USC medical center, here I come...(maybe)
 

Well, looks like I'll be having more surgery. My problem keeps progressing, and the doc at the Mayo clinic (nice to have one of only 3 in the US 15 miles from my house) says, based on some recent (and unpleasant) tests, that I will require more surgery. Problem is that it's a bit more complex than the first, and there are only 3 surgeons west of the Mississippi that have any experience doing it whatsoever. Two are at the Mayo here in Phoenix, which has a hospital here in the metro Phoenix area only 2 miles from my home, but my insurance doesn't cover, and one is at USC medical center, which does take my insurance.

I'm in process of trying to get approved for the consultation at the Mayo. If they tell me I've got to go to USC, that would suck. No offense, but 2 miles away vs. 400 miles away....well, the choice is clear.

So....who knows....maybe I'll be in your neighborhood in the next couple of months.

Sorry to hear that, Leo.





Hey, MbC, scaeagles is coming to your town for a sphincter stretching. Better ask Santa for a small appliance or two.

Well, at least if you're in the LA area you'll have a dose of liberal visitors. Er, I mean, a liberal dose of visitors. ;)

I sure hope you can laugh after your surgery. At least you can roll your eyes. ;)

Oh, geez - don't be sorry. My first surgery helped immensely, but due to the progressive nature of my disease, sometimes a second one is required.

And um, no.....they are able to due the stretching locally. No need to travel for that.

Nice scam to get to the Park, but certainly there's a way to do it without surgery.

As much fun as it would be to have you in town (presuming you would tell us when) Hopefully your insurance will get a clue and do the "cost effective" thing they're supposed to do.

I'll bet your really getting nervous at the USC prospect now, Scaeagles! I just hope everything works out and this helps you feel better!

Heh heh... I just had the mental image of an excited, tangled haired woman leading the charge into Scaeagles hospital room, with him all hopped up on pain meds trying to explain these people to the family....:D

No one here knows my last name, though.....unfortunately, there aren't a lot of "Leo's" around. I'll just have to keep the date - if I end up at USC medical - a secret.:p

I'll just have to lead the charge with a tiny flag hoisted on a sphincter-spreading tool.



MBC, are you available?

See how much we love you? News of an impending brush with a scalpel brings out homosexual banter and invitations to a theme park. :D

I really hope you don't end up associating a trip to LA with a long painful recovery. Here's hoping you can stay home! :)

Norquist?

I think I just figured something out...

Sca-lia
Sca-lito
Sca-eagles!

Makes sense to me. :D

----

Seriously, sorry to hear about all your hospital and health shenanigans, Leo. Wherever the hospital, I hope they figure it all out. USC has a good hospital. And it's so close to the park. Monsters Inc ride... hint hint. :)

... and I'm enjoying that image a lot more than I probably should.

Best wishes for a speedy "local" recovery, Leo... and if USC is in the cards, I WANT PICTURES!!!

One of the reasons that I am not dreading a second surgery is that my first had an incredibly short recovery. I got six holes in my abdomen, but only was on pain medication for one day, and was back on my elliptical on the 7th day after surgery. So I'm not dreading it in the least, regardless of where it is (though home would certainly be preferable).

Quite possibly the highest compliment I have ever been paid. Oh, to be as intelligent as Scalia.

How close is USC to DL? My wife and I actually did talk about going out a day or two early if I do have to go there and going to DL without our kids - it would be the first time in 13 years that would have happened.

Oh, it's really no bother. Although, I suppose we would have to attach one of those "wide load" signs to you before we sent you back.



Seriously though, I hope you are able to find some relief from this additional procedure, wherever you end up having it done.

I wish. My wife now says I am "buttless". I am eating as much as I can and am back to losing weight. Sigh.

Of course! Although, I must say, I've never been referred to as a "sphincter spreading tool". It has such a nice ring to it however that I felt the need to change the line under my user name. :D

It's only like a 45 minute drive, maybe an hour w/ traffic.

Well, I won't be going to USC medical center. The insurance has said they've found a local surgeon who has done the procedure, and while he is not contracted with them, he does his surgery out of a contracted hospital, unlike my option with the Mayo. So I will be meeting with him on the 23rd.

