Menieres journey - Should i accept gentamicine injection

So sorry Coucou that your situation has not improved.

I too have Menieres and have had it for 32 years. As you know, there is no cure, you and/or your doctors can only manage the symptoms.

I had my first endolymphatic sac enhancement surgery at age 43 but it lasted only 1 year and I went through it again for the revision. That held for 22 years (relief at last). My experience told me I waited too long in the very beginning to have the first surgery; I tolerated the ever increasing intensity of the spells for 8 years. I had already lost a significant amount of hearing in the left ear and was living a life of solitude.

This past year it came back without warning and in megawatt force. For some reason anytime I sat in a chair that allowed for any movement (rocking etc.) whether I was rocking or not, I would get an attack so severe I envisioned it literally throwing me out of the chair and I was holding on for dear life. That was not the only thing that could trigger an attack, but it gave me a sense of things to avoid. I decided I was not going to tolerate the spells for long as I had when I was in my 40s. I started my research and found a new Dr. as my old Dr. had retired.

Apparently I had been fortunate to be symptom free for as long as I was according to research (after 15-18 yrs it returns with the possibility of going bi-lateral).
I opted for the Gent injections as being the least invasive procedure, as I could NOT go back to that way of life again, as you are experiencing. My hearing had already diminished to the point of being non existent in my left ear and, having Menieres in both ears, my hearing is reduced in the right ear as well. What little hearing that remained in my left ear was not affected by the injections, but I did lose my balance and had to let my body adjust to the right balance center taking over for the loss of the left. It was a 3 month experience and I would go through it again in a heartbeat because it was still so much better than having the dizziness and all that goes along with it. My 4 foot walking stick was at my side for the full 3 months.

This disease is absolutely debilitating. There is no life as you can't go anywhere alone knowing the spells can happen in seconds without warning. I had plenty of ambulance rides, believe me.

After 6 months, I am finally back at 100%, my depression has abated to normal levels, my energy has returned along with my endurance. Once the "brain fog" lifted, life was good once again. I sincerely hope you find the treatment that is best for you. Doing your research and seeking out others is the best thing you can do to educate yourself. I wish you so much good luck in your journey.

 

Hi Coucou
I know it’s easy to say but… don’t give up and do not lose hope.
I know it’s hard to find a doctor that performs the EDB procedure. Even here in London I was the very first first patient to have this procedure done which was,I believe, very fortunate for me.
I know that if I had to go through the hell again I would not hesitate at all and opt out for laby.
All the best