Hello - Am I glad I found this Foundation!
My best friend was diagnosed with an aneurysm last year after her vision in her right eye became distorted and tests were carried out. She had a platinum coil inserted and since then:-
the eyesight never recovered
she developed a brain swelling due to a "very rare reaction to the coils"
she had two courses of high dose steroids to reduce the swelling but this did not work
she was due another MRI when the sight in her left eye started to deteriorate (but in a different way to the right eye)
she took herself off to A & E (ER) and has been in hospital since last Thursday
she is on high dose steroids again as the brain swelling "has changed" and is affecting her optical nerves and her vision is rapidly getting worse. The doctors can't tell if this will be permanent - i.e to lose her sight in her "good" eye
she is waiting for a field vision test today and after that the consultants will review her again
Has anyone heard of this before? Any ideas of what can be done before she may become blind?
We are so worried and the doctors just don't seem to know what to do next. The steroids have not worked previously so why put her on them again?
If anyone has any comments or ideas, we'd be so grateful.
Thanks for your time.
Hi Julia...I was coiled a few months ago...I have my vision...other things are happening, but told they have to do with the fact I am still healing...However, everyone seems different with healing, etc.,
This is a great site...and I am sure you will get some good advice...
Me...will say a Little prayer for your friend...that the Doc's can help her out...
This is a long journey...! Colleen
Hi Julia -
I was coiled/stented over 3mos ago and haven't had problems other than the usual recovery issues (fatigue, headaches) - but am feeling pretty fine by now.
I'd just want to be sure that she's seen by a doctor who is an expert in these things - and if her doc isn't maybe find a way to consult with another doctor who is. You're obviously a good and caring friend, so I imagine you're doing computer research too - which is great.
Sending her really good wishes for a complete recovery.
Julia, I would recommend a Neuro opthamologist , I had severe double vision as a result of an aneurysm behind my right eye. A coordination of several doctor’s provided therapy that eventually corrected my vision. This was a process of a year and a half. Again I had additional coilings for less severe double vision a couple years later. I have had good vision at this point going on 3 years. Hopefully this could be helpful, best wishes.
I'm going to ask about a neuro opthalmologist -very helpful, thanks!
Sincere best wishes,
Thanks Jennifer, Her doctor is a very senior neurologist and she has a top radiologist too, it just seems strange that they don't seem to know the next step..
Sincere best wishes,
Thanks Colleen - this is all so helpful!
All prayers always appreciated and sent straight back to you,
Julia...you are a very special friend...
Many of us in recovery have vision issues...
I saw neuro-oph twice...before and after vision therapy to confirm results of my therapy...She will need a referral either from her oph or the neuro-specialists... I did not regain my upper right peripheral vision...
There's a tremendous amount of info on the 'net... you may want to research cranial nerves to help your friend form her questions to the neuros...the Optic (II) and Oculomotor (III) are main vision nerves and there are more on eye movement (typing off memory tripping)...There's terminology on vision disease/damage...i.e. hemianopia (sp?) and quadrantopia...and more... somewhere in research, various sites will provide related data...i.e. the middle cerebral artery relates to hemianopia... (terminology from my records...confirmation of MCA/hemianopia from major websites)
My med records note visual field deficits (L and R eyes) including hemianopia and quadrantopia...and, they, including the oph, did not refer me to a neuro-oph... I was also blessed by friends who asked their oph on their own visit, who told them I needed a neuro-oph; went back to my oph or the referral. If your friend gets the referral (presumably will), the neuro-oph will want/need her med records which will include the angios, etc a/w/a the written records.
My prayers to her and you...
P.S. when I mentioned I have difficulty with my thought process...I am slow in mentally connecting things...
Was her coiling done soon after testing/diagnosis a year ago? Had she had leaks/mini-ruptures?
I jabbered on my med records...of visual field defecits...did not mentally connect it to your statement of visual field testing.... which is also noted in my records.
The comment very rare reaction to the coils brings on more questions (I am so slow ....)
Did they explain / name, give terminology ... if reaction to platinum, or to a coating some coils have, or reaction to the contrast dye used during the angio?
You may want to view Cranial Nerves @ Yale...it has neat little diagrams w/diff nerves... (a picture w/words helps me to comprehend...or to hear/converse). The old sayings "a picture is worth a thousand words...and, a beautiful picture may not tell the full story"...
Were any stents implanted?
Do you know the name of the steroids...'cuz they can vary a bit...
Hopefully some of our thoughts from our experiences / records will help you / her in asking questions to her neuro-specialists...
Please keep us informed...
Thank you so much for all this information. I will print and re-read and research as you suggest. I will also try to find out more detailed information from her/her doctors (although she has said that she does not want to talk about it anymore until these steroids are finished (Tuesday) so I might not be back here just yet!
I'm particularly interested in this neuro-opthalmologist road as that is (at the moment) her main concern.
Once again, thank you SO MUCH, and please accept my best wishes and prayers, and I'll be back when I have more ...
Ironically, my memory jumped to another site of strong interest to me...
I have been doing a lot of research...Please just remember I am the non-degreed, non-licensed, non-professional...who likely may not interpret correctly...
Try www.merckmanuals.com and throw in your research terminology...i.e. Optic Nerve Disorders... can change words around...I am slow at memory...this is an excellent site... again, my personal opinion...