I haven't posted for a while as I've had problems with my computer and all the data was wiped off and I couldn;t find this site when we got it sorted, but never mind I've found it now thanks to Mike.
To update you Mr. Jones has decided not to do the operation to replace the lens, pupil and iris as he feels its too risky and I may possible lose the sight in the eye (or possibly even the eye!!). At my last visit the pressure was up slightly and there was some inflammation present but once thats sorted we will talk about removing the cataract. I see him again on Monday.
I have been have trouble with my jaw (TMJ) and the oral surgeon was surprised I hadn't seen a reumatologist so he referred me to one who has done all the usual xrays and tests, I see him again on Monday (busy day, flitting from one hospital to another) for the results. The oral surgeon is doing a minor op. to realign my jaw and inject steroids into it so I am waiting for that to be done, hope it works as its a very p[ainful condition.
The contact lens I have been given isnt much use as it makes my eye very sore so I dont use it too much but I've found that the wrap around glasses recommended by Mike are brilliant, I think they are ugly but other people tell me that huge sunglasses are all the fashion at the moment. I'm off to Lapland at Christmas so will need them for the snow glare.
Sorry the contact lens didn't provide the relief you wanted. Was it ever remade in the right colour?
You sound hopeful about the treatment for your jaw and I hope it brings some relief.
I remember asking my glaucoma specialist about that proposed op for lens, pupil and iris and his response (combination of surprise and shock) and question, 'Where was I eading about such things?' When the cataract op is done, is there any IOL available that may alleviate the problems with your iris? Curious here. It doesn'nt seem beyond the bounds of possibility that an IOL could have the therapeutic capacity of that contact lens, but ignorance is ignorance!
Think you are inline for a great Christmas. Good thoughts for Monday's appointments.
Yes the lens was made in the right colour eventually. I dont know exactly what the cataract op entails in respect of replacing the lens but my main problem is the large holes in the iris which let in the light. The contact lens does cover these but iritates the eye too much and I tend to get a flare up when I've used it.
Mr Jones looked into the op for the full replacement and felt that at this stage it is too experimental. Its only been done once in Manchester and he wasnt the surgeon doing it. He feels the problem with inflammation is always going to be there and the new lens would possibly cause much more irritation. If it then had to be removed I would lose the sight in the eye completely andf possibly have to have the eye removed. I am not prepared to take such a risk until there is much more evidence available about the benefits of the op. and the risks involved.
I am now trying to accept the limitations having uveitis puts on my vision and trying to find ways to cope. As I said the sunglasses are good.
I had a good laugh on my birthday, my grandson bought me a handheld sudoku game (I enjoy the challange of doing puzzles) unfortunately I couldnt see the screen properly and the light on it was too bright. Matt said "thats ok grandma if you dont want it I'll have it!" so in effect he bought himself a present for my birthday! Never mind though its the thought that counts (or so I'm told).
Do you ever feel isolated with this condition? I dont know anyone (other than the people who post on these forum) who have this condition and I get a bit depressed about it.
Re: Hi there
Janet,
what is the cause of teh 'holes' in your Iris? this can be from pathological cause if it hasn't been mentioned to you previously often from a virus such as the herpes Sx virus and rarely from syphilis from my conversation with CSF on this topic as the question had been posed to me previously.
if it were Herpes related, then antivirals would be needed to prevent future outbreak.
The holes are caused by the herpes or shingles virus, we are not sure which as I've had lots of cold sores and also shingles but it doesnt really matter whcih as I'm told they are both related viruses. No one has mentioned anti-viral treatment but I will mention it when I see consultant tomorrow.
Re: Hi there
Janet,
here is a series of articles from the Ocular Immunology and Uveitis Foundation on the topic of herpes related uveitis. www.googlesyndicatedsearc...gle+Search
the primary reason to treat this with antiviral medications is that it can go to the retina and cause allot of havoc very quickly, even causing blindness. Acute Retinal Necrosis can occur. of course recurrent uveitis can also cause problems over time so antivirals would still be required to prevent this.
I smiled reading about your grandson and your birthday present. I had quite a hard time educating people about what I can and cannot see - a shop assistant told me about adult literacy classes once (don't say you can't read), so I can imagine it's even harder for children to grasp.
My treatment has involved infusions on the rheumatology ward and I've met a lot of lupus and RA sufferers, but no one with uveitis. Just like you, it's a lonely sort of disease for me. I think if my eye appointments were also NHS, then I'd probably meet others in the uveitis clinic. Most of my support comes from Cathy and Sheila who post on the main board and through blogs which we use to keep in touch on a daily basis.
Someone else posted a while back here whose partner is also treated by Mr Jones. Perhaps you've read her posts?
Hope tomorrow brings you some definite plans about dealing with your cataract.
The rhuematologists has said I've just got osteoarthritis and osteoporosis not anything more sinister, the blood test was negative for HLA B27. He is going to arrange some physio.
I saw Mr Jones and had a discussion about anti-viral drugs, he said he had considered it but ruled them out in my case. We again discussed having the lens,iris, pupil implant but both agreed it was too risky. The cataract is now at a stage where he thinks it will be to my advantage to have it removed and a lens implanted. So I am now on the waiting list for the op. He is hopeful that many of the visual problems (glare, blurring etc.) will be improved after the op so I hope this is the case. Unfortunately I am unlikely to have the op this side of Christmas, but I do now feel releived that things are moving.
