Hi,
This is my first post. I have had imbalance problems for nearly 3 years. I believe that there is a link between vestibular neuronitis and MAV from reading other stories. I’m 40 with two children under age of 7.
The VN came after a myringoplasty (a small op to repair a tear in my ear drum) this was a result of welding, some weld jumped in my ear and causing the trauma…ouch! I had many ear infections until the operation. Two years after the trauma I got VN , had a miserable life suffering with this for two years until i pushed to find more answers. My ENT just didnt know why i wasnt getting better. I live in North East England and the knowledge of Vestibular problems is little. I eventually got diagnosed with MAV after travelling to University London hospital. I was Ioathed to take medication but the Neurologist explained it was the best way to go. I am now experimenting with drugs (prescription!) to try and improve my quality of life . I have had VN and MAV together so been quite ill, despite this I have continued to work in the hope I would compensate but the MAV has stopped this happening I believe because my brain just can’t get a rest. So after more than two years without Meds I have started on Propananol, originally this was a miracle and meant I could do everything I used to do but unfortunately when my body became used to it it, it ceased working. I now have Amitriptyline and Pregablin to try but will create another post about this as I don’t want cram 3 years into couple of paragraphs.
I want to add that this forum has some of the most informative, useful and uplifting posts out of all groups I have been in and read. Keep up the good work!!
Gosh what rotten luck.
The operation could have affected you. The eardrum is linked to a set of bones in the middle ear that if pushed too far could have penetrated and torn the oval window of your inner ear. One of these bones rests on the window. I suspect mine started with a similar injury. It might be worth discussing with your ENT if you should check these bones with a CT scan or a low risk exploratory surgery.
I doubt it’s VN. That’s a very old fashioned diagnosis. It’s probably due to leakage from a fistula caused by the trauma. I have a similar lesion. My problems started after pointing shower into my ear with the stupid assumption that it might clear some wax. In reality it probably pushed my middle ear bones into my inner ear window. I had severe imbalance and nausea for the next 5 weeks and then most of my symptoms ceased apart from waking up each morning with a feeling of fluid somewhere in my ear. That leak has reduced significantly but I still have the feeling of some small amount of fluid in my ear most mornings. 5 months later symptoms returned with a vengeance. I was originally told I had MAV but have since been assured I have Secondary Hydrops. After extensive research it is now clear to me these are the same thing.
MAV is probably Secondary Hydrops. This condition is well known to occur as a fistula heals. The chronic leakage from the inner ear messes up the balance of perilymph and endolymph. As the perilymph space shrinks you start to get tinnitus and balance problems.
Do not believe anyone who tells you you have a ‘migraine caused imbalance’. That’s just rubbish. The cause of your problem is clear.
I would be very cross with the original surgeon but at this stage your best bet may be to wait and see if this all settles down. But it can take years.
Amitriptyline is a good drug to help you reduce symptoms. It really helped me.
Take a look at this:
All the best, and keep us posted.
James.
Thanks James.
I had had a series of severe vertigo episodes prior to the operation although they became more frequent after the operation. Then one day three years ago I felt imbalance and nausea and it never went away.
On this basis I don’t think I can blame the surgeon (my family do) as I had these vertigo episodes prior to the Operation and the surgeon said that he did not need to go near the inner ear to perform the op although granted there isn’t a lot of room between the two. Anyway I am where I am.
I never had tinnitus until two months ago and now i have it constantly. This condition just seems to keep changing.
The neurologist mentioned Hydrops to me also but as you know most of the diagnosis is theory or ruling out other conditions.
I have never felt the sensation of fluid in the ear but will read the article you linked as anything is possible.
I note you comment on Amitriptyline and have made another post about this.
Thanks again
Rob
Oh oh. My apologies. I read your post incorrectly. The first dizziness was after the welding accident? What crazy bad luck!
This may be linked. If you had a tear already the operation well have made it worse. Some people have congenital weakness there too. In anycase it’s supposed to be one of the thinnest membranes in the body!!
So the welding incident probably did more than damage your ear drum.
It is a shame the surgeon didn’t check your inner ear windows at the same time given your history of imbalance. I think you can blame him for that. You don’t get dizziness from a hole in your ear drum! What was he thinking?
The surgical repair of fistulas is very unreliable though and it’s thought that it’s best to leave the body to heal it. This is controversial. They are so rarely caught that there is no conclusive evidence on which path is best.