Newbie; Hallo!

[Its_a_JD]

I'm 33 and have finally gone to my Dr about weight loss surgery.

I have to follow their guidelines before I even see anyone about it, but it's fine. I consider them challenges and maybe along the way a path of discovery for me.

I have to attend a weight management program locally, and also do at least 1 months worth or Orlistat, which I plan to run concurrently with the weight management program and thus do a low fat diet. Depending on how I go with that, I guess if I lose weight in a decent band, and can cope with the food I might continue on that road for now.
However something has to give, and I've given up trying to do this myself.

Despite being overweight for around 20 years of my life, this is the first time that I've actually approached someone about it in more than a passing way.

I have numerous problems, although not the typical morbid obese issues like Diabetes (hopefully! doing a test for that), heart problems, high blood pressure, however I've picked up a couple of other conditions which mean I need to sort my life out, or ultimately risk blindness as a likely hood, and I will develop other health problems.

I'm ~ >20 stone (due a weigh when I next see a nurse), I have a BMI of 44, and I smoke, and I thus need to also give up smoking, whilst losing at least 5% of my overall weight to even get a referral. It is not even a guarantee of surgery, so I'm kind of half and half about this route, however I will try it, nothing to lose!

Do I want surgery? Yes, I'm not going to lose over half my body weight on my own, it's been a long travelled track that I keep falling over with all the ruts now. But as I've got to follow these guidelines first, to get a referral, the least I can do is give it my all for myself!

So erm, hello! I'm not overly sure if I should be here, as I'm not even on referral stage, never mind confirmed surgery, but that will be my next option to seek out if all above fails (and if above does fail, I'm heading in that direction anyway!)

I am struggling to find support. I don't want to confide in my friends, it becomes the *whispered fat word* when I'm around and they're talking about losing a few pounds here and there, and I am very deep rooted that this is my problem that I caused
My family, brother doesn't know yet, or maybe mums told him that I'm going down this route, but we don't talk stuff like that, mum is ok with it, but throws obstacles at me like oh you wont be able to do this for exercise, or that. Not unsympathetic or nasty, but as is her nature, will always find the down sides of things. Dad is fine with whatever I want to be/do! And that's my limit of support.

I'm strong, and can do this, but it'd be nice if I were allowed to hang around here, whatever my outcome, to chat, and see feel good stories of real weight loss, and the ups and downs with mass weight loss, not the weight loss of a few pounds that all of my friends profess too because their size 10 dress was a little tight. I just get frustrated with the "why dont you lose a few pounds with us, you can be thin then", when realistically they don't realise the enormity of losing effectively another person. It doesn't compare, it can't. If it were just a few pounds, I wish!

I'm rambling Sorry! (also UK/NE based, but it seems a mixture here)

 

[top_kat]

Welcome - of course you should be here - there are many members who are going through the similar places that you are, in terms of referrals, awaiting funding or those early stages as well as those who are post op. So, you hang around as much as you like, and it can certainly be of a support while you're going through this.

So welcome and enjoy

 

[Samsara]

Hi and welcome to the forum I enjoyed reading your post - thanks for sharing and I hope we can share our journeys. I am currently jumping through various hoops to try and get funding. I am 40 now and have been overweight since the age of 15 - I am 20st 5lbs at the moment Like you say, others without much of a weight problem (the "oh I need to lose half a stone, I'm fat" brigade) don't realise the enormity of losing half of our body weight/another person. And this is why we need the assistance/tool of what weight loss surgery will give us.

I wondered if your condition was IIH as I was diagnosed with that too in March 2011 and my life has been a misery since. I was also hospitalised with meningitis at the same time. I haven't really "recovered" from either hence my pushing and pushing my anti-surgery GP for intervention. Fingers crossed we both get what we need for a healthier and happier life.

Good luck on your journey and I look forward to reading about your progress, Nic x x

 

[femfrankie]

Hi & :welcome: JD

I too am also at the beginning of the journey. My weight is costing me more and more with my health too. I have a crumbling spine, arthritic knees, an enlarged heart etc etc the list goes on and on . The one thing that is not on that list is the one thing that you must have in my area to get funding for WLS via the NHS... Diabetes... I don't know how or why the doctors looked at me differently but I can't express my gratitude to them all for getting together and making my case and getting me that funding and I do not intend to disappoint any of them. I am in this to succeed!
I wish you the same luck as I have had so far in your own personal journey. You certainly have come to the right place for info and support as this a great place to be.

