I have reached the end of my six months on JOH and have also been on AVs for about 2 1/2 months, no relief. Did they work? Did they fail? I have no idea as I don't know what the last six months would have been like without them. I still have intense ringing and pressure, with almost daily fogginess, dizziness and mild vertigo. My last couple of stronger vertigo attacks were vertical instead of horizontal spinning, still not very pleasant (but certainly not the kind that have put me on the ground in the past) Would things have been worse without the JOH and AVs, I don't have a clue. I feel like they've improved the situation, but just haven't been able to resolve it. I would still strongly recommend them as a start for anyone experiencing MM. I have an appointment with my doctor at the end of the month, and we'll be discussing a laby. He brought it up at my last appointment, but I said lets wait and see. I'm done waiting and hoping for some miracle, it doesn't seem like its in the cards for me. Not much serviceable hearing in my bad ear anyway. Hoping I can get it done sooner, rather than later and get back to living somewhat normally.
So sorry to hear this. But I know you reach a point where you want to have a life again. I'm sure you have seen Bulldogs posts about getting the laby and getting on with your life. Whatever you decide I wish you the best.
Good luck with your decision...I would reach out to the people who have had a labby on this site. Find the most accomplished doctor you can.
Rwj, I'm curious how you and your doctor came to the decision to do laby rather than gentamicin. Like you, I have no hearing on my bad ear, but my doctor has been suggesting gent injection. If hearing preservation is not a consideration, then why not go directly to laby and be done with it, as your doc has suggested? On the other hand, if it seems like the low-dose protocol for gent injection may be meant to titrate for preservation of vestibular function as well as hearing then maybe gent makes sense even though it may be less effective. Sometimes these decisions are just confusing, overwhelming, and underinformed. Good luck with your next step, and I hope you find good and sustained relief.
Clare, I really haven't discussed it at any length with my doctor, he merely suggested it at our last appointment, at which time I wanted to give the JOH and AV's some time, so I put off any discussions. At my next appointment (end of May) I will ask him about the gentamicin injection as well as any other treatment options. I am simply assuming he'll suggest the Laby as he did at the previous appointment. I don't know why your doctor would suggest the injections and mine would suggest the surgery? Maybe it has to do with history? Maybe its the doctor themselves? So far, my doctor has been more than willing to discuss anything I want to talk about and has been very open with me about trying different approaches (he gave me a script for AV's, no issue, put me on Betahistine, etc.) so I'll see what he has to say about the Gent injections and let everyone know the outcome and decision that we make at this coming appointment.
Rwj -- I saw my doctor this morning and asked her about laby vs gent for those of us who have no hearing left. She explained that stopping vertigo either way means taking out/killing off the vestibular system. A laby would be most certain to stop the vertigo all at once; on the other hand it is more invasive and more costly. She supposed it's theoretically possible that gent could stop vertigo while leaving a little residual balance function, but we couldn't count on that. The main reason for gent over laby would be that gent is more cost-effective and less risky in the procedure (no general anesthesia, less infection risk, etc.). She said she could support either way for someone with no useable hearing in that ear. If I were having true drop attacks with the danger they involve, the greater certainty and immediate treatment of surgical laby would make good sense to me. Since I'm not having actual drop attacks, I would probably be a weenie and opt for gent treatment for myself. For people who have useable hearing, gentamicin has a better chance of preserving it.
Just got back from the appt. with my doctor, one final hearing test confirmed that it was useless to try to save the hearing in the affected ear as its basically nothing. Laby is the next step, waiting on surgery scheduler to contact me so we can get it setup.....and I personally can't wait to be done with this nightmare. Clare, I forgot to ask him about the injections, I'm sorry. I had a very bad attack last week at work and it was the final decision for me. After I asked him about the recovery compared to the SAC DECOMPRESSION and he said it was about the same with the possibility of some vertigo after the procedure (this is based on how bad/good the balance system is in the affected ear) I just wanted to get the surgery scheduled so I could move on.
Good luck bro...Please keep us updated. Since I've joined the site you are the first to have a labby - so any info you can pass along about the process will be helpful to many of us. Hoping this works out great and you finally get some relief!!
Best of luck to you, Rwj. I can see where the certainty of stopping the vertigo with surgical laby wins out over injections. I've opted to get a second opinion and am waiting for the appointment to be scheduled. Like Mac, I'm interested in hearing about your experience and hoping for great results and smooth recovery.
Best of luck to you. You will be joining a group of people who made the same decision that you are making. We all were done with the beast and decided to get on with our lives. I am pretty sure once the surgery is over and you are on the road to recovery you will not regret your decision. I will be following your journey.
