My appointment was disappointing. He doesn't think steroid injections will help me at this point. He is sending me to another doctor that only does the ear. My ENT told me today that he wants me to do the sac surgery and that I'm one of two of the worst cases he's seen. I knew it was bad but not that bad. Kinda scares me. I go to the specialist Friday. Had to arrange for my mother in law to take me because my husband can't get of work and I don't know how I'll feel Friday so just having someone take me. I have to through my calendar tomorrow and reschedule all appointments to days my husband is home. I'm scared to drive. The icing on the cake is that the lady that owns the shop I work at has asked me to take a temporary leave of absence until this gets under control. Now what in the world are we going to do?
MoodyMom - did your dr discuss the other surgery options with you as well? I ask because while I know some here have had success with the sac surgery the majority that I have read is that there was limited relief to none (understanding that everyone reacts differently). With your work and livelihood being threatened I am not sure why the conversation would not at the very least include the other "destructive" surgical options like VNS or Laby.
He did mention the other surgeries but said he wanted to try this first. He said we need to skip the gent injection. I'll stress to the new doctor that I'm willing too do a more invasive treatment if it has a better out come.
I think you need to make it very clear to them that you don't have TIME to wait to try other things. Your job is in jeopardy which impacts your whole family. You need them to understand that you have to get this thing fixed immediately and for good so that you can save your job, be a mom and not live in fear. I know I sound emphatic - that is because I have experienced the doctors who act as if it is nothing to wait a little longer, try something else or give you the impression that it isn't a big deal. There were people on this board before that their doctor said that they "weren't at that point" yet for the destructive surgery - and it really irked me. Only YOU know what point you are at! Grrr Whatever you decide, i truly hope you get relief soon. Did the dr give you ativan to take when the attack starts to try to shorten the length?
You're exactly right. I don't have time to lolly gag around hoping the next treatment will be the magic one. Even if it sounds drastic to some people, I'm willing to give up my hearing in my already damaged right ear. With the support and guidance from everyone here You can bet that i will definitely be asking for the laby Friday. That way I'm guaranteed it will stop and get my life back. As stressful as my life was with two children with disabilities, I'll gladly trade my hearing permanently in that ear if that means I'll be able to return to my life. I fell today in the kitchen, knocked my head on the floor and couldn't get back up. My son was here but he didn't hear me calling for him so I literally had to crawl back to the living room. Of course five minutes after I get back to the sofa I had to go to the bathroom. This time my son helped me and held me up to get me there. Here's a question....my ent says that my balance and coordination problems in between attacks is attributed to anxiety and that the menieres doesn't cause this. I for some reason was under the impression it was because of the menieres. Today going to my appointment and walking to the doctors office took me for freak'n ever because I had to walk very carefully. I swear if I'd had a can it would have been better but I don't need something like that usually so I just deal lwith the wobbles.
I forgot t answer nicmger's question.....Yes, my ent did give me valium. It doesn't make it go away but I think it might lessen the severity a bit.
Not much Valium can do to make the symptoms go away. It will calm your vestibular system and your anxiety. It helps but not for long. WALK WITH A CANE! It'll help your balance. It also gives people less of the opinion that you're drunk. Do not take the chance of a fall where you really get hurt. I've crawled from one place to another when I didn't think I could go anymore. I've had to crawl with my head basically against the wall so I don't move my head around. I can't give my medical opinion as my severity isn't what yours is and I'm bilateral. I just want you to know I hear your pain and know how you feel.
Once you get the vertigo fixed, you can do the vestibular rehab which will help train your body to compensate. I believe that lorazapam might be a bit more potent than valium - either way make sure to put it under your tongue at the start of the attack to absorb into your system more quickly.
The 'shunt surgery' took away my vertigo--none in four years. It's not the radical surgery--and I do have about 30% hearing left in the affected ear. However I can totally relate to the imbalance issues. I have those and did the balance therapy that does help. I still don't use a cane--but you are dealing with 'vertigo' still and imbalance, so you need to use whatever helps. I have to 'touch something' when walking any distance or where I have to look 'side to side'. I haven't fallen either since my shunt surgery due to the ear. I did fall due to being in the dark one night coming from the bathroom and misjudged where the bed was--and broke a vertebrae in my back. Had kyphoplasty done the next day in the hospital. No falls since then--over a year ago now--and that is encouraging. You might ask about the shunt (Endolymphatic Shunt surgery). Just a suggestion.
