Re: [-SPAM-] Re: My ENT appointment last Tuesday

[Guest guest]

Hi Amber

You said:

"The main thing you need to be concerned with is has your doctor done many of these procedures in the past. The more experienced the surgeon the better chance of getting all of the disease peremantly removed and restoring hearing. Just to let you know they can NEVER do this in one procedure and I have researched this with the medical society and many online websites plus the fact that my doctor teaches the procedure to other doctors. They must always see what damage the disease has done, remove and then go back in 6-12 months later to complete the process of making sure the disease is truly gone and then restoring hearing. If they tell you they can do it in one shot they are lieing and you will end up like me with c-toma returning 5xs in one ear over a period of 15 years."

I would reply that, if you are talking generally, this is not totally true; however, if you are talking about CWU only, I agree with you. I (and others on this board) have had only the one surgery: mine was a radical modified mastoidectomy, tympanoplasty and ossiculoplasty (CWD) carried out way back in November 1999 and to date I have had no recurrence. This is likely due to the fact that it was done as a CWD, as opposed to a CWU. A CWD surgery tends to afford more single-surgery remedies than a CWU procedure would normally.

Hope this helps.

Kazzy :-)

[-SPAM-] Re: My ENT appointment last Tuesday

Phil,

Considering I have had my 11th surgery just recently I will respond as a vetern. The doctor cannot answer all questions till they have gone in. My c-toma I was told did not even show up in ct scans so they are very unreliable and can not always be trusted. Everything you said is correct that they have to remove all of the disease or it will come back. The main thing you need to be concerned with is has your doctor done many of these procedures in the past. The more experienced the surgeon the better chance of getting all of the disease peremantly removed and restoring hearing. Just to let you know they can NEVER do this in one procedure and I have researched this with the medical society and many online websites plus the fact that my doctor teaches the procedure to other doctors. They must always see what damage the disease has done, remove and then go back in 6-12 months later to complete the process of making sure the disease is truly gone and then restoring hearing. If they tell you they can do it in one shot they are lieing and you will end up like me with c-toma returning 5xs in one ear over a period of 15 years. My current doctor has a 95% reoccurrance rate over 30 years The only 5% that had the return were the ones that did not come back for part two...

Hope some of this info helps!

Amber Phil <psmorristiscali (DOT) co.uk> wrote:

Hi Colleen

It seems odd that if your ctoma is extensive the doctor would be considering a Canal Wall Up. I realize that as a diver any kind of CWD would be bad newsfor you. The talk about removing the labyrinth or the cochlear sounds alarming and would constitute a surgery that is far more drastic than anything that is generally used for ctoma. Let's hope it doesn't come to that - the results of the scan you posted earlier don't seem to mention anything about the inner ear

I just thought I'd share how my specialist appointment went last Tuesday. I tried posting this the day after but only half of it was posted for some reason. Hopefully this one doesn't get modified prior to being accepted for posting.Everything I managed to dig up and figure out from my CT scan report was fairly accurate. I'm scheduled for a CWU tympanomastoidectomy for Jan 5th - which is incredibleconsidering the waiting time for most people around here (northern Alberta, Canada). Actually, they had to 'bump' me in just to get me in ASAP. Which means, someoneelse's appointment was rescheduled to probably March or April ... not sure how I feel about that.However, something that the ENT has planned has me concerned. According to the ENT he is going to eradicate all the ossicle bones even it they are intact because the c-toma is that extensive. He mentioned that if he doesn't remove everything the c-toma has come in contact with and every little bit of cell debris, the c-toma will grow back. He reassured me my hearing could be reconstructed if that's all he has to do. However, because of my dizziness, vertigo, and other symptoms he's concerned it has spread into the inner ear. If so, he'll have to remove that too - which there will be no hope for my hearing then.During my appointment I was at a loss for what questions to ask - I went blank. So, after the appointment I typed up a letter and faxed it to him asking a few questions. His secretary called the next day and said he explained everything to me when I was at the office, if I wanted him to answer my questions again, then I'll have to book another appointment and loose my Jan 5th surgery date. She suggested talking to my GP. So, I sent him a copy of the letter and have an appointment with him next week. Hopefully someone will be able to answer my questions!I still haven't heard from the first ENT I seen. I managed to get an appointment this December 19th with him to find out what's up. I still want to get his opinion before I jump into any kind of surgery. This time, I'll be taking my list of questions with me.For all the veterans out there, what's your take on this?ColleenNo virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.15/581 - Release Date: 09/12/06

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