I am status post laby L ear. it gave me my life back. You will be dizzy when you wake up. Takes the brain a few days or so to adjust to flying with one engine. But no big deal. Within a very short time you will feel like your old (pre MM) self. Being deaf in one ear is also no big deal. And lots of technology (BAHA etc) that can help that if you choose to pursue. Also shortly you will disappear from this board because you won't think about fog, dizziness, vertigo episodes etc. So good luck to you.
Scheduled for the 21st of this month (only 2 weeks away) and I can't wait to get it done! I have been a little concerned about losing the hearing, but its really just me not wanting to give up any of my senses. Overall, most of the time I can't hear out of the affected ear anyway......although now that I'm scheduled to lose it, it seems like I hear a lot better than I thought sometimes...... ;D I'll still check in here once in a while....
K, did you have ringing and pressure as well before the laby, and did it clear up afterwards? Thanks!
Well,........its been a rough week! Surgery on the 21st went well, I was the first one in at about 8am EST, and was done and back in my room by 10:30am. The rest of that day was bad, couldn't keep anything down, liquid or solid, massive dizzyness and vertigo when moving anything. The following day I could eat, but still massive vertigo when moving, not much pain at all. They forced me out of bed to get me moving, I did not want to move due to vertigo, but got up anyway as I wanted to go home and they weren't going to let me until I showed them I could walk without falling down. I did, but it was difficult. They let me go home the following morning. For a day or two after that, I thought, "OMG, I made a serious mistake" as I couldn't move without vertigo, however the difference between this vertigo and the MM vertigo is that I controlled it. I could stop it by not moving my head. I sat in my recliner and didn't move a lot, but I did get up every hour and walk around and did my vestibular exercises. Everyday since then has been an improvement, I can now walk without much vertigo at all, and I can see and feel that I'll be OK in another week or so. Probably by then, I'll be at about 80%, and it will likely take a while for the rest as some movements still throw me off (like tilting my head side to side, etc.) but the more that I do them, the better it gets. I am having trouble sleeping (like I'm exhausted, but just lay there in bed and can't sleep) and having some vision issues (blurry and double vision) that the vestibular exercises seem to help with. I did need reading glasses before the surgery and was considering regular glasses as I had blurryness before as well, but for the moment I'm going to wait a bit and see what the next couple of weeks bring. I suspect that I'll get back to sleeping well soon. I can't even begin to tell you how happy I am right now, I feel good (tired) and still have a little ringing in my ears which comes and goes depending upon how tired I am. Hardly any pressure at all, none really, but I'm still healing as this is only day 8 post-op. Based on my recovery so far, I'm gonna be OK and back to normal (or very close to it) within a week or two. I can hear better because even though I have ringing sometimes, its not nearly as bad as it was before the surgery. So far so good! I'll keep you all posted and check back in a week or two with an update. I'm of work until 7-5 and then I'll be working from home for at least the following week as I haven't even considered trying to drive yet, but at the rate I'm going that will be soon too! I am so relieved, and very glad that I made the decision to go ahead with the surgery. It has not been easy, but its going to be so worth it, I can already tell. Stay well everyone!
RWJ, I am so glad to hear your surgery went well and you are well on the way to recovery. What a huge relief for you. I'm scheduled for a laby as well, in a few weeks. I'm done with MM and have reached the point where I have to do it. There's no logical choice not to. I need my life back, my kids and husband need me to have my life back. I'm not so worried about the surgery itself but more about the recovery. You are giving me great hope!
Hope your road to recovery continues!! Sounds like you are off to a great start!! Please continue to keep us in the loop on your recovery as there are many of us who are and have considered the labby. Good luck!
RJW, man, didn't realize you had surgery. Good to see your spirits are up. Holy moley you did it. You had a frigin laby. You're the first member to have one since I joined. We'll be interested to see how you do. So please, when you get better, still check in every now and then. From one Toledo guy to another, cheers!
Good luck to you PleaseNoDizzy, I can't say how recovery will be for you as I'm certain that its different for everyone, but take hope that if it is bad, it gets better the more you move (balanced with rest, of course) and please try not to get down afterward, I was feeling pretty bad there for a day or two when I got home and thought I had made a terrible decision, every time I moved there was more vertigo and nausea. But then things started getting better and now, day 8, I can walk pretty confidently, with just a little dizzyness. I am purposefully moving my head now from side to side as I walk (instead of holding it stiff necked) to get used to that. It is amazing how the brain adjusts....... Remember to give yourself some time after the surgery though, don't expect things to come quickly. Pupper, best decision I ever made so far regarding this damned MM! I will check back in a few more days with an update. Take care everyone!