Re: Dr. Patti

[Guest guest]

, I certainly would be encouraged by what Dr. Patti

had to say. If it is your husband's choice to see Dr. Rice first

then that is really what you probably should do. But, if it

were me I'd want to see what Dr. Patti had to say also before

I made a finally decision. I know many who have been very

happy with Dr, Rice and yes he has a lot of experience with

myotomies for Achalasia, but maybe he has not had as

much experience with DES as Dr. Patti has.

Most insurance companies will pay for a second opinion. Do

you already have an appointment with Dr. Rice or are they

suppose to call you back with an appointment? If they are

you might check and see when Dr. Patti could see you. I don't

think I'd be happy to make a decision without talking to Dr.

Patti, especially in light of what Dr. Achkar said.

These are just thoughts...things to think about.

I'll keep you in my prayers and pray you and will make

the right decision.

Maggie

Alabama

[Guest guest]

Dr Patti did my lap Heller Myotomny with dor

fundiplication 9 months ago. He has also been very

responsive to my e-mails, but I was already a pateint.

I have nothing but good things to say about him.

If you can get a consult with him, go for it. In fact

when I read your first e-mail about 1 hour ago I was

going to suggest taklking to Dr Patti, but I thought

you might be too far away. But with our wierd

disease, I guess sometimes one needs to go to where

the experts are.

It is my understanding that Dr Patti is one of the

most expeienced docs in regards to A and is a national

if not world wide expert.

Good luck

Dave

--- let45ride <brendacoyle@...> wrote:

> Half an hour ago I

> sent an e mail to Dr. Patti, out of UCSF and he has

> already responded!

>

__________________________________________

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[Guest guest]

Luna,

Thanks, again for all your help! It was near the end of office

hours today when I talked to Dr. Achkar. He said someone would call

next week to set up the consult with Dr. Rice. Unless there is

someone closer, I agree that a consult with Dr. Patti would be a good

idea, also. I would still have to work out the details of travel,

time off work, etc.

>

> , I certainly would be encouraged by what Dr. Patti

> had to say. If it is your husband's choice to see Dr. Rice first

> then that is really what you probably should do. But, if it

> were me I'd want to see what Dr. Patti had to say also before

> I made a finally decision. I know many who have been very

> happy with Dr, Rice and yes he has a lot of experience with

> myotomies for Achalasia, but maybe he has not had as

> much experience with DES as Dr. Patti has.

>

> Most insurance companies will pay for a second opinion. Do

> you already have an appointment with Dr. Rice or are they

> suppose to call you back with an appointment? If they are

> you might check and see when Dr. Patti could see you. I don't

> think I'd be happy to make a decision without talking to Dr.

> Patti, especially in light of what Dr. Achkar said.

>

> These are just thoughts...things to think about.

>

> I'll keep you in my prayers and pray you and will make

> the right decision.

>

> Maggie

> Alabama

>

[Guest guest]

GREAT NEWS!!!

That is just like Sandy says ... you are unusual and the doctors will

respond! I just LOVE the fact that Dr. Patti contacted you already.

You asked for an opinion .... If your husband really wants to see Dr.

Rice first ... and IF you can get a VERY QUICK appointment ... I

would go for it. You have nothing to loose.

If however, the wait is more than a week ... I think I would find out

how soon Dr. Patti could see him and proceed that way! That is just

my opinion. I truly share the positive feeling you have with the

return e-mail from Dr. Patti ... one more thing .. you have what he

said in writing, so you can actually refer to what he said instead of

trying to rely on memory!

Good luck with your decision

Kathie

>

> Wow! I am just shocked and amazed right now! Half an hour ago

I

> sent an e mail to Dr. Patti, out of UCSF and he has already

responded!> I decided to contact him because of the PubMed article

that Luna sent me a link to (Thank you, Luna!). In fact, he referred

to the article in his response! He said that the long myotomy was

used many years ago and has been abandoned. They are very pleased

with the results they obtain from the lap Heller and that overall he

feels they have probably the largest experience with the treatment of

DES in the USA!

> He said that he would be happy to see my husband for a consult.

This

> is so different from what we've heard from others. I don't think

most doctors/medical centers have much experience with treating DES

at all. My husband said he would like to see what Dr. Rice says

first, though. What do you all think? Should we be encouraged by

what Dr.> Patti has said? I welcome your comments.

