Quicktopic posts: Nov 2003

[Janet Manning]

Hi Jane,
Don't feel guilty! Surgeons seem to regard us as 'recovered' when we have clinically got over the operation. The fact that there are other problems escapes their notice. I too was told that I would be off work for 2 weeks. After this time the surgeon told me to get a pair of glasses and get back to work! I had less than the required vision for driving with a lens in the unoperated eye and no lens in the grafted eye. Glasses do not correct my vision and the hospital optometrist had refused to make me any!

My job, as a University lecturer, required a 60-70 hour week in term time and that I drive round schools across the County, supervising student teachers. .......and he thought I could go back to this!

In fact I never went back because when I did get the first lenses I was told to wear them only 6 hours a day - hardly enough to allow me to do a 60 hour week. They did not allow me to drive either.

There can be lots of ups and downs for up to 2 years after a graft. Each time stitches are removed it means more steroid drops with preservative and thus no lens for about 4-6 weeks.

My job was not one that could be disrupted in this way for so long, so I took early retirement and retrained for yet another career. I had to fight to be referred to Moorfields in order to try scleral lenses, but these have changed my life. I now get 12 hours a day vision and can happily run my own practice as a homeopath.

So there is light at the end of the tunnel, but don't be bullied into going back until you are sure you can cope. I find even now (4years on) that the flexibility to go without one or both lenses for all or part of a day when necessary is crucial to managing the situation.

Best wishes Janet

[Yussuf]

Hi, need advice.

I am a father of two 16 yr old twins who are recommended for corneal transplant surgery next month. They were diagnosed last year and lost 80% of their vision on the left eye, the eye recommended for surgery. Initially, we were trying Rigid Gas Permeable lenses which made them miserable due to extreme discomfort. We took them to the University of Texas Southwestern Medical Center in Dallas, Texas, USA. The doctor there, who is the vice chair of the department of Opthalmology, recommended surgery on the left eye for both boys. We are scared to death.

The boys are now in high school and seem to have no problem in school. They get good grades and do not complain about any severe vision problems when it comes to reading and doing their school work, other than getting a little closer than normal to things they need to read. The condition does not seem to affect their everyday life. They continue to be cheerful and have fun. We would hate to see their life interrupted in any negative way. We fear complications. We have to make a decision whether we need to go ahead with the surgery. The doctor recommended it at the next school break, Christmas break.

Anyone with relevant advice on this will be appreciated.

Thanks,

Yussuf

[Gillian]

Yussuf: My advice and this is as a KC sufferer without medical training is to think very very carefully about a graft. From my experience which is reading extensively about the condition and this website is that the graft should be done as a last resort. There are many many options that in my opinion need to be explored prior to making this huge decision. You say your boys are managing well at school which is great. A graft should be considered if the following criteria applies:

Normal every day life is being impossible
All options have been explored to make life more tolerable.

You don't say what correction they are having in their left eye. There is a range of options out there: rgp, piggy backing, schlerals - please please try these first.

Although the graft is quick to do and the hospital stay is minimal the recovery time seems to be anything from 12 - 18 months. There are many complications that can occur afterwards and one has to be very careful not to rock the boat.

Good luck and keep us posted.

[Janet Manning]

Hi Yussuf,
Suggest you stall a bit on the surgery. There is as yet little research on the longevity of corneal transplants. I know people who had transplants 30 years ago and are doing fine, but others who are experiencing problems even after years of stability and facing regrafting. Your boys are very young, so it would be better to wait as long as possible if they have to have the op.

Scleral contact lenses might help them. These are large lenses which cover most of thepart of the eye which can be seen. They don't actually sit right on the cornea like the small lenses do, but only touch at the edges and are therefore much more comfortable. The level of correction achieved is usually very good. These lenses have totally changed my life. If I had had them pre graft, I would not have needed the transplants.

There are places in the USA where these lenses can be fitted. If you have trouble finding somewhere, let me know and I'll find out at this end.

