Diary of a Trabeculectomy with MMC


So what's all this about then?  Well, I'll tell you!

I have Glaucoma - which cannot be controlled by drugs alone, and it is basically taking my sight.

I am due to have a Trabeculectomy operation and I don't really want to know anything about it -but want to know the following:-
  • Will it hurt me?
  • Will I have a wall eye?
  • Will I have a squint?
  • What if I want a wee when they are doing it?
All the stupid questions....

I cannot find this information on the internet,so I thought I would start my Diary - maybe it will help someone elsewho is having this done as well.

I will post everytime I have an update - starting from now...........


PRE-OP

The pre-op is just about taking the pressure in the eye thats being operated on, it also means you can ask some questions - but I keep getting a different answer.

My consultant says just follow what I tell you to do - that makes sense.

This also is a good opportunity to threaten to put the consultant's windows through if he hurts you (which I did!).

I also found out about the anaesthetic - I wanted it done under General, but they won't do that: you have to be awake whilst they are operating on the eye.  Also, it's not a laser job - it's a knife and fork job, along with a bit of needlework.

Now - he tells me that will hurt me - but just for a few seconds until it begins to work.  Then you lay very still whilst they work on you - I have been told to expect a minimum of 1 hour.  Therefore I must NOT think about running water, rivers flowing, trickling or anything like that - to be on the safe side I am going to dessicate myself!  Although you can eat and drink quite normally - no restrictions there.

Beforehand you get some steroids to put in your eye - this helps prepare it, stop any infections etc (4 times a day until the day of the op).

So just a waiting game now until the day of the op.


Day of the operation

So you go in - and then whoever is with you must leave.  The only people in the waiting room are those awaiting surgery.

The surgeon comes and asks you what you are having (I said Egg and chips) - why I have to tell them I don't know!  Then he draws a massive arrow on your forehead towards whichever eye he is operating on.   By this time you are beginning to have second thoughts, take it from me!!   I was thinking Christ Almighty if he has to have an arrow pointing out an eye.........!!!

Then the nurse comes along and puts in some drops - this makes the pupil go really really tiny.

By this time I was in and out of the toilet like a fiddlers elbow.......

Along comes the anaethatist (spelt that wrong) and I was walked to the little room and lay down on a trolley.

Mop cap put on, face swabbed - bear in mind I am now totally petrified.

Some stuff squirted into the eye and bobs your uncle - the other guy is reaching over meholding me down and 2 needles direct into the eye and the clamp is on. That arseing clamp - if you are having this operation I am not going to tell you if it hurts or is painful.  I will skip that totally.

Wheeled into the next part of the theatre - there were loads of people in there for my operation. I think because its not a common operation and I know that there were observers.

So, some sort of rubber matting (I think) covered my head (maybe because I didn't have any make up on and they were scared!).   A funnel which I thought was a bit of gas and air - but it wasn't - it was simply to get some air to me.  Clip on the finger monitoring my heatbeat which was all over the shop.
There is a hole in the rubber and although my other eye wasn't covered I was too scared to open it, and I didn't want to look.    But you do know what is happening.

I was not strapped down in any way, just laying down and my head was on a neck pillow (that was quite comfortable!).

To be fair, I never moved a millimetre - cos the thought of what could happen if you did makes sure that you are rigid.

When it was done (over 1 hour later) I was wheeled out.  I asked to come home straight away - and that night was very hard, I will admit to that.

You go back the next morning for the dressings to be removed and for all the medications.

Soooooooooooooooooooooooooooo

Did I want a wee on the table? I honestly was past caring if I had a wee, a shit or gave birth to a donkey.

Does it hurt? It would be wrong of me to say because mine had other circumstances and was not massively straight forward -  but I can honestly say that after the operation I didn't have a headache or any pain whatsoever.  It was uncomfortable, nothing more - but I had to take some medication (Panadol) but not for pain, mainly to help me sleep.

