Thinking about surgery... need help..

jillybean720 · 08-31-2010, 05:32 PM

It is possible for a facility NOT designated as a COE to actually be better than a COE - it costs a lot of time and money (and paperwork) to get that COE designation, not just good patient care and statistics. Just because a facility hasn't dealt with the red tape required to become identified as a COE doesn't make them automatically worse than a COE facility. Similarly, just because a surgeon does not operate out of a COE facility doesn't mean a surgeon who does is automatically better.

jiffypop · 08-31-2010, 09:14 PM

to a point, you're right, Jilly. however, many isnurance companies won't pay unless the surgery is at a COE, and the other issue is that at least one knows that the COE has met certain standards of care [and believe me, they or any other facilty could certainly go above and beyond], and that the surgeon has done at least a good number of surgeries [can't remember if it's 100 or 125 or 75 - but it's a fair number]], and has had specialty training under a far more experienced surgeon.

all good Qs to ask ANY surgeon.

jillybean720 · 09-01-2010, 10:17 AM

jiffy, you're right that some insurance companies will ONLY cover COE facilities (which is why COE facilities came into being, actually, as yet another ploy for $$, but I digress), but the OP said she's not using insurance, so that's likely not a factor here. I just don't want anyone to think a surgeon is automatically a bad one simply for not performing in a COE facility. Like you said, there are lots of questions to ask of ANY surgeon, COE or not, and I think some people get a bit lax when they see that COE designation and end up skipping some important questions based on the assumption that everything must be just peachy keen since they're in a COE, which is not always the case.

My surgery was performed at a COE I'm sure everyone has heard of - Johns Hopkins. I woke up with a procedure different from that I was expecting to wake up with and was never provided a satisfactory answer as to why (long story I won't get into right now). I was provided incorrect information about my actual procedure that I only discovered was incorrect when I requested a copy of my operative report and deciphered it myself - had I continued supplementing based on the procedure I was TOLD I'd had, I could have easily driven myself toxic in more than one vitamin. I had to ask for an abdominal binder since one was never provided to me. I had to have multiple insulin injections while in the hospital (had NEVER had insulin for my diabetes previously) because the geniuses hooked me up to an IV that included sugar in the saline solution (which is normal for most patients, but as a diabetic, you could see how that might not be a great idea). They gave me a prescription slip for pain medication that could not be filled anywhere but in the hospital, yet they failed to inform me of this and did not fill the prescription, so I ended up with nothing stronger than Tylenol 3 when I went home (was supposed to have had oxycodone). And the list goes on...

So, do forgive me if I'm not a cheerleader for COE designated facilities

KimberlyHeidi · 09-02-2010, 07:34 PM

Ok I want to have this surgery and now I am trying to get the funds to do so. I know all about the surgery and have researched for years what they do, what I need to do after to have the tool work for me and so on.

My liver is fatty and not doing well. I have decided I want to live a long happy healthy life and I have tried everything else.

I have already been to the seminar and have a consult on the 16th with the Dr and if I give him a grand at that consult then I can go to the scheduled nutrition/mental health appt. After that the amount has to be paid in full and then surgery can be scheduled. There are two Drs who do the bypass here and one does not take self pay.

What questions do I need to ask the surgeon to make sure he is a good and reputable one? What numbers do I look for? How do I know for sure he is not COE and why is that so important. Any help is much appreciated. I did ask my PCP about the surgeon and he did say he has heard a lot of wonderful things about him. However I want to feel comfortable and know what I am supposed to know about picking the right surgeon.

jiffypop · 09-03-2010, 11:59 AM

most important, ask him about the morbidity and mortality of his patients. his answer will tell you about people who've had to be readmitted, or who've had complications DIRECTLY related to the surgery. And he'll also tell you how many people have died within 30 days of the surgery, and WHY [and listen carefully - sometimes it's NOT the doc's fault - take notes and ask Qs so that you can review this information carefully afterwards.]

[for example - my surgeon lost a patient who got on a plane from NJ to Las Vegas a week after surgery, even though she didn't feel well. by the time she got off the plane, she had a fever and was plainly ill with a serious infection. RATHER THAN GOING TO THE HOSPITAL IN VEGAS, she got back on the plane and back to NJ. she had peritonitis and died. if she'd stayed in Vegas and gotten antibiotics, she would have lived.]

