Feeling a bit lost and in a waiting game

[Gillian1975]

Hi everyone, I'm Gillan I'm age 41 and I was diagnosed last year with WMD and a macular oedema in my right eye. My left eye apparently had some but not enough to worry about or treat as yet, plus there's retinopathy in left eye also. I attended macular clinic at hospital where I had various tests done included injecting of dye into my arm. I was shocked and confused about my diagnosis. The consultant said she was not sure if I should have injections or laser or both. They gave me laser treatment. I was informed that I was due back at clinic in six to eight weeks and would receive appointment by mail. My eight weeks was up in February past. I rang in April concerned I hadn't received a follow up appointment to be informed that there is even a waiting list for follow up appointments!! I'm still waiting. My vision is worse since the laser. Its much more blurry and I struggle to make out peoples faces both in the street and on TV. I have diabetes I should maybe mention that and am currently on long and short term insulin daily plus a weekly injection. I'm also on two different tablets for high blood pressure. I just wish the clinic would bring me back so I can tell them I'm worried about my vision. I can't get my glasses renewed at optician til I find out what's happening or if getting any further treatment as optician said my sight could change. This is all scary and frustrating. I don't even know why I got laser and not injections like so many others here seem to have received.

[Macular_1]

Hello Gillian,

I am so sorry to learn about your macular oedema and treatment uncertainties.

Please see our booklet about diabetic macular oedema at the following link;

macularsociety.org/sites/de...

The delays at your eye hospital are not acceptable and you should contact them again and request an urgent appointment.

Please also see our booklet called your essential guide for the care of wet macular degeneration at the following link;

macularsociety.org/sites/de...

If you would like a chat with the Macular Society helpline, please call us on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Macular Society

[rosyG]

Hi Gillian,

All the major eye units have an urgent care section where you can just turn up- I did this when had sudden vision loss in january ( was under the clinic on ongoing basis with appointments.)

Do take yourself in and push to be seen!1 Let us know how you get on

[Hidden]

Hi Gillian, hope you're doing ok, it's very worrying all this business isn't it?

I agree with Mac Soc and rosyg - take yourself off to the eye clinic and demand to be seen. Do not be put off by the admin staff, they are not medically trained and will not spot that your consultant will have wanted to see you before now (I've had times when they have sworn blind I was not to be seen but I made them get my notes and read what consultant wrote -lo and behold, I was seen within the day! Clearly they had missed it. ) Sometimes human errors happen and we have to be alert and take charge for ourselves. Not to be unpleasant to them of course , but be firm!

're laser v inj - my understanding is that you get laser if the damage is in certain area which will not affect the fovea. It does cause a bit of scarring though I believe , maybe that's why your vision is a bit worse but is hopefully now stable (my own damage was too close to fovea so for that reason I couldnt have laser as it would have made things much worse).

Don't understand if you have wmd in other eye why they've done nothing about that.

Did they give you an amsler grid to check your sight? This will let you monitor if stable or worsening. You can download off the internet

As a final thought, if you struggle to get any joy from your clinic I suggest writing a complaint to PALS asap. That should get your case looked at pretty quick by the clinic manager. Focus on the unacceptable delay in follow up, your worsening vision, the fact both eyes are affected, and it sounds like you were not given the right guidance in the event of any post laser problems which you should also complain about along with the fact they should have asked and noted you are diabetic which can cause eye issues so needs close monitoring.

Don't be afraid of complaining - you are helping them improve and the next patient will be thankful you did!

It sounds like you've just unfortunately slipped between the gaps! Pull yourself up girl and make some noise ha ha x

Finally, sending you a hug x Best wishes to you going forward.

[Hidden]

Hi I agree, sounds like diabetic retinopathy or maculopathy with oedema rather than wet amd. There are certain guidelines on the treatment of this, including retinal thickness of more than 400 microns before treatment is started, thsts probably why only one was treated.

If you know the name of your consultant phone the Secretary.

The hospital may have an eye casualty you could ring, some may have emergency clinics within their opd department.

Good luck

[Gillian1975 in reply to Hidden]

It's retinopathy in left eye but have definatly been diagnosed with wet md in right eye plus a macular oedema in right eye which he said is not that of a typical diabetic one.

[Hollyg]

Gillian, golly what can I say. You have an enormous path ahead of you and I'm , we aren't near you. Sounds like a big hug is in order here.

IMHO, we who are on this very challenging journey face loss but without our trusted MDs' help outside of treatments.

what I have found is a diet and exercise program...to fight inflammation. I've had probably 30 injections which put me in bed for 3-4 days.

once I began my anti inflammation regime nit only do I feel better but my sight has as well.

but that isn't where u are at present...im very proactive..please forgive me.

please pay attention to the emotional distress, I believe in treatments with attention to ones mind,body and soul.

hang in there, feel free to contact me if o can be of help.

[tallyho]

Hi there I like you have diabetes ( I use a pump) I have Diabetic macular oedema and have had injections but laser too. It may be that the amount of fluid is not yet enough to receive injections hence the laser. Not every hospital does have a place where you can just turn up mine does not u have to go through A and E first. Have you tried PALS they often can get things pushed on quicker. Anyhow take care