Today I had my 3 month followup with my ENT and we discussed (yet again) the idea of a coronoidectomy. Last time I had seen him I had asked about a second opinion and he had given me the name of the doc he trained with as Wash. U. Medical school in St. Louis (I live in the Northeast). I looked that doctor up and he is (at least) 63 years old which, to me, is right on the edge of too old to be doing a surgery requiring fine motor skills. I know when everything is taken into consideration, eye-hand coordination is a smaller part of being a good surgeon than it would seem(experience, decision making and judgment being at least an equally important part), but still, at some point a surgeon just gets too old to operate--for my grandfather, a pediatric cardiac/thoracic surgeon, it was younger than age 63 and even before he retired from doing surgery totally, he was reallty supervising med students who did all the cutting (and since this doc is also at a medical school I suspect that would also be true here).

I am also not really in an economic class where I can easily afford to just fly halfway across the ccountry for an opinion or for surgery. Espeically given what the last few years of cancer treatment and checkups and surgery to help my swallowing have done to my/our bank account (I have insurance but I have also ended up paying about 2 K each year of my own money). Though I can afford it if I felt I absolutely had to.

But my ENT here is saying he can do the surgery here with an oral surgeon who has (some) experience doing these operations too and whose judgments I trust. I trust my ENT too basically although I do worry he may be a little overconfident sometimes.

So I asked him to go ahead and contact the oral surgeon to see if they could coordinate this. I will have an appointment with the oral surgeon too before I have the surgery.

I am still looking for anyone here who has had this surgery or knows of a doctor at a major medical center somewhere in the midatlantic/northeast region(at least one connected with a teaching hospital) where I could get another opinion that this was a good idea.

My ENT said he thought it would help with the jaw cramps I've been having as well as the trusmus--that, in turn, would help with dental care and using the bougie. And if I can easily use the bougie everyday, that would mean I wouldn't have to keep going back for throat stretching. Less jaw cramps would help with swallowing and swallowing exercises not to mention mean I couold teach in a classroom without having to stgop and wait because my jaw is cramping so badly I can't speak. It sounds like those outcomes are worth some pain and discomfort from the surgery. But I'd be very interested to hear anyone else's experience.

Nelie

Hi Nelie,


I have a few names in mind in the Philadelphia area and I could also contact my head and neck surgeon at Fox Chase if you would consider coming down here.

Just give the word and I'll make a few phone calls.

Jerry

Jerry, Yes, anywhere in PA is within reasonable driving range I'd say. I probably would be wanting to get in for a second opinion on the surgery within the next few weeks- I don't know if that would be possible with any of the folks you have in mind but I would very much appreciate any assistance you can give. Thank you for offering!

Nelie

Nelie
My husband's ENT just gave him an article regarding Coronoidectomy. You probably have done way more researching on this, but just in case, here is the link : http://www.laryngoscope.com/pt/re/laryngoscope/abstract.00005537-200711000-00012.htm;jsessionid=LZ6JTJHMJWpk3Jv1kS1YGrsWv1WTTTL62GVS0lCQcx3TJJfmnvyP!-2001756042!181195629!8091!-1
It was written by a number of Doctors, one of which is here at the University of Washington (thankfully.) Curt's doc thinks this will be something to look at after he's tried the Therabite and Botox.

Lori

Hi Lori, Thanks for the link--I actually had found that article already but I think it's good to put it here in case someone else may be interested.

As I posted elsewhere, the therabite doesn't work so well for me in increasing my mouth opening--it maybe adds 2-3 mms, though it does seem to help with the jaw cramps somewhat. What does the Botox do? Is that something that helps with trismus or just freezes the crampy muscle (it's not a treatment my ENT mentioned to me)?

After asking around (thanks Jerry), I am a bit more reassured that the right thing to do is have the surgery here because of the followup and physical therapy that is needed afterwards. I have a lot of confidence in both doctors who will be doing it. Unfortunately, I have less confidence in the hospital here, which has royally messed up a few things in my experiences with them in the past BUT its the only hospital I've got to work with so I will just take along my husband and hope he will be vigilant about what is being done if I am too out of it.

Nelie

Nelie
My husband's spasms are so bad now that I suggested Botox to him. I'm an OT in a rehab center and have worked with this amazing Physiatrist (rehab doc) for over 25 years. She does a lot of Botox with brain trauma patients to reduce spasticity and gain range of motion. She examined Curt and said she thought him to be a good candidate. She won't be doing it, however as she does primarily larger muscles. So, she referred us to a Doctor in a neighboring town that she knows and respects. What will it do? Who knows. Hopefully quiet the spasms down for a while anyway. Again (like acupuncture and many other treatments) no guarantees. But, nothing gained if we don't try. He's pretty miserable. I think I frustrate his ENT and oncologists as we continue to try alternatives to their treatments. I just can't settle for less if we haven't tried what's available.
Do you have a surgery date? we'll sure be with you in thought and prayer and be anxious to know the outcome!
Continually searching (and working with a grateful and cooperative recipient)
Lori

I am so frustrated. It turns out the oral-maxillofacial surgeon here who has lots of knowledge, training, and experience working with oral cancer patients who have had radiation is booked until September. I have to be back in the classroom in September. My ENT said there is another oral surgeon in town who is very good and is going to try to do the surgery with him if he can set something up for the next couple of weeks. I had a dental appt. today (just regular tooth cleaning) and the hygenist said that the dentist has worked with this new guy and also says he's very good (dentist himself was not in today although I usually see him at the end of every cleaning). But I don't know if he has any training in doing coronoidectomies or experience working with patients who have had radiation. Then again he'd be assisting my ENT who does have that training.

To top it all off I went for my yearly OB/GYN exam a couple of weeks ago and, thanks to taking tamoxifen for breast cancer most likely, my uterine lining has gotten very thick and the OB/GYN wants me to have a D&C, although it is not an emergency. If I have the coronoidectomy, I will have to go back for the D&C within a month or so (which will be right about when classes start. groan).

I'm wodnering if I should just put this of until next year, end of May when my semester ends--if I plan it in advance I can get the oral surgeon I originally wanted there and then I can have the D&C now.

OTOH, I really had my mind made up this surgery would help me and I'm not looking forward to another 10 months of jaw cramps that especially happen when I try to swallow. And there is a lot that *could* improve with my swallowing once I have this surgery done assuming it is successful.

The ENT will call back tomorrow to let me know if he can do the surgery with someone else so I have a little time to think this over. Any opinions would help....

Nelie

Nelie,
Haven't you been through enough?? I hope you can get this surgery done now and not have to wait. D&C is a snap, I had the "Cleaning" as an outpatient. Go ahead and get that out of the way - one less thing to worry about.

Nelie,

Any chance you can get on a short call list? Although it's rare that anyone would cancel a surgery, there are times when a person could get sick, have cold etc. and not be able to have general anesthesia. Obviously this couldn't be a real short notice thing as you would have to fast, but a day before cancellation could work. A long shot, but worth a phone call.

Good luck.

Jerry

Jerry, what a good suggestion. As you know, my huge surgery was performed on about 15 hours' notice because of a cancellation.

Nelie, good luck trying to balance all of these demands. What a puzzle life can be!!

XO