Thanks for the suggestions. I'll know for sure after Friday's appointment what the surgery plan is. It does look like I need to use a cane, at least for a little while. I'm constantly bumping into the wall and stumbling over nothing. You can forget me even trying to navigate anywhere in the dark. I get very disoriented. I'm going to insist to the doctor that he do something and very soon. I've lost my job until this is fixed, no longer drive, dependent of my husband to do most of what I usually took care of. I was so glad when he got home this morning. He works 48 hours shifts and I feel like now when he is home I've completely ruined his days off. I'll update Friday after my new doctor appointment.
MoodyMom - just be prepared. Write down your thoughts in advance (bullet point) so that in front of the dr you keep your mind focused. Some drs can talk down to people, be impatient and basically bulldoze to their personal agenda. You have to be your advocate. If your husband is going with you, make sure he knows in advance what YOU want to accomplish and then if need be he can push back on the doctor as well. Perhaps your dr will be open minded and LISTEN to your experience but I have been around too many (for myself and the years for my mother) and sadly I have found that if you don't already have your research, thoughts, position and ready to push for it..often leaving the office the patient is disappointed and feels hopeless. You have options - antivirals (may take longer to know if they work for you), sac surgery, VNS or Laby. Whatever YOU decide is right for you, that is what you go in fighting for!
Thank you, nicmger. I will definitely go in with my list. Unfortunately my husband can't get off to come with me so my mother in law is going to take me. What a pita it is to have to depend on someone else to get from one place to another. I've done some research on all the options and want to push for either the sac or VNS surgery. Which one I wonder has the most success rate for the longest time. I'd hate to get relief only to have it last just a few months and then I'm back to square one. I know they usually want to start with the more conservative and least invasive method first, I just feel like go ahead, get it over with so I can get my life back.
From everything that I read (and that is a lot) for some the sac surgery works for quite a while for many, but not most. VNS, performed by a good doctor, done. On with your life. Yes you have to do some physical therapy, walk a lot to "retrain" your brain but as many have said, back at it quickly and then put this behind you. Don't get me wrong, if no matter what you do the dr won't agree to VNS "yet", go with the sac surgery something is better than nothing. But the other thing that the dr doesn't think about (but would impact you) if you do the sac surgery then ultimately have to go back in a year for the VNS, it is your wallet that pays all of the copayment and deductibles again. AND you are the one that has to go back to fearing the next attack if you start to feel the symptoms coming back. As I shared, I am fortunate that I was able to get a/v and they have worked for me. I absolutely am not trying to "push" you to anything. I just feel your stress in how this is impacting your life and want so much for you to not have to worry about vertigo, attacks, your family, your job.....the combination is so much. And sadly the stress is such a trigger for many (like me) so it is almost a losing battle.
I had a VNS following unsuccessful shunt surgery. The surgeon offered me shunt surgery, laby or VNS. I knew very little about MM. No internet support groups then. I chose the shunt because it was supposed to be so simple. I know some people have had much success with it, but I did not. My hearing loss before the shunt fluctuated between mild and moderate. After the shunt it was severe. I was supposed to be in the hospital overnight. I was there four days suffering from double vision, nonstop vertigo and vomiting. I didn't get any relief from the shunt, but it did make things worse. The vertigo became much more frequent. I never went more than a day without vertigo. Sometimes I would have an attack, it would end and another one would start minutes or hours later. I sometimes had 3-4 vertigo attacks a day. Eleven months later I had the VNS. I wish I had gone for it straightaway. I would have saved myself a lot of misery and a lot of money. Years ago when I first joined here, lots of people told of the same experience with shunt surgery. I would never, under any circumstances, have shunt surgery in my other ear. How long it will take you to recover from a VNS and feel normal again will depend on how much vestibular function you still have left in that ear. I didn't wake up from the surgery with vertigo and I was able to walk to the bathroom, unassisted, when I got into a regular room the day after the surgery. After having MM for 20 years and having had many, many vertigo attacks, the surgeon found a very badly damaged vestibular nerve. My other ear had been slowly compensating for the bad ear, so when the nerve was severed, it didn't make that much difference where my balance was concerned. It did end the vertigo coming from that ear, once and for all. Others who have had a VNS have reported having vertigo for up to two weeks following the surgery, having to use a walker, needing vestibular rehab therapy to be able to walk again. I didn't have any of those problems. Some do. Some don't. Most shunts will become clogged, dislodged or covered over with scar tissue, causing vertigo to return. Some doctors will do a revision surgery if this happens. And, as I said before, some people have years without vertigo after having shunt surgery. In my opinion, shunt surgery is a temporary fix, if that. Whatever you choose, I hope your doctor will make it happen quickly. All the best to you. Cheryl