Looking for others with neovascular proliferation in eyes

Hey David: Yes I had vision issues since March 2016, having spots like migraine aura, I was diagnosed in June 2016 and by then I was no longer having vision issues. Then in December I (temporarily) lost vision in my left eye, symptoms were not like the ones earlier in the year and had more in common with retinal detactment symptoms : floaters, followed by increasing blurriness and vision loss gradually over a week...there is another full post on this forum somewhere about that.  This led to the neovascular proliferation diagnosis.

Yes, I have been under treatment by retinal specialist since Jan 2017, for a time the bleeds got better now they are getting worse. I dont know if I will lose some of my sight permanently and the docs here are not very forthcoming, I learned of the seriousness of my condition by google search on the terms they used in the medical report for my insurance.

The initial neovascularisation was certainly CML related, but the first set of injections in March 2017 should have fixed that. I wonder if the new bleed might be more medication related.

How were you treated for your eye issues? and where?

Hello Eva,

I also have had multiple eye issues directly related to CML while on Sprycel.  I woke up in the middle of the night in extreme pain and any light was very painful. After an emergency meeting  with my opthalmologist and retinal specialist,  their diagnosis was retinal hemorrhages, iritis and neovascularization consistent with ocular ischemic syndrome. Treatments were multiple anti-vascular endothelial growth factor intraocular injections and panretinal photocoagulation sessions. If not treated as quickly by these doctors I would have lost some if not all sight in the affected eye.

I'm stable now but have lost some sight as the treatments stopped the progress of my eye disease but could not overcome the damage already in place. My night vision has also been affected.

Good luck to you, I hope your eye issues stabilize.

Hi all, bit of an update from me:

Had 3 sessions of the PRP lasering done on both eyes. Bleeding into the right eye was to the point that I couldn't see out of that one for the most part, however the bleeding into the left eye flipflopped between not much interference and a moderate amount. Between the two, couldn't really see if someone was in front of me at some points.

No real noticeable downgrades to the vision as a result of the PRP though, although I assume a large portion of my extramacular retina is now gone. Had a very strong reaction to the lasering - the reduction in VEGF (Vascular endothelial growth factor) being produced meant that the blood vessels that had grown on the surface of the retina started to shrink rapidly, so I was now experiencing bleeding as a result of the shrinking vessels being torn by their attachment to the vitreous as opposed to them leaking on their own.

I've had a vitrectomy under General anaesthetic in both eyes, including more lasering and a fibrovascular membrane delamination to remove the traction between the vitreous and the shrinking blood vessels.

The first operation (right eye) went without complications, however a week afterwards the traction in the left eye caused a large amount of vision loss and a retinal detachment in the centre of my vision in the left eye. Subsequently the operation for the left eye was pulled forwards.

Now 10 weeks post-op in the right eye. Vision effectively back to normal in that one, no bleeds/floaters/noticeable loss of vision (however there may be reduced night vision but clearly difficult to quantify this).

8 weeks post-op in the left eye. Definite reduced vision as a result of the retinal detachment, can see out of the eye but finer detail (i.e. reading anything less than about a font size 36) can be tricky.

Overall can now see and operate as I was before, with a large reliance on the right eye for clear vision, however can use the left for extra peripheral vision / field of vision and to assist with depth perception.

Was unlucky that the retina detached in the left eye when it did, otherwise likely I would have had decent vision back in both eyes.

On speaking with my Haematology consultant, having had a lot of tests for infection markers etc. come back negative, it is likely that when my WBC level was high (291) at the start of the year, this led to a blockage in the finer blood vessels in the eye, which then started this whole cascade of events.

I mentioned eye issues right from the start to the Haematology team, and did get a referral to Opthalmology a few months later when they persisted, however for anyone recently diagnosed with high WBC, it could be advisable to have an eye scan to check for neovascular growth, to catch it in a much earlier state than I did.