Ask how many surgeries he's done - and ask about the average % of excess body weight has been lost, and maintained. ask about how his patients have done over time. ask about support groups for patients that are more than 18 months out from surgery.

Ask about the Center of Excellence Program - he may be approved by now, or he may be gearing up for approval.

I'll see if i can find the requirements for COE approval. that'll give you some additional information.

this is just a start - other folks will have other good advice

KimberlyHeidi · 09-05-2010, 11:49 AM

Is there a website or some kind of guide of what to ask him and what his answers would be if he is a good surgeon? The reason I ask is the day of my consult if I want to keep my mental health and nutrition appointment for the 21st I have to give them a check for $1,000. I wont have time to come home and ask questions. I am not sure if I can find out these answers about him anywhere besides his mouth or if I can possibly email his nurse? I did check into a few other places but they were more expensive. This is really close to my house and he was recc. by my PCP. The surgeon at the hospital I go to does not do WLS on self pay people which I think is odd, but what do I know. From what I have heard and what I have seen I think he is great, but obviously I want to know the numbers. Is the COE based on him or the hospital? I ask because I live in a college town that is not very big and we only have 2 hospitals in town. Thanks again for all your help. I really appreciate it.

jiffypop · 09-06-2010, 06:51 PM

At one time, we had some threads on this, but most of our threads have disappeared.

in general, you want to know how many patients he's lost - and why. and how many surgeries he's done. and how many complications have happened. and whether he accepts complex patients [like patients with BMIs over 60, or who have diabetes and hypertension, or who are elderly- the reason for this relates to surgical skill, even if you don't fall into these categories]. and who will be taking care of you in the hospital. how long you will be there. what you can expect when you're discharged. what his followup requirements are. what the support group is like - when is it held, who runs it.

link to easy guide to center of excellence requirements

http://www.wlslifestyles.com/cached/...lence_main.pdf

jillybean720 · 09-07-2010, 09:48 AM

Here is a list of questions compiled from various sources (not necessarily all-inclusive, and some may not apply to your individual situation, and some are clearly specific to the DS, but procedure-specific questions should be included for any procedure):

General:

How many of your DS surgeries that started out lap were converted to open?
How many of your DS patients have died? From what?
How many of your DS patients have had serious complications? What were they?
How many of your DS patients have had serious nutritional complications?
Are there specific deficiencies you see most often?
How are these patients followed?
Have you had to do any revisions?
How often do you see leaks?
Will my being from out of town affect my follow-up?
How do you determine the size of the common channel, alimentary limb, and gastric sleeve?
What do you think my goal weight should be?

Pre-op:

Do I need to lose a certain amount of weight or get to a certain BMI before surgery?
What is the pre-op diet?
What are the preparations for the surgery? Testing? Timeline?

Surgery:

Will my surgery be open or laparoscopic?
How will the incision be closed? Stitches, steri-strips, glue or staples?
How long would the open incision be?
How long should the surgery take, barring complications?
Will I have an epidural?
Will you remove my appendix during surgery?

In the hospital:

Will I/should I wear a binder after surgery? Does the hospital provide one, or should I bring one with me?
What level of pain/nausea should I expect?
Will I be taking an acid reducer after surgery? For how long?
Will I go home with a feeding tube?
Will I have a drainage tube? For how long? Will I go home with it?
How long should I expect to be in the hospital?
What’s required for me to be dischargeable?
Can my husband or any family member stay with me in the hospital?

Post-op:

Typical discharge instructions?
Will I need to stay in the area following discharge?
When will the staples/stitches be removed?
When will I need to return for follow-up? How frequently?
What type of follow-up do you prefer for DS post-ops?
Can a local doctor provide this?
What sort of doctor?
How can he/she communicate with you about my particular long-term needs?
How often will labs be checked in year one? Thereafter?
Can labs be ordered by my PCP and faxed to your office for analysis?

Activity level:

After surgery, when can I resume my normal activities?
How long should I expect to be out of work?
How soon will I be able to drive?
Do I have a limit on how much I can carry or lift? For how long?
How soon can I begin an exercise regimen, besides walking?
What types of exercise do you recommend and at what stage post-op?

Diet and nutrition:

Are practice nutritionists experienced in DS follow-up?
What is the post-op diet?
What’s the vitamin regimen following surgery? Does it change over time? What percentage of calories and fat will my body absorb post-op?
How many calories and fat grams should I eat post-op?
How many grams of protein should I consume each day?
Do you recommend protein supplements?
Are there any specific foods I should not consume post-op?
What supplements and medications will I be taking post-op?