 

[tracyt84]

hi and a massive welcome to the group,and good luck on your journey xx

 

[Its_a_JD]

Thank you all for the welcome! I feel better about putting myself out there, feel more positive for even taking the first step. I have been extremely private about weight issues, and just managed, so to see the doctor about it is a big thing for me. I can see by reading, some of these weight management courses can take a while to get on, so I'm just going to wait to hear back about that, a likely hood of when I can hopefully get on it.

The list to even get a referral that I have, I don't know if it;'s the ultimate funding one, but it just reads that you need to have diabetic and thyroid serology recorded, so I'm fairly sure I'm not diabetic anyway, but that it means I don't need to have it to move on. I just feel so frustrated that the numbers of hoops to jump though for something that will benefit everyone is a shame for a good surgery option.

I wondered if your condition was IIH as I was diagnosed with that too in March 2011 and my life has been a misery since. I was also hospitalised with meningitis at the same time. I haven't really "recovered" from either hence my pushing and pushing my anti-surgery GP for intervention. Fingers crossed we both get what we need for a healthier and happier life.

It is IIH. I was diagnosed at 18, so 15 years ago, eek Back then it was Benign IH, and I just got told to lose weight, it'll be gone in a month, and carry on regardless Two shunts later, I developed a Chiari malformation from the 2nd shunt, and had a decompression of the skull when the 2nd shunt failed. (my heads basically made bigger to accommodate the fluid) and this has lead to sporadic high pressure spikes which occur at random times, rather than being specific as they were previously.

I was always lucky in that my eyesight was stable, the shunt decisions were down to the headaches, I lost a fair chunk of sight when the shunt failed, and since then it's been stable, however at my last Neuro appt I discovered a fair drop in sight again, which lead to the "my IIH is because I'm fat and to cure it you need to lose 10 stone" talk. At this point, it's what I've heard for the past 14 years with a pat on the head and a push out the door. So I yelled at him :$ got angry and told him that I was sick of hearing all that with no other support from it, that after this amount of time I can't do it myself, I've tried and failed too many times (weightwatchers, slimming world, meal reductions, meal cut outs, atkins, and idk what else)
He got the message, and told me he would write to my GP to advise referral to a barbaric surgeon.

This pushed me enough to go request it myself. Here I am!

I do suffer from being morbidly obese, walking etc is limited, and my back and feet kills me, though my back could be from the surgeries to do with shunts, either way I feel this needs to be the time to do stuff!

I should also say my name is Becca Don't think I've mentioned that anyway!

 

[Samsara]

Hi Becca I'm a really private person too so it's nice to have this place to share experiences with like minded people who are going through the same sorts of things relating to obesity. When I try to talk to (mainly slim) friends about my issues they can nod and say you're a lovely person, don't worry about it, but you really can't get the same levels of empathy from them as I truly believe unless you have been obese you do not know what it is like to live with it on a day to day basis.

My last appointment with the neurologist where he mentioned my weight again :sigh: I basically asked if he could help with intervention/support my case - that IIH was listed as a co-morbidity in some PCTs but not my own Anyway, he finally wrote a letter to my GP (after much badgering!) in support of bariatric surgery and this along with the form the GP has to complete and my patient letter went off to the PCT and I got approval for an assessment. Hurrah!

By the way - this is after jumping through the many hoops put in our way including the weight loss management course

I still don't know if the PCT will say yes yet. If not, I don't really know what I will do next but I guess I will cross that bridge when I come to it. Anyway, I am sure the letter from your surgeon will help strengthen your case to get an assessment and/or get on the weight management course which is one of the last things you need to do in order to progress to surgery.