Afterwards - my advice is (and you will need this) is to keep quiet, go to bed, don't do anything at all. Just keep calm, quiet, cool - if possible don't have lots of visitors.  I didn't want to see anyone or even speak with anyone - it really really REALLY took it out of me.   The week spent quietly has paid dividends as it healing really well - so much so that the consultant is overjoyed.

Even now I get tired - you cannot bend, cannot lift, cannot strain (that means going to the toilet as well) - anything physical.  

I can feel the stitches pulling and its very easy to develop a bit of a loss of confidence - so ease yourself back into things.   Dont worry about the not bending - you soon adapt.

You need to remember it is a 3 month procedure - and you have to go back every week.   I am still on 19 eye drops a day - but this will drop down soon to 15.


Here are my hints and tips:-
  • Wear trackie bottoms and a V-neck - easy to get on and off (especially day of operation)
  • Stock up on books etc. and just rest, relax, chill and keep quiet.
  • Stock up on that micro plaster for sticking the shield on at night - 'cos you never get enough.
  • If you pay for your prescriptions (as I do) invest in a pre-paid card as it will work out cheaper.
  • Don't drive too soon (as I did) - the stitches do pull, but now I am easing into driving some 2 weeks later.
  • Invest in a child's hair wash protector from Amazon - you can wash your hair without worrying about the shampoo going in your eyes or getting your face wet.
  • Buy face cleansing wipes, moist toilet tissue and syrup of figs!!!!

1 Month later ...

Having followed every single instruction to the letter and more - I do beleive that it has paid dividends.   Still have to wear the night shield and I will continue to wear it until I feel comfortable enough to go without it. The Doctors are amazed at how well its doing - but keep stressing that I am not out of the woods yet.

The eye drops have been reduced slightly which is a good sign - the stitches are still in and need taking out at a later date.

Still not lifting heavy stuff, not bending overmuch either - nor getting my face wet at all and all of this is helping.

OK - what happens now......well I have been informed that the other eye will need doing (they can think again!).  

It doesn't hurt at all - but it does get very tired very easily and quickly.  I have noticed that my glasses need changing - and the consultant did confirm that it is par for the course.  But not to do anything at all until he is totally happy that the eye is OK, that makes sense.

Advice from me to anyone who is having this done remains the same - be extra cautious, 'cos it will pay off in the long run!


3 months later

Endless visits to the Hospital for it to be checked over and the pressure taken.  Once it was sky high and the consultant just massaged the bleb and it went right the way down to single figures.

At the moment it sits very happily at 10 and if it will stop at that everyone is over the moon.

One of the problems is that the optic nerve has been very very damaged and is very fragile - although I do suffer from a range of vascular problems which doesnt help.

So ... my stitches are stopping in, they are not bothering me so the consultant sees no need to take them out - that suits me.

Still on the Dexamethasone - but now down to 4 a day.

I was told it would be a full 3 month proceedure and to be fair it has been exactly that - it has been such a long journey - and I am really hoping that it continues to do well.


6 months later

I think I am in trouble ...

The bleb is leaking and that means God knows what ... I go tomorrow but I can honestly say I am gutted and totally shitting myself, I keep feeling sick at the thought of having them poke around again.

So .........................................................I have been back today to see my consultant, and as always I will be 100% honest with you.  

DO NOT LOOK UP THE STUFF ON THE INTERNET AND TRY AND SELF-DIAGNOSE!
Which I did!

Everything pointed to the bleb leaking and that's not good - and I have had the most horrendous time, thinking that they are going to start poking round again.

What has happened is that the eye is wetter than usual, the pressure is 12 and bubbles are coming from the bleb.  BUT not all the time, and this week feels better than last and there is no more discomfort that usual.

The consultant (God love him!) said straight away - "It's not leaking". He had a good look,  and what's happened is either side of the bleb are two airpockets - and every time I close my eye the liquid is squishing - hence the bubbles, and the fluid and the pressure is now going down to 11.

Phew - relax- chill and praise the skill of the consultant!


12 months later

And so ... almost 12 months to the day since I had the operation, and I have to go back in.

