Leaking, leaking, leaking

[lellow 1,713]

I was the lapband poster child, I really was. Banded August 2008 and I had amazing success. I got down to a BMI of 21 at my lowest but my 'stable weight' had me at a BMI of 23.

I exercised to lose, and the band helped so much. I ate like a bird, and I felt healthier and happier than I had in years.

But towards the end of 2011, I started feeling like my restriction wasn't there. The same restriction I had enjoyed pretty consistently for almost 3 years. So in Jan 2012, I went to see my dr.

I definitely had lost Fluid out of my band but to be sure he sent me for a bunch of tests. I did not have a slip, I didn't have an erosion. The band was just leaking.

So in March 2012, I got port replacement surgery.

Fast foward a few months. I'm still not 'holding' restriction. I go through a couple of truly terrible over-fill incidents, and we both become convinced my band is not leaking, it's just 'fickle'.

Then in August 2012 or so, he removes all the fluid and oops, I've lost 3cc again. He is confused and says it's rare to happen twice but let's go fix the leak again.

So I have a second op. The ops are tough, I swell like I'm 6 months pregnant for a week. But this time, he says he's checked everything and there is no leak.

He fills me til I have 10cc in a 10cc band and for a few days I am struggling to eat anything. But it doesn't last. A week in, I'm eating bigger meals. A month in, there isn't anything I can't eat.

And since January, I've gained 25lbs.

Because I have work commitments, I don't go back to see him for a few months. By this stage, not being able to fit into any of my clothes, I've started to diet and exercise. It keeps me from gaining anymore, but I'm not losing.

Last Friday I finally went to see him. A different doctor attends to me, and when she withdraws the fluid, I've lost almost 4cc since Sept. My band is leaking. It's still %$@ing leaking!

So here I am nearly 13 months from when it was first discovered that I have a leak, no better off. I'm maintaining my weight at a BMI of 27 with work and discipline, but all I need is one 'bad' day and I gain weight that I then find nearly impossible to get off. I'm not scared of exercise, but if I had any ability to control portions, I wouldn't need the band. I can't eat like a 3yo for the rest of my life without it.

So what now? I don't know. I have to see my surgeon again in a month to talk about my options and I'm not sure what to advocate for. Do I advocate for a sleeve, knowing that it will mean a lot of time off work that I can't afford? Or do I try to fix my band again knowing twice before it didn't work? Or do I just throw up my hands and try this on my own?

My surgeon is determined to fix this. He has never had a patient like me and he doesn't want me to have done all this for nothing. And I don't want it to be for nothing.

So I'm stumped right now and am asking for opinions. Any opinions would be welcome. What would you do if you were me?

[DELETE THIS ACCOUNT! 12,703]

Oh my goodness, I'd be beyond frustrated and upset in your shoes. I'm so sorry you're going through this.

If I had to make your decision, I think I'd want my band completely replaced. You did extremely well with your band so it's obviously a very good tool for you. I would stick with what works.

Btw, I'd be seriously pissed at your doctor if I were you. Replacing the port is only part of the band and obviously your leak is in either the tubing or the band itself. It's ridiculous that you had to go so long with Fluid continuously disappearing when a leak was so evident.

Best wishes with whatever you decide.

[Maddysgram 6,159]

Third times a charm?????

Sorry you're having these problems. Its a shame that you know how good it works, when it works.

I would think Dr would be very very careful on fixing it this time.

I recently had my port flip and my Dr was upset b/c only his second flip in 100's of surgeries. My port revision was a lot easier than LBS.

Best to you, let us know what happens!

BTW, my Dr did say leaking tubes were much more common.

[lellow 1,713]

The thing is (and I get the reasoning behind it) he explained to me that if it were a leak in the band itself, it is expected that it wouldn't be a slow leak like I have. Because of the amount of pressure the band is under compressing your stomache, they believe if it was a leak in the band that all the Fluid would have leaked out in a matter of weeks.

However they are now conceding that it may be in the band itself.

When I did my first port replacement surgery in March 2012, they did in fact find a leak in the tubing. It was a noticeable leak, which is why he was sure he'd solved the problem when he replaced it. And it seemed the subsequent leaks were only apparent when I hadn't seen him in a few months. Losing at a rate of 0.25 a week or so, it meant that when I saw him every fortnight, it just looked like he didn't manage to get all the Fluid out when he withdrew it.

After my last op in August, even I was convinced I wasn't losing any fluid. I'd go in, he'd withdraw the fluid, it would be maybe 0.5 cc less than expected and he'd put another cc in. It was only because I was at 10cc at my last visit in Sept and just over 6cc when I saw her on Friday that it became beyond a shadow of a doubt.

When I saw that there was only just over 6cc in the syringe, I almost burst into tears, because I realised that up to that point, I'd been feeling like a hypochondriac every time I said I didn't have restirction anymore.

I am wondering about a full replacement. I do agree that the band has worked remarkably well for me in the past but I am now concerned about its life expectancy. I don't want to have to keep replacing it or having multiple ops every 4 years....

[DELETE THIS ACCOUNT! 12,703]

I don't blame you in the least, I wouldn't want to be going through that many operations over and over either. Not to mention the scarring of your stomach tissue from multiple operations wouldn't be good.

I do know that statistically speaking, what has happened to you is very rare. The chances of it happening again down the road is even more rare.

Maybe ask your doctor the chances of this happening again?

At the end of the day, regardless of statistics and what your doctor says, you have to do what is best for you.

[Jim1967 3,569]

I agree with what all the above has stated but one thing is for sure at this point if you're sticking with the band I would demand a full replacement or nothing. All those surgeries along with all the testing did nothing but waste your time and provide heart ache.

You have to do what is best for you but one thing for sure the band did work for you before. So getting yourself a band that is not defective would have you on the road to success.

If I were in your shoes I would be thinking of other options over the band as well . It's really a tough call. I wish you much success with whatever option you choose.

[Jim1967 3,569]

I would be pressing for discounted services as well...

[lellow 1,713]

I'm currently not paying for my visits to the dr and the last two surgeries were covered in the majority by my (Australian) private health insurance. If they were looking at full replacement I will be expecting that it will not be at a cost to me, except for the anaesthetist. I have lost enough hours at work, and spent enough time in pain to expect that at a minimum.

Which is the other issue for revising to sleeve, because while band removal is completely covered and will incur no cost to me, revision to a sleeve will incur significant cost (as it's new surgery), and I'm loathe to pay yet again for new wls.

And while I know that what I've experienced is rare, I can't help but to have lost confidence in the band. I know it's worked for me, but despite going under the knife, not once, but twice, it's still not working. I worry that even if I get a complete replacement, I'm going to forever be wondering when it's going to fail again.

I guess it's a bit of a no win situation. I need to try to fix it (again) and hope for the best. I don't think revision to a sleeve is possible for me right now. More because I can't take the time off work. If it starts working again at least it's something...And if it doesn't work, I guess I'm no worse off than I am now...

[Jim1967 3,569]

When you say "fix it again" I hope you mean full band, tube and port replacement. If I were you I would settle for nothing less than that. Brand new everything right down the final stitch.

[lellow 1,713]

That's the plan, yes. Full replacement as port and tubing replacement hasn't fixed anything so far, so I wouldn't settle for anything less.

[sherrypep 91]

Hi, I share your pain. I too have had missing cc's over the past year. All kinds of tests and my Dr. says I am a mystery. I go from no restriction to tight to no again. Now I have constant heartburn, hicupping and reflux. My Dr. put in for band to sleeve revision and my insurance approved it but I am very scared to go through all this again. I am down from 207 to about 160 however I have had nothing but failure and discomfort from the band. I really have to weigh my options. Good luck to you, I really hope it all works out.

[lellow 1,713]

it's awful to hear that someone else is going through it. Did you find you gained weight while the band was leaking?

The only times I was too tight in the last 12 months was when he tried filling me right up to try to 'test' the band. Both times I had to have an unfill the next day because I wasn't even able to hold down my own saliva. It proved, I guess, that I could get over-tight if he pushed it too far too fast. But aside from those two days, I've not really had restriction that's lasted more than a week after a fill before I could eat anything I wanted again.

I am pretty sure I'm going to be asking for a band replacement instead of a revision to a sleeve, so am going a different route from you. I hope both of us manage to get some peace from what we're choosing. Good luck.

[sherrypep 91]

I stayed the same weight give or take for 6 months and the same as you with the eating. Two months agao he filled it to the max and I also had to go for an unfill. Refilled to the max on Jan 8th due to 3cc's missing, and was full tight and slowly it is getting less and less as the weeks go by. Now I have constant heartburn and discomfort. It is sooo frustrating.

[lellow 1,713]

The first time I was overfilled, he put 2cc in at once and took me to 9cc in my 10cc band. I also think I had food poisoning from something I ate earlier in the day because I already felt off. I ended up in hospital the next day and had to be put on a drip because I'd thrown up every 15 mins for over 24 hours and was very dehydrated. They unfilled me in emergency by 1cc as per my dr's instructions and I got immediate relief.

The second time he filled me to 10cc and again I starting throwing up my own spit. So I went back in the next morning and got him to take a cc out and again, immediate relief.

The last time I saw him 4 months ago, he pushed it to 10cc again and this time, I didn't have the same over-fill reaction. And it took less than a month to feel zero restriction again.

Last week they found I only had 6cc in my band. She put another 2cc in to bring it to 8cc but really, that did nothing. I'm hoping to go back on Monday to get her to put another cc in (my surgeon is currently away), just to help with the hunger until I manage to actually see my surgeon. I'm soooo sick of the yo-yo so I feel you.

[jmont 13]

Hi

I have had the same thing happen! I have now had two port replacements the first one the Dr said the cord was completely shredded he said with my model the did not not make the cord long enough! Like you I gain weight back when it was broken last October I had my second port replaced there was a small hole near where the port and the cord joins! My Dr said if this happens again he will replace the whole band! I now have my band filled with a think solution not saline! I have been told this helps with any small possible holes!! Good news is since being fixed I have lost 7.5 kg I'm in Australia too so both surgeries did not cost me anything and if I have to go for the third time I will not have to pay either!! I also lose Fluid when I fly so every month I go for a top up after flying but since they have been putting this thicker Fluid in I have not had to do this! I know exactly how you feel but I am a huge supporter of lapband and I would get it fixed time and time again!!! As I know I'm still a fat girl inside and that was proven when my band didn't work I started gaining again!! My fear of being 126kg again out weighs my fear of surgery!! I hope this helps best of luck with your decision