Good luck!
Janet

[Sue Ingram]

ACUPUNCTURE AND KC TRIALS:
-------------------------
Hi everyone, I have just been to Dr Dexter today in Maida Vale for my first acupuncture treatment. Dr Dexter (whose son has KC) is doing some clinical trials to see if acupuncture can help with the symptoms of KC (it is apparently very good for pain and also allergies).

Dr Dexter is still looking for more volunteers to take part so if you have KC, are interested in helping and also experiencing acupuncture, then please give him a call on 020-7624-2804.

(By the way, it does not hurt! Just need to lie on a couch for about 10 minutes with some very small needles in you).

I think it will be very interesting to see what results come of this. SUE

[bipin kantaria]

I have had grafts in both the eyes.I just cannot face any glare in the day time. The sun ray affects a lot.Does anyone face similar problems or can advice what to do?

[sarah marsh]

hi
just to let u know i went to see surgeon for a check up on friday and all is well .
the graft is looking good and although he prefers to take all the stitches out at once he is happy for me to go back as and when its needed. didnt have to make another appointment straight away which was a fab feeling !!
hope everyone is well .
sarah

[Janet Manning]

Hi Bipin,
Have same problem as you with the sun, especially lately with the sun's rays at a low angle. I've made hats my fashion statement! Have them in all shapes sizes and colours - what a great excuse for retail therapy! Baseball caps with curved peaks are the best. Never set out in the car without suitable options of light and dark sunglasses, including wrap rounds and multiple hats - to meet all light levels and weather conditions!!!
Have fun choosing hats!
Janet

[Jane Webb]

Yussuf

I was diagnosed with KC in my right eye about 3 years ago and had rigid gas permeable lenses in both eyes. My optician, who is also a corneal specialist at the local eye hospital, persevered with different lenses - the key is getting the right fit for the changing shape of the cornea. In my case, the damage to my cornea was very central so it was a bit easier to get a good fit than if it was slightly off centre. I very rarely had problems, an occasional pain or discomfort if I wore my lenses for more than 12 hours so at the end of each day I would wear my glasses to give my eye a 'rest'.
My optician would always ask at each visit if I wanted to discuss a corneal transplant but I felt this was totally unnecessary for me as I could read and drive perfectly well.

In June of this year I developed a 'hydrops' where the cornea ruptured and moisture seeped through the cornea. These can in some cases, heal after about 3 months but mine left a scar and I was told I would now need a corneal transplant. By this time I was working and driving as usual but with only one contact lens in (in my good eye) - a bit inconvenient but I knew I couldn't carry on like that forever. Friends in the street would think I was ignoring them when in fact, I couldn't see them!!

I had my graft on 21st October and all is well. One minute I was falling asleep under the anaesthetic and two hours later I woke up - no pain at all. The consultant feels the op is a success although I find daylight makes my eyes water and I'm not ready to drive or go back to work yet. There are always drawbacks in these operations but they seem easily remedied. Anti-rejection drops, anti-inflammatory ones - you name it.

I would suggest you discuss any fears with the consultant and ask as many questions as you can so you can make an informed choice. Personally, I can't wait to be able to see properly for the first time in years.
Good luck and let us know what you decide.

Jane W
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[Jane Webb]

Janet

Thanks for the reply. It's true about glasses - you never get the same quality of sight once you've worn contacts. I only wear mine when I'm in the house - I wouldn't dream of driving in them (especially at night).
The consultant warned me that each time stitches were removed my sight is likely to change each time. I find myself thinking a heart bypass has a quicker recovery time than a corneal transplant!! Not something I should joke about I know!

I now feel that I should inform my bosses with all the information I've been given so that they can understand the condition and what to expect in the coming months (or years). Giving up my job is not an option - I travel for an hour on the train to London as a secretary, and need the salary that comes with it to pay the mortgage and I'm not entirely sure I can make the sort of career change that will be more beneficial to my sight.

Anyway, all is not doom and gloom. I'm looking forward to having better sight and glad to hear scleral lenses and your career change have worked for you.

Best wishes.

Jane W
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