6/14/2010 02:43:00 pm BenefitScroungingScum 5 Comments

It's that time of year, when all the referrals from the hospital appointment season come through, spreading like a contagious multi-coloured Outlook rash. This morning was dermatology. 

For someone with EDS I have remarkably good skin so I've never needed to see a dermatologist before. I still don't really, except I've got this little 'might be a skin tag, might be a mole' on my back which has been getting bigger for years. It's still teeny tiny in the grand scheme of things though. If it was just an inch to either side I wouldn't need to do anything about it, but it's right on my spine. The way I get up from chairs means it occasionally gets caught, but it gets squished every time I do the kind of spinal curling required to put wayward parts back in their rightful places and it makes me feel sick. I'm aware there is a certain irony in it being the teeny tiny little mole that makes me sick rather than the loudly popping, painful joint relocations, but whatever. It's my mole to be nauseous for. 

For a while anyway. The mole is to be removed. It's the kind of job which my  GP could do, but because of the potential to bleed lots, and issues with local anaesthesia not working it is wiser to do it in a hospital setting. In, off, out. Simples. 

But it never is with EDS. Issues with the local anaesthetic lignocaine not working properly are so commonly seen in EDS that it's something experienced clinicians ask about when diagnosing people. It seems to vary a little; for some people they can be properly numbed with lignocaine it just takes more than usual to do so and doesn't last as long, others find it 'travels' and they'll get numb...but not in the part of the body the injection was intended for, and others just don't respond at all. I'm in the latter category, it was really shocking to me when I was told that local anaesthetics actually make most people fully numb as I'd always assumed they were just the world's worst painkillers. Having four impacted wisdom teeth removed with only a failed local anaesthetic will be forever etched upon my memory, along with everything said by the dentist who seemed most disconcerted by having to hold down a screaming, fighting patient insisting they could feel everything. Sadly that wasn't the only occasion I was held down, screaming in pain, as a procedure was done, whilst medical staff told me to calm down as I couldn't possibly feel a thing, they'd used lots of local anaesthetic.

The dermatology consultant is lovely and charming, and fortunately quite happy to admit he knows very little about Ehlers Danlos Syndrome. It might seem like a bad thing for a consultant not to know anything about the underlying condition a patient has, but it's probably quite common, there are far too many different rare conditions for doctors to know more than the odd fact about them all. The only time I find it a problem is when doctors very clearly don't know anything at all about EDS...but they won't admit that, and insist upon making fools of themselves by getting fact after fact wrong. That only ever goes very badly for both patient and doctor. As it's unrealistic to expect expertise in every condition, I stick to the rule that any doctor confident enough to admit they don't know everything is a doctor I'm happy to let treat me. I like the ones who use google during appointments to see if they can find any relevant research even more. 

Google had a few things to say about the inefficacy of local anaesthesia in people with Ehlers Danlos Syndrome but had no opinion on what anaesthetic should be tried instead of lignocaine. I explained to the doctor that given the problems with lignocaine I've had in the past I would prefer them just to remove the mole without any anaesthetic. Usually they laser the mole off, then cauterise any bleeding, which apparently hurts. I have a suspicion it's also a disaster of an idea as it's usually very difficult to close wounds in anyone with EDS, the skin just sort of pulls apart and the wound gets wider. I think actually cutting out the mole then stitching will be the only way to get it to heal properly. As it'll only take a tiny incision and couple of sutures at most I'm not really bothered that there won't be any anaesthetic. 

The doctor does seem bothered, in fact almost stressed by the idea and insisted on prescription for EMLA cream. EMLA hasn't worked on any EDS'er I've ever come across, which makes sense as it's a combination of lignocaine and prilocaine, but it does no harm to give it a go. Just not on the morning of the procedure, I'll need to be quite focused mentally to get through the pain without anaesthetic and messing about with people insisting EMLA should work will make that impossible. I'll conduct my own EMLA and pin trial over the next few weeks. 

Professor Bird will know if there are any local anaesthetics more suited to people with EDS than lignocaine so the consultant has asked me to contact Leeds and let his secretary know the answer. That expertise of that nature will be impossible for patients and doctors to easily access once Professor Bird retires in September is perhaps the biggest tragedy of Chapel Allerton's continued failure to appoint a consultant with a special interest in EDS to replace him. 


Lankylonglegs said...

OMG! I've just read the bit where you described being 'held down screaming in pain while they merrily ignored you and carried on with procedures' and I cannot believe that any so called self respecting dentist or doctor would do that, of course, I'm not suggesting that you made it up, It's just that I am in total shock that anyone could be so inhumane.
I most sincerely hope that you either sued them or kicked seven bells of crap out of them once you could move/get up etc.

Good news that your skin chappie is not afraid to admit he knows little about EDS, and hopefully you can get some info from Prof Bird's secretary soon so that if possible you don't have to go thru that procedure without any pain relief. Hopefully all his knowledge can be passed on somehow or at least left on the system at Chapel Allerton for other doctors to avail themselves of it.

My GP uses that skin superglue stuff on me and my kids if we have any stitching needing doing, then he pops butterfly stitches over that and we leave them on for double the normal length of time, could they use that method for closure perhaps when they remove the tag? It would certainly help it heal faster without so much risk of it coming undone I think.

I know just what you mean about the locals not working dentist has fortunately for me found some that does work, all other times we've simply gone ahead without and I've suffered in silence but fortunately for me that was only ever for simple fillings, never a wisdom tooth extraction (poor you)

Heh, nice to know I'm not the only one who's been held down by a dentist, insisting I shouldn't be able to feel anything. Makes me feel a little better. There will always be a tiny black place in my heart for the dental nurse that did it though.

My last dentist however, he was amazing - I find my local alternates between not working, or travelling and numbing something unrelated. Am fairly sure the tip of my nose didn't need to be numb for an extraction. I cannot remember what local he used though, I know it was into an actual nerve and it made me almost pass out to be done, plus I *think* he said it had adrenaline in it? Not sure. Sorry.


R said...

Bendy Girl, my consultant anaesthetist for all three ops I've had, each of which can be done under a local, decided upon discussion that he'd really rather I just had a general... so I did. Worked out really well, they were able to do a much better job of wound closure and bleeding control. Don't rule it out as an option. That or Ketamine, I reckon...

BubbleGirl said...

Local anaesthetics seemed to work on me (mostly) until I reached puberty, and now it's hit or miss, mostly miss.

I am very thankful my dentist listens to me when I tell him NOT to freeze me... just be gentle.

I am also very thankful that when I had my toenails (on my big toes) surgically removed, THAT local anaesthetic worked just peachy. It wore off a LOT earlier tan it should have, but it did its job when it was needed.

Stone said...

Hello! I'm going to delurk now as I'm an avid reader of yours, I thought I'd stick my oar in!

Please do tell us if you find out which anaesthetics work as I've got some hand surgery booked and they haven't a clue. They did offer me the choice of local or GA but I'm not sure which is least if they can make a local work I get to watch!

Veronica: usually lignocaine is administered with adrenaline (it makes the effects last longer, if it works), it's horrible if the lignocaine doesn't work as you then have someone stitching away while you're panicky and hyperventilating. The cream doesn't work on me either - when I was little they used it to numb the skin where they were going to put a drip in, but it only works on the surface - as soon as they start digging around you can feel everything! Not sure I'm brave enough to just go without so good effort on that :-)