Longer term medical issues:

Will there be medications that I can no longer take post-op, or medications I won't absorb normally?
What are my odds of getting a hernia? Does the risk vary whether the surgery is open or lap? Can I cause a hernia? What should I do to avoid a hernia?
What are my odds of adhesions?
How might this surgery affect health problems I may develop later? (cancer treatment, need for stronger meds for arthritis, osteoporosis, etc.)

Questions to ask a doctor when considering them to be your Surgeon:
1. How much common channel will I have?
2. How many supplements should I take? If they say none, ask if you CAN take them.
3. What vitamins supplements should I take post-op?
4. How big will my stomach be?
5. Can/should I drink milk after surgery? Sugar? Fats?
6. How often do I need labs?
7. How long am I off solid foods?
8. Of my excess weight, what percentage will I lose? What percentage will I keep off?
9. How "strict" of a diet will I be on?
10. If I am still nauseated or vomiting after surgery, what will yo do for me?
11. What is your mortality rate?
12. How many DS surgeries have you performed?
13. How many DS patients lost?
14. How many leaks?
15. What do you think my goal weight should be?
16. What is the pre-op diet?
17. What are the preparations for the surgery?
18. What is the post-op diet?
19. Can labs be ordered by my PCP and faxed to your office for analysis?
20. What do I do about my medications pre-op? Post-op?
21. How will the incision be closed? Stitches, Steri-Strips, Glue or Staples?
22. How long is the Open incision?
23. Will my surgery be open or laproscopic?
24. How long should the surgery take, barring complications?
25. Will I go home with a feeding tube?
26. Do I bring my CPAP machine with me?
27. Will I be in I.C.U., due to my sleep apnea?
28. Will I have the leg compression devices that help prevent blood clots?
29. Will I get a binder in the hospital? Or Do I need to provide my own?
30. How soon will I be able to drive?
31. Will I have an epidural?
32. Will I be tested for H. Pylori bacteria? And, is there anything I can do to prevent it?
33. Have you ever started a DS and couldn't complete it?
34. Will I have a drainage tube? For how long? Will I go home with it?
35. What type of pain medication will I be given for home use?
36. Are there gowns in the hospital for someone of my size?
37. After surgery, when can I resume my normal activities?
38. Do I have a limit on how much I can carry or lift? For how long?
39. How soon can I begin an exercise regimen, besides walking?
40. Do you have a list of medications that I can/cannot take?
41. What about future pregnancies? Will they be considered high risk? Will I need a specialized OB/GYN?
42. Should I get a medic alert bracelet?
43. When will the staples/stitches be removed? Will I have either?
44. Will I get injections of Heparin, to prevent blood clots?
45. What supplements can I take to help prevent/lessen/diminish hair loss?
46. How many of your patients have lost their spleens?
47. What are my odds of getting a hernia?
48. Can I actually cause a hernia?
49. Will I have a Foley? If so, how long will it stay in?
50. After surgery, how do you detect for leaks?
51. What are my odds of getting a UTI, bladder infection or yeast infection?
52. Can I meet the anesthesiologist beforehand?
53. How soon will I be able to shower after surgery?
54. When is the soonest I can get scheduled for surgery?
55. What are my odds of adhesions?
56. What is the youngest person you would perform this surgery on?
57. How long do I stay in Recovery?
58. Can someone stay with me IN the hospital?
59. How long before I will be at 100% healed, barring complications?
60. How long will I be in the hospital?
61. How often are follow-up visits, post-op?
62. What year did you begin performing WLS?
63. Are you a general surgeon, or do you specialize in Bariatrics only?
64. Are my gallbladder and/or appendix removed during surgery?

Jen · 09-07-2010, 11:30 PM

This is such a great thread!! You two are fabulous resources, everyone reading this thread is very, very lucky to have the benefit of your experience.

KimberlyHeidi - I'm really glad to read that you are going through with the surgery or at least on your way, I was worried that the lack of money was going to be a deterrant so I hope you have found a way to pay for it or at least part of it. That one post really hit home for me as well, I feel like my quality of life is awful so WLS is an option I am also looking at, I have a seminar next month I am going to. Please keep us up to date on how everything is going.