Should he prove to be qualified (which to me means he's done several of these operations), that will be just fine. If he isn't, the good news is that the insurance isn't going to make me travel out of state for it, so I should be able to go to the Mayo, as this other guy was the only person they could find that they said was qualified.

Whew.


Although, we would really like you to come to L.A. sometime and share a day with us at DL, we are far more concerned that you not be retardedly inconvenienced to get the health care you deserve.

Thanks....but ya gotta promise you won't try to kiss me.

Well, it's two hours of full-on liberal beratement -OR- a kiss on the lips (no tongue), your choice.


But those are your only options.




(Though I think they sell Mickey Mouse Waffle Irons at WoD, if we end up having to go the small appliance route.)

Something tells me that I'd face liberal beratement even if I did kiss you. Just a feeling.

Waffle iron....hmmm....let me check the cabinet and I'll get back to you.

Good news! :cheers:

Well.....seems unimportant really in the light of Capt Jack's tragedy, but my saga continues.

I went to see a surgeon today (got postponed from the 23rd). The insurance company, in looking for a qualified surgeon, found this surgeon. Unfortunately, when looking, my case manager was looking for a surgeon who could perform the surgery I already had. So I went, spoke with him, and upon looking at my stuff and talking with me, he told me he wasn't qualified to do what I need. And he suggested....the doctor at the Mayo clinic that was suggested to me already and the insurance wouldn't cover. He also suggested the surgeon at USC medical center.

So....I called my case manager. She was a tad embarrassed. I'm taking more steps backwards than forwards it seems.

One other bummer.....the surgeon I saw today seems to think I need a radical surgery involving using part of my small intestine to replace my esophagus. I am hoping a different surgeon will have a differing opinion. I think I'd rather have a feeding tube, frankly, than go through that.

Sigh.

Sorry to hear this, Leo. I also hope that there is a better option than the radical approach you mentioned.

Hang in there.

scaschaivo!

Wait, Leo ... I'm confused. "Radical" as the surgery may be, would not replacing some esophagus with some intestine provide somthing akin to a permanent cure?

If it's not too painful to discuss moving your various body organs around in a Frankensteinian manner, please educate me on the pros and cons of treatments that are offered to you.

I'll be glad to. I haven't the time to post the details at present. Not that I have many options at present....I'll do that tomorrow.

OK.....a brief history (OK - after reading what I wrote, it's not brief) of treatments and options.

Achalasia is somewhat rare. Runs about 8/million in the US. Because it is not fatal and not common, there is not much research or development of treatments.

Treatment options are limited and are mostly adaptations of therapies or treatments for other problems.

The first is a balloon dilitation, or stretching of the esophagus. I've had this done 6 times (no, not by MBC :) ), including once post surgery this past August. The positive results from this last only about 2-3 days for me. Normally, positive effects last about 6 months for other conditions that require this treatment.

There are nitrates and antispasmodic drugs that I have tried. The nitrates made it possible for me to eat for about 20 minutes, but the resulting killer headache mside effect made it impractical to do this at any time except prior to going to bed. The antispasmodic drugs were ineffective.

There is one treatment I have not tried, which is botox. Botox stops muscles from being able to contract, and as the major problem with my disease is that the bottom of the esophagus won't open. Paralyze them with botox and there can be beneficial effects. However, surgical candidates are discouraged from doing this, as for some reason, which I do not fully understand, it makes surgery more difficult at a later date. It is also temporary, requiring a new injection every 3-9 months depending on the individual.

The last option is a surgery called a heller myotomy, which is basically removing the sphincter at the bottom of the esophagus and cutting away portions of the muscles from around the lower esophagus. This is what I had done in April. Was great for about 4 months, then symptoms returned. Normally, depending on progression of the disease, this has a lasting effect of 10-15 years before any other treatment is required.

Then there's me. Mine is progressing extraordinarily rapidly. I've always been an overachiever. That brings me to my hesitation. It is a "better the devil you know" attitude on my part.

