Dr's response to question "has my shunt clogged'?

I have a really well recognized and respected doctor whom I have been seeing for 11 years now with the beginning of 'hearing loss--suddenly' and followed by 'cochlear hydrops' and have taken Prednisone (until recently last year's bad b/p spiking due to it) so don't take it anymore. He's a neuro-ent and connected with a teaching hospital here in the midwest. Specializes in the treatment of Meniere's.

Also have taken Meclizine (when I had vertigo--the only thing that stopped it) and Valium, and finally had the Endolymphatic shunt surgery in 2012. I've reported this 'here-often'.

I have felt soooo badly this last year and gotten worse the last few months--with the head pressure/feeling like a vertigo was 'about to happen' but thankfully it hasn't. And I've had my hearing checked--bought new 'very state of the art' hearing aids' as my hearing is very bad in respect to music/loud places/ crowds and TV programs--use closed caption all the time.

So, even though I've asked my doctor, everytime about something going wrong with my 'shunt' causing this, I decided to do so one more time and he assured me it would not!
So this time I sent him some info from the Michigan Hearing institute--that I had found in researching this, and sent to him on a patient portal--showing him that these doctors there say the shunt can leak--and fail in some patients.

My doctors' response--was "if my shunt had clogged--I'd have vertigo"--and as I've said--I have not had a single attack since the surgery!
So, he said " he had no other recommended treatment at this time."

So I just have to feel this 'lousy' on a daily basis (some days are more tolerable than others) and I don't 'give in' and become reclusive--but some days, when we have plans it's all I can do to 'make it happen'!

I've tried the anti-virals as recommended by Dr. Gacek--didn't help. Have tried Valium--no help either. The only thing that helps is low dose Xanax--and I try to not take it, 'only when necessary' for the anxiety this causes.

So--I hope I don't get a vertigo attack--but to always feel like one is 'imminent' when this is bad--is not good either.

Just sounding off--and now I need to get 'busy' to keep the 'brain fog' from setting in! Thanks for listening.

 

Interesting that you replied just after I read a response from my doctor on the patient portal. He said he certainly would 'not discourage' my getting a 2nd opinion if I wanted to do that. I did that a few years back--when this all started--and was told my symptoms were not 'meniere's' but probably neurological. I went to a Neuro doctor--and he was going to order a balance test and other tests and when I checked by with my current doctor--he said I didn't need those because had I needed them, he would have done them.
So--I cancelled the tests. Did get prescribed a mild anti-depressant and was diagnosed with 'silent migraine'--all the symptoms of migraine without the pain.
Made sense to me--but I couldn't tolerate the meds. So, he suggested my getting more physical activity into my life--which I was doing but did increase it after talking to him.
However, the symptoms over the last year have worsened a great deal and returned to this Neurologist, who--after looking at head and back x rays, thought I might have a spinal fluid leak--so I had a 'blood patch' done--and that was 'no fun' but didn't help a bit.
I see this Neuro doctor again soon--after the first of the year--and we'll talk further about all this.
I thanked my Ent for encouraging me to get a 2nd opinion and told him right now I was not going to--thinking I still see my Neuro doctor soon--and want his opinion too.
If he thinks I need to get another Ent opinion--I will probably do so. I really feel like the shunt is clogged--and even without vertigo-it's causing these problems--and nothing can be done to stop it. At least nothing I can imagine--but I had hoped my doctor would know of something. He doesn't think the symptoms are from the shunt--as I mentioned--he feels I'd have vertigo if they were. I don't--not yet anyway. But as I said--soooo close at times it's scary.

Anyway--that's where I am--in a 'holding pattern' to see what the Neuro doctor says and see if things improve on their own and just 'deal with it' until then.

 

Truthfully, I don't feel 'quite' like that! I've had some really caring doctors in my life--and still do--but you are so right about the feeling we get when they just don't seem to 'get it' when the treatment isn't helping or we suggest something we 'read about'.

My primary is very 'open' to listening and has tried various meds, etc. or even tests over the years for problems that I would have--and before him was the very 'best doctor' we every had.

Hands on--greeting you at the door of his office--taking you into his actual personal office after a thorough exam--and talking to you--getting to know you personally. When he retired we really lost a good friend and doctor. Our primary now is very good--just overloaded with patients and rarely 'examines us' just talks to us--does b/p check and listens to our heart, etc. No 'on the table' exam 'ever'! I should say--rarely. Probably done one on me 4 times if that many in 26 years! Just orders tests if a problem is reported.

But---will send me to whomever he feels I need if something he doesn't treat indicates I need another doctor.
My Cardiologist is very attentive--takes calls--well--nurse calls right back and patient portal messages are really the best way to communicate and get answers within 24 hours. New doctors of late due to unexpected health issues and I like all 3 of the doctors but
they are not addressing the Meniere's issue--but other issues and most have turned out ok after many tests, blood work, etc.

So, I may consider a 2nd opinion next year--if I continue to deal with this--and will certainly let the folks here know if anything new is offered. Thanks for the attention and advise!