KimberlyHeidi · 09-08-2010, 03:58 PM

Thank you so much for all of your help. I am still confused on the COE and if that refers to him and the hospital, only him, only the hospital or both.

Also should I write down the answers to these questions or just try and remember them? What do I look for that means I might want to look else where and not give him my check? Example how many surgeries should he have done etc. I have looked all over and cant really find the answers to these questions. I know he practiced in Texas before here and then moved to Virginia. I live in a smaller college town now and do I need to take into consideration that the other weight loss surgeon in town has more people as he does most the surgeries but he only accepts people who have insurance?

I just want to know want to look for as far as warning signs and a minimum number of how many people he should have preformed the surgery on and a max number or percent who had complications etc.

You ladies are life savers thank you so much for helping me with all this. My grandpa is trying to get the money for me out of what I would get when he passed as this is pretty urgent with my liver now. So hopefully that part will fall into place. I see the surgeon on the 16th then nutrition and mental health on the 21st. When do they normally let the Dr know if you "passed" or not?

ymadeline · 09-08-2010, 07:11 PM

Hi! I am new to this board. I had gastric bypass last year (December 2009). The first month was incredibly tough -- but, for me, totally worth it.

I have friends who are morbidly obese who would greatly benefit having this surgery, but I don't recommend it to them. Why? Because no matter what type of weight loss surgery you choose to have, this is a very serious step to take. I have had numerous surgeries in my life, so I wasn't afraid of dying due to the procedure. I was more concerned with my quality of life, which was rapidly deteriorating.

Don't look for signs. Do read and research as much as you can. If you decide to go ahead with surgery, make sure that you pick a surgeon and a facility that is experienced.

Don't go ahead with surgery because you think it is an easy solution. It's not. The surgery will provide you with a tool to help you loose the weight, but it will still be up to you to learn how to use that tool properly. You will still need to change your eating habits and your relationship with food. To be successful, you will need to make those changes for life.

One of the biggest advantages I gained from food (aside from lowering my cholesteral 88 points, getting off of several medications, loosing the pain in my knees that caused me to swallow 4 advils at a time, --- I could go on):

Hunger used to be a loud roar that was always in the background. Now it is a quiet whisper.

annie175 · 09-08-2010, 08:44 PM

Wow, sounds like the war of bariatrics. I had RNY bypass. I also had dehydration. Was back in the hospital two weeks later. 2 day stay to get re-hydrated. Then at about 9 mos later had an internal hernia. Both fixed easily. Big deal!!! Would I do it again...Heck yes. Do the research for YOURSELF. My BF did the research 1 year prior to my surgery, she had RNY a year before me. I did my own research. If you truly want to better your life, you will do what is right for you. Was I scared, yes, at first, but then with my support peeps and group I got over it. Would I do it again, as I said earlier, without a doubt. My life is sooooo much better now. Healthy, happy, and great. This may sound harsh, but get over it, quit making excuses not to do it, food is not all it is cracked up to be and truly NOT your best friend. Just do it.

jiffypop · 09-08-2010, 11:30 PM

Kimberly - Jilly's list is extremely detailed, and i really like several of the GENERAL Qs. a number of the other Qs are perfect on your next visit - especially if you've passed all the exams and such. and still others are appropriate as your surgery date gets closer.

the biggest points you need to find out on the first visit are:

are you safe in his hands? and how can he prove that to you [that's why you need to find out about the number of surgeries he's done, how many people have died, and how many have had complications]. there's no exact number of surgeries that means he's good, but seriously do you want to be his, oh, 15th patient or his 150th? and you're looking for a LOW rate of deaths and complications [less than 1% of deaths and less than about 4% of complications]. and if he has a BMI cutoff or doesn't do surgery on patients with more than one comorbidity [like hypertension AND diabetes], he's probably not as experienced as some others - doesn't make him a bad surgeon, but some people [like me!!!] really needed a surgeon who had a good record on superobese patients.

and other measures of his competence/skill is the number of patients who've been super-obese, the average amount of weight his patients have lost, and maintained. and what his post-op support is like.

You also need to be sure that you can TALK to him - and that he'll take the time that you need, and explain things in a way that YOU can understand. A notebook is helpful for this. some people take a trusted friend/husband/someone into the exam room as a second pair of ears.

the COE and the doc go hand in hand. in order to be a COE, the DOC has to have certain experience levels, and the center itself has to be set up to serve bariatric patients. i can see why you're confused here.