I have had a feeding tube (actually called a PICC line, inserted not into the disgestive system, oddly enough. It goes in the inner upper arm and threads through a blood vessel into the midchest). Pain in the butt, but workable. No side effects except that I cannot swim. While I was only on one for three weeks or so, for the last week I was able to just have it at night (they just turn up the pump faster). Perfect nutrition. No pain trying to eat. I've been told that you can reduce the time to 8 hours as long as you are able to get fluids down in the normal fashion.

There are no gaurantees with this surgery that is being recommended (or was recommended by this first surgeon - I am hoping that other surgeons I have the chance to talk to have differing opinions) will be a permanent solution. There are, as with any major and complex surgery, risks and possible complications. So.....I wonder if a feeding tube is a better option. It's where I'm at right now. I don't want to make anything worse. A feeding tube means that it doesn't matter if my disease continues to progress.

Longer than I wanted it to be, longer than you wanted to read, I'm sure, but that's the story and my current mentality.

edited to add: I've also tried other things - chiropractics, acupuncture, herbal concoctions (some far too nasty to mention), and massgae therapy - all to no avail.

WTF?!?! You have one aggressive esophagus there, bud!

Ok, so how does that surgical procedure differ from the one(s) being proposed now? I can understand not wanting to have surgery that results in a measly 4 months of respite, but - even accounting for you being on the uber-low end of the symptom-abatement scale - how long are abatement rates predicted for either of the two new surgical proposals?

My point is that you can always go the feeding tube route ... (without making too light of the risks and recovery surgery entails) why not try all other options?

I swear, ya read things on the LoT that you'll never see anywhere else. Ever.

The surgery I had (a heller myotomy) is a modification of an existing organ, being the esophagus. What's being proposed is a replacement of the esophagus with part of my intestine, basically a transplant within myself. The original was a 3 hour surgery (and it included an anti-reflux procedure as as well). What's being proposed, so i was told, it a 12-14 hour ordeal, and messes with stuff that currently works just fine. The original was done laparoscopically (6 small holes in my abdomen), the second will require a full opening of my abdominal cavity and chest (this is my presumption, not what I was told - how the hell else could they move part of my intestine to my chest, including under my sternum?). The recovery time will be immense, as opposed to basically a week for the first.

Yes, I can always go the feeding tube route. So it's a cost/benefit analysis for me. Or better stated a risk assessment analysis.

Truthfully, I'd go through my first surgery every 4 months for the rest of my life if it were possible. I'd take a week of recovery for 4 pain free months and the ability to eat what I want (after a couple weeks of restrictions for internal healing) without the pain associated with what I deal with now.

I was told that the esophageal replacement was basically the "last chance" for relief. That tells me it is either a permanent solution or....I don't know. If it doesn't work, I really don't know what that means. How screwed up would I be then?

During the progression of my disease, I have had all sorts of opportunities to read up on therapies and treatments and surgeries and became very comfortable with what was proscribed. This, however, has come at me completely from left field and I have had no time to research it or think much about ramifications.

But, hopefully, this is an exercise in futility. There will be other opinions. And in fact, this morning, my case manager from my insurance company called and has a surgeon who works out of a hopital less than a mile from my home who was trained at the Mayo facility here in Phoenix. She spoke with the surgeon and the surgeon believes that she can help me. This is encouraging. I am hoping there is a surgery much less radical. My appointment is next Tuesday afternoon. This is the surgeon who was recommended to me by the surgeon who did my first (he had to retire for medical reasons of his own). The insurance at first did not want to approve out of network, but they have run out of options.

So, I am hoping to have a different solution in a few days.

Steve, thanks for your interest.

If anyone is interested, here is a web page that has the most concise explanations of therapies for achalasia.

http://patients.uptodate.com/topic.a...=digestiv/4384

Let us know what the new surgeon with encouraging style has to say. Hang in there!

So really, you can avoid all of this (surgery, feeding tubes, etc.) if you had something long and hard to shove down your esophagus on a regular basis to force the food through. Anyone have any ideas?

Ha, ha.

Trust me - from what I've heard, MBC couldn't do the trick.:)

What you quoted is a bummer. Before I was used to my condition and kind of had a feel for the symptomology, there were times in the middle of the night everything in my esophagus would come out onto my pillow if I turned just right (or just wrong). That was always pleasant. I've since figured out how to clear it pretty effectively prior to going to bed.

