[SueS]

Unable to wear glasses after stem cell transplant

by SueS on Wed Jan 25, 2017 2:42 pm

This my first posting on here, just hoping someone can offer some help with my problem.

I was diagnosed in July 2013, had 7 cycles of treatment, then had a stem cell transplant in March 2014. I am now on lenalidomide (Revlimid) maintenance treatment and I have been in remission for 2 years with my paraprotein level (M-spike) at 1.9 g/l (0.19 g/dL) when it started at 25 g/l (2.5 g/dL). That is the good news.

Unfortunately, after the transplant I have had problems wearing glasses, I have worn glasses since I was a child with no problems at all. However, after the transplant I seem to have developed extra sensitivity around my ears. When I take my glasses off, I get discomfort around my ears and temples, even though the glasses are not touching my temples. That is why I am sure it is around the problem is around the ears. It is not the prescription because when I try glasses on with just glass in them, it is just the same.

In the last 2 years I have spent a fortune on 8 pairs of glasses trying to get it right, as I have cataracts in both eyes and floaters, I need to be able to wear them. At the moment I sit near the television and use a magnifying glass for books and papers rather than wear them, which is not a good idea apart from a waste of money.

No one seems to know what is causing it, the doctor at the eye hospital just said it could be nerve endings. All I want is to be able to put glasses on and forget there are there like I used to.

Sorry to ramble on but this is really stressing me out anyone has any advice or possible solutions, I would love to hear from you.

[lys2012]

Re: Unable to wear glasses after stem cell transplant

by lys2012 on Sat Jan 28, 2017 4:40 pm

Hi,

If you have cataracts, have you considered cataract surgery? You could have some of the eye issues dealt with and maybe not need your glasses as much. Or how about laser eye surgery or contacts?

[SueS]

Re: Unable to wear glasses after stem cell transplant

by SueS on Mon Jan 30, 2017 2:32 pm

Thanks for the ideas, but as I need two types of glasses, contacts are not practical. The cataracts are not affecting my sight bad enough at the moment to warrant surgery. My left eye has always been weak since I was a child, so don't know if laser eye surgery would be appropriate. Thanks for replying anyway.

[OD22]

Re: Unable to wear glasses after stem cell transplant

by OD22 on Sun Feb 05, 2017 12:45 pm

Are you sure you don't have lytic skull lesions in those locations?

How about avoiding the eyeglasses touching your temples (and ear area) with an around-the-head-borne device for reading, like the ones you sometimes see with magnifying glasses attached to them.

OR

A local skin anesthetic? OR try silicone sleeves over your eyeglass temples to cushion
contact (opticians or your local drug story may have). OR try wearing a soft headband and let the eyeglass temples rest on the headband to again cushion contact.

If you are going to continue with eyeglasses, make sure the lenses are made of the lightest material possible and that the bridge of the nose is fit properly to take some of pressure off your ears / temples.

It sounds like you have had symptoms for several years. If your symptoms are more recent or escalating, the diagnosis of giant cell arthritis should be entertained if you are over 50 years old.

[jrj001]

Re: Unable to wear glasses after stem cell transplant

by jrj001 on Mon Feb 06, 2017 9:26 am

I've needed to wear reading glasses for around the last 15 years. Ever since my autologous stem cell transplant in August, 2016, I haven't needed to wear reading glasses anymore! Go figure!

[OD22]

Re: Unable to wear glasses after stem cell transplant

by OD22 on Mon Feb 06, 2017 2:23 pm

jrj001,

It is likely that you have developed cataracts. Cataracts can cause a myopic shift in refraction. What this means is you become more near-sighted and no longer require a prescription to read, but at the same time, your distance vision becomes a bit blurrier. This shift is referred to as "second sight."

[jrj001]

Re: Unable to wear glasses after stem cell transplant

by jrj001 on Mon Feb 06, 2017 5:49 pm

OD22,

Thank you very much for your explanation. That makes a lot of sense and I guess it's time for an eye exam.

[dianaiad]

Re: Unable to wear glasses after stem cell transplant

by dianaiad on Mon Feb 13, 2017 12:34 am

Just before I was diagnosed in 2013, I had my every-other-year eye exam. I was told then that I was beginning to form cataracts, and had floaters, and that, yeah, I'm getting older and this sort of thing happens. I was also told that I would probably need cataract surgery in ten years or so.

Then I started treatment for the multiple myeloma.

Boy, I don't know if this is a normal side effect of the cyclophosphamide, Velcade, and dexamethasone (CyBorD) induction protocol, but by July of 2013 (three months into induction) my cataracts were so bad I could barely see anything at all. I had cataract surgery in August of that year.

Whooey! One of the best things I've ever done, frankly. I went from 20/400 to 20/15. My word, folks, the trees across the street have LEAVES on them! I swear, I can count the feathers on a flying eagle.

So I have to wear reading glasses. Big whoop. And no, cataract lenses don't cure floaters, but you do get used to those.

So, cataract surgery is NOT a disaster. Not even close; what a difference! My night vision is back!

I guess what I'm saying is, if cataract surgery is a possibility for you, go for it. You won't be sorry. I hope that you can figure out a way to wear your reading glasses in a way that won't put pressure on the sore spots, though.