Would like to avoid cholesteatoma surgery for my 10yrold - does anybody have any suggestions?
Posted , 13 users are following.
My son has been diagnosed with Cholesteatoma this fall...we're scheduled to get a second opinion at Nemours ENT Dupont Hosp. but I am really looking for other non-invasive options. He just had a left ear polyp removed last month, it showed inflammed tissue only. He's had chronic left ear infections for at least 4-5yrs. The fluid oozes & stinks regularly. He's been regularly on antibiotics several times a year. I had antibiotics during birth and he was given 7day dose antibiotics when born to avoid pnemonia - labor was very long & he had gotten stuck in the canal b/c a hand/fist was stuck smashed against his head. He was rushed into NCIU at birth for breathing issues. Been having ear issues since he was little. In his younger years it was clear but now he's been having chronic left ear problems for 4-5yrs. One time it was suctioned out & lasted a whole year w/0 problems. Sometimes it's better in summer & he does attend some swim lessons when summer. After this polyp removal the pus stinks worse than