Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 Hi, Just want to say welcome. You are among parents who face similar struggles and understand where you are coming from. We'll help you take down that brick wall piece by piece. Take Care! __________________________________ Stay connected, organized, and protected. Take the tour: http://tour.mail./mailtour.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Relax - I know that's hard to envision with the recent turn of events. On this string you will find literally tons of us who have survived various levels of Ctoma as well as often multiple bouts with the beast! My personal experience started in my early 20's I've had multiple x multiple surgeries! And - today at nearly 60 - I can still get by and hear what I need to hear. I lost bones, had them rebuilt, lost wires which held the bones in place ( old technique no longer used) and still can hear. I just recently went to an open ear hearing aid on one side because the aid was easier than attempting another surgery at this time. Perhaps later if I need - I'll go for some more reconstruction. Age and lifestyle have taken a toll on some of the reconstruction work. My thought is that your doctor will attempt one ear at a time. That being said - the rest is up to you. Seek the VERY BEST doc you can find. Check him out - thoroughly! If something doesn't sound right to you - question it! You'll learn a lot from this group - Good Luck S Lochner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Hi , Don't worry! There is such thing as good news! I also have (had) c- toma in both ears. I am sitting here with a bandage round my head having had surgery to remove the c-toma from my left ear just 2 days ago and I can still hear out of that ear despite packing, cotton wool and bandages. I can hear bird song, the sound of the keys tapping on my keyboard, and the TV in the background. I am having a follow up next week. I already know that my hearing bones are fused but the good news is that they removed all the c-toma. I was chatting to my girlfirend after the op at a quiet conversation level (as we were trying to keep our conversation private on a busy ward) and I could still understand what she was saying - so there is good news out there. The key thing is for you to find a surgeon / consultant you are happy with and discuss your own individual case with them and get all the answers you need direct from the source. > > I have had a CT scan which indicates cholesteaoma in both ears. The damage is such that I will need a mastiodectomy on both ears. The hearing bones have eroded away. I only have mild hearing loss now. I am also 5 weeks pregnant so I am unsure if they can even do any surgury. I am so upset by this. I meet with a specialist on Friday. Will I go deaf? Anyone else in this situation? How about all of the complications? I haven't heard any stories of success with double cholesteaoma. Are there any out there. I just can't lose my hearing!! I just can't believe this. Please help!!! > > --------------------------------- > See the all-new, redesigned .com. Check it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Hello, I also have CT in both ears. I had my first surgery on July 10th at the University of Penn and it wasn't as bad as I expected it to be. I did not have any of the side effects that a lot of people suffer through. I had minimal pain (I didn't take any of the pain medication my Dr. gave me), the diziness lasted only a couple of hours after surgery, I had no neck pain or bruising, no jaw pain (which I was so glad because I have TMJ), no sharp ear pain. The only thing I guess I could complain about (other than having CT to begin with) is that the on left side of my tongue (in the back) my taste buds are off (because I guess the Dr. had to cut the nerve during the operation) but that too is healing. My hearing is already better than it was before the surgery and the Dr. says that they can't tell how much it will improve until 3-4 months post surgery when everything is healed. I am hoping to wait until next summer to get my right ear done. I guess the moral of my story is: everyone's surgery is different. Use this group to get an idea of what surgery can be like but don't assume yours will be as bad. Keep positive and say a prayer. Hang in there, you are not alone!!! Meg --------------------------------------- Original E-mail From: Kuhn Sent: Aug 02, 2006 07:45 PM cholesteatoma Subject: Help Me I have had a CT scan which indicates cholesteaoma in both ears. The damage is such that I will need a mastiodectomy on both ears. The hearing bones have eroded away. I only have mild hearing loss now. I am also 5 weeks pregnant so I am unsure if they can even do any surgury. I am so upset by this. I meet with a specialist on Friday. Will I go deaf? Anyone else in this situation? How about all of the complications? I haven't heard any stories of success with double cholesteaoma. Are there any out there. I just can't lose my hearing!! I just can't believe this. Please help!!! See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Hang in there, about 15% of c-toma patients have it in both ears. I was lucky and only had it in one, I know that there are a few in the group that have had it in both ears. Unfortunately most do lose some hearing in the surgerys, it all depends on the damage that the c-toma has caused. It's never the same from one person to the next. There is no other way to ride yourself of C-toma other than surgery. tom hansen --- Kuhn <stampinupstamps@...> wrote: > I have had a CT scan which indicates cholesteaoma in > both ears. The damage is such that I will need a > mastiodectomy on both ears. The hearing bones have > eroded away. I only have mild hearing loss now. I am > also 5 weeks pregnant so I am unsure if they can > even do any surgury. I am so upset by this. I meet > with a specialist on Friday. Will I go deaf? > Anyone else in this situation? How about all of the > complications? I haven't heard any stories of > success with double cholesteaoma. Are there any out > there. I just can't lose my hearing!! I just can't > believe this. Please help!!! > > --------------------------------- > See the all-new, redesigned .com. Check it out. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Another one here with double c-toma and a big message to RELAX. While the first thing to do in this situation is to panic with a capital " P " , it's not good for you or your unborn child. I cannot give any specific advice as I'm not a medical professional but from personal experience I'm pretty sure that things will not get dramatically worse in the next 8 months so they could operate after you give birth without difficulty. It is also very unlikely that you will completely lose your hearing - you can read messages from others and take my word that I still have my hearing after surgery on my left ear and have complete confidence that I will still have hearing in my right ear after my surgery next month. Speak to a specialist and get all the info you need from them especially with regard to how long it will be before surgery can be performed. Take it easy, we're with you all the way. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Some hospitals work out financial arrangements in advance. xxllsickiellxx <xxllsickiellxx@...> wrote: I already have a doctor ready to operate im 19 and have not much cash but i could easily finance it, if someone out would accept me, my surgery is in 4 days so im in a bit of a hurry anyone have any idea's to get 2,500 im lost it's hard to get financing when you have no credit is there any way i might be able to put a lean on my car for it??? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2008 Report Share Posted July 17, 2008 hi all i m new to this group.i had disc problem 5years ago and at present i m suffeing from arthritic back ,and ankle pains,my ESR is highand CRP levels r also high .i do not want to take steroids ,is there any help pl help.if i take diclofenace or any other prescription medications i m happy or else it is miserable,i feel like quitting the job got bored with the pain killers and antibiotics.i dot know what to do.do i need ot continue my rest of life with pain?or any hope pl help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Hi Deniece,I would say the best way for me to tell you my story is to send you to my blog at www.cyrenaweeks.blogspot.com When these emails come through they usually have spaces in the website address' we send, so remember to delete out the spaces and then the link will work. I had lap band done 1/19/07, I couldn't be happier! I would have not been able to afford this in the US because I couldn't get financing but I did get financing through one of the companies that work with Dr. A. If you have any questions after reading the blog, please let me know, I'm happy to help however I can. Oh, I am 5' 4", and 34 yrs old, I have 2 kids, I was 240lbs when I had surgery and now I'm 130 lbs, I went from a size 20 to a 4.Good luck on your research and let us know what you decide Cyrena help me Hello everyone, I am thinking about having the lap band done in Mexico, please send me all information you can about your experience. What was the cost of the whole thing? I am researching all this verses having it done in the USA. Please advise me of all things your going through or have been throug. Thank You, Deniece Quote Link to comment Share on other sites More sharing options...
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