Tersons syndrome following a sub arachnoid haemhorage

[Kathykathy]

Has anyone had Tersons Syndrome following sah would like info my medics seem to know nothing

[Kirk5w7]

Sorry Kathy had never heard of this but a quick google brought up lots of info.

Whoever diagnosed this should be able to refer/ point you in the right direction.

I would think the ophthalmology department at the hospital would be involved.

Janet xxx

[cat3]

I Agree with Janet. Ask your consultant for a referral to the resident opthamology team. But really, I would've thought any neuro specialist should be familiar with this issue.

Were you treated at a specialst hospital Kathy ?

[Kathykathy]

Thank you to the ladies who replied but I've been involved with a number of consultants nhs and privately and apparently a rare condition with little data due to the fact most people don't survive a ruptured annuerism and those who go on to Tersons even fewer survive. I've looked at the internet to be told what I already know and it does not go into details of future prognosis or deterioration merely the mechanics of what caused it and I know that only too well. It was for this reason of frustration and fear of deterioration of sight that I wanted a wider forum to see if anyone else had tersons and share their knowledge given to them via their medics.

[ktie]

I had my SAH in 2010 and suffer from Tersons Syndrome. I have been seen by many eye specialists and they have decided to watch and wait. My vision did improve over the first 2/3 years as the blood dispersed but now I have learned to live with what I have. Luckily it is only in one eye. There is a procedure to rectify the situation but I have been advised that for me the negatives outweigh the positives at the moment.

[Kathykathy in reply to ktie]

Thank you for your reply it sounds like any blood deposits were left to disburse in your case, it happened in both my eyes quite badly and ive had 2 eye ops to remove blood clots I'm partially sighted now and lots of sight distortions and retinal and field vision loses but seem like me to get no info from medics and wait and see as they just don't get enough people surviving hope you improve thanks for answering

[Kathykathy in reply to Kathykathy]

You made a claim that there is an op to rectify the situation I am unaware that is true are you meaning the op to remove the blood from the eyes which is just that and does not solve Tersons.

[ktie]

you are correct - sorry I did not explain myself clearly. I am left with vision that is like seeing through a thick black net curtain. My vision changes depending on the light sources I am in. Bright daylight is the worst situation and I have found wearing dark sunglasses can make it easier for me. Reading is now difficult due to the words and the black spots in my eyes merging :). BUT I am alive and functioning. Hope you get some more helpful answers to your queries.

[magdolna]

Hello! Yes I did and I was referred to eye doctor as part of my treatment. The blood in my eye not disperse and so last month, which was 15 months after the SAH, the eye doctor did an operation called a vitrectomy and ERM peel, under a general anaesthetic. Now my vision is more clear with a hint of a haze in the eye but loads better!

I think I was blessed with having my treatment, (coiling) at Edinburgh and then Aberdeen where there is a good neurology team.

[Kathykathy in reply to magdolna]

Thanks for reply yes I've had 2 vitrectomies which only removes the blood I'm left with retinal damage as well as the issues of brain to eyes messages with field vision loss too seemingly all from Tersons which was a result of excess pressure in brain from ruptured anuerism. All aspects of sight and focus affected with alot if visual distortions. Im glad yours seems to be more of a success I can't now drive and am registered partially sighted are you. Have you been given any prognosis?

[magdolna in reply to Kathykathy]

I am not partially sighted and can drive. The doctor said that operation has a 50/50 chance of success. Before operation the sight in the right eye was obscured by blob of floating blood but that has gone now and I am left with a slight haze which is a lot better. My left eye was not affected. I will see the surgeon in a couple of months post operation and hopefully after that I can forget about it and get some new specs.

The bleed which I had went onto brain and into spine which has given me nerve pain which is the most troublesome thing for me. The neurosurgeon said it will take two years to get better.

[sealiphone]

I found this:

"In subarachnoid hemorrhage, 13% of patients have Terson's syndrome", in my opinion that's not rare.

[Kathykathy]

I guess it depends what rate in % terms equates to. All I know is speaking to 2 opthalmic surgeons, several opticians, medical staff in hospital, several Consultants within a world seminar, a representative of Headway, medics in private health insurers given the task of researching it, the internet etc. Have all come up with nothing. I personally don't care if it has a tag of being rare or not I just need prognosis for my future with it, deterioration rates, and whether any treatment. All ive found or been told us why it happened. So if you find any answers to those questions ud be pleased.. Thank you for your comment.

[sealiphone in reply to Kathykathy]

I believe that equates to around 600 patient per year in the UK.

[Kathykathy]

Shame they are not all in here then to pass on their experiences ha ha not sure where you are getting such finite statistics to quote, polls are very variable, but lets hope rather than spurious numbers some of those people with the experiences come forward, help and knowledge is what I need now