Keep us posted! x x

 

[carebear1]

Hello and Welcome Good luck on your WLS journey hope you get your referral and op soon

I have just been diagnosed with IIH (december 2012) after spotting blood floaters in my eyes and then opticians and ophthalmology confirming the back of both eyes hemorrhaged. opening spinal pressure was 47. Going ahead with surgery was a must even though I had my doubts but when the neurologist said they had to do an emergency lumber puncture to save my eyesight I new there was no turning back. I really want to get rid of the IHH

 

[Samsara]

The joy of lumbar punctures Scarred for life :/ Anyway, it's great to have some fellow IIH's on here. It's quite rare so it's nice to have other people who understand the condition x x

 

[carebear1]

The joy of lumbar punctures Scarred for life :/ Anyway, it's great to have some fellow IIH's on here. It's quite rare so it's nice to have other people who understand the condition x x

Its horrible I seriously thought I was going to die when the spinal fluid was pouring out. Did you get a horrendous headache as yours was coming out? I need another one and its only been a month since my last and I'm dreading it:cry::cry:

 

[Its_a_JD]

I unfortunately have a treatment phobia. I fell down a pot hole when i was teeny tiny and was taken to the dentist to fix my broken just out secondary teeth. Cue the accident, followed by being gassed forcefully, screaming the surgery down, developed this phobia. Had it since then, teeth falling out due to not being able to have dental work for years and years, and having the obesity being an issue for any sedation/GA treatment.

I had the LP upon diagnosis, and I swore I'd never have it done again. I managed it till about 2004 i think it was when my 2nd shunt failed, and they needed to do it, but thankfully they sedated me, and did it in theatre. Since then, I don't have them Nor would i :$ but because I had the chiari come up from the shunt basically sucking my brain down the back of my neck, I had the decompression done instead. my 2nd opinion NSG really understood my fear of having another shunt, and also how difficult it was going to be to replace it. I got lucky in that for over a year I complained to my old NSG that the shunt was problematic, however he didn't want to know. So eventually I wrote to the American producers to ask about valving it, and they said no, need to do a new one from scratch. GP then 2nd opinion referred me elsewhere, and I saw this super lady. She then took me on, luckily about 2 months after her vist appointment my shunt gave up anyway, and this is where the chiari was discovered on mri scans.

The long and short of it basically means upon bolt readings I now produce random periods of high pressure. Where as before it would be morning specifically, or evening, now it's any time, doing anything. One good one was, sitting down the day before her appointment at dinner, I just suddenly developed a headache.

It always has to be complicated with me We're now just waiting and seeing as far as eyesight and treatment goes. She will always see me, and will always treat me, but the next step would involve rebuilding around the back of the neck area (skull) and shunting, of which I am really not happy with.

I do have to say that it's not 100% guaranteed that IIH will go away after weight loss (dramatic, not a few pounds) HOWEVER as far as I see it, even if it doesn't, it makes the other side of my life so much easier. It is a win win situation, even if the IIH doesn't go. Mine is chronic, and because of the head stuff, no one really knows for certain. I will always have low vision, that will never come back, and the chiari is still problematic.

Pretty much all the doctors will say to women/men who have IIH and are severely overweight that it is down to their weight. That if they lose the excess weight it will go away, however it's not 100% true, but a large number do have the IIH cease. Thus like I say I'm not counting on it going away, especially in my particular case, but frankly everything is a benefit as I will feel so much better, and be so much better, and be more able to deal with IIH if it persists.

I think also with mine we suspect I had it as a child (pre-weight gain) as I had flashing lights, headaches dizzy spells, terribly accident prone. No one really knows as they gave me specs to see better, and migraleve, and left me to it. I only got diagnosed when i was 18 when a locum typed optician was playing around with equipment during my eye test, and happened to look in my eyes, and see swollen optic nerves. I always felt ill as a kid and PE hurt my head and ears, so I avoided it, got fat, ate too much etc, didn't exercise

 

[shazzy2602]

Hi, I can totally sympathise with you, It is hard to trust people and confide in them about how you feel and what you want to do, I haven't been on here even a week and I have had so much support and have learnt so much, Every one is so far really lovely and I am sure you will find it a great help

 

[Samsara]

Its horrible I seriously thought I was going to die when the spinal fluid was pouring out. Did you get a horrendous headache as yours was coming out? I need another one and its only been a month since my last and I'm dreading it:cry::cry:

I'm avoiding them like the plague. It's so traumatic as they poke needles in and out of me hitting nerves over and over again whilst I scream and cry in agony :cry::cry: My last one I ended up with a low pressure spinal headache which is what I think you are talking about. It was horrendous and I couldn't move for days and the pain made me cry for several days :cry:

 

[Samsara]

I do have to say that it's not 100% guaranteed that IIH will go away after weight loss (dramatic, not a few pounds) HOWEVER as far as I see it, even if it doesn't, it makes the other side of my life so much easier. It is a win win situation, even if the IIH doesn't go.

