Those who have had laser for PDR


#21

Nooooo no no no not another bleed, that’s awful. I know they often do wait n see before doing vitrectomies as there is always a small risk with any surgery or procedure, so I suppose if there is a slim chance it’ll clear…? Fingers crossed for you Tues then, do let us know how it goes.



I think if you’re gonna self-medicate either high dose and/or long term, even with ‘just’ vits or minerals, it’s best to get medical advice and monitoring to be as safe as poss. I still tend to try to find out as much info myself and never can totally trust the profs (obviously you often have to a lot of the time like with the PDR we’ve been discussing, but even then…if in doubt, 2nd opinions, forums (!) etc. ). When I was put on vit D by consultant, my GP kept adding calcium on to the prescription, and I kept fighting to get it removed, until he would only give me combined D with calcium! I didn’t need the calcium, knew the risks (heart, kidneys like you say), and the D dose in those combo tabs was too low to keep my levels up anyway. Eventually my consultant had to write him a strongly worded letter. Then he retired and I changed doc & the fight started all over again. I was anaemic as a teenager & also on and off in the decades between, so I’m not prepared to take risks there now - as long as my iron levels are monitored I’ll keep taking the supplements, mainly because of the risk to my PDR. Omega 3s - I take freshly milled flax seed (or linseed) daily as it has the right balance between Omega 3s & 6s. You could end up working at all this supplementation business full time on yourself, as well as the hard slog at being a ‘good’ diabetic!! It’s exhausting! That’s also why it’s good to work with medical profs if you can. Alas the GPs here are virtually useless re supplements and nutritional info, but I find my D consultant and hospital nutritionist to be good on this stuff.


#22

Vit C is safe in large quantities, don’t you just pee out any excess? Dunno about vit E. but high doses of any one thing could unbalance others, even if they’re water soluble. Do you have access to a nutritionist/dietician? Could be worth getting all your levels checked and supplements reviewed even if just to put your mind at rest, you could do without extra worry at the moment.

Really horrid that you’re going thru this I do really feel for you. Please please let the vitrectomy be the end of it so you can get back to the joys of life again, including seeing your daughter with both eyes.

Love n healing to you xxx


#23

Thank you so much, Ingrid. <3 (I was diagnosed 41.5 years ago, by the way, so it looks like we both got lucky :P in the same year!)


#24

Hmmm yes, nice coincidence :stuck_out_tongue:



Re supplements, I forgot a very important one!!! When I got dx with PDR over 6 years’ ago, I did far too much panic googling and found lots of info about a herbal supplement called Pycnogenol made from French maritime pine bark. It’s licensed to be prescribed in many mainland European countries, along with NZ, Japan…but virtually unheard of in UK & USA! It has had studies done and papers published, unfortunately not particularly large scale studies, nor enough of them, but one of the conditions it is reputed to help with is diabetic retinopathy! (along with a whole host of other benefits - see http://www.nlm.nih.gov/medlineplus/druginfo/natural/1019.html for starters…I managed to dig out some actual research papers but that was 6 years’ ago & don’t know where anything is any more). So I’ve been taking this herb since then with the knowledge and agreement of both my diabetes consultant and retina consultant. I was also advised by a friend who works in ‘alternative’ medicine to take Rutin (made from buckwheat), known to strengthen weak blood vessels. I’m not endorsing either of these, and have no idea if they are helping me in any way, or even causing problems I’m unaware of, but I decided for me to take them long term based on as much research as I was able to do.



I do know a diabetic, Type 1 since he was a few weeks’ old, who is now well into his 70s and doing amazingly well considering. And he’s by no means been well controlled during his life (& like us had years of inadequate infrequent urine testing and impure insulins to use, for more than

30 years over us). I see him once a year on a residential music course I do around Easter, so it’s just about to come up, and we have a good old moan and comparison (& laugh) about BGs every day. He’s never been on a pump, and going by his results during our week-long course, his control is not great. He likes his naughty food treats like we all do, and a tipple or 3…he’s not in brilliant health, but I do find him an inspiration that he’s still basically functioning quite well and still playing music and doing language and local history classes, and we talk politics etc. He gets about ok (leg ulcer 2 years’ back which against all odds, cleared up). I also think he’s been extremely lucky or something to have got away with all the nasty complications. Really looking forward to having a laugh and a moan about the old diabetes next week!