The bleb is healing over, and it is full of scar tissue which means that whilst it is doing its job - it's not doing what it should do to its full ability.

I have to go in now and have an injection direct into the bleb which will dissolve all the scar tissue - this will be repeated over time until its clear.

This means I am back on the drugs and at risk of infection - it also carries a risk of losing my sight in that eye.   But I have no option - if I don't have this done then my sight will go anyway - rock...hard place....me!!

All I know is, I lie on a table, they will clamp and numb my eye and then inject it ... then back home to recover.


The injections

It is important I keep updating this - because I couldn't find any information like this when I had this done. So for those of you who are having it done - I do hope this helps......

So - I sat in a chair upright, which is ALWAYS much better than laying down.  I was in a side room and the nurse came in to put in lots of eyedrops over a 15/20/30 minute period.   I kept saying "I can see you" - my eye didnt feel any different, but I was associating seeing with still having some feeling - so when the Dr walked in I was just about ready to jump out the window.

Previously I had seen the needles and stuff they were using - so I knew I was in for a big job.  There were 3 big hypodermic needles and I knew they were for me.   The Dr shines this great bright light into your eye and immeadiately you see nothing but white, the eye is clamped (never felt it) and you are asked to open your good eye and look in certain directions whilst they "needle felt" the scar tissue.  I knew they were doing it, but given the previous operation it was honestly nothing.

Then you leave - no cover, no nothing - BUT your eye is gigantic and sticking out like a ping pong ball - I couldn't get my glasses on!!!

From me - don't drive, go home - rest up, don't bend - take it carefully for at least 2 days - and
then just be a bit careful.  Do'nt go jumping about - the Dr will say "carry on as normal" but I would
geniunely say - take it easy.  Be on the cautious side.

Finally - go back to the main blog and see how I have altered my diet and lifestyle. As a result of this, over the last 2 checks my eye pressure has gone down!

However - I wear specs and it does look like a new pair every year as your eyesight changes to compensate for the operation.

For me - small price to pay!

2016!  And so the journey begins again..............

I have now been informed that I must have the operation on my other eye.  Although initially reluctant, I really have no choice as the pressure is too high, they cannot control it through drops alone.
However, it is now a different surgeon - and I am also older and wiser!  My biggest hurdle is do I have a local or a general anesthetic?
I have various responsibilities, I cannot be out of action for too long this time - but I know I HAVE to be, and I know for this I MUST put myself first.

So - I have asked for it to be done in July, that way I have a full and clear summer to recover.  The next step is to discuss something slightly stronger than a Local but not as strong as a general, because you do recover quicker with a local.

I need to plan this very carefully and in stages - so once again I shall keep you updated.  Its a long long journey and one I wished I did not have to take.

And so...................

It is now Christmas 2016, yes the operation has been done and I am STILL recovering.  It was done under General and I stayed in hospital.

There was minimal pain, maximum recovery time and a massive problem.  I am not going to elaborate because if you are reading this and you are due to have this operation, then that would be wrong.  What has happened to me, happens to only the tiniest % of patients, but it does and can happen.   I know!   

If you are still wavering, then feel free to email me, I will answer openly and honestly any questions you may have. 


4 comments:

Wandering Star said...

Cathryn, All of us who love you and think the sun shines out of your back side will be rooting for you. Can't tell you how much we will miss our fun filled Monday art classes. xxxxxxxxxxx CB

Sandra's Spot said...

Blimey Cathryn just sat and read this diary and you are one brave Lady. I think it would totally freak me out. Hope you are well recovered now. Judging by your project for OOAH you are doing just fine. Hugs Sandra X

ionabunny said...

Just read this. Very entertaining in a gruesome sort of way. Still not sure what you had done or why but hope things are better. I want to join your class. Alter a mouse trap!! What a laugh. Is that with or without the mouse..........

Paul S. said...

Thank you! Your diary is most helpful. I will undergo a Trabeculectomy in about 4 weeks. (Dec 11, 2014) Right now it seems scary but your diary has helped me so much. Thank you thank you. Paul Olympia, Washing USA