Impaired skin etc. healing/bruising in HMS?

[Stone]

I guess the reason for my post is looking for recommendations for looking after the scars is there any way of stopping them spreading? I still have one more stage for my chest surgery and then I have a 2 stage lower surgery in the summer (if I lose the weight in time). In the last stage of the chest surgery they will be removing the last bit of breast tissue and repositioning the nipples and removing the scar tissue from the previous surgery. It's on NHS and they don't really give you that much advice and the aftercare is pretty much non-existant once you leave hospital.

The best way to stop scars from spreading is to minimise them in the first place. This means your surgeon has to know about HMS and then listen to you!

'Normal' surgery leaves me with enormous scars - they jut out, go bright red and then spread (without fading). Eventually they fade to a sort of shiny silver colour but it takes >5 years! I've found a few things over the years - surgical staples are bad, misaligned wound margins are bad (turns into a big lump in the scar) and I seem to need less eversion (turning up of the wound edges where they're sutured) than normal. Dissolving sutures come out earlier than they should - before the lowest layers of skin are properly fused together - and permanent ones either form a circular 'dot' scar where they enter and exit, or just get spat out by my body They also tear through the wound margins more readily than in normals. So far my list of tips is:

- don't use staples
- don't let the trainee close up! (this is why I have an enormous set of scars from 30+ staples in my abdomen! they also took them out before the lower layers had closed up so it spread a lot)
- use tiny tiny stitches without leaving big gaps between each stitch - otherwise the gaps just open up and need additional closure later
- use thinnest suture material possible
- try and avoid dissolving sutures, they come out too early
- suture further from the wound margin than normal so they don't pull through
- try and avoid simple interrupted sutures - they place too much strain on the wound edges and tear through. A running stitch or horizontal mattress stitch wuld be better as neighbouring stitches take up some of the strain - horizontal mattress best as the two parallel stitches across the wound spread the tension better
- use bolsters to stop the stitch digging into the skin as it leaves 'train-track' scars
- work laparoscopically if possible
- match the wound edges as precisely as possible - otherwise you end up with a lumpy scar and exra tension across it while it heals
- try and cut in gentle curves as they're easier to stitch than sharp corners!
- believe the patient if they say it still hurts

Hopefully that gives you a few ideas to start from Obviously each of us will heal differently but that seems to work for me.

Stone

[barkingmad]

I am step by step with Stone on this. I have exactly the same responses to stitches and surgery as he does. He described my scars and experiences so well

Make sure that your surgeon is aware of the issues. I would copy what Stone has written as it covers most if not all of what you need to be concerned about.

[AbiBlue]

I didn't realise until today that there is an explanation to the stretch marks I've been collecting all over my body since the age of about 10! I always thought I was a horrible freak, I know it sound a bit dramatic, but they're really bad - all over my upper legs and arms, I haven't worn shorts apart from PE shorts since it started... and after 3 pregnancies, well, my torso looks like I fell into some kind of thrasher... it's kind of comforting to know it's HMS/EDS and not...just....my stupid body (if that makes sense!) x thank you

[meggy.nut]

HI all.
I have fairly soft skin and people tend to think I'm in my teens instead of late twenties
I tend to scar easily (counted 6 on the back of one hand) and the scrapes on my knees turned into really big, pale wrinkly scars. Half the time I get scratches, they end up as a scar. From my shoulder surgery the scars have widened a bit - one scar is raised and bumpy while the others are concave and wrinkly. I'm allergic to almost any adhesive - if I leave a band-aid on for more than a day I break out in a rash.
My skin on my hands and heels gets really dry and cracks/splits; usually not bleeding though. If I'm sewing and the thread rubs against the same spot too often, I'll end up with something similar to a paper cut.
I don't tend to bruise that often though. I used to do contact kick-boxing, and rarely bruised from the punches/kicks - just from running into doors
However, my skin isn't very stretchy at all.

