Long Given Up

Hi my name is Bryan, I have cholesteatomas. I've had problems with this as long as I can remember I've had at least 4 surgeries throughout my childhood and problems consist even today. If you have this disease my heart goes out to you cause I have delt with the draining, the smell and everything else that comes with it. At one point I could afford treatment, not anymore.
I was not properly informed on how to really handle this disease 15-17 years ago. Due to that its back it drains everyday, I worry every 10 mins of my life how my ear looks. It has destroyed my life you cant win against this you only can hope that your surgery removes the cyst but if it is a major case be prepared to deal with it for life or until they are able to design a treatment plan that works. I dont advise switching Dr's too often switching Dr's made my situation worse. They only can tell you want they plan to do in the surgery. The amount of damage they may do to your ear depends on the case of the disease which they wont be able to tell till they cut you open. At that point they can remove a lot of your inner ear and most Dr's really do care about their patient and they will leave some of the disease in your ear hoping to give you break and allow for the medicine they prescribe to cleanse the rest. If not they may give you the complete def option where they remove everything but you will lose the hearing out of the ear. And even then the slightest amount left in the ear can hide for years before it returns. You will need to have your ear cleaned at least every 2-4 months every year. Most surgeries will cause your ear to stop building wax and thats dangerous. Wax is an defense that your ear causes to remove durbis and without that your open for an infection which can lead back to the very starting point.
So if you have this and its minor take your self to the ENT get it cleaned on the basis that controls the drainage. Ask for ear drops that clease the ear and have them move very slowly there is no need to rush to surgery like I have. The drops are the effective way, surgery is too damaging if your case is MINOR. As long as you keep it dry and get your ear cleaned out with the vaccum the Dr will put some powder to keep it very dry and your ok you will have it under control. Tell your ENT you are willing to live with the disease until better options come available and keep insurance. If it is your child with it then please teach them to manage insurance and give them support. These procedures with insurance is crazy expensive, I was charged 973.00 just for the cleaning and that was just one session POS insurance. If your able to maintain the cleanings you will make it out ok. I plan to start a non profit for this disease to help others deal with the cost and research. I have no advise for the major cases, but the parents that have to make that decision for their children on what to do just remember surgery is not always the best option some people have diseases that they have to deal with for life and under a major case this is one of those diseases explain it to them slowly till they are confident to take over the responsibility of disease management. Cheer up GOD is at work even under these circumstances. Please pray for all
An Ep User An EP User
2 Responses Jan 7, 2013

HI, I agree the after care and preventative care are essential. I definatley agree about the microsuction machine. Also my daughter had an audiologist from Australia and she suggested custom made swim moulds, these are so much better than cotton wool and vaseline and are preventive. It is important to know the state of the middle ear and especially the eustachian tube, ask why it is there and don't worry about the stupid questions, they get a good doctor thinking. Because the cholesteatoma eats away at the bone I don't think that there is another option than surgery if the cholesteatoma is a major problem. I live in the UK and I thank my lucky stars for this, the cost looks frightening.

Have you heard of the procedure Dr Bruce Gantz at Iowa University does? Just wondering if so what do you think about that procedure. Also from what I have read this disease does so much damage, is it really wise to not do anything ( surgery) I just learned that I have c toma and I would love to have another option other than surgery