New - A care giver.

Hi everyone! My husband’s story is a little long, but I have recently found out about VM and wonder if he has it.
Hear me out. Husband had the FLU in 1995. High temp. Afterwards went to work and was dizzy all the time. GP said nothing is wrong. 1 year later finally get to see an ENT and have testing at Mass Eye & Ear Boston. Diagnosed with Labyrinthitis. Had Gentamicin injection and recovered. Worked 20 years. 2015 had leg surgery to repair a Popliteal artery. Surgery is quite invasive as the artery is centered in the leg below the knee. Afterward he had trouble walking and off balance. Back to Boston to see Steven Rauch and he told us the leg surgery probably damaged some nerves and input reduced as to balance. Very common in leg, hip and knee surgery but they don’t say anything about it. Urged my husband to move! Help his balance system adjust. He did well for awhile but received SS disabilty due to his med problems and type of work - which he can not do safely any longer. He was crushed mentally and fell into a bad depression. He stopped trying to get out and just stayed home. Very inactive for a few months. Now he has constant dizziness. Of course I thought that it was from not moving, he is (was) deconditioned. He is now going to Boston for Vestibular Rehab. The the PT came highly recommended and I know she is trying her best, but we are not seeing much progress. So, sometimes my husband has very strange episodes where he does not have a headache but is very tired, nausea, feels like he has the flu, very achy. Sometimes he has diarrhea. It seems like it is for no reason at all. He was already checked out by a gastro doctor. He could find nothing. Other times he does get headaches, always calls them sinus type, but I have read these “Sinus Headaches” may really be migraines. He has the most miserable life right now, never feeling well. I told him if things don’t improve we wiil go back to Boston and ask about VM. Does this sound totally off base to anyone?


And welcome despite the circumstances that have brought you here. If it’s any consolation all sounds pretty much parr for the course. Could well be MAV. no medics on this site. Support group only. Suggest you get husband to see neuro-otologist or neurologist specialising in MAV. Geographically, you are well placed if you hv access to Dr Raunch. He’s knowledgeable on MAV. You’ll find alot of info under the Welcome section on this site, some written by him.

MAV is little understood by many, even unknowledged by many, medics even but from yr script don’t imagine you wiil have much trouble getting yr head around it. You are already halfways there it seems to me and that alone will assist yr Hubbie tremendously.

Lots of plp develop MAV following some sort of trauma, sometimes long afterwards. I’ve read about plp having balance problems after hip operations etc. Kidda of makes sense when you think about it as you very obviously have already. Again the worse thing plp can do is to give up trying, reduce activity and stay indoors/at home. It’s also the most common and natural thing to do. Everybody does it. As you say he’s become deconditioned, with MAV the term used generally is decompensated but it’s the same thing realky. Obviously he has to stay safe but depending on how well he is try to encourage him to get outside and walk about a bit each day. Use a walking stick if necessary and if he’s light sensitive, brimmed hat, dark glasses, maybe avoid the brightest summer sun, and any sudden change in light, contrast dark shade and bright sun can be as bad if not worse than straight sun for some people. Easiest walking to start-is straight, level ground, preferably tarmac/concrete rather than grass.

Opinions vary on VRT. VRT can make uncontrolled hence unstable MAV far worse. Too challenging. Introduced at the right time in the recovery period maybe. MAV often tends to be triggered by various stimuli, like red wine may give a migraineur an attack, VRT can be a stimulus and bring on an attack.

Try to see a specialist as soon as you can. Making a list of questions to take with you helps and don’t forget to ask about the VRT. Good luck.

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Thank you for your input.