And from what I've heard about Leo, I don't think John Holmes could do the trick.

One other note - I finally found a study on esophageal resection (the proposed radical surgery). 37 operations over a 16 year period. 2 died in surgery. 34 had no further problems. Don't know if I like a mortality rate of over 5%.

Crap - what is it with surgeons and surgery? I've again been bumped. I was supposed to meet with this other surgeon today at 3:00, but got a call telling me she had to go into surgery. I'm important, dammit! Let the other guy bleed out and meet my needs now!

Well....maybe not. I'll have to wait until tomorrow at 8:30am.

That happened to me when I had cancer. What? I have cancer and I got bumped???? Well, somehad it worse than me, I guess.

Cancer....yikes....my problem is so small. Non-fatal has such a nice ring to it in the grand scheme of things.

Eh, my cancer was a piece of cake, or boob. No biggie.

Well, not anymore it isn't.

Arr! It's stressful to wait for these things. Keep us updated tomorrow, will you?

Yeah, 5% is a high rate-- but statistics cannot always be trusted. Is that a total number, or a selected number of surgeries ever performed?

Also, a question of PICC lines-- how are your veins? My mother (who must have a PICC whenever she gets sick now, annually or so) has terrible veins. She's on her last uncollapsed major arm vein and God help this one if they blow it next time.

I'm not sure....I've never had circulatory issues, and drawing )or donating) blood has never been a problem. Would a PICC line cause them problems?

I am a hamster. I have a shiny wheel in my cage. I run on it. I run hard. I don't get anywhere except back to the place I was before.

Well, at least the surgeon I saw today (who trained at Mayo) didn't think I need an esophageal resection. She actually thought that was a bit ridiculous. Good news. She thinks I need a redo of my first surgery (Heller myotomy) to extend the weakening of the muscles around the esophagus. I have also developed a hiatal hernia (top of the stomach starts extending above the diaphragm) that can be easily fixed when the redo is done. Apparently, that's not uncommon after a heller myotomy.

This surgeon feels unqualified to do a redo of a heller myotomy. Much trickier than the first. She's never done one. So she recommended the SAME SURGEON I'VE BEEN WANTING TO SEE AT THE MAYO CLINIC!!!!!!!!!!!!!

I am a hamster. I have a shiny wheel in my cage. I run on it. I run hard. I don't get anywhere except back to the place I was before.

I have a message in with my insurance case manager. I wonder if the insurance will finally approve me going to see a surgeon at Mayo Clinic. When the surgeons they send me to tell me that the only people that can do it are at Mayo, and the doctor I saw at Mayo says the only people that can do it are at Mayo, maybe the insurance will figure out the there IS NO OTHER FLIPPIN' OPTION!!!!!!!!!!!!!!!!!!

I am a hamster. I have a shiny wheel in my cage. I run on it. I run hard. I don't get anywhere except back to the place I was before.

(takes a deep, cleansing breath. takes several. is OK now.)

DAMN. You ARE a hamster!

Jeebus, what a circus.

So, have you checked if the Mustard Clinic or the Relish Clinic has anyone that can perform the procedure?

Definitely hold out for Mayo if at all possible. I was living in Rochester when I was shot. I don't know if I'd be around writing this if I had been living in say Boise at the time. Not that I have anything against Boise mind you, I'm sure it's a fine place. I'm just saying if you're up against it, Rochester, MN is the place to be.

Best of luck to you.

Hold the Mayo.

My favotie line from the movie Airplane -

(operator interrupts Captain Oveur, who is speaking with a doctor at the Mayo clinic)

Operator: "Excuse me, Captain Oveur, there is a Mr. Hamm for you on line five."
Captain Oveur: "Alright, give me Hamm on five, hold the Mayo."

YAY! Just got approved for a consult and following surgery at Mayo clinic with the surgeon who knows what she's doing (or so I've heard).

That's excellent news! :snap:

I'm going to rename you Squiggle Butt, after the rat that is currently running in her wheel.

