Hyperlipotrophy. Doing something about it.

[Manodeldios]

We've tried everything. I have to wear pressure underwear that comes up under my breasts. It is painful as they are hard lumps. Ben Gowland The CEO of NENE CCG says in his blog that he believes in putting power back to clinicians.... Not in my case clearly! They also said as I am not obese and haven't lost more than 10 stone (if I did I would be in negative figures) I dont qualify. they also said they don't have to consider my psychological well being as it isn't in their criteria. I took the photos myself. My consultant suggested they send me for medical photography so they could see clearly the hyperlipotrophy. They didn't bother. The Dr at the CCG Frank Voeten is a Dutch GP who has no experience in auto immune diseases like type 1 and spends his time running a private medical assessment business for potential pilots!!!

 

[BigRedSwitch]

Sorry about my delayed reply - I've just been discharged from hospital after my abdominoplasty (weds 11th), as my stomach area was similar to yours. I don't keep my insulin pump on my torso - it's on the top part of my buttock (arguably the side of my leg). I've been wearing it for 3 years now with zero issues - whilst you're right that it's not 'a perfect solution', it's about 1000x better than injections, which is what messed me up.

I'n in good shape (as I suggested in my original post) - and that's not just 'good shape for a diabetic' - I've been told that my physique is 'modellesque' (for a bloke, obviously) - I take very good care of myself. My surgeon removed a 2.5kg 'chunk' of skin, scar tissue and fat from my waist which was at it's thickest, around 15cm thick!!

Whilst I agree that it would be nice to have it done on the NHS, the fact is that we're being kept alive by the NHS, so although the £6k to have it repaired 'hurt' (I had to take out a loan for it), ultimately it is 'cosmetic' (as much as I hate to admit that).

I feel a kinship to you because of what you're going through - I tried a lot of angles to try to get the surgery free too, but people looked at me as though I was being unreasonable. Just the way it goes, unfortunately - I feel you may have to do the same as me and quite literally just 'stomach' the cost (pun intended).

I'll drop you an email with details of my plastic surgeon. He may work out cheaper for you, and also has an understanding of diabetes as his daughter is type 1 too.

 

[Manodeldios]

Hi
Great news. I am definitely going to have to pay. The sooner the better I'm 5'9 and size 10. I'm a size 16 around my middle! Yuk! I wear pressure Bridget Jones pants to try and hide it! Am so pleased I looked on here last night after a year of absence myself due to being so busy!
Kindred type 1 spirits! Are you located in London?
Angie

QUOTE="BigRedSwitch, post: 766927, member: 86237"]Sorry about my delayed reply - I've just been discharged from hospital after my abdominoplasty (weds 11th), as my stomach area was similar to yours. I don't keep my insulin pump on my torso - it's on the top part of my buttock (arguably the side of my leg). I've been wearing it for 3 years now with zero issues - whilst you're right that it's not 'a perfect solution', it's about 1000x better than injections, which is what messed me up.

I'n in good shape (as I suggested in my original post) - and that's not just 'good shape for a diabetic' - I've been told that my physique is 'modellesque' (for a bloke, obviously) - I take very good care of myself. My surgeon removed a 2.5kg 'chunk' of skin, scar tissue and fat from my waist which was at it's thickest, around 15cm thick!!

Whilst I agree that it would be nice to have it done on the NHS, the fact is that we're being kept alive by the NHS, so although the £6k to have it repaired 'hurt' (I had to take out a loan for it), ultimately it is 'cosmetic' (as much as I hate to admit that).

I feel a kinship to you because of what you're going through - I tried a lot of angles to try to get the surgery free too, but people looked at me as though I was being unreasonable. Just the way it goes, unfortunately - I feel you may have to do the same as me and quite literally just 'stomach' the cost (pun intended).

I'll drop you an email with details of my plastic surgeon. He may work out cheaper for you, and also has an understanding of diabetes as his daughter is type 1 too.[/QUOTE]

 

[BigRedSwitch]

Hi
Great news. I am definitely going to have to pay. The sooner the better I'm 5'9 and size 10. I'm a size 16 around my middle! Yuk! I wear pressure Bridget Jones pants to try and hide it! Am so pleased I looked on here last night after a year of absence myself due to being so busy!
Kindred type 1 spirits! Are you located in London?
Angie

QUOTE="BigRedSwitch, post: 766927, member: 86237"]Sorry about my delayed reply - I've just been discharged from hospital after my abdominoplasty (weds 11th), as my stomach area was similar to yours. I don't keep my insulin pump on my torso - it's on the top part of my buttock (arguably the side of my leg). I've been wearing it for 3 years now with zero issues - whilst you're right that it's not 'a perfect solution', it's about 1000x better than injections, which is what messed me up.

I'n in good shape (as I suggested in my original post) - and that's not just 'good shape for a diabetic' - I've been told that my physique is 'modellesque' (for a bloke, obviously) - I take very good care of myself. My surgeon removed a 2.5kg 'chunk' of skin, scar tissue and fat from my waist which was at it's thickest, around 15cm thick!!

