Despite my status I'm not new here... just inactive for a while. After 17 years of surgeries and then 15 years of being basically "stable" on the methotrexate/prednisone treatment, I've had a sudden major decrease of hearing in one ear and now the other is also acting up. Have hearing aids helped any Bilaterals out there? With the noise in my head being SO Loud, it seems like that might would interfere with hearing aids. FYI: 1985-2002= 8 Endolymphatis shunts, 1 dexamethasone thru the round window 3-day procedure. 2002-present = methotrexate, prednisone, Wellbutrin, etc. Oh, I also am autoimmune in the inner ear, CAPD, Fibromyalgia, IBS-C. Thx in advance for any input
I too have been diagnosed as bilateral meniere's (last year) and recently labeled with autoimmune inner ear disease by one ENT. And I have an appointment to get hearing aids, due to hearing loss in both ears and really loud tinnitus in both. Some hearing aids are advertised as designed to help with tinnitus, but I don't know how. As for help with hearing I think it depends on the severity of hearing loss and your adaptability to the aids. Some people with bilateral MM get cochlear implants. I think its worth trying whatever. I put up with the poor hearing, but it has become more consistently bad and now in both ears its nearly impossible to communicate and I become even more isolated. I'm also trying Humira soon, after a trial and adverse response to methotrexate, and didn't feel good about long term use of prednisone. Hopefully someone can provide a better answer. BTW beachkitty, Did you get any relief from the endolymphatic shunt surgeries? My current ENT has advised against this as he thinks it would aggravate the situation he believes to be an autoimmune cause.
Thx for the reply! Yes, I had 4 shunts in each ear over 15 years. That was the ONLY relief I received. However, my brain saw the shunts as Invaders and would immediately begin growing around the shunt to Protect me . The surgeries were getting closer together and I had to go to the methotrexate direction Please let me know if the Humira works for you!
I'll keep you posted on the Humira. Tomorrow, I will begin the self-administered injections, one every other week. I've been told that it will take 2-3 months for it to start working, maybe a trial of 6 months to see if it makes any difference.
Many here have had a Labyrinthectomy, when vertigo rules their lives and have said, though it's a rough surgery, it's given them their life back. Taking the hearing in one ear, and balance is a 'real problem' but with therapy can be alot better. So, if you've had that many shunts--it might be worth asking about this procedure. It takes a 'skilled surgeon for sure, so try to find one in your area that specializes in Meniere's treatment and has done many of this type of surgery. I had the shunt surgery you have had so many times, and it worked for me. No more vertigo--but as you can see by my posts I deal with other issues, but so thankful no more vertigo--and hoping I never will. Again, a skilled surgeon is the key to any time of surgery really. Do hope you get the answers and help you need.
ps: I meant to indicate I've only had the 'one shunt surgery'--wouldn't consider more than that. Would go to the 'big one' I mentioned above if vertigo returned with a vengeance.
Thx Yanksgirl. I've been told that you have to have one good balancing ear for the Lamb surgery. Both of mine have been destroyed for many, many years now.
as for getting a Laby being bilateral . Contact Bullldogs on this forum he knows people who are doing great with no balance nerves on either side maybe he can point you to a doctor that can help you.
Hi beachkitty, Hearing aids do help as long as your hearing loss isn't too severe. I wore bilateral hearing aids for years and they did help, but my hearing loss continued to worsen over the years and finally hearing aids no longer worked for me. It was so bad my wife and I took American Sign Language courses. Finally, I qualified for cochlear implants, and they work very well for me. Also I am one of the ones Bulldogs knows who has no balance function in my ears. Fortunately for me, my brainstem took over for balance and I do well as long as it isn't totally dark. Best regards, Jim
That's great news Jim! Thank you. I am going to try some hearing aids. I learned to balance without ears MANY years ago. So hopefully I'll do good with the article r's and surgery later on if needed. I've already talked to my husband about sign language but he's not up for that yet. Best wishes and God Bless
Hearing aids help SO MUCH. I'm bilateral, and have been wearing hearing aids for about a year now and I love them. Get some that allow for multiple programming (as hearing fluctuates and you may need a quieter setting if everything just seems too loud somewhere) Also, find some that have tinnitus control, that will help tinnitus greatly. Most hearing aid professionals are fairly familiar with menieres disease and will be able to point you in the right direction with the best hearing aids for you. Pay attention to the fit too, behind the ear is kind of a pain when you have long hair or wear glasses. In the ear can be kind of hard to get used to, things like that. Good luck! I hope they work for you!