I had this done in 2012! No more vertigo-- I have shared my story many times here with the progression of the Meniere's that I developed in 2011 after 3 years of cochlear hydrops. I then had the shunt surgery! However, the intense pressure (fullness) not true pain (so not like a migraine), but like my head would 'drain' if a hole were drilled in it above the eyes and around the top of my head! I would like to know how many here have had success due to this surgery--and if you have had pressure after it and if it ever goes away? Also, if you have had or know others who have actually had it 'stop doing what it's supposed to do'--and had it removed or if you were told it had 'clogged' and was no longer working, etc. In other words, if you did, what symptoms did you have and has it been fixed or done again? I just had a 'blood patch' for this pressure (doctor said he thought I might have a spinal fluid leak) and the pressure has worsened, so probably not due to a spinal fluid leak I'm told. If not, could it be the 'shunt' has clogged? And how would the doctor check me to find out? I plan to ask him at my next appt. but he had told me early on that 'this won't happen'. Later he said, ' you don't want to have the symptoms' that would occur if that happened.' Strange thing to say if 'it's never going to happen'! Not sure if he just tried to reassure me the first time I asked, then at another visit--said the second thing--not realizing to me it sounded like a contradiction. Any comments or personal experience with this surgery and after effects would be very appreciated. Yanksgirl !!
RedSocksGirl, I'm glad your shunt fixed your vertigo. Brief history: I had a shunt put in my bad ear around mid 2016. It seemed to have reduced the frequency of my spinning attacks. But I'd still have them, so started the Gent shots. 7 months later, after 4 Gent shots not working, I'm having a VNS this Sept. I had some headaches for about 6 weeks after the shunt surgery. Usually at night. Nothing Advil couldn't take care off. After some time they went away for good. I've never had the pressure you speak off. But then I've rarely ever had sinus headaches or any head pressure in my life. The only thing that bugs me about the shunt (other than it not completely stopping my spinning attacks) is how my ear feels to the touch. You know how when you get a party balloon and press it up to your ear and thump on the balloon with your fingers? That's the sensation I get. It's really annoying. And if my ear is messed with too much it can be a bit unsettling dizzy-wise. Like if a barber is bending my ear around, or using the vibrating shaver near it. Interesting that you mention contradictory comments from your doctor. I've had those too. Doctors are expected to have all the answers and immediately responses to questions. There's an obligation to sound authoritative and definitive. But this disease resists the definitive. It's like, how do you make sense of this tiny wet squishy ball of goo called the inner ear, with all it's complex operations? But yes, it IS frustrating when a doctor gives a cocksure response, only to contradict it the next time you see her. Sometimes it's just pep talk, and you take it with a grain of salt. But sometimes it's a substantive contradiction. Thank God for the internet. Can you imagine what it must have been like years ago to ONLY have your doctor as the SOLE source of info? You said the shunt fixed your vertigo. Do you mean by that, that it fixed your spinning attacks only? Or both your spinning attacks AND your "mild" dizziness"?
I meant it 'fixed' my vertigo--but not the dizzy feeling---However, I don't even have 'true dizziness' but once in awhile. I have ongoing (when I'm upright) pressure/fullness (whatever you call it). It feels like if you'd drill a hole in the top of my head--and let the pressure out, I'd be 'fine'! Somedays it's really bad all day, other days it's mild to not so mild. I get worn out on bad days--the only relief is to lay down or recline awhile in my recliner. Many times I just 'fall asleep' due to the being worn out from it all. Today, I was talking on the phone and suddenly my head began roaring and my voice sounded to me like an 'echo' going on! I ended the conversation--had to go lay down awhile. Still have the intense roaring and not feeling right--so plans to go out for dinner or on a 'wait and see'. If it doesn't get worse--we'll go. I try to do that in hopes getting out and not focusing on this, will help. Also, not sure this is not part of the recent 'blood patch' I had 11 days ago! Still affecting my whole system. I do hope your VNS helps you. Please let us know how you are doing. yanskgirl
Yanks, you said something that reminded me of another unfortunate outcome of my shunt surgery. "The echo" of hearing yourself talk. Not sure what you mean by echo, but anyway, when I talk I can hear myself in the shunt ear. Like, how it sounds when stick your finger in your ear and talk. I'm pretty used to it, but it's annoying and just generally sucky. But at least I don't have that head pressure you talk about. Have you thought about actually getting a drill and drilling a small hole in your head? It's been a while since I Googled "Problems with endolymphatic shunts". Sorry I can't be more help. Don't drill a hole in your head I was just playing.
