A Thank You

Hello. I found this website in December after googling “MAV”. I want to say a BIG Thank You to those who began it and who keep it going. I’ve been reading what I can (vision issues) and it is incredibly helpful.

I will post my story in the proper thread sometime soon. (I have SCDS & MAV; have had multiple surgeries (from appendix to aneurysm {brain} + 3 for SCDS); I have PTSD, anxiety attacks, phases of depression; it’s a complicated story.) I still have many (well, only one symptom is actually gone due to the first SCDS surgery) of the same symptoms that started me on the road to the SCDS surgeries and thought I was losing my marbles because nothing was working/helping but it looks like, from reading here, that my main problem all along has been most likely MAV.

Thank you again for this site and to all those who have posted. Your stories are helping me immeasurably.

Sincerely,
Molly

Hi Molly,

Thanks for your post and glad the information here and people’s stories you’ve read have helped.

Scott :slight_smile:

Hi Molly,

You have really been through some very challenging times! I am glad you are finding the website useful.
Do you think you definitely had SCDS, or whether it could have been MAV all along? How are you getting on now?

Also a thank you to Scott from me. This is without doubt the most usefull place to seek information.
And when you are from Denmark were MAV is very unknown, this site is probably the best doktor you get ;O)

Hi. To answer your question, Beechleaf…

The CT scans did/do show very clear dehiscences and my tests were all positive for SCDS - ie, I had abnormal VEMPs, etc. Plus, I had/have autophony - I’m not sure yet if that is a SCDS specific symptom (I’m still reading all the things I printed off from this site) but if it is, then hearing my eyeballs move is one clear-cut indicator of SCDS. I also had one other very odd symptom - I could actually see my eyeball veins within my visual field when my heart beat - so, constantly. It was awful. That symptom disappeared after my first SCDS surgery (the craniotomy/mid-fossa approach). But, none of the other symptoms disappeared and I gained 3 new ones! :frowning: So, based on that and a highly respected ENTs recommendation, I had a revision surgery - a bit different approach but still a craniotomy. That surgery reduced the pulsatile tinnitus from a booming sound to a dull noise. I still had/have all the other symptoms…was thinking that I am the one person that the SCDS surgeries just didn’t help - for whatever reason. (I also had a PLF surgery on my other ear - total waste of time.)

I do still have the dehiscence in my right ear. I haven’t decided on surgery for that. I’m pretty tired of having surgeries in general but especially craniotomies. The recoveries are so difficult & long. And, now that I know that most of my symptoms are MAV related, I think that the surgery should be saved for if the SCDS specific symptoms get so bad that they run/ruin my life.

In reading the MAV Survival Guide and the post where the doctors answered questions - I see that I need to make lifestyle changes first and keep a record of how that goes for a few months. Then, I suppose medicine might be needed. I’m not sure - still learning about all this.

Right now I have symptoms every single day - they fluctuate depending on the weather, my activity & movement, noise, light, environmental triggers such as florescent lights, carpet or wallpaper patterns…etc. I have visual symptoms (oscillopsia - a shimmery kind plus the occasional pulsating kind), disequilibrium or rocking (like having sea legs on land), photophobia, phonophobia, multiple types of tinnitus, some hearing loss, brain fog, poor concentration, anxiety, headaches…plus autophony. I do have the occasional migraine - about 4-5 per year and I also have the occasional visual aura - about 2 per year. The MAV Survival Guide’s list of symptoms just about covers it! :slight_smile:

I think the main thing I feel right now is relief. I’m not a failure at SCDS surgery recovery or losing my mind because I still have all these symptoms…it’s a real disorder. And I’m not alone.

Molly