How to live with a punctured ear drum.

Hello Liz @lizvidad58, Welcome to Connect. Mayo Clinic has some self care information if you haven't seen it already.
"...Until your provider tells you that your ear is healed, protect it by: Keeping the ear dry. Place a waterproof silicone earplug or cotton ball coated with petroleum jelly in the ear when showering or bathing. Refraining from cleaning the ears. Give the eardrum time to heal completely. Avoiding blowing your nose. The pressure created when blowing your nose can damage the healing eardrum."
-- https://www.mayoclinic.org/diseases-conditions/ruptured-eardrum/diagnosis-treatment/drc-20351884

Have you thought about seeking a second opinion to see if there may be alternative sterilization options that work for you to allow ear surgery?

Thank you for your response, As I mentioned previously, I am allergic to Iodine and Betadine. The only alternative for surgery is Chlorhexidine, which can cause deafness. My question was, "How did I live the rest of my life with a punctured ear drum?"

Hello Liz @lizvidad58,
It looks like we don't have a lot of people on Connect living with a ruptured eardrum. My experience with that was with children with tubes for chronic ear infections. All the basics of ear plugs and vaseline on cotton balls to prevent moisture in the ear. My husband actually had a tube in one eardrum several years ago due to chronic inflammation. He totally forgot about it and went snorkeling. Yes, he wound up with an otitis media and oral and topical antibiotics.
What are your symptoms? Are you having vertigo or dizziness from this? How is your hearing? I had SCC cancer deep in my external ear canal at the age of 58. A subtotal temporal bone resection removed my eardrum and external ear canal and luckily, with radiation and chemo, the initial cancer. So I suddenly went from normal hearing to one side only. Scans also showed a vestibular schwannoma on the nerve to my good ear, which has caused hearing loss in that ear. A bone anchored hearing aid (BAHA) was a blessing for me on the cancer side. It transmits sound into vibration that travels through the bones of the skull into my inner ear where hearing function is still present. MYyENT surgeon at Mayo Clinic placed it and the audiologists have been wonderful in managing it. Now 13 years later, with radiation effects decreasing hearing on the right and the VS decreasing it on the left, It is a constant struggle. But it is the new normal. And better than being dead from cancer growing into my skull.
You don't have that same situation, but I would suggest that you are experiencing the same new normal, with the threat of a different cancer. Some degree of acceptance and learning the skills to live with this change will help you to move forward, rather than dwelling on the thoughts of your life as you knew it now changing. Your brain has plasticity, the ability to change neural pathways and adapt. I learned that well with my severe vertigo after surgery and just fighting each day to walk and retrain my brain, and it worked. It works with changes to hearing also. You have been dealing with this for years so you have probably experienced this.
Also, if your ENT team is not from a large referral center, then I agree with John that a second opinion is a valuable next step. Perhaps others have had your same issue with surgical disinfection and there are other options out there. As a veterinarian I know there are other disinfectants besides those 3 most typically used. I don't know if there are others that are safe for a ruptured tympanum, but it doesn't hurt to consider a second opinion. New things are always being developed and approved so if you keep kicking the can down the road, something may become available to make your surgery happen.

Hello Liz - sorry to hear about your situation. I have had something similar happen and stumbled across NAET. It is a super out there treatment but it basically clears up allergies. I was allergic to Dextrose which I specifically needed for a IV and went to a NAET practitioner in my state and got the allergy “cleared” and was able to successfully receive treatment with the Dextrose. I know it’s not within our normal guidelines of western medicine but I would strongly advise looking into it for your specific situation.

Hello
I have had a punctured eardrum for about 15 years now. I also have hearing loss due to an autoimmune disease.

The most important thing to know is to keep your ear dry when bathing/washing your hair. This is imperative. You must keep it dry or you will get an ear infection and you can lose more hearing. It can also cause balance issues.
I recommend getting a special ear plug made for you by your audiologist for about $75 that will last for about three to five years. It’s worth it.
In the meantime use swimming ear plugs you can get over the counter.

I don’t wash my hair myself when my earplug isn’t working and I am waiting for a new one. I go to a salon and put an over the counter ear plug in my ear and hold a towel over my ear while they wash my hair. When I am showering or bathing I use the same kind of plug under my shower cap to make sure my ear stays dry.

Another thing to know is that ear wax will build up in your ear easily if you’re using a hearing aid. This must be removed by an ENT professional. Either a doctor or nurse practitioner, not an audiologist. It needs to be removed about every three to six months depending upon your ear and how much you wear your hearing aid. If you don’t remove the wax it will seriously interfere with your hearing.

Water is your enemy when it comes to your ear.