sight loss

[klazien]

Besides Cerebellar Ataxia I have also got severe damage to my optic nerves and am almost blind. The Fedorov Clinic might help but has anybody ever heard about them? Are they reliable? I don't trust anything that sounds too good.

[wobblybee]

🤔 Would you be prepared to travel to Germany..I have problems myself, and have thought about contacting Moorfields Eye Hospital in London..

I’ve had Iritis/Uveitis, surgery for double vision ..currently I cope with Oscillopsia and potentially Cataracts.

In the past I’ve had good treatment locally, but am now on a waiting list to be referred back to a Specialist.

🙂 You could always contact them to explain your condition..

When Fedorov Restoration Therapy is Not Recommended

Fedorov Restoration Therapy is not recommended for vision loss caused by:

Cataract or pathology of cornea

Age-related diminished ability to focus on near objects (presbyopia)

Astigmatism or hyperopia

Visual impairments caused by retinal bleedings or detachment

Vision deterioration due to diabetic retinopathy

Blindness or light perception

[klazien in reply to wobblybee]

I was diagnosed with Normal Tension Glaucoma in 2000 in an eye hospital in Hereford and a London ophthalmic Neurologist in the London Ataxia Centre saw the beginning of Ritinitus Pigmentosa in 2016 or 17. Then Moorfield in London saw no Glaucoma. People at the Ataxia centre in London laughed about that.

The eye-hospital, Glaucoma section, in Bridgend (Wales), where I see somebody on a yearly basis to check the deterioration, said it could not be Ritinitus Pigmentosa since that should be all over. They are Glaucoma specialist so maybe don’t know about this.

A visit to Germany is possible but I am a bit reluctant to spend a lot of money on something that does not work anyway and traveling with my severe Ataxia will be difficult. I can still see something but am 76 years old, so is it worth it?

[wobblybee in reply to klazien]

It doesn’t help when Specialists have differing opinions...I’m in a similar situation, my history of eye problems may mean I’m not a suitable candidate for Cataract Surgery. it could actually worsen my sight. But I haven’t as yet had a second opinion.I’d be in two minds myself re this new therapy....Overall, I foresee it being very expensive, and there’s no guarantee .. But on the other hand, it could actually be the answer..

I imagine they would need your medical records to date to confirm you’re a suitable candidate for the therapy ...either that or a face to face consultation..

[SueMillman Partner Ataxia UK]

For any treatment to be effective and judged legitimate it needs to have been researched and evaluated. This page indicates that some peer reviewed research papers have been published, and also suggests that aspects of the treatment (or a previous version of it) have been approved by the German authorities. restorevisionclinic.com/fed.... However, if you are seriously thinking of proceeding I would strongly recommend that you investigate further to make sure that the treatment you will have is properly researched and approved. You could discuss it with your GP or a consultant. If you need help from Ataxia UK please get in touch with me. [e-mail]

[klazien in reply to SueMillman]

Thank you, I will look further.