Re: Hi there
Janet,
'Just got' made me smile. Osteoarthritis is a big deal for people who only have osteoartritis and here it is 'just.' Makes you feel really special doesn't it when you've got one huge heap of a disease and you can preface the new one with 'just.' Does this mean the physio makes the jaw realign itself?
Great that you're on the cataract list. Having it after your holiday is possibly a blessing. There are a few post op appointments and the number of drops that need to go in keeps you busy for a week or two. I could imagine you out in the snow or in a hot spring clock watching and fretting in case your eye flared in protest.
It would be lovely if you could have it done in the next week or two. Will Mr Jones do the op?
Just got!! I see what you mean about that phrase but the thought of AS or rheumatoid arthritis on top of all the other problems I've got was a big worry so just osteoathritis sums it all up.
Unfortunately I've had physio on my jaw and it didnt work so I still need the op to sort it out. I am seeing an oral/Fascio Maxillary surgeon for the jaw.
Mr Jones says h's doing the cataract op. but who knows with the NHS!
Janet,
My Prof said he would do my cataract surgery himself, but by the time that came around, additional surgery was needed as well and I got a retinal surgeon. The Ptof was very fussy about who would do the surgery, so in your shoes, with your eye, I'd be wary of who operates. You may find that Mr Jones is equally fussy and, NHS or not, it won't be any surgeon let lose on your eye.
I have osteoarthritis too! A big toe went numb and I thought this was to do with IMT. The rheumatologist told me a nerve was trapped and announced arthritis. I thought RA and believed we had the ideopathic out of the picture. He laughed and said we would be in big trouble if it was RA and then used your word, 'just' to preface osteo for exactly the same reason.
Hope you don't have a long wait for your jaw to be dealt with.
Maxine.
I'm the person Maxine mentioned earlier in this thread. My partner Stuart is treated by Mr Jones in Manchester. I've probably seen you around!
Hope your eyes are a bit more stable now. Stu's are OK, not brilliant at the moment. He's not getting the flare ups any more but they have told him to try and reduce the medication, but when he does that, the flare ups come back again and he experiences vision loss. He has to go back and have another angiogram in 2 weeks, followed by another appointment with Mr Jones. I think we could be on for another medication change.
Re: Hi there to Claire
Hi there Claire,
SAw Mr Jones monday, inflammation and pressure ok at the moment so we have decided to go ahead with cataract op. but I have to stay on present medication which is maxidex 2x daily and something for pressure 2x daily.
I like Mr Jones and trust what he says but sometimes he can be a bit dismissive if I suggest tryong other things. Although He does explain why he wont use the treatment I suggest.
I spoke to a relative who has recently had a cataract op. and he said I'll probably have to go to the centre at Withington or Wythenshaw (cant remeber which he said) and it would be unlikely that Mr Jones would do the op. This has unsettled me as I feel confidence in Mr Jones and am not sure about a different surgeon. I will discuss this when I have to go for pre-op exam.
How long has your partner had uveitis? Is there an undelining cause? I probably have seen you around the clinic, I usually go on a tuesday morning which is the uveitis clinic although this week it was changed to monday afternoon for some reason. Do you live close to Manchester, I am in Ashton.
Claire and Janet
Claire,
Nice to see you post again, although I wish the treatment was working for your partner. Any idea what might be tried next?
Janet,
I think the cataract centres might be for the relatively simple, straighforward ops for the 'old age' cataracts. I'd take comfort from the fact Mr Jones said he would do yours. Perhaps you could pin him down on this? Yours is also, to put it mildly, a unusual eye and he may not wish to pass over the opportunity to have a really good look inside it.
Hope you both meet up in the clinic and get the chance to swap stories!
Thanks for your posts. Janet I'm glad that you were seen and hope the pre-op goes well.
Stu normally goes to the uveitis clinic in Manchester on a Friday as they only take blood on Fridays (I think that is the reason anyway!). His eyes are still not right and I think he has decided to go to the emergency place at Manchester tomorrow and hopefully Mr Jones will see him in the clinic. He hates "gatecrashing" the clinic, but it needs to be sorted.
Stu has had uveitis since he was 21, he is 28 now. This was before I knew him, but it just came suddenly and he never had any health problems before. They have tested him for every underlying cause and have not come up with anything apart from genetic reasons, which I don't understand as nobody in his family has anything like this, but hey. The way we see it is, he has it and we don't know what has caused it but that doesn't change the fact that he has it, if you know what I mean? He manages it really well though although this last week he has been getting fed up as he has been taking all these drugs and they don't seem to be doing anything.
I like Mr Jones, Stuart trusts him completely and at the end of the day, Stu has the symptoms so I just go with what he wants. I've never found Mr Jones to be dismissive with new treatments but that's just my personal experience. To me, each case seems to be really different so I guess each one has to be treated differently.
Woah, sorry for the long post. Oh, we live in Stoke on Trent by the way! Bit of a trek to Manchester. Stu was living in Congleton when he was first referred to Manchester and has stayed there. It is a bit of a pain sometimes but it only takes 40 mins on the train from Stoke to Manchester, costs about £11 so it's not TOO bad...
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