I have a friend who is going through a lot of what you are. He has gastreo paresis (sp?). He even got sent to UCLA to find out what was causing it. The Dr he saw there told him it was all in his head and that he needed a shrink. The other many, many Drs he's been to have all said the same thing. It is partly stress related and that the only way to fix it is to remove the part of his stomach that isn't working. In the middle of all of this he has been having trouble at work (SBC). They decided that they didn't like him taking time off so they sent him to a 2nd opinion to try to get a different diagnosis that his own Dr. When the 2nd opinion agreed with his first they sent him to a 3rd. After over 6 months of waiting to see if he still had a job the 3rd opinion came back and agreed with the other 2. Now he is being followed by Asset Protection any time he is out ill. I am sososooo glad I don't work there.

At least it sounds like things are looking up for you. :)

Gosh - I'm almost tempted to change my "scaschiavo" title to "Squiggle Butt". I am somewhat saddened that you have posted this though, for somewhat obvious reasons if you are familiar with many of the posters here.:(

But I feel for your friend. I've been fortunate that none of my doctors have said it was all in my head, but I was horribly misdiagnosed for a while. I've thought it was all in my head many times, because the symptoms vary from almost non existant to so extreme I can't even get fluids down. What a drag for him.

I would be remiss if I didn't mention the new movie being made addressing the healthcare problems in this country.

Perhaps you should give the director a call. He's gathering healthcare and insurance horror stories to use in the movie.

:cheers:

LOL. Got a good laugh out of that, Scrooge.

However, I will remind you that I do not hold my insurance company in any negative light. They are a for profit business, they have their rules which they are following and expect me to follow, and they have operated within their guidelines. While frustrating as all hell, I can't say they have done anything wrong.

So, I don't think Moore would want me.

HeHeHe It was hard to build up that post without giving away the joke.

Well...she is the sweetest, most caring of my girls, so it was meant well.

Leo is a Squiggle Butt!!!


Every other Friday night he goes by the moniker Rump Shaker.

But if that's the system working as-designed...oh forget it...

Glad to hear things might finally be moving in a useful direction

So, you're trying to make me feel better about you calling me Squiggle Butt by clarifying that this particular rat, a female rat nonetheless, is sweet?

You need some work on your compliments, there, Mousey girl.:)

"Shake, shake, shake (trumpet blare)
shake, shake, shake (trumpet blare)
shake your boo-ty, shake your boo-ty
Ooooooooooohhhhhh
Shake, shake, shake (trumpet blare)
shake, shake, shake (trumpet blare)
shake your boo-ty, shake your boo-ty"

Gotta love KC and the Sunshine Band.

Sorry...I went back on my Prozac this morning...wierd things going on in my brain.

While i hate to bump the thread in which I was recently referred to as "Squiggle Butt", there is new info.

My surgery will be at Mayo Hospital on March 8.

I got the notice in the mail today, but thought that was a bit odd, as my consultation with the surgeon isn't until Feb 23. My wife has a student whose dad is a surgeon at Mayo, and has spoken with him. I bet he talked with the surgeon that's going to be cutting me and they went ahead and scheduled it prior to the consultation so that her schedule wouldn't continue to fill up for two weeks.

Anyway....March 8th looks like the day. No USC medical center. At least not yet (crosses fingers that this does the trick).

I'll raise a hunk of sourdough in your honor from up in NorCal on that date.

Wonderful way to find out what the results of your consultation will be!


Sorry you won't be "visiting" SoCal after all, but I'm relieved that you're in the good gloved hands of the Mayo.

Going to the Mayo
and we're
Gonna streach our Sphincter.............

Met with a surgeon at Mayo Clinic today. Surgery is scheduled for March 8.

I have anywhere from 1 to 4 of these things wrong that need to be fixed -

1 - The original surgery did not cut away enough of the muscles at the top of the incision on the esophagus (unlikely).

2 - the original surgery did not extend the incision on the esophagus close enough to the stomach. (probable)

3 - One part of the original surgery wrapped part of the upper stomach around the lower esophagus to prevent reflux after the necessaary part of the surgery. This could be herniating above the diaohragm. (very likely)

4 - The liver and the esophagus may have been connected by scar tissue during healing and need to be separated. (probable)

So....I'm good to go in 13 days, assuming the t's get crossed and the i's get dotted by the insurance people.

Can they make you better, stronger, faster while they're at it?