My questions is these: My PCM (whom of I do not have a high opinion) stated that people with EDS have "old people skin - with lots of wrinkles like cigarette paper". As I did not have old people skin, I therefore could not have EDS. I thought it was just the scars that might be wrinkly? Doesn't skin fragility go with EDS?
Is he just confused?

Thanks in advance for the clarification.

[Rosie]

Hi meggy.nut

There are different types of EDS and it sounds like your PCM is generalising. Have a look at one of the EDS websites and you will see that the different types of EDS have various skin types associated with them. For EDS-hypermobility type on our own website, 'Abnormal skin: striae, hyperextensibility, thin skin, papyraceous scarring' is listed as a minor criteria.
It is very common for medics with little knowledge of EDS to think that it is all one type and that you have to have all the symptoms. I was once told that I couldn't have EDS as I couldn't pull the skin from my neck over my face, and that the different types of EDS only existed for research purposes. I couldn't leave that consultant's office fast enough!

Rosie

[Stone]

Our skin (when involved, obviously!) is stretchier than normal. Old people have wrinkled skin because the collagen loses its elasticity and sags - so with our stretchier skin it takes longer to show up, and we look younger, longer. Papyraceous scarring happens because scar tissue is different to normal skin (example: it can't sweat or grow hair as the relevant structures don't grow back) and our thin, stretchier-than-normal skin allows the scars to stretch out and widen once they've formed.

Your PCM is talking rubbish. Give him some kickboxing from me

Stone

[Myself205]

Hello,

I know I don't post very oftem but I was hoping you could help me out or have some ideas.

On the 18th January, I had a surgery, they removed a bursitis on the heel. I'm still recovery from it (when it suspposed to be healed within 2-3weeks): I'm still off work and in pain.

Do you think the recovery/haling might be slowed down because of HMS?

[nemonie]

Hiya,

Although I don't have personal experience of surgery I know from my research and reading a lot of posts on here that many people with HMS/EDS heal slowly &/or poorly. Hopefully some of the people who have direct experience will come and comment soon. You can also ring up the HMSA helpline (the number is on the main website) to ask for advice regarding this.

Nemonie

[Tibisca]

Hi,

In my personal experience of having had 5 ops in quite a short time, it was the slow healing and longer than expected recovery time which was one of the symptoms that led to my HMS diagnosis.

By the time it came to op number 5 the medics suspected dodgy connective tissue was my problem so I was in hospital for 6 nights instead of 3 and off work for 12 weeks instead of 6 and so far so good.

So for me HMS certainly slowed my recovery and healing.

Hope this helps,
Tibisca

[Myself205]

Thank you for your replies. I'm seeing my GP and surgeon next week so will mention it.

[meggy.nut]

Thanks Stone - Your comment made me laugh and was very informative. Where did you find the boxing emoticon?

Thanks Rosie. I'd forgotten that about the different types of EDS; its been a while since I looked at them all. I choose to be amused at doctors like that...that is after my temper's cooled off.

[Stone]

Thanks Stone - Your comment made me laugh and was very informative. Where did you find the boxing emoticon?

We aim to please Click 'View more smilies' then 'next' at the bottom and there's a second page with some right weird ones!


Stone

[Myself205]

I saw the surgeon again today.
He said (again!) that people recover from the surgery I had in 2-3 weeks but I'm taking much longer. It's my 4th month of recovery!!!
I mentioned HMS but he disagreed and said that it affects joints but not healing.
He can't explain why it is taking so long though...

[nemonie]

Ask the idiotic surgeon why skin signs is one of the minor criteria in the diagnostic work-up for HMS (for hyper-extensibility, scarring, thin skin and stretch marks), if only the joints are involved then

[Rosie]

Hi Myself205

Your surgeon does not fully understand HMS/EDS-H if he thinks that there is no skin invovement in this condition. In HMS skin can be fragile, and so tears easily, and/or tissue (not just skin)can take a long time to heal. This is almost certainly the reason for your slow healing. If your surgeon is willing, you could suggest that he contacts one of the HMS specialists for an explanation of why healing can be so slow with HMS. Or you could look for any articles and suggest he reads them?

Rosie