ME Aware Surgical Teams UK?

Are there any hospitals in the UK that are more ME aware?

I am 33 and, after years, have got a good quality of life back. I work and am trying to have children. However, I now need foot surgery and am terrified of the dismissive attitude of the doctors I have talked to and the idea that problems or relapse could ruin my life again (meaning I end up childless and ill).

I am in Cumbria (North West England) but have been told that I could pick a hospital to have my operation.

 

Would it also be worth setting out what we need a surgical team to be aware of?

Including:

• best anaesthetic?
• possibility of adverse drug reactions
• hypersensitivities
• PEM
• risk of triggering deterioration in underlying ME?
• longer recovery periods needed?

 

Sound sensitivity. In my experience there are few places louder than a hospital ward.

Hi @Jjess welcome to S4

I'm sorry i cant help with your question but i hope you manage to find what you need

 

Of all the professionals I met when having cancer treatment it was the surgeons and anaesthesiologists I liked best. I felt that they did listen to my concerns even when we didn't agree. I've not had many doctor/patient relationships that felt genuine. When I talked about previous reactions I had to drugs and procedures I was believed. We worked around things where we could. I recovered from the surgery really well.

What might help is to have a clear idea of what you need them to do. Gather information on how best to survive an operation and write a plan. Don't assume it will go wrong unless there is a clear reason. Choose your timing.

Hope this helps.

 

My rather old info from the ME Association re dentists recommends avoiding anaesthetics containing adrenaline. I requested this, and was fine, but I'm only moderately affected by ME.

 

there is some useful info on mepedia but some bits are controversial.
http://me-pedia.org/wiki/Best_practices_for_hospitals

 

I would always suggest that you make sure your vitamins and minerals are at optimal levels before having planned surgery, particularly iron/ferritin, Vitamin B12 and folate.

Severe Neurologic Deficit after Nitrous Oxide Anesthesia | Anesthesiology | American Society of Anesthesiologists

Folate vs Folic Acid - The Little Known Difference | Chris Kresser

 

Tagging @lunarainbows because she has experience in writing to hospitals about the special care ME patients need during hospital stays.

 

Hi @Jjess

I live in London, so although I do have a hospital I would recommend who have been brilliant with severe ME (my diagnosis at the time), I don’t think it would be much use to you?

Once you have a hospital sorted out, you can try to find out who the surgeon / anaesthetist will be. Then you could set up a Skype / phone call with them and tell them your concerns. I set up a Skype call with them and sent them information beforehand. I sent the NICE guidelines (at the time they were draft, now they are official and published), and quoted specifically the sections on hospital care and symptoms of severe ME, as well as a few doctors letters that mentioned my ME diagnosis at the time, and light and noise sensitivity.

Just to be clear - I have severe symptoms so needed help with the environment of hospital, most of all. If you don’t need help with that, then there wouldn’t be as much to be concerned about.

Edited to add that was my diagnosis at the time.

 

I had cancer surgery last year and ME was never an issue. I didn't mention that I had it. I didn't have any problems with anesthesia, pain meds, recovery was quick without any complications, it didn't affect my ME at all, and it didn't trigger PEM - in other words I did fine.

 

I edited my earlier comment, just to be clear that severe ME was my diagnosis at the time (it is not anymore), but I had severe symptoms and in particular the light and noise and touch / pain sensitivity. It was these sensitivities that affected my stay in hospital and would’ve made things much worse for me if they hadn’t been addressed. If I didn’t have this issue, then I wouldn’t have been as concerned. If you see the hospital sections in the new NICE guidelines, these are the main issues really, as well as flexibility of care.

I also explained my allergies to certain medications. I didn’t have any setbacks from surgery itself nor was PEM after surgery a big issue. (I had other complications but they are are irrelevant to ME, also issues with pain but again not sure how relevant it is).