>

> in c-c-cold Michigan

> thinking a trip to sunny San Francisco might be a good thing - at

> least warmer ;-)

>

[Guest guest]

, this is my take on things.

1. Dr. Achkar at TCC and Dr. Rice at TCC are indeed colleagues, but they are NOT in the same "field". Dr. Achkar is in Gastroenterology and Dr. Rice is in Thoracic Surgery -- I don't even think they're in the same building!

2. You don't know what Dr. Achkar did/didn't share with Dr. Rice about your particular case. Therefore, a consult with Dr. Rice is definitely in order so you know what is said and what is not said. There's a huge difference between Dr. Rice hearing, "This guy has dysphagia and is diagnosed with DES, what do you think?" (at which point you don't know how bad off the symptoms are, and you may think that surgery as the first treatment is a bit severe w/o trying other options first) compared to him hearing, "This guy has DES, and he's lost 65 pounds and his symptoms are so bad he misses work 50% of the time and he has almost constant pain and his general health is deteriorating rapidly due to lack of proper nutrition and his quality of life is practically nil and we've tried Botox and Trazadone and nothing seems to be helping and he's at the end of his rope, what do you think?" At that point, the first thing that jumps to MY mind (and I'm not a doctor, "I just play one on the internet" LOL) is -- "well geez, he can live a full life without any esophagus at all, so why don't we just remove the dang thing and let him get on with his life?"

I also find it really odd that Dr. Rice would make a comment about cracking open the chest -- he's an accomplished surgeon in minimally invasive surgeries, and I don't see any reason (with just my own minimal amount of knowledge of your husband's case and the complexities involved with esophagectomy) why a minimally invasive (thorascopic) esophagectomy wouldn't at least be a consideration, at least until it's been ruled out for some other reason.

So my take on it is this:1. Go see Dr. Rice. If possible, take a tape recorder so you don't have to worry about taking notes or remembering everything he has to say. And feel free to mention that Dr. Patti has also offered a consult.

2. Run Dr. Rice's comments/recommendations past Dr. Patti via email/phone. They know each other and from my knowledge of Dr. Rice and other people's comments about Dr. Patti, I think both of them would be fine with the idea of you getting a second opinion from another highly qualified expert in the field.

3. Make your decision based on 1 and 2. I certainly wouldn't have any problem with Dr. Patti operating on me, just like I would have faith in Dr. Rice. They are The Best Of The Best in what they do. Simple logistics --all other things being equal-- would have me choosing Dr. Rice, simply b/c it's a 3-hour drive (for you) to get to TCC compared to a cross-continental flight to get to Dr. Patti. Flying across the country and dealing with a strange city and a strange rental car and a strange facility and hotels and all that jazz is a lot of extra stress that you guys just don't need unless absolutely necessary. But if Dr. Patti has something to offer that Dr. Rice doesn't, you have to do what you have to do. But IMO you should at least find out what Dr. Rice has to say about it all.... no sense flying across the country if you can get the same thing in your own back yard. ;o)Deb in cold Michigan too....

PS --- I've learned the hard way that you HAVE to be a persistent *itch about things like this. Don't give a second thought about what people think of you, just do what you have to do. I was just telling someone this week that even though I never would have chosen to have achalasia, it has made me a MUCH better advocate for myself as well as for my son and husband. While doctors may be "experts", only *we* know our own families and only *we* truly and deeply care about our healthcare situation, so it's up to us to be proactive about it.

If a doctor doesn't like the fact that I do my own research and ask my own questions and offer up treatment possibilities, that's a good indication to me that this is not a good doctor for me. My husband had an eye-opening experience four years ago, when my son was having recurrent ear infections and we got a referral to an ENT. The "specialist" wanted to put my son on a daily antibiotic for SIX MONTHS -- the entire 'cold and flu' season -- to prevent more ear infections.

When I inquired about the ramifications of long-term antibiotic use on the digestive system and immune system (long-term disturbance of the natural flora of the body... we're SUPPOSED to have "good" bacteria in us at all times!) the doctor just pooh-poohed my concerns, like I was talking pure nonsense. When I mentioned alternative treatments and a book by a well-respected specialist, he made a comment about "someone new writing a new book" (the book was six years old at the time and in its second printing).