LOL! I was 'hoping' you were just playing! Yes, that is how my voice sounds--like when you put your finger in your ear. Sometimes very loud==other times muffled. Then other days pretty normal but most of the time not so much! Also, I have musical tinnitus going on--a one line (music only) that will play over and over--and it's of a song just heard or most of the time a very familiar song that just starts playing 'over and over'! I'd rather have the bees, cicadas, etc. Believe me! I'll google the one you sent about shunts. I did type in another question about them failing--just didn't use that wording. Will try your suggestion.
Yanks, I have a version of musical tinnitus. But unlike actual musical tinnitus, I don't really hear the song. It just plays in my head. Like when people talking about having a song stuck in your head. It gets extremely bad when I'm having a spinning attack. The repetitive song line contributes to my mental nassea. It's most terrible when it's a song you hate. I have to make a big effort to switch to a soothing song. "Dreamboat Annie" by Heart is the song I always try to switch to. But even in my daily life, since I got MM, the song "earworms" have gotten worse. So, people with "musical tinnitus" actually think they hear a song playing? You have that?
I hear a 'melody line', yes--but more like a 'humming sound of a certain line' that plays over and over. For me--being up in years, it's older songs and some country and some church/gospel songs. I read where musical tinnitus, though rare, is usually playing songs we are familiar with. And I too have sort of learned to switch the song if I try really hard. But---going to sleep is my biggest 'song time'. When awake other sounds can 'mask' it, but in bed--all is silent but the song! Finally sleep does come. Isn't this a 'weird' thing for all of us?
I had never heard of the musical tinnitus. Yes, yanksgirl it is very weird. Mine is like an intrusion alarm constantly screeching. I'm to the point where I only hear it if I listen for it. I can't imagine what you and a Pupper have to deal with. How are things going for you? Are you feeling any better?
Just to be clear. My sense from reading about musical tinnitus is that the sufferer has the illusion of actually hearing music. I do not have that. Mine is just a persistent can't-get-this-song-out-of-my-head type thing. And it's only when I'm pretty dizzy.
Well, on the 'tinnitus association' website--it says it's 'rare' but does occur with people in the form of a 'one line type' of a melody going over and over in one's ear. I only have it in one ear! Thankfully! The melody can remain the same one or change and like other types of tinnitus--can be 'masked' with noise and when wearing hearing aids (but you don't sleep in them), it helps because other sounds mask it very well.
yanksgirl, I had shunt surgery in December 2011. It seemed to work for about 18 months. Then I went through the Gent treatments. Again, relief but for a very short time. Back to the ENT. His response, "Sorry. There's not much else we can do for you." My hearing hasn't diminished enough for anyone to agree to the Laby. I'm ready, but they are not. I started anti-virals in May. I've gotten some relief at the 1000mg 3x a day and 2x a day. Now that I'm on the maintenance dose, the relief has diminished. Back to your topic. (Sorry, I get distracted.) I also have the intense pressure over and around my ear and eye. When the symptoms are real bad, I get the feeling that my left eye, my affected side, isn't working correctly. It's as if my brain isn't processing the info from that side. When mentioned to ENT #1 his response was, "That can't be MM." ENT #2, "That is odd." Thanks guys. At least the audiologist I mentioned it too said she would look into it.
Coach--sorry your 'shunt' failed. Discouraging too. So far my vertigo has not returned. But hearing your story makes me realize it could. Gent shots are a 'hit and miss' from reports here. My doctor has 'never' in the 11 years I've been seeing him--and he is a specialist in the treatment of Meniere's--mentioned my having a gent shot. He may to others, but I recall mentioning to him that I had read about 'steroid shots' and he said he gets 'so many patients' to try to 'fix' after they have has those shots. Are they one and the same type of shot? I could have misunderstood him--but we don't talk about shots. He said my 'shunt' has 'fixed the vertigo issue. So far, he's right. Just with he could fix the other stuff--fullness/pressure/ whatever you call it. Anyway----
Coach, have you considered endolmphatic duct blockage surgery? It is a different procedure than the shunt surgery, with a high percentage of success. I am currently researching this option. https://www.ncbi.nlm.nih.gov/pubmed/25403881 Travis
I haven't looked into that as of yet. My ENT is pretty set on the non-surgical route since I haven't had any more rotational vertigo, just the "regular" dizziness and pressure. Still not sure why we have to be miserable in their minds, instead of going through with treatment we desire. I realize it's an oversimplification, but you wouldn't wait until cancer kills someone before you treat it.
Coach I think you're too deferential to your ENT. I'd find another one who's open to VNS. Break the chains bro. https://www.youtube.com/watch?v=nQb1t_Yw0S8