What am I supposed to do - desperate!
 

Hi guys,

Well I havent been writing much on here lately, but I have hit a little snag in the last couple of weeks, which has thrown everything off and I just don't know what to do! :(

Basically, a week or two ago, I noticed some problems with the vision in my right eye, so I went to get it checked out at the medical school here. After some serious testing and consultations with retina specialists, I have been told I have a rare eye condition called myopic choroidal neovascularisation (basically bleeding behind the retina), which can progress to legal blindness rapidly in young people (i'm only 27!) in the affected eye. Now I must say that it looks as though I have gotten away with it because there is no more bleeding and it looks as though mine has spontaneously resolved itself, leaving a big arse scar behind, but I am not at all confident in my retina specialist (who is probably the best SA has to offer) and I just feel totally lost right now. I dont even know if I am sure of the diagnosis reading around.

All I want to do is get on the next plane and get it checked out at Moorefields as I just cant take any chances with this and MUST get the best advice around. Because of my occupation (scientist), I am aware of a big research group based at Moorefields who publish regularly on this condition and I think my best bet is to see these guys. What do you all think? I have e-mailed them to see what my options are, but I dont care, I'll go private if I have to. What are my NHS options? I CANNOT afford to go all over the place in the US (so please do not suggest that!). It's one thing having a serious illness, it's an entirely different matter when you have debt too. Should I just quit here and get the care I need back home (I'm 100% prepared to do that)?

I just need some advice here. My fiancee is shitting herself with worry in the UK and I'm only just about keeping it together here. I've been having a great time until this. Just when you think everything is fine and dandy.

Thanks in advance!

Re: What am I supposed to do - desperate!
 

I'm sorry to hear about your bad news. While you're a resident in the US you are only entitled to emergency treatment on the NHS. Once you become a UK resident you are entitled to full NHS care.

Take a look at this there is a section about NHS cover for people returning to the UK.

http://britishexpats.com/forum/showthread.php?t=313047

Re: What am I supposed to do - desperate!
 

oh dukey, i'm so sorry to read all this :(

i went to moorefields yrs ago when i had shingles on the back of my eyeball and nearly lost my sight in that eye. they were brill and saved me from going blind.

yes i'd be right on that plane back home for sure as long as it's ok to fly with your eye condition....the pressure and all that.
you can always sign on at the local NHS GP as a private patient and pay..it's pennies compared to here. sounds like you may be incontact with some of the team at moorefields and like you said if you have to go private then so be it, can't take the risk with eyesight. tons of good luck :thumbup:

Re: What am I supposed to do - desperate!
 

Sorry to hear about your problem, I second the above, do check about the aircraft pressure then go back and see what they can do - from what I can see those docs are pretty accommodating.

Re: What am I supposed to do - desperate!
 

Yeh I knew this. Looking in to it more, it seems that it is up to the hospital to determine whether or not you have to pay and it seems that some may ask, others may not. I do have a residency in the UK that I can used and do have access to a GP so in theory, I could get around it, but I really dont want to cheat the system and understand the reasons why the NHS does this. God I miss the NHS right now! (never thought I'd say that!)

Re: What am I supposed to do - desperate!
 

Gawd bless it, and centres of excellence like Moorfields are world class.

Re: What am I supposed to do - desperate!
 

If you'vr paid NI into the Uk system thats not cheating anything IMO

I would check up on pressures and get my arse over pronto

Re: What am I supposed to do - desperate!
 

Thanks guy's, I think you have helped me make my mind up on this one. I will wait and see what this team says (hopefully by the end of this week) and then get a flight back ASAP. Pressure isnt an issue, but I wll double check with my specialist as well as get a copy of all my tests and notes to take back with me.

What a f**king nightmare!

Re: What am I supposed to do - desperate!
 

it is, but we are lucky to have moorefields .....take care and good luck :)

Re: What am I supposed to do - desperate!
 

I think they are now closing loopholes and checking NHS claims with the Inland Revenue. If you have notified the IR that you are not a resident of the UK the hospital can/will bill you. Have a word with Partystar I think she's back working for the NHS...if I remember correctly that's what she said a few weeks ago.

Re: What am I supposed to do - desperate!
 

Yeh I know they are revising the guidlines, but they have an exemption for UK students studying temporarily outside the UK and technically I could be classed as a student and am on a student visa so that might be an option. At the end of the day though, I don't really give a shit, they can charge me if they want. I would rather pay Moorefields then pay some arsehole here who has some shitty practice down the road and has no experience with this thing.