On the Doc's side, he's talked to lots of patients like this, so he's expecting to tell you certain things - make sure you listen carefully - he may answer some of your Qs without you even having to ask. but bottom line, be sure you can talk to him.

jillybean720 · 09-09-2010, 09:45 AM

COE stands for CENTER of Excellence, so it is the facility that gets that designation, not the actual surgeon. In fact, some surgeons have OR rights at multiple facilities and could very well perform surgery in both COE and non-COE designated hospitals. Again, I personally don't believe COE is very important as long as you know some details about the facility you'll be in (as jiffy mentioned, I would ask, if they are not a COE, if they have bariatric-friendly accommodations, such as larger sized gowns, extra wide portable toilet seats, experienced staff trained to assist larger patients, etc.). My hospital had a bariatric wing - the only other patients in the rooms around me were all bariatric patients.

Again, I would also not limit yourself to only those surgeons "in town." If you're not comfortable with a surgeon or facility, do not be afraid to travel a bit.

When I had my psych eval, they told me right at the end of my appointment that they saw no reason to recommend further counseling nor to hinder my moving forward with surgery. I can't say that's always the case since different doctors work in different ways, but I knew right that day that I had "passed," so to speak.

jiffy also raised another VERY important point - in all the questions you ask, be sure to ask about topics specific to YOU. For example, since you have liver issues, that should be a hot topic of discussion. Find out if the surgeon has frequently performed surgery on other patients with similar issues. Ask how many times he has been unable to complete a procedure due to a fatty liver being a hindrance. Ask how many times he has accidentally damaged a liver by trying to work around it. Ask how many times he has had to convert a laparoscopic procedure to an open one due to the size of the liver. Ask if they routinely conduct a liver biopsy after surgery to make sure the liver is healthy (aside from being fatty). Almost all morbidly obese patients have a fatty liver, so these are questions he should be easily able to answer.

KimberlyHeidi · 09-13-2010, 09:12 PM

Thank you ladies again. I feel I am at the end of my rope. Now that I finally feel ready to take this step and know in my heart with all the research and taking a really good look at what my life is like that I need this to live. My husbands insurance does not cover anything weight loss related or anything that actually I need so we dont even get it. We pay for everything out of pocket and thank goodness my husband is healthy as a horse and never has to go in for more than a yearly check up.

We do not own a house we rent so there is nothing like that we can take out. I dont have much family and the family I have doesnt exactally care about me or want to help me. The ones who care and do want to help cant financially. My grandfather was supposed to be trying to get money out of a trust from my grandmother who passed away many years ago so I could have the surgery. Right now he is going through a lot and in the hospital off and on due to not having any kidneys and being on dialysis every other day. Believe me I understand he is not well and I feel awful about it. He is in his 80's and been through everything from cancer to strokes to heart attacks etc. It was very hard to explain to him why I need this surgery and why its my last hope. After getting the very scary news of my liver and my Drs urging me gastric bypass was a good next step he asked me to mail him the paperwork. I have to give them $1,000 if I want to keep my appts for nutrition and mental health on the 21st. I see the Dr this coming Thursday. Well I sent everything to my Grandpa and had not heard back from him a few days and found out from my step grandma he is in the hospital again and she wont bother him with this. Again I am not making light of his situation and I feel awful for him. I felt I was so close to being one step closer and now I feel I am back to step 1.

I have searched for places offering payment plans but have found nothing besides credit cards and loans etc. I know I wont be able to get any where near the amount I need. I just dont know what to do. Do I keep my appointment on Thursday and just tell him I am trying to find a way to pay for it? I just dont know. All I can do is cry. I have needed this surgery for so long and now my body is catching up with me and I want to do it and I cant.

I am just losing hope. As far as going other places there was a Dr about 2 hours away that I was impressed with as far as what it said about him but he is 8 grand more. I have found a few other places slightly less but then when you put in either airfare or gas, taking my son out of school, hotel stays etc it doesnt seem worth it. The places I have asked had said I had to drive or fly out there at least 3x before the actual surgery and then stay in a hotel at least a week or so after the hospital stay and that is without any complications. Can anyone suggest anything to me? Is there any organization for me to turn to? If I had Medicaid I would be approved for this surgery in a second I am told, but I dont and I cant get disability either as they dont consider my weight a disability.