PET--may it be the best three letters in the alphabet for HNC patients--N E D!

mike

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hoping for great scan results.

katenorwood
Posts: 1808
Joined: May 2012

Tommy,
I'm really late with this post...sorry. I hope your pet was a good one, but as most of us know... needing to be followed up by ct or mri. I feel your frustration...and yes I'd be pissed too ! I can't tell you what to do....but I will say follow your instincts in this one. We all have that inner voice, and if we would trust ourselves I'm thinking we'd all get better care. Warmest regards Tommy and good luck ! Katie

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

There is no reason for a patient to put up with a doctor with a non-compassionate attitude. I don't care how good he is, there is another doctor with the same skill set waiting to take over your case. In my profession, over the years, I have come into contact with many, many doctors. Every once in awhile, you come across one with a "God complex." One who thinks he is above all others. Thankfully, they are few in number. You should always feel comfortable with the person who is looking after your life. Don't be afraid to change doctors if that is the case.

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

Thanks George and everyone for the kind words. But I could not change doctors unless I went 300 away to California. At least that is what my ENT said. So he was my only and best choice albeit suffering with pain. And the only one certified to use the TORS.

I have asked myself what would I do different if this comes back. Probably use the same surgeon but go to a pain specialist or my Onc first so I don't suffer.

jbob1981
Posts: 12
Joined: Feb 2010

I am wondering if you and I go to the same surgeon. I am dealing with a lot of the same issues as you including the scoping everytime I see him. Is the Doc you are referring to located in Philly?

tommyodavey's picture
tommyodavey
Posts: 351
Joined: Nov 2011

Hi jbob,

No, mine works out of Las Vegas, NV. In his defense, I would probably do the same thing. The insurance doesn't pay very much so he is adding as much as possible to the bill to jack it up. What he billed for my surgery and what they paid was an insult to his talent. It's no wonder Dr.'s cram as many patients as possible in a day to make up for the pittance of the insurance payment.

I probably should have talked to him about it but I am still angry about the pain not being managed. Never again.

Tom

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