Re: What am I supposed to do - desperate!
 

You could be right...hope so. All the best...I hope you get it sorted out.

Re: What am I supposed to do - desperate!
 

Are you taking any medications (over the counter or prescribed), vitamins, supplements or herbal remedies of any sort? If you are, did you mention this during your appointments?

I mention this because a coworker's MIL is going blind and she went her regular doctor (maybe even a local specialist) and was told she had macular degeneration. Then, she went to a local eye center in my area where the cause of her failing eyesight is due to her medications. Basically, a side effect of one of her medications is possible blindness and that's exactly what's happened to her.

Re: What am I supposed to do - desperate!
 

No, but thanks for the comments. I wish it was that simple!

Re: What am I supposed to do - desperate!
 

My MIL went suddenly went blind on one eye. Went to her local Casualty Department in the morning, was immediately referred to Moorfields, admitted in the afternoon, and operated on the next morning, and her sight was restored.

I would hope that if someone hasn't been gone from the UK for too long - and especially someone on a student visa like the OP - it shouldn't be too difficult to re-establish residency.

Re: What am I supposed to do - desperate!
 

If for some reason you don't go back to England to sort out your problem you might want to check out the Baylor School of Medicine in Houston. They have some very good doctors there and are renown for their work on Macular Degeneration (I know that's not your problem).

Good luck with whatever you do.

Re: What am I supposed to do - desperate!
 

Thanks, I'll bear that in mind.

Re: What am I supposed to do - desperate!
 

IMHO I'd go home (as long as your Ok to fly), not only will you have Moorfields on your doorstep but you'll have your Girlfriends support as well as your family's, and they'll be there for you every step of the way...
Good luck and hope everything turns out OK.
karma sent

Re: What am I supposed to do - desperate!
 

Would you go for good, or just until you could get it sorted, one way or the other?

Re: What am I supposed to do - desperate!
 

Only you can decide that. Make a list of the pro's and con's of being a student here and whatever you'd be doing in the UK.

Re: What am I supposed to do - desperate!
 

I dont think I will go home for good as that is not what I want, but I think I need to go back for at least a couple of weeks to get a consultation and go from there. If it turns out to be something that needs long term management on a regular basis, then I would have to rethink it of course.

Thanks for the advice.

Re: What am I supposed to do - desperate!
 

http://www.visionrx.com/library/reso...thospitals.asp

This is a list of the best eye hospitals in the US. #15 is in Houston. The best on the list is part of Johns Hopkins in Baltimore. You might want to ask your specialists about the relative merits of one in the US vs. Moorfields.

That said, a great deal of your recovery and comfort on this is going to be with what you feel comfortable with. If you feel Moorfields is your best bet, then going anywhere else is always going to leave you with a 'what if' feeling, especially if the prognosis is less than 100%.

If you have your mind set on Moorfields (and there is nothing wrong with it--great place) I would encourage you to do one thing before you leave: get the best possible opinion you can over here. Consider it the 'second opinion' you get first.

The one other thing I'd recommend is trying to get ahold of someone, perhaps a specialist at Moorfields, and see if they have any recommendations as to who to talk to here in the US. It could be they met some people, or have co-authored some research, or perhaps had someone study with them or something. Might be worth seeing what they have to say before flying back and dealing with the NHS issue.

Re: What am I supposed to do - desperate!
 

That is exactly what I am doing. I will not go anywhere until I have spoken with some of the consultants there. I am hoping that they will take a lot at some of my images and then perhaps take it from there. I have of course heard of the John Hopkin centre but the cost can stack up here and that just isn't an option for me. I would much rather cut my losses here if I had too, it's crazy not too. Having said that, if I can get a good recommendation from someone in London, then I might consider it. But I think you touched on it though when you said it is what you feel comfortable with; I'm just not sure I trust most of the doctors here, for whatever reason.

Re: What am I supposed to do - desperate!
 

As an international student don't you have to have compulsory healthcare insurance? My daughter is a student in Canada and we have to purchase the university's insurance even though she is covered by our insurance.

Re: What am I supposed to do - desperate!
 

Er. OP is studying in the US and your daughter is studying in Canada. Different countries may have different rules.

Re: What am I supposed to do - desperate!
 

