the new doctor has very different opinions about my eyes

[charles555]

I was dealt a blow today. I wonder my experience is unique. Unknown to me, my eye doctor had left the practice and a new doctor was assigned for me. - he didn't let me know or made sure someone take over, so I had to phone the clinic about my regular check up -

anyway, at my first meeting with the new doctor, he told me almost totally difference view about my eye condition from the previous doctor. While the previous one was reassuring and encouraging, and confidently told me that since my Ocular pressure is low, with this NTG, I had no worry about going blind, the new doctor's first remarks were basically ''OMG, you have a problem''. He agreed that medication seems to be working and my eyes are not rapidly deteriorating, he says he can't guarantee I am not going blind even with medication since my eyes are already so bad. He said he couldn't even do an operation without risking blindness. He asked me what i wanted to do. I naturally reminded him he was the doctor. I can't undone what happened already.

I left hospital feeling that this was not fair. Two specialists saying a very different view of me and I don't know which to believe. The new doctor seemed really disturbed so he was not kidding.

[Sufitzy]

Hi So sorry to hear what is happening . Ring Patient liaison and ask them to get your case reviewed by the senior consultant . Explain you experience and concerns. Su

[charles555 in reply to Sufitzy]

Thanks Su. What is a Patient Liaison? I live in UK. Is that only in US?

[Sufitzy in reply to charles555]

Hi I live in the uk. It’s the PAL team in the hospital. Ring the operator and they will put you through . Sx

[GardeningDorset123]

What are your pressures

[charles555 in reply to GardeningDorset123]

They were around 14. and then with medications, it reduced to 11/12. My field vision test shows no noticeable deterioration in 7month. But the new doctor was alarmed by the over all condition of my eyes, basically saying, ''your eyes are so bad I can't be confident about your future. ''

[GardeningDorset123 in reply to charles555]

Your pressures are low

[mrswaffle]

Charles, please don’t panic. It could be that the doctor who left was right and the new one is wrong. I have moved areas since being diagnosed and had various conflicting opinions! One doctor says glaucoma is related to migraine, another says definitely not. One says I need a trab, another says I definitely don’t. Then, on two occasions, I saw a nurse practitioner, who didn’t seem to understand the situation with glaucoma/cataract (I have both). I wish that it really was a NATIONAL Health Service. Over the years, I have seen one nurse practitioner and seven consultants. It would give me more confidence if they were more in agreement. Look after yourself.

[charles555 in reply to mrswaffle]

thanks.😀

[Wales99]

Bless you. I can imagine how you must have felt. I was told in the beginning that my glaucoma was almost certainly related to my constant migraines but when I went back for my first follow up they said they weren’t at all & backtracked on what they’d said initially. There doesn’t seem to be any joined up thinking. I think the advice from Sufitzy is good- I would ring patient liaison or the ECLO if you have one & just chat about your concerns. Hang in there & keep us posted. 😊.

[charles555 in reply to Wales99]

Thank you. Does Patient Liaison exist in NHS in UK? What is ECLO?

[Wales99 in reply to charles555]

Hi Charles. Apologies, that wasn’t that clear. I think patient liaison does exist within the NHS but it probably varies with different trusts. An ECLO is an eye clinic liaison officer. I don’t have one because I’ve gone private but I think most NHS eye clinics have them. 😊

[Trish_GlaucomaUK Partner]

Hello. If another Visual field test was done at your latest appointment, it could have shown more progression, as they check them against the previous VFT.

If you have been told that any form of operation would cause more sight loss, this would normally indicate that the glaucoma is advanced with little vision. Although you have NTG, where the eye pressure is well within the range of 10mmHg to 21mmHg, damage can still occur. There are no 2 people the same. Someone may have a pressure of 10mmHg and everything is stable, with no progression, whereas another person may have the same eye pressure, but progression is still happening and it needs to be even lower.

Also remember, you are entitled to a 2nd opinion. This can be done by either seeing someone privately, or asking your GP to refer you to a preferred NHS eye clinic. There is normally a 2-3 month waiting time for appointments, but the waiting time is longer due to the pandemic and the backlog of cancelled appointments.

[charles555 in reply to Trish_GlaucomaUK]

thanks. Yes my glaucoma is advanced so that is the reason, I think, the doc said he doesn't consider an op. To complicate the matter, I have a thin cornea, and strong myopia. I think this is a bad combination when u r considering an op. Am I right?

it is true everyone is different. My 12 or 11 IOP are still , maybe, too high. My previous doc said with eye drops, it is possible to make them single digits. the new doc is not so sure, it seems.

[Trish_GlaucomaUK Partner in reply to charles555]

I think it is more that the glaucoma is advanced in that eye. Any form of surgery can affect the vision even more, so sometimes, it is best left alone and try to maintain the vision you have in that eye. Drops alone can not always bring the pressure down as low as a consultant wants, and this is when they would consider laser (normally SLT - Selective Laser Trabeculoplasty) or surgery - Trabeculectomy. They may look into offering you further treatment for the other eye, if it isnt so badly affected. I know with the pandemic, alot of appointments were cancelled and delayed, which may have been the case with yourself. But if not, NTG is slow progressive, the deterioration should have been detected when you were seeing your previously consultant, so its surprising that this was not acted upon, or picked up sooner.

[Efabear]

Not sure if you've watched any of the Glaucoma UK webinars or not. The recent one about surgery gave a more positive message about surgical options stating there is always something else they can do. May help to rebalanced the sense of hopelessness this new specialist left you feeling. I'm no expert and still fairly new to all of this, but I'd suggest you ask your new specialist exactly what the evidence is for his dispondance and get him to be more specific. If it's any constellation my consultant told me as patients go he was really worried about me but at the next appoint he was much more upbeat as they had got my pressures down. My right eye on VFT is almost all blacked out, but they are definitely still thinking surgery is a good option.

[Longwalks3]

Hi Charles555, I too have advanced glaucoma and extensive damage to my VFs (I am no longer allowed to drive). I think lack of continuity of care is a big problem for complex glaucoma patients within the NHS. In fact I became so worried about the fact that I was seeing different doctors all the time and there seemed to be no overall plan for my care that in late 2019 I took the decision to ask for a private referral to a consultant in Birmingham. I have been with him ever since and he has carried out about 9 surgical procedures in the last 3 years. I honestly think that if there had been better continuity of care in the oeriod 2005 - 2019 many of these operations would not have been needed. However, I am where I am and I still have usable vision and I am very thankful for that. I have to say though that I feel the NHS let me down and I should not have had to spend thousands of pounds of my own money on private surgery.

[balacakkhu]

Hello Charles555, There are a few things to consider collectivelly for glaucoma - pressure, visual field, general condition of the eye . e.g the pressure is low but the visual field is not good or the general condition of eye is not good etc... There are options for the glaucoma management medical (non-surgical) or surgical (operation or laser). Each and every treatment has their own side effects and complications. The eye consultants also have their own preference or own opinion which may be varied. The best thing is discuss throughly with the consultant and ask any question which you are concerned about it. The glaucoma management ..... the long journey ...... with best wishes.