Whilst I agree that it would be nice to have it done on the NHS, the fact is that we're being kept alive by the NHS, so although the £6k to have it repaired 'hurt' (I had to take out a loan for it), ultimately it is 'cosmetic' (as much as I hate to admit that).

I feel a kinship to you because of what you're going through - I tried a lot of angles to try to get the surgery free too, but people looked at me as though I was being unreasonable. Just the way it goes, unfortunately - I feel you may have to do the same as me and quite literally just 'stomach' the cost (pun intended).

I'll drop you an email with details of my plastic surgeon. He may work out cheaper for you, and also has an understanding of diabetes as his daughter is type 1 too.

[/QUOTE]

Hey,

I work in London, but I live near Guildford.

But yeah - I feel your pain entirely! Although there are some odd side effects starting to happen...! :-S

 

[Manodeldios]

Hey,

I work in London, but I live near Guildford.

But yeah - I feel your pain entirely! Although there are some odd side effects starting to happen...! :-S[/QUOTE]
Ooh??
Nothing serious I hope?

 

[BigRedSwitch]

Hey,

I work in London, but I live near Guildford.

But yeah - I feel your pain entirely! Although there are some odd side effects starting to happen...! :-S

Ooh??
Nothing serious I hope?[/QUOTE]

Ha! I certainly hope not!

Did you get my email?

 

[Manodeldios]

Ooh??
Nothing serious I hope?

Ha! I certainly hope not!

Did you get my email?[/QUOTE]
Hi
No? Did you send it to:
Angie b 2512 at g mail . com

 

[BigRedSwitch]

Yeah - exactly that address...

Check your junk!

 

[Emmotha]

Good luck, hope all goes well

 

[BigRedSwitch]

So far so good! Had a proper look today and I can actually see my abdominal muscles!

 

[BigRedSwitch]

Right. Exposure time!

I'm now 6 days post-op, so I figure I can show you some photos!

Here's my tummy pre-op (the drip is a glucose drip due to me having low blood-sugar as I'd not eaten anything since 6am!)

and here's me today - 6 days post-op.

I'm off for my follow-up appointment tomorrow, which will be the first time I've seen under the dressings since the day after my op. Safe to say that I'm very pleased with the overall way this looks so far. I actually feel like a 'normal', non disfigured human for the first time in 30 years!

You can probably see that my legs are somewhat swollen in the thigh area - this is normal, but could take up to 12 weeks to subside. I can walk around just fine - not allowed to straighten up yet, though - and I'm in no pain (apart from when I get up from sitting/laying, cough or sneeze), so I'm very happy so far.

If you're thinking about doing this - get it sorted. Best decision I've made in the last 20 years.

 

[mangobe]

Congratulations! I'm so glad the op worked for you.

Last year I made various enquiries about the possibility of having small areas of hyperlipotrophy removed from my stomach by liposuction, for re-use in remodelling my breast after cancer surgery that was scheduled for later in the year. I thought this was a very creative solution to two problems at once , AND maybe the only way I'd get the lipohypertrophy removed on the NHS. Unfortunately the cancer Docs were wary about the quality of 'diabetic' fat and the Diabetes consultants had little knowledge about liposuction and lipo-modelling techniques so neither team could say whether it would work or not. In the end, after neo-adjuvant chemotherapy to shrink the cancer, I only had a small lump removed from my breast so I don't have any use for that spare fat after all. Nevertheless it would have been nice to know that I could have had it harvested by the NHS if necessary, considering that I'm unlikely to ever be able to afford the cost of an op myself. Now, without cash for 'cosmetic' surgery I must be content with one lump less of boob, and two extra lumps on belly!

 

[BigRedSwitch]

Congratulations! I'm so glad the op worked for you.

Last year I made various enquiries about the possibility of having small areas of hyperlipotrophy removed from my stomach by liposuction, for re-use in remodelling my breast after cancer surgery that was scheduled for later in the year. I thought this was a very creative solution to two problems at once , AND maybe the only way I'd get the lipohypertrophy removed on the NHS. Unfortunately the cancer Docs were wary about the quality of 'diabetic' fat and the Diabetes consultants had little knowledge about liposuction and lipo-modelling techniques so neither team could say whether it would work or not. In the end, after neo-adjuvant chemotherapy to shrink the cancer, I only had a small lump removed from my breast so I don't have any use for that spare fat after all. Nevertheless it would have been nice to know that I could have had it harvested by the NHS if necessary, considering that I'm unlikely to ever be able to afford the cost of an op myself. Now, without cash for 'cosmetic' surgery I must be content with one lump less of boob, and two extra lumps on belly!

Hey Mangobe. Certainly an interesting approach - and it may still be able to work out...

The surgeon who performed my surgery was Mr Martin Vesely. His speciality is reconstructive surgery after cancer (I didn't want some dude who was more interested in giving skinny girls big boobs and doing botox!). I felt comfortable with this principally due to the fact that I considered the work that needed doing to me as a 'reconstruction' of what I should actually look like.

He works out of Woking, Guildford, London and Ashford. He may well be able to help you out. If you do contact him, mention my name (Anthony Rodgers). He has a very good understanding of type 1 diabetes too, as one of his family members has the condition. He's a very good bet, all things considered, and I'm sure you'd be very happy with his work.