Yes, it does seem that a robotic sphincter would solve all your problems.

A bionic sphincter? I don't even want to know what MBC and Scrooge would say about that.

Yes, you do.

Admit it ;)

With the number of surgeries, procedure, diagnostics, and consultations you've gone through, youv'e gotta be approaching the "6 Million Dollar Sphincter" mark by now.

A 6 million dollar sphincter.....I guess my price is going to increase from the small appliance range.

(let's just say I'm not complaining too much about the increase in 13% on the old insurance premium coming up.....I've been getting quite a good deal.)

What have I been telling you?

A bionic sphincter?

Leo would be a WMD!

For his sake, I hope not- Bush might try to invade him.

Well, I would say I destroyed my WMD bionic sphincter long ago, but MBC's intelligence report would say otherwise.

And this time Bush won't send someone else to do his dirty work.


Oh man, where would scaeagles rank that in his top ten moments? I'm guessing between the birth of his children and his wedding day....

And I would regretfully have to admit that my intelligent report was wildly incorrect. Upon further inspection, it would appear that there is nothing particularly threatening about scaeagle's sphincter. More than likely, it never really posed any imminent danger to society as a whole. Rather, the sphincter danger was dubiously inflated to support an invasion.

It turns out that scaeagles was hyping his sphincter to keep his enemies at bay. At the end of the day though, it was just a regular old unimpressive sphincter that was widely overrated. It turns out that the small appliance sanctions were working. :)

Well, what do you expect for a toaster?

One year ago today I got operated on at the Mayo hospital. I am happy to report I am doing exceptionally well a year later with some difficulty, but nothing unmanagable.

You guys here in the LoT always rocked with your encouraging words and genuine concern for me.

Yay Scaeagles!!!!

That's pretty darn awesome to hear, hamboy! :) Can't believe it has been a year though. Man, time flies.

I'm really glad to hear that you are doing well.

That's really great to hear!!!! I'm really happy things worked themselves out. However, I'm not sure how I feel about the slackening of sphincter jokes lately.

Thanks. It is hard to believe it's been a year.

And that's hamman to you, MBC.

I'm sure just bring this thread up again will revive some, NA. And no more fun drug induced typos from me.

I miss those drug-induced ramblings and typos, but I am glad you're sphincter's spiffy, Scaeagles!:cheers:

Leo,

Hope everything comes out ok. Come visit when you are feeling well and can enjoy it.

Seriously... I was "out" most of that year, but the "drug induced" (if we MUST call them that) postings were really what kept me stringing through...

On a more serious note.

OK, there is no serious note. ;)

Leo, you rock.

You're welcome.


And thank you for bumping this thread and scaring the crap out of me. Oh, and MbC says it's time to bring that bad boy in for the one year service and "extreme conditions" testing (whatever that means).

Sorry about that, Sac. I did think about that and perhaps starting a new thread....I guess I made the wrong decision.

Extreme conditions? I guess MBC wouldn't be participating....not too much extreme about his probe.

Nice avatar, BTW.

Thanks. I think it goes nicely with this thread.

Oops, didn't look at the date. Still hope you come out and visit sometime.

Hey Leo, I hope this one helps fix everything. It sucks having surgeries that don't fix it completely. What is that, doing half the job so the Dr.s can get a second surgery to charge you for? I may have to have mine redone again as well. Sheesh people! Get it right the first time! This is our lives you're messing with!!!



*Pant, Pant, Pant*



Ok, rant over.

Says the guy who doesn't find a ham extreme either.

Slut.

Well, it sounds as if it's a sphincterrific sphinctaverssary!


:cheers: Here's to your continued good health and ongoing tightness.

Glad to hear all is well with you Leo. I miss having you around.

On the contrary, Leo. I'm glad you revived this thread as I somehow managed to miss the bulk of the sphincter jokes! (Well other than the quoted one involving ham).

My day would have been incomplete but for the revival of the thread in which someone suggests Bush would invade your WMD sphincter. The visual alone was worth the price of admission!

Remember my "discussing" typo? That subject came up at work today when someone else made an embarrassing typo. The quality control manager is name Bobbie, and in a development wide email referred to her as "Boobie". Anyway, I told that story and got quite a good laugh.