My husband couldn't believe that someone who was a so-called "specialist" could be that out of touch with what was going on in the field, and he also couldn't believe that a doctor wouldn't even listen to what a patient (or in this case a patient's mother) would have to say. (It would have been one thing if my ideas involved sticking pins in a voodoo doll or something like that, or if there was specific research that contradicted the things I was proposing.... but he flat-out wouldn't even listen to any ideas that didn't originate in his own head!)

After witnessing that episode (if anyone's curious, I ended up treating my son's EI's the way I wanted to, and the infections stopped recurring... seems I knew more than the doctor afterall!), my husband had a whole new understanding of what I've gone thru with trying to get my achalasia diagnosed and treated. He grew up on a farm and never really had much contact with doctors and had no clue how condescending they can be so much of the time. He was so disgusted with the doctor's attitude that it was all he could do to keep from getting snotty and telling him off, as in, "How dare you talk to my wife that way???"

We recently switched primary care physicians for the two of us, and my hubby's eyes were opened once again about the need to be proactive in his own healthcare... turns out the past two doctors have had him on a blood pressure medication that he never should have been given in the first place, b/c it's for people with arrythmia problems, which he has never had! (he does have high blood pressure, but there are better drugs to treat it than the one he has been taking for the past four years) In the past he's always been dismissive when I ask him about his doctor appts and what the doctor tells him, etc. Now he's beginning to see that maybe I *should* be involved in these matters, b/c SOMEONE has to look out for him, and he's too much of a newbie in this to know how to navigate the waters on his own.

(that has got to be the longest "PS" of my life!)

Dr. Patti

Wow! I am just shocked and amazed right now! Half an hour ago Isent an e mail to Dr. Patti, out of UCSF and he has already responded!I decided to contact him because of the PubMed article that Luna sentme a link to (Thank you, Luna!). In fact, he referred to the articlein his response! He said that the long myotomy was used many yearsago and has been abandoned. They are very pleased with the resultsthey obtain from the lap Heller and that overall he feels they haveprobably the largest experience with the treatment of DES in the USA!He said that he would be happy to see my husband for a consult. Thisis so different from what we've heard from others. I don't think mostdoctors/medical centers have much experience with treating DES at all.My husband said he would like to see what Dr. Rice says first,though. What do you all think? Should we be encouraged by what Dr.Patti has said? I welcome your comments. in c-c-cold Michiganthinking a trip to sunny San Francisco might be a good thing - at least warmer ;-)

[Guest guest]

Dear ,

So good to hear you heard back from Dr Patti in such a timely manner!

Personally, I think an opinion from both Dr Patti & Dr Rice would be

the best, then you could make an informed decision. It sounds like Dr.

Patti is very experienced with DES...I would want to see him. Dr

Patti's office will take care of all the formalities getting the

second opinion approved with your insurance. I think they had me

approved within a week!

I will be at UCSF on January 17th. I live an hour away and I won't

drive there. I don't like driving in the city and I have a fear of

driving over bridges so I take public transportation. It is soooo much

nicer and easier to get to UCSF taking BART and from there you take

the N-Judah train and it lets you off right there at UCSF. It's VERY

easy... I am more than happy to help you out and give you guidance, so

please let me know if I can offer any help if you should decide to

come out this way.

My family is dysfunctional so I'm sorry I can't offer a place to stay

unless you don't mind the doggies waking you up and jumping all over

you...and when company comes over they usually get excited and pee on

the guests...not a good thing. Any ideas Sandy? At least the kids have

been trained better than the dogs, but the dogs are very cuddly and

lovable...

Feel free to email me privately!

Sandi in No CA

>

> Wow! I am just shocked and amazed right now! Half an hour ago I

> sent an e mail to Dr. Patti, out of UCSF and he has already responded!

> I decided to contact him because of the PubMed article that Luna sent

> me a link to (Thank you, Luna!). In fact, he referred to the article

> in his response! He said that the long myotomy was used many years

> ago and has been abandoned. They are very pleased with the results

> they obtain from the lap Heller and that overall he feels they have

> probably the largest experience with the treatment of DES in the USA!

> He said that he would be happy to see my husband for a consult. This

> is so different from what we've heard from others. I don't think most

> doctors/medical centers have much experience with treating DES at all.

> My husband said he would like to see what Dr. Rice says first,

> though. What do you all think? Should we be encouraged by what Dr.

> Patti has said? I welcome your comments.