As for the money - I'm much the same. In the end, this became so important to me that I took out a loan to cover the cost.

 

[mangobe]

Hey Mangobe. Certainly an interesting approach - and it may still be able to work out...

The surgeon who performed my surgery was Mr Martin Vesely. His speciality is reconstructive surgery after cancer (I didn't want some dude who was more interested in giving skinny girls big boobs and doing botox!). I felt comfortable with this principally due to the fact that I considered the work that needed doing to me as a 'reconstruction' of what I should actually look like.

He works out of Woking, Guildford, London and Ashford. He may well be able to help you out. If you do contact him, mention my name (Anthony Rodgers). He has a very good understanding of type 1 diabetes too, as one of his family members has the condition. He's a very good bet, all things considered, and I'm sure you'd be very happy with his work.

As for the money - I'm much the same. In the end, this became so important to me that I took out a loan to cover the cost.

Thanks Anthony, I'll certainly save his name.

One other issue that my Diabetes Consultant at Kings College London raised was that the scar tissue left after the op wouldn't be able to absorb insulin so the entire operation field would thereafter have to be excluded as a potential injection site. He brought this up as I was using the argument that areas of lipohypertrophy were causing erratic insulin absorbtion rates and I was running out of potential injection sites. I had imagined that with the excess fat removed that area would be as new, ready for insulin injections again. Sadly that argument didn't work for me, but for you, because you were quite clear that your goal was predominantly 'cosmetic' from the outset, the possibility that you may not be able to inject around your scar may be less of a disappointment.

 

[mangobe]

He also told me that he'd never heard of any of his thousands of diabetic patients actually having liposuction or any other operation to remove lipohypertrophy. So thank goodness for your post! Perhaps all the others who've had it or are planning to have it will come out of the woodwork now!

 

[Fallgal]

I just clicked on this thread because I had no clue what hyperlipotrophy is. Just wanted to say your post-op pic looks great, BigRedSwitch! Congrats to you!

 

[BigRedSwitch]

Hey Mangobe,

I could only really go ahead with my treatment based on the fact that I'm now on an insulin pump. Having an abdominoplasty then injecting into the area again would be a lesson in frustration, IMHO.

Personally, I don't think the abdomen is the ideal place for insulin anyway - i used my thighs and buttocks without issue (I have hyperlipotrophy at the top of my thighs, but it simply makes my thighs slightly larger - almost as though I have 'thicker skin' - so no issue there), but I feel that my torso was particularly susceptible to hyperlipotrophy.

I don't think you should give up. At the end of the day, the fact that we have to take drugs to keep us alive shouldn't sentence us to being deformed by our treatment...

 

[mangobe]

Despite the small areas of lipohypertrophy on my abdomen, I find that insulin is usually absorbed fastest from this area so it is my 'preferred' injection site. I probably have some hypertrophy on my thighs as I injected into them for 20 years at least, but there is nothing clearly visible, still insulin has always taken ages to be absorbed from there, and from most other areas of my body.

I've heard wildly contradictory info regarding the risk of lipohypertrophy as a result of pumping instead of injecting. Some say the repeated infusions of small amounts of insulin in exactly the same spot has the same or worse effect as injecting a large dose with a needle. Some say the small doses are less damaging. Some say the continued presence of the infusion set causes inflammation or scarring, some say it doesn't. Some say they have lipohypertrophy from continually using a pump in the same more limited areas of the body. Are you saying that unlike injections, using a pump causes no lipohypertrophy at all for you? Is this because of the insulin type, or the size of the doses and have you been pumping long enough to know whether you are protected form further lipohypertrophy yet?

 

[BigRedSwitch]

Hey Mangobe,

I'm sure that in the early days of pumping, there was little difference - just convenience. Nowadays, with the most recent pumps (mine is around 3 years old now), the infusion sets have needles which are around 1.5mm long and made of soft, flexible plastic. In other words - you don't even feel them.

My son was diagnosed T1 at 20 months old (beating my age by over a year - I was 3 years 5 months), and he's been on an insulin pump since the very early days of his condition. Neither of us have any hyperlipotrophy at our pump sites, despite this being a fairly small area. We both use Homolog insulin (doctors like parents and children to be on the same treatment where possible), which doesn't seem to give me hyperlipotrophy either. A vast majority of the time when I was developing the issue I was using Actrapid.

In short, I wholly disagree with anyone who suggests that hyperlipotrophy is worse with a pump - that's simply not true. Everything - absolutely EVERYTHING - is better when you're on a pump; better HBA1c, no more hypos, no injections, no dosage calculation - it's *almost* like being a 'standard' human again...

 

[mangobe]

OK. I'll admit to being almost persuaded

I've been being very obstinate, refusing to try a pump until I can get a tubeless one unless I can get a CGM on its own (as my main problems are hypoglycemia unawareness and erratic insulin absorbtion). Perhaps I will finally try a pump later this year, but for the time being I'm really just focusing on recovery from cancer treatment, hence too much time available for posting on forums

Will look forward to watching your progress as you recover from your op