Have any Canadians out there had experience going to the House Ear Clinic? Cost? Worth it? Any chance/techniques of getting it covered by Canadian health insurance?
Also, any others - Americans or other international - (not just Canadians!) go without coverage? Besides the money question, I'm open to hearing any experiences with the House Clinic, good or bad!
Thanks Philosopher! Minor miracle over here in Calgary - I'm seeing Dr. Lange this Thursday! I'm thinking it scared them that my tinnitus is pulsatile again. But still good to hear your experience - back up plan, for sure. How's your health now?
Anne, there's a rel nice guy named Alex who lives in Montreal and went to House for a VNS. Not sure if he's registered on the new site yet, but I'm sure he'd be happy to answer your questions. P.S. I had my VNS done at House.
Hi chrisk I’m back! Had 3 good years, then last year hellish so I’m ready to be more aggressive and open to procedures. How was your vns experience at House? Any recommendations on which doctor to start with?
I made contact with the LA House Ear Clinic! While it will be out of pocket payment, the prices do not sound unreasonable to me. I’m gathering my medical records to send to them, and then they will do a phone consult with me. Awesome that I don’t have to travel for this first bit.
I live in LA and have gone to the House Ear Clinic for about 10 years under the direction of Dr. John House. We've tried all sorts of medication and because of normal VNG test, he is recommending the endolymphatic sac surgery. My last resort before surgery is acupuncture and things seem much better as a result. I have extensive experience with the House Ear Clinic in LA. Anybody is welcome to email me at [email protected] if you want further information. I am using both House and USC and truthfully I'm leaning toward going away from House and to USC for several reasons. Happy to help in any way I can.
So I got all my test reports to House, and I get to have a phone consult with them tomorrow morning. I’m excited and nervous.
Big day tomorrow for sure. I thought of you as a rookie newcomer, then when I saw 2014, it was like, "wait, she's the battle worn veteran and I'M the rookie." Man. The way MM can randomly come back is frightful. No place has a crystal ball, but House has seen it all. They're "big time in the jungle" as an old saying goes. I see no reason why they wouldn't take you. Let us know how it goes tomorrow.
I hope your phone consult goes well and gives you the support you are looking for. Good vibes sent to you.
Thanks guys! I’ve been fighting the beast intermittently since 2008... with a few several year long remissions...so yeah I really want to be done with it. I know there are no guarantees, but that’s what I’m looking for!
Anne - Best of luck to you with your phone consult tomorrow. Do you know who you will be speaking with? Dr. John House has treated me for 10 years but as stated above I am utilizing USC more extensively now. Best of luck with House. Please let us know how it goes.
So the phone consult was good. They will see me at the end of February to do vestibular tests (I know they are yucky but necessary) and then he’ll see me right after. At this point he’s thinking gentamicin or VNS. He wants me try Serc and Dyazide. I’m pretty sure Serc made me drowsy, and I’m scared of Dyazide because I already have low blood pressure, related to chronic fatigue syndrome. I think he hears me on this, and I understand he wants to make sure I try everything before doing the more invasive procedures. Just for others’ info - his experience is that many of his Menieres patients do quite well on the Serc and Dyazide and tolerate them fine.
PS. He’s also optimistic that a VNS would eventually resolve my day to day feeling of being on a boat, balance issues. I’m not sure if he also meant the gentamicin would help that too or not... I’m starting my list of questions for February 26!
AnneT: "At this point he’s thinking gentamicin or VNS." I'd assume he'll follow standard MM protocol and try the gent shots before a major VNS. And according to Dr. Hain you should know if the gent strategy is working after only 2 injections. So no need for 7 over 7 months, like I did. "I’m not sure if he also meant the gentamicin would help that too or not". I'd think so, since both gent and VNS have the same aim, to diminish or destroy the nerve (or technically, the faulty signals). I'm glad he didn't aim you toward shunt surgery. But that's just my non-expert opinion. Gentamicin is your best and easiest route. I'm glad he's thinking along those lines. Kinda hard to fathom that you've had MM since 2008 and never had a gent shot. It would be so cool if a few shots is all it took to fix you.
I guess my hearing was too good to offer the gent. Then I had some lovely remissions. When I got sick early last year, I was too scared to go through vestibular tests again, and very resistant to the idea of any destructive procedures. I thought about getting on the wait list to see my specialist here in Calgary, but then I felt better and didn’t want to think about it. A little bit of Menieres PTSD perhaps. I did try some neck treatments over the summer, hoping that might help. Then it all started up again in the fall, with the more brutal sudden onset attacks. Then... it took a couple of months of acupuncture, joh, and antivirals... or just time... to be well enough to get into my doctor to get the referrals going. Then... the dreaded vertigo-while-driving was the last straw. And made me feel more time-pressure to get something done. My hearing on the right (bad ear) is down to 30-40 percent word recognition. Hearing on my left is normal except for one notch at 4000 hz. My tinnitus is much louder the last few months, and maybe is on my good side now. So if the vestibular tests show any signs of bilateral... I’m not sure what that will do to the recommendations. I regret not getting the local referral going months ago, though maybe this is good (though costs $) to see Dr House, even this once as my second opinion. My specialist here is not a great communicator. And while she has a special interest in dizziness, that’s not her sole practice. I really appreciate the experiences shared here. They’ve helped me be better educated on Menieres, AND be brave enough to seek better help. I may not be around the forums for the next couple of weeks. Hubby and I will be on holiday, then to LA on the way home. But I’ll be back for sure to fill you in after my House visit!
AnneT. Totally understand the ups and downs of MM and how it affects our medical decisions. Though your rollercoaster ride has been longer and more random than mine, gosh. BTW, just as a general point, gentamicin shouldn't affect one's hearing much. It does a little. You're on the right track. Good things are gonna happen.
It was a good assessment. He confirmed that I’ve got Menieres, and that my day to day balance issues are part of that. VNG wasn’t as yucky as I’d been fearing. Left side is Normal yay! Right side is 54% less than good side. He’s still keen for me to try a couple of medications (serc I’ve tried before and it made me drowsy; a diuretic might make my postural lightheaded ness worse). Maybe I’ll try them when I get home, if nothing else so I can say I’ve tried them! He’s offered what I expected- the gentamicin injections into the inner ear, and/or different surgical options: sac surgery would be done as outpatient. Works well for 70%, spares hearing. Nerve section would be a bigger deal surgically. I think he said 85% effective but that sounds low? He did briefly touch on laby... can’t remember. His resident dr Chen was lovely, assuring me I CAN get vertigo free. I had hoped he might be able to give me the first injection before we leave tomorrow, but he was concerned about me feeling fairly terrible while traveling. So I’ll wait now to see Dr Lange in Calgary in May 1 (initially she wasn’t going to see me until the fall, hence my push to see House). While I’d like to get on with the treatment sooner, it will be easier to cope with the recovery and follow up at home. And a whole lot cheaper. But if my spidey senses turn me away from Dr Lange, I’ve got House as my backup. So homeward bound tomorrow, with less anxiety and more knowledge and options.
Other random bits of info The resident also mentioned having heard of Famvir for hearing loss, but wasn’t too familiar with antivirals for vertigo. Dr House thought 1 cup of coffee per day is fine for Menieres. (It took so much effort to get off caffeine, and I think being caffeine free may be helping the migraine end of things for me, so I’ll stay clear of it for now. )