Re-graft

[Loopy-Lou]

Thanks Gareth I'm so there!!!

[Loopy-Lou]

Arghhhhh I can't get a reply.. I emailed his secretary [gave it a month since I first asked] and no reply. I asked for a reply before the pre-op assessment in 3 weeks time [surgery scheduled for July]. Perhaps I need to cancel, make an appt with the consultant and ask my questions cos it ain't working this way

[Loopy-Lou]

These are the questions I put together, someone tell me if these are unreasonable or stupid?

1] What is the survival rate for 1st re-grafts at 5 years and longer?

2] How common is the occurrence of grafting triggering rejection in the other eye?

3] What is the incidence of secondary Glaucoma occurring with re-grafts?

4] Rejection treatment protocols: I know these are primarily topical (i.e. increased Dexamethasone eye drops/subconjuctival injection), but what percentage of people go on to require systemic treatment with steroids? (Please note that I cannot take oral steroids for long periods i.e. months. This is due to a couple of factors, including that I have osteopaenia).

5] Do you use a prophylactic injection of steroid under the eye immediately after surgery? (The reason I ask is so that I can be prepared for the pain [I experienced significant pain after such an injection for a rejection episode])

6] I am asthmatic but not seriously so. It is controlled with inhalers and I’ve no admission for it in 25 yrs and it doesn’t present any problems with GA’s. I have on average 1 rough spell per year induced by seasonal virus’s which result in incessant coughing. If this occurred within a couple of months of surgery could the coughing raise intraocular pressure or stress the sutures? Should I have that treated aggressively to stop the coughing? [I would be willing to get a 5 day course of Predisolone for that from my GP which does stop coughing].

7] Lastly, I need clear instructions in advance regarding exercise restrictions after surgery as I need to plan ahead: I have produced dance for film and intend to produce more, therefore I need to know in advance for rescheduling.
Please could you advise me of when I could recommence the following:
- Light hand weights [3kgs] and light weights on resistance machines
- CV equipment – walking [not running] on the treadmill/cross-trainer
- Stretching and pilates [no head stands]
- Contemporary dance or ballet class
- Bharatanatyam which is extremely vigorous including heavy stamping, jumps from grande plie and fast eye movements

[Loopy-Lou]

You'll never guess what?! I've received a reply this afternoon!! I'm really pleased as I was getting anxious and information does help me to feel more 'in control' of my circumstances.

Here's what he said;

The survival rate for 1st re-grafts if the first graft didn’t fail due to infection [which mine didn’t] is 80%. That’s pretty good isn’t it?

Rejection triggered in the other eye is not expected in a long accepted graft & secondary glaucoma would not be expected in my case and the use of systemic steroids is rare.

His surgical preference does include the dreaded steroid jab under the eye but pain relief and the annual asthma episode I get causing incessant coughing would be something to be discussed with the anaesthetist.

Lastly, the exercise restrictions are nothing like I was led to believe but obviously no contact sports which is fine as I wouldn't.

I feel more positive and inclined to go for it, what do ya reckon? I need some encouragement

[rosemary johnson]

Well, congratulations on triggering a response at last! Sometimes they seem to need chasing.
Two comments on those answers that occur to me are:
a) think he's misread your questions about incessant coughing with asthma/RTI combination as meaning, if you had a cough on the day of the op (ie ask the anaesthetist about suppressing it for the duration). Don't suppose anaesthetist would care to comment on what to do if you got an IOP-raising nasty cough in a few months' time
b) 80% survival rate after 5 years means that the tissue is still there, rather than been rejected or otherwise died, NOT that the vision is any use to you
IT sounds likehe's trying to be reassuring - depends I guess on what level of steroid you thin you can cope with, and how reassured you want to be (do you feel your concerns have been taken seriously, or brushed under the carpet? for example).
Good luck, whatever you decide.
Rosemary

[Loopy-Lou]

Yes I know what you mean about survival rate, the existing graft survived but has no useable vision, so in terms of vision, that couldn't be made worse.

You could be right about the coughing, I guess my feeling is - if I had the lergy triggered asthma cough within 3 months of surgery I'd be inclined to aggressively treat, I could handle a 5-day course, it's as much about the stress on the sutures as pressure.
The post-op prophylactic steroid jab doesn't fill me with joy so I would need to talk to the anaethetist about serious pain relief because I don't want to feel that again and Ibruprofen didn't touch it last time. I want serious drugs!

I think he answered properly, he can't just pluck a stat out of the air to make me feel better and he seemed pretty certain about my other concerns

[GarethB]

A medical success and patient success are two different things.

For a surgeon the grat is successful if it ramins clear and healthy with no signs of rejection. Vision corrected or other wise from what I have heard is usually forgotten about, that is for the optom to deal with. I think the same is true of intacs and CXL.

For the patient the success is as above but with useable vision corrected or otherwise.

[Loopy-Lou]

I agree, the old graft survived but with no useable vision after rejection/blood vessels growing in so overall a 'failure' even though the graft didn't fail. Whether I would achieve useable vision with RGP's after grafting would be in the lap of the gods.

Anyone else got a view positive or negative?

[Anne Klepacz]

Hi Lou
We certainly have some KC Group members who have had successful regrafts 20 or more years after the original graft - successful as in they can see out of them with a contact lens! I don't know if any of them post here, but talking to them in the past certainly made me feel better about the long term prospects if one of my grafts should decide to pack up on me in the future (of course I'm hoping they'll outlast me). Overall, the answers you've been given seem encouraging. What no one can ever give is a 100% guarantee. But it does sound as though you wouldn't be any worse off than you are now given that the chances of rejection in the other eye are virtually nil. And you might be a lot better off. Good luck whatever you decide.
Anne

[Loopy-Lou]

Thanks Anne
x