I know but it makes sense for international students to have healthcare insurance...but there again millions of USC's don't. :unsure:

Re: What am I supposed to do - desperate!
 

I searched for current clinical trials on your condition. I didn't find any trial searching for participants but I did find this-
http://clinicaltrials.gov/ct/show/NCT00345228?order=1

Have you looked for studies on the topic on Medline? If you found any, where are the researchers located? Any in TX?

Re: What am I supposed to do - desperate!
 

Almost every university in the US requires students to have healthcare, and many schools offer extremely low cost policies to their students.

Re: What am I supposed to do - desperate!
 

Now that makes sense. :thumbsup:

Re: What am I supposed to do - desperate!
 

It's the same reason Americans have problems with NHS doctors. They're all fully qualified, but you want someone who has an understanding of not only the medical conditions, but also the cultural issues that go into 'bedside manner' and some knowledge of your post-recovery options (i.e. a GP in your home town vs. whatever you would have in the US).

My wife and I left Hong Kong to have our child, not because we weren't getting good care from the medical staff we dealt with, but because we wanted to be 'back home' in an environment and culture we were used to. The last thing we wanted to deal with was 'reading between the lines' of a different health care system.

In the end, your own comfort level will be as important in the recovery as many of the other factors that go into your choice of hospital for this procedure.

Good luck with your decisions.

Re: What am I supposed to do - desperate!
 

Just to clarify, I am not strictly an international student (been there, done that). I am a post-doc fellow but over here we get treated as students, at least for admin purposes and for the most part we are on student or training visas (J1). So I work here full time and get paid accordingly. I also have health insurance, but even with that, I will still struggle if it begins to spiral which is what I fear really. I would not be classed as a student in the UK so the loophole is probably a stretch for me.

At the moment, the main issue is getting a clear diagnosis and if Moorefirelds didnt have probably the best CNV group in the world in conjunction with UCL, then I would look elsewhere. It's just luck that they are in London, my home town. The problem here in the US is that I cannot find many specialists that deal with this condition and even less that conduct research.

The problem for anyone that has looked is that this condition progresses rapidly and most people lose legal sight in the eye within 5 to 10 years, which poses much larger questions about my life here. However, my case is definately not typical which makes the diagnosis difficult and therefore the prognosis may be better. Like I said, I dont know what to do. I never expected to be dealing with this at my age or at this stage of my life and its just f**king scary!

Re: What am I supposed to do - desperate!
 

The NHS saved my kids' life many years ago and the same with my mother in law's condition same as yours. Godspeed and Good Luck.

Re: What am I supposed to do - desperate!
 

Good luck making a decision Dukey, I'm sure it must be a worrying time.

Re: What am I supposed to do - desperate!
 

I'm so sorry you're having to deal with this - it sounds so frightening. I can certainly see why being home, where you have support would be appealing. Best of luck in whatever you decide.

Re: What am I supposed to do - desperate!
 

reading between the lines i don't think you'll rest until you have had a consultation with a specialist at moorefields and the sooner the better imo for lots of reasons.

Re: What am I supposed to do - desperate!
 

Agreed. I think you'll also feel a lot more comforted knowing you have a support network there for you, rather than on the end of a telephone. It'll be more comforting for your loved ones too, having you there and being able to fuss over you and stuff.

Re: What am I supposed to do - desperate!
 

Well actually, I have received an e-mail from the guy I wanted to see at Moorefields and, as luck would have it, one of his close colleagues is at Texas Retina in Houston, so I have an appointment with him a week on Monday, which is great news. He has an excellent reputation and is a neovascular expert. I still may touch base with Moorefields when I am back for xmas, mainly for the future, but I am happy that I dont have to ship off back home right now.

I will keep you all updated and thanks a lot for all the kind comments and messages that you all have sent. It reallly does mean a lot.

Re: What am I supposed to do - desperate!
 

Glad to hear you're getting a 2nd opinion....

in all fairness there are a huge number of retinal specialists here in TX due to diabetic retinopathy because of the high incidence of Type II diabetes in the Hispanic population.

It's heartbreaking to sit in the waiting room and see how many people are affected.

Re: What am I supposed to do - desperate!
 

Good news...I hope it all goes well next week.

Re: What am I supposed to do - desperate!
 

well that is just too coincidental that the guy's colleague is working not to far from you! i'll be in blighty when you come to houston but wishing you well with your appointment :)