>

> in c-c-cold Michigan

> thinking a trip to sunny San Francisco might be a good thing - at

> least warmer ;-)

>

[Guest guest]

-As I said in my previous email, we know Dr Patti is considered the best, and if he is willing to take your husband as a patient, go for it!!!! The way I see it, the ultimate goal is to know you have obtained the very best treatment by the most qualified physician. This is the same thought process that led me to seek surgical intervention less than one month after diagnosis.....injections and dilation are uncertain and sometimes temporary. After much discussion, my husband and I agreed that myotomy was the treatment with the highest success rate and less likely to need repeated treatment. Hope this helps! Jo let45ride <brendacoyle@...> wrote: Wow! I am just shocked and amazed right now! Half an hour ago Isent an e mail to Dr. Patti, out of UCSF and he has already

responded!I decided to contact him because of the PubMed article that Luna sentme a link to (Thank you, Luna!). In fact, he referred to the articlein his response! He said that the long myotomy was used many yearsago and has been abandoned. They are very pleased with the resultsthey obtain from the lap Heller and that overall he feels they haveprobably the largest experience with the treatment of DES in the USA!He said that he would be happy to see my husband for a consult. Thisis so different from what we've heard from others. I don't think mostdoctors/medical centers have much experience with treating DES at all.My husband said he would like to see what Dr. Rice says first,though. What do you all think? Should we be encouraged by what Dr.Patti has said? I welcome your comments. in c-c-cold Michiganthinking a trip to sunny San Francisco might be a good thing -

atleast warmer ;-)

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Thank you all for your opinions and advise on this! It's helped to

keep me motivated to keep pursuing a treatment that actually works!

gets a little tired and depressed and doesn't always have the

energy to pursue this, but he is definitely tired of living this way!

Debbi: First of all, I'm hoping that they could start with a more

conservative treatment than esophagectomy as the first surgery they

try. I do like your idea to start out with a consult with Dr. Rice.

When it comes to follow-up treatment, etc. it would be easier to drive

3 hours than hop on a plane every time. I've already printed out Dr.

Patti's e mail and I will mention it to Dr. Rice. I'm really hoping

that Dr. Achkar is misinformed about Dr. Rice's opinion. He had told

us in August, that we didn't need to travel back for a surgical

consult, because he would show Dr. Rice the test results and discuss

the case. Again, I know that with DES, surgery is considered a last

resort for the toughest cases, though. You may be absolutely right

that Dr. Rice doesn't know the full story of how most non-surgical

options have been tried, unsuccessfully. I'm hoping that is the case.

It does seem odd to me that Dr. Rice, who is tops in his field with

minimally invasive surgeries, would not recommend a lap or VATS

surgery for DES. Maybe this shows just how few DES patients they see

(or cases as severe as 's).

Notan: Thank you for the suggestion on writing a summary of his

history down before the appointment. I may also take Debbi's

suggestion of using a tape recorder. I had written notes when we saw

Dr. Achkar for the first time, but he didn't really give us time to

discuss all that I had written. I'll try your idea with giving it to

a staff member first.

Carolyn: It sounds like the same Dr. Patti to me (UCSF's website

showed a picture of a large, Italian man). I'm so happy that you and

Cameron were pleased with him! How nice to find a doctor who is

skilled and also has a great bedside manor (also, with very helpful

staff)! It would be easier if we didn't have to travel so far, but at

least if we have to, I know will be in good hands!

Sandi in No. Cal.: Thanks for the tips for San Fran. travel! If we

end up going there, I may ask you for more advise. Don't feel bad

about the bridge thing! I'm really bad about bridges, also. I was

really worried about driving back from Cleveland in September for that

very reason (no really major bridges, but enough on our route to scare

me). I was proud of myself that I made it, driving over them on our

way home. Sadly, one I had feared earlier was one I had to drive over

while I was upset from hearing the news that my mom had passed away

that day. I got us over that one, too (maybe Mom was helping)! I

even survived in August going over the Mackinaw Bridge (5 mile span)

on the back of our Harley! We even had to drive on the grated part,

which makes the wheels sway side-to-side, with a strong side wind

(talk about scarey)!

: Thanks for your emotional support, too! I really needed that

part to curb the butterflies in my stomach! You have been so sweet!

Thanks also, everyone, for helping me to feel I'm not the pushy

wife (or, at least that I have company if I am that way). I think he

even appreciates what I do. I read to him what I was sending to Dr.

Patti and he said, " You talk for me really well " . I guess that's a

compliment! Take care, everyone!

in Michigan