I noticed my eyesight was blurry in mid october last year. I went to my gp who sent me straight away to the eye clinic at hospital. After several tests I was told they were unsure what was wrong and would ring me the next day after they had consulted a specialist.The phone call the next day was upsetting as told it was cancer and I would have to travel 3hours to a specialist hospital for the appointment. I recieved the appointment for 7th November were i was diagnosed with wet macular degeneration and referred back home for treatment. The appointment for this was 14th December! and was told its too far gone and would not benefit from treatment, advised to take vitamin supplements. I have it slightly in my other eye and was asked if the wanted to keep a check on it i said yes and next appointment is late April. Is it worth me getting a second opinion regarding treatment?
No treatment?: I noticed my eyesight was... - Macular Society
No treatment?
Hi norwh59. I'm sorry to hear about your problems. I don't know where you live but that does not sound acceptable to me. I really think you should seek further advice - maybe contact the Macular.org website Helpline 0300 3030 111 ( macularsociety.org). Good luck. Let us know how you get on.
So instead of "eye cancer" you have macular degeneration ?
Both eyes are affected, but one eye is worse than the other ?
You are at risk of losing the central vision of both eyes !
Don't dilly-dally for another three months, get a second opinion ASAP !
You sound very unlucky with the way you have been treated and diagnosed. If you have wet AMD you should be getting injections for it.
You really need to get a second opinion and contact the macular society who are extremely helpful. Good luck.
I am definitely not an expert, I am in this community because my mother, has wet AMD (in both eyes). To start with I believe since your other eye has started developing amd then it should receive treatment (ie injections) and not wait for a later stage. In fact, the earlier the stage the better. As far as the other eye is concerned, I don’t know if if it’s common practice not to follow treatment with injections and rely instead on vitamins if the AMD has advanced. It sounds strange to me whatsoever. I would agree with what others have said; seek for another opinion.
I would certainly ask for another opinion. Your experience in no way matches the care my friends and I have received. I know people whose eye sight has almost gone who are cared for and treated very sensitively at my eye clinic.
Steven
Devinitely another opinion. I have suffered eye cancer, where were you sent for specialist diagnosis? It ought to have been one of only 4 centres in mainland Britain; Liverpool St Paul’s, Moorfields London, Sheffield Hallam or Gartnavel Glasgow.
Other centres are NOT qualified to identify all the symptoms of ocular melanoma. I have experience of that. 😳
I live in Northumberland and was seen at Sheffield who i cannot fault,the consultant there reffered me back to a local department near me and sent a letter explaining my diagnosis and asking for me to have intravitreal therapy.
Oh good, Sheffield Hallam is one of the specialist centres for diagnosis and treatment of ocular melanoma and so insofar as the cancer diagnosis is concerned you have been seen by the right people.
Second opinion .....quick. that is all wrong. ..
I agree with all of the above! Let us know what happens. All the very best and a big hug! I have wet AMD in one eye, and a cataract in the other. In my experience you have to "fight your corner". No-one's fault (Except Govmt? Cash strapped NHS?). I do strongly advice you to contact the Macular Society. See above. Great source of help/comfort/advice!
Yes your story is quite shocking you need to get second opinion asap. I found it difficult to be taken seriously at first as my optician referred me to the eye clinic who then triaged me off to Specsavers without seeing me. They all said I had dry MD and nothing could be done. In frustration I eventually paid to go private and was told it was wet and had my first injection. Needless to say couldn't keep paying privately so switched to the NHS but it was such a tortuous route to get eye clinic to take me seriously. I feel for you as our eyesight is so precious. As someone else said you often have to drive things along yourself. Hope things improve for you soon. Let us know how you get on, everyone on this site is so supportive.
Absolutely get another opinion asap. I was awaiting a cataract operation (NHS) and noticed one day that the sight in that eye had deteriorated literally overnight. I made a private appointment for that day, to be told that yes, the cataract was ready to be operated on but more importantly I had very advanced macular degeneration and scarring which could well be too far gone to benefit from any treatment. He did however refer me as a emergency to the local NHS eye unit where I was seen that afternoon. By this time I had almost no sight in the affected eye, almost everything was hidden behind a large grey blur. They ran a lot of scans etc. and I was given an injection of Eylea there and then, with an appointment for a month's time. Within 24 hours I had recovered virtually all the sight in that eye, apart from the very centre. The NHS consultant said she hadn't expected such a result from such a scarred eye. So, two years on and I have been very lucky - the bad eye is holding its own, with an injection every 2 months.
So don't give up, get a second opinion asap and I wish you lots of luck.
Dear norwh59
I live in Pennsylvania and am accustomed to excellent eye care so to read about your experiences shocks me. To say that your wet Mac is untreatable and take vitamins is poor advice. A competent Dr can arrest the progression of wet Mac and save your eyesight. To not take injections Guarantees losing your eye sight. Please get a second or third opinion until you find a Dr who is interested in saving your eye sight.
I am o sorry to hear about what has happend to you my heart truly goes out to you. You are not alone.
Get a second opinion. I was told there was nothing that could be done too. The doctor very bluntly told me that at some point the blood cells would burst, my eye would fill with blood and I would be blind in that eye. My son made a appointment with another retina specialist in another city. This one gave me the option of getting injections, stating that I really had nothing to lose. I have been getting them for over 4 years and so far I still have my sight. It is worth the cost to know you are doing the best thing.
Thank you for all your comments and support. I got an explanation from the consultant regarding no treatment.My right eye is below the guidlines for treatment so would be of no benefit, my left eye is dry macular which was never explained to me,I feel i have to accept his results now.
I just found out 4 days ago after being referred to a retina specialist in the US that I have myopic macular degeneration. I didn't have blurry vision but huge distortion of all vertical and horizontal lines that came on in an instant. The thing that scared me though was the bleeding did not show up on the OCT scan. The first O.D. told me I could wear an eye patch. What? I don't think. At Kaiser (a big US HMO) they won't start shots until they see bleeding because of the risk involved. Thank God they found bleeding Friday after an angiogram. The improvement in 4 days has been huge. I am 75% better.
If you have wet amd, you have bleeding so hopefully it can be found and they will start you on the shots. I have a bit of soreness in my eye, but the improvement in vision is worth any amount of the pain.
How will NHS Eye Units manage to catch up ?
Mislaid medical notes
New rationale for treatment
Review