I totally agree with you. I know there is no guarantee to be rid of the IIH but at least the weight loss will make the rest of life that much easier to deal with. Definitely a win-win situation for me too Sounds like you've had a real tough time of it over the years with the IIH I've only had to endure two years and I'm totally peed off with it already x x

 

[rickysmrs]

hi JD welcome to your sanity place to be youve made it, youve started your journey and we are all here to help you on your way. good luck hun xx

 

[carebear1]

Yeah Samsara I was the same and held my head the whole time and was bed bond for days after with my spine and head throbbing at the same time lets hope a little weight loss helps it

JD I agree it may not go and I could live with the headaches because I was diagnosed with epilepsy at 4yrs old and flashing lights,red aura's and headaches are an everyday norm for me but the lumber punctures

You've had it really hard hun with yours, I hope the WLS if not completely cure it at least makes it less problematic for you.

 

[angiemason]

hi Becca good luck with everything xxx you seemed to have a lot of problems and I truly hope they sort funding for you I noticed the surgeon had said he will write to your doctor recommending the surgery it will definitely help the more people you have on your side xxx there is always someone who will try to help you with any queries so keep posting and we will follow your progress xx

 

[Its_a_JD]

Thanks for more welcomes

re IIH/Chiari Malformation; I wouldn't say I've had a terrible time with it all of the time. I've had large periods of where it's basically been stable, just occasionally I had these glitches that were a bit bad! I've had it so long now that its part of my life, same as being overweight, I know what triggers to avoid, I know that things like Laughing makes my head hurt horrendously, same as simple things like bodily functions, or coughing, sneezing's a bad one! But you work past those when you have it so long. I was diagnosed in old school BIH era, where it was down purely to weight (even though at that point I'd lost about 3 stone, didn't keep it off though!) and that was it. I joined american lists at that point, and they just basically LP'd people regularly as a way to treat it. Diamox/lasix and LP's. Then shunts, lots of new ones, and revisions in the same people. This is why It took me a few years to even consider a shunt. I had excess pressure, but the pressure on my eyes never made it really bad, it was stable for a long time, but the headaches annoyed me and eventually I said enough.

After promises of never being shunt dependent (what junk!) and that it was reversible etc, and safe, and wouldn't need revisions etc I agreed. First one inserted, never worked. 2nd one was the problematic one, it just drained and drained, too much CSF in the end, which caused chiari. I suspected it over drained and moaned a lot at my nsg and dr about it. This is why my dr got fed up and figured if he told me to write to my useless nsg for shunt details, I'd just not bother. He was so wrong. I got details of my shunt, and phoned america to talk to the manufacturers then I went back and asked for 2nd opinion.

Ironically we were discussing options of a replacement valved shunt, when it pre-empted itself and failed (with the new nsg). The best option to help the IIH, massive pressures, stem the rapid eye loss, and try and sort it for once and for all was the cranial vault expansion. To be fair it's done most of what it needed to, just wasn't quite big enough, and thus I get the spikes.

I just bumbled along to my yearly nsg appts, when she randomly suggested I see a neuro who held an IIH clinc. I did do, but last time I went she was off on maternity leave, and so they dug out the my diagnosis era retired neuro to temp take over the clinc. I genuinely felt like I had gone back 10 years attitude from him wise, and thus I blew up at him. So whilst I have his letter about it, I'm also going to ask my proper nsg for a supporting letter to put on my file as well.

I dunno if I would want to be diagnosed this era, I don't know how diagnosis are dealt with regarding weight issues now. I'm so out of the IIH loop that I didn't even know they changed the name till 6 months ago or so, and that was via a local information poster. I'd never even seen anything even remotely associated with IIH during my hospital stays.

What really has got me though, despite the attitude he had, he did get a comprehensive eye exam on me going, all the works, and the results don't lie. I am losing more sight again. Its terrible getting specs/contacts to actually work with me. Constant double vision (which I've had so long that I see as normal now) and missing spots, and sparkles means I never get a perfect prescription. So whilst I need to do something about the eyesight, and I will probably get told off by my NSG for not getting another appointment quicker as im just waiting for the standard one to come through, the next option is more head surgery, and im not happy about that right now. She would agree that losing weight is a wise choice so I'd rather go that route now, and if it cures all, wonderful! If it doesn't, it might make me a better option for other treatments, like just a normal shunt because I would be thinner etc. Okay, that might be wishful thinking, but one thing at a time

Wow, my life is like a book. That basically covers the last 15 years, hopefully the next 15 is better!


Having a look at the list my Dr gave me for a referral I need to do the 1 month minimum of Orlistat, and on a low fat diet for that. But i'm thinking would that be wise to run alongside when/if i get into the weight management program? I notice on the list it says lose 5% of my weight, which is around 7kg I guess, but will count from time of first seminar, or from the start of the weight management clinic, which ever comes first. Terrified that I'd do a diet on Orlistat, that it worked, but got to the point of the referral and I can't lose the required amount.

Does anyone have experience of Orlistat?
How do you prove that dieting and other methods have failed? I have never been to my Dr about my weight and attempts to lose it, and to be fair in the last few years I've given up trying to lose weight, so just sat stagnant. It lists that there has to be documented filure of all other treatments.
Are all other treatments basically weight management course, and orlistat? Or is there something else I could be asked to try.

The stop smoking is gunna be the hardest I guess, I love smoking, stuck inside most of the time so have not much else to do >.< I'm guessing a swap over to nicotine free ecigs are not allowed either?

Last question; Private... What sort of costs are we looking at in the UK, and on a few posts I've heard mention of going over seas, what sort of costs are for that, and how safe is it? I see these programs of people going over for boob jobs in Thailand and they come back with the implants infected, or falling out

Do you think they'd do an outright swap, a kidney for a smaller stomach?? ;0 I kid of course, but it does make you feel like you wish you could bargain!

 

[Its_a_JD]

Thank you all for the welcomes!

I did post a reply here, but I'm guessing that because it's not shown up yet (posted yesterday) that I posted something that I shouldn't have, and I'm not sure what, but I did leave some questions, but brain fog ensuing so not sure exactly what they were. Will try again with them.

Is there any issue with bariatric surgery and the shunt? Whilst not working, it's still in place with it being LP (lumbar peritoneal) so lumbar stomach. The scar is on (one of) my spare tires on the left side, so front surgery wouldn't affect it, but I wonder about scaring. They told me off after they stuck the 2nd one in, as it took so long because of scar tissue.

Public Vs Private: Reading I'm quite aware that there are cheaper procedures done in other places privately (aka medicaholiday typed things) Is the decision to go private purely down to the length of wait, and/or funding refusals over public? I'm starting to wonder realistically how long I could be waiting with no actual confirmation of anything happening (ie getting to the confirmation of funding stage) just feels like a carrot and stick method, with not actually getting anywhere near the carrot. (and oh god that just reminds me of weightloss, never getting there, and the downside from that)
I'm torn. Potentially I could source from around me enough to go over seas, but my mum seems to be quite against it, has the impression they'll do the deed with out any infor/tests and throw me out on the streets a day or two after with no aftercare, and doesn't seem happy with the response of a&e to what happens if you have problems when you're back.
If you go private, do you need to find a public surgeon/team to follow you or do you just go off into the world and do it yourself? My referral check list says be willing to be followed for life, is this the same if you go private?

Don't get me wrong, whilst I've only just gone to drs about a referral, I've been thinking for a long time this is probably the only way for me, and potentially private I could be sorted by the end of this year, instead of a worryingly longer wait, going by various experiences.

It does scare me to have it done in another country with another health system, and language. But costs go up far too much to consider private here. Why is it so cheaper overseas, than here?

It wouldn't be a case of spare change though, but I could borrow, and jiggle and go overboard on frugality to pay for it. Is this a nutty thought?

 

[angiemason]

I don't know anything about your current medical problems but I would think from reading your posts you would be better off having it done here xxx you may be one of the lucky ones and all goes smoothly for funding or edge your bets and start saving see which comes first funding or enough to pay privately xxx others will be able to tell you about after care if you go abroad I have no idea about that x if you have scar tissue they may have to do open surgery but they always advise that is a possibility xx