Oops, sorry to go on & on, it just seems vastly unfair how some Type 1s get PDR, ME etc. & other complications, though they’ve tried their best over many years when the tools available were so much less advanced than they are now. I’ll shut up now and wish you the best, and just hope this will be it for the nasties in your life for a very long time.



Ingrid xx


#25

Thank you for the suggestion! I did some reading and just ordered the Pycnogenol...I remember reading about it probably 10 or more years ago in a d-magazine, but at that point my eyes were completely stable so I'd forgotten. I figure it can't hurt (except for my pocketbook, ouch that stuff is expensive!) and more than worth the money if it does help.

Thanks also for the story about your friend. So encouraging to see people still enjoying life after so many years with D. All my life I’d assumed I would probably die young, when my daughter was born I found myself already mourning the possibility of never meeting my grandchildren, so stories like this give me hope. It does seem unfair though that complications seem to have as much to do with luck as control. Even though the DCCT showed there was correlation, it also showed the correlation wasn’t exact.

Sidenote, but I was actually part of a kidney study here because I have elevated creatinine, even though my A1C’s have been excellent for so long—They were looking for a correlation between genes and chances of developing Diabetic Nephropathy. (They couldn’t give me the results, but writing this just prompted me to look online and I found the study: LINK. Apparently there is a huge genetic component to nephropathy, so I’d assume there probably is to most complications, and we’re just lucky. ;-)


#26

Just an update...I had my vitrectomy yesterday. It was uneventful, but at the time of surgery I noticed blotchy black patches at the outside of my eye, a ring with the vision at the very outer peripheral edges clear, but just inside the periphery a blotchy ring of black completely surrounding my visual field, and leaking into my central vision on one side. There's zero vision there, I can't even see light or shadow. I have my followup this afternoon, so we'll see what he says. This is scary though, because I can't find any reports online of anything similar following vitrectomy, other than studies talking about black spots due to optic nerve damage. I'll update again after my appointment today.


#27

Hi Elizabeth, ack not heard anything like that before, scary indeed. Not knowing is so scary too… It’s always easy to fear the worst, especially with all the Internet info at our fingertips. I’ve had times when I’ve been convinced I’ve had another (small) haemorrhage and done all sorts of visual tests on myself & read as much as possible, including specialist medical books in shops/libraries - oh, and just looking at a bright computer screen will bring out the worst perception of the new visual ‘abnormality’! - only to find out at my appointment it was something far less threatening like a thick lump of debris which will slowly move around away from centre of vision, and told by lovely consultant to stop staring at white computer screens, blue skies…and worrying so much…until i know if it’s the worst case scenario which we’ll then deal with together. He always gives me large doses of laughter therapy gratis too!! Hope there is a similar explanation for you today (well, I know it won’t be the same, but something non-sight threatening). I’ve come to a personal truce with not worrying about peripheral sight loss or changes, as I’m grateful it’s there & not more central, assuming of course it stays there & doesn’t spread. Speaking of grateful, I’ve been reading this account of a diabetic’s journey to hell & out the other side - major complications (incls description of his vitrectomies) by age 38 after less than 20 years D, then stroke, then…BUT it is an uplifting journey, with lots of useful psychological food for thought. I dunno, can’t relate to everything he says but I am finding it uplifting and reassuring. Here’s the link to his website & intro, the short book is via a PDF link at bottom of the page.



http://www.supportersofsurvivors.org/book-2/



I found a lot of useful info on this UK page initially, and even got into correspondence with the consultant running it about what laser settings could work for me as I was struggling with pain during laser (I eventually changed hosp to my new wonderful consultant who used a gentler setting…which however left greater scars…always a price to pay!! I can live with this). Just in case it helps??



http://www.diabeticretinopathy.org.uk/



Really really hope you get some reassurance this afternoon. Thinking of you. xx


#28

Does anyone know how Elizabeth made out?