Advice needed urgently :(

[Mandie37]

Hi all

Some of you may have seen my posts over the last 18 months.


I developed a pouch before Xmas. I have never really had great results apart from the first two months after surgery. My two year cover is up in June. I have been countless times since June 2013 for fills and defills.


To cut a very long story short. Whenever I had a fill I would be ok for a couple of weeks and then suddenly for no reason at all I am constantly sick and can't even keep fluids down. Again I have to then have a d e fill and live with minimal if any restriction.


The most I ever got to was 6.5 and then the pouch appeared meaning I had to completely empty the band for 6 weeks resulting in a stone in weight gain. In total in 20 months I have only lost 1.5 stone !!!


I went again this week after having yet again last week having to have 1ml removed through constant sickness. They put .25 in as filling slowly cause of pouch returning.


They advised me that it may need re positioning at a cost of £4000!!!! Which is discounted !!!!! Where do I stand with this. Why should I have to pay when it has never been right from the start? I am so disappointed in the band right now. I am thinking of making a complaint to the surgeon. What do you all think I would be really grateful for your advice on this




Thanks


Mandie

 

[Carolb15]

Hi omg that does sound awful, I am only banded a week and really don't know very much, there are some very experienced banders on here that will come and advise you, if it was me I would take it further after spending all that money and it has not worked from the start, doesn't sound like you got what you paid for, I hope you get this sorted, please let us know how you get on with this, what provider did you use as a matter of interest, take care.

 

[Mandie37]

Thanks for your reply , had it done at the Alexandra hospital in cheadle

 

[Sharie65]

Have they not done a swallow test to see what's going on? I had a swallow test which showed that my oesophagus had dilated as a result of my band being too tight. This was caused by scarring which had strangled the band. I did not find this out until much later in the process as doctors hoped that by emptying the band, it would correct itself. It was like food trying to go down a blocked plug hole and kept backing up in my oesophagus. At night I would vomit this undigested food which would not pass through and developed chronic acid reflux. My band was emptied (it only had a small amount in it about 1.5ml). I became dependent on eating slider food, chocolate sucked, ice cream, custard etc and put on weight as a result. After a year of suffering with constant reflux and vomiting, I had my band removed. I was told my body was rejecting a foreign object in my stomach. I had the band in for 2 years in total. Lost 4 stone in first 6 months and then nothing when band started to go wrong as a result of scar tissue build up. You really need to ask your provider for a swallow x-Ray to find out what's going wrong. I wish you good luck.

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[flutterby1966]

Sometimes these things can the band/surgeon/bander error, but other times it can sheer bad luck ... Could there even be other underlying medical issues? Having said that, I am sure its not at all pleasant to be unwell, worried and not have any answers. I would pick up the phone to your provider or even speak to your gp to see if they can get tests done. Big hugs mandie x

 

[Mandie37]

Hi

I had the swallow test just before Christmas which
Is when they emptied it. I was having awful
Reflux day and night and had to take lanzaprozole twice
A day due to oesopagul ?? Dilatation and a pouch . They
Emptied it for 6 weeks and said they would re fill very slowly.

Been having it filled slowly and when I got to 4ml the regurgitation and
Constant pain and relentless burping and vomiting. Now back
Down to 3ml and little if no restriction at all. I really am
At a loss as to what to do and what my next step should be.

Feel like they are fobbing me off after taking my money.
Telling me to let it settle! It's all I have heard really for over
12 months in and off .

I'm furious and actually very down and feel at a dead end.

Tomorrow I am going to phone my nurse who is lovely and demand
Some answers and a plan of what can be done to stop
This constant messing around and fobbing off.


Mandie (

 

[Sharie65]

Sounds to me like your band isn't working properly and needs to come out. My oesophageal dilation took 6 months after removal to heal. Cannot believe they gave you a fill without allowing it to settle down. Mine never did which is why thy removed the band. I was so relieved to have my band out. Could eat and drink normally virtually straightaway. No more frothing at the mouth, bringing up bile, vomiting, acid reflux.

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[Georgie163]

Hi Mandie,

I've never had a band and am not aware of the problems that can arise but sorry to hear it be so problematic for you You say you are coming up to two years, normally BMI hospital standard contract for revisions are for 12 months, did you pay extra for an additional 12 months cover? How soon after the band where your problems documented ie up to the first 30 days, greater? I take it you went direct through BMI Alexander and not via a third party company like hospital group?

It's important to work out whether the revision required is based on a complication of the surgery itself and how soon these problems were established. I would then recommend getting a copy of your contract and full terms & conditions from the business office, speak to the bariatrics team and ask for it to be referred to the hospital director. Only they can approve whether it will be charged or whether they will foot the bill, best case scenario you don't pay, or alternatively the surgeon may agree to forgo his fee for a revision, but that could still leave you with the theatre fees and anaesthetist fees (which sounds like what they could possibly have already worked out for you to come up with £4000).

I think they can do better than that. Good luck x

 

[sarahrob]

Oh mandie, that sounds awful. I hope you get some answers x

 

[Banderbird]

This sounds terrible, I hope you get get it sorted out..

Do keep us updated x

 

[WeightlossDreamer]

Gosh mandie sounds terrible x x

 

[joanne h]

Thanks so much for this post. I am seeing my provider on Fri. I am now going to ask for a swallow test. I have chronic reflux and am constantly sick. I am lucky if I can get 500 cal of food in me in a day. All medication is not helping. lanzaprazole, ranitidaine and motillium all on max dosage.

does anyone know how to go about band removal if its required - will i be able to get this via the nhs or will it be another hit to the bank balance?

Thx

Jo

 

[Mandie37]

Hi all.

Well I have been on a mission the last two days.

First of all I drafted a letter outlining the constant
Problems I have had since the band was put in.

I had .25ml put back in last week so am now at 3.25ml.

I had a quarter put in as was struggling badly at 4 so took
Me down to three but had very little restriction.
Since having the quarter put in I have even less ?? How
Does that work.

Anyway , I phoned my bariatric nurse who told me to phone
The consultants secretary to enquire about having it
Repositioned and cost as I had only had an approx
Cost. She said in my file the next step showing in my
File was an x ray to look at the position of the band.
I am booked in on Thursday to look at it.

She gave me a cost for repositioning of £3276

Told her I couldn't afford this and surely they should waiver
Some if not all of the cost. The executive director
Of the hospital had agreed when the pouch occurred to waiver
All fills under X-ray as I had used my three that were covered before October last year.

His secretary said she would go back and ask the question as to
Wether anymore could be done on the price and would
Phone me tomorrow.

I won't give up without a fight about this because
I have had a band that for my money is not delivering
Results and never really has.

I am so down as at the moment I know my weight is
Creeping back on as the weeks go by due to not being
Able to get a good enough restriction without making myself
Ill. My nurse told me to eat small portions !!
Had I had the will power to do that in the first place I would never
Have needed the band!!!

I will update again as soon as I have had the X-ray in Thursday
Afternoon and also if they budge on the cost at all.

Thanks for all your replies

Mandie

 

[WeightlossDreamer]

Good luck with everything hope you get some resolve soon x

 

[bandito]

I've just been reading random threads and read one from you previous and then this one and twigged you are one and the same person - bit slow on the uptake me

Anyway - just wanted to send you my wishes. I agree with you that as it never 'worked right' from the beginning that this is essentially an 'historical' issue that should be covered by any guarantee's you were given at the beginning.

I could understand a charge being raised if you had been free of problems and losing for a significant period and THEN got problems but, as this has been an issue almost from the get-go your initial cover should still be in place.

Fight for it.

 

[Mandie37]

Hi all.

Just wanted to update you all. I was supposed to have had an x ray yesterday to look at the bands position.

I was ready to go and had a phone call from my bariatric nurse who informed me they were going to charge me £480.00 for it.

I wasn't aware at all. She advised me that it wouldn't tell them or me anything that we didn't already know and the repositioning was the only way now.

I am currently still in talks with the hospital regarding the cost to have this surgery.

I am hoping to find out today and possibly having the surgery next Wednesday. I am trying to find out what I will be covered for after the repositioning or if I have to pay for fills etc afterwards.

I spoke in depth to my nurse yesterday and unfortunately with the band it can all be going well and change at any time for no apparent reason and it does come with this risk. She said I have been unlucky.

I would hate to put anyone off having one as my sister has had amazing success and her has never been a problem and she has lost 7 stone.

I think I have just been very unlucky and am hoping the op will help and I can put the last 20 months behind me and start again and see some results.

I will keep you all posted

Positive thinking is what keeps me going.

thanks

Mandie

 

[Mandie37]

I went to see my surgeon after cancelling the x ray on the advice of my nurse saying it wouldn't tell them anything we didn't already know.

He said there was no way he would reposition until he had checked on xray that the bands position was incorrect! makes sense I suppose.

So now I have wasted another week when I could have had the xray done last week. I didn't want to drop the nurse in it though as she probably shouldn't have advised me to cancel.

I am now having an x ray tomorrow at 930 to see if it has slipped. If it hasn't they may again start to fill slowly in the hope that its just been a blip.

I really don't know where I am up to now to be honest. If it does need to be repositioned the hospital have cut their price by 15% not a lot but better than nothing I suppose.

If it shows it hasn't slipped I don't know where that will leave me to be honest as I seem to be really ill when I get to any kind of restriction.

The consultant said he understood my disappointment but it is a risk with the band and he cant keep doing adjustments for free !

The x ray tomorrow is costing me £350.

Ah well another day of uncertainty ahead. I see the consultant again on Thursday so will update then

Thanks

mandie

 

[top_kat]

oh my goodness, what a lot of back and forth. I've had something similar as they investigate my leak, check up at 3 weeks only to be told that 3 weeks wasn't long enough and it had to be 6 - had to start all over again

it is hard, and I understand how frustrating it is, I have another follow up on the 27th, which will then lead to the xray check.

The uncertainty isn't easy tho is it, I do hope things get sorted one way or another so at least you know,

 

[Mandie37]

Hi all

I have now had the xray which showed that the band was obstructed. It look in the correct position when lay down. As soon as they stood me up to drink the contrast they could see a small pouch again. The contrast was going through too slowly meaning they can never tighten again due to already slow at 3.25mls.

It was decided to now reposition the band with surgery in the hope that it will be able to work again.

I am now booked in for 2nd april. I have mixed feeling to be honest. The bigger part of me is saying I should give it another go but there is a part of me that's scared. He told me its not a straightforward op due to the scar tissue.

It will in the end have cost me another £3200 but feel I would regret not trying to have the success I had hoped for if I don't try if that makes sense.

Has anybody on here had a reposition and was it a success?

The consultant has told me that he wants me to follow a liquid diet for longer than usually recommended so that the new repositioned band can settle. There is always a chance that the pouch will reoccur. He emptied it completely yesterday so that any inflammation has chance to reduce before the op on the 2nd.

Fingers crossed it works if I don't lose my bottle before the time comes

Mandie

 

[top_kat]

Oh fingers crossed that this will all go well and work for you! Its so hard and frustrating when its not working as it should, but I totally understand where you're coming from with regards to the regret if you don't try.

And I think that's a good plan too re the liquid diet for longer to allow things to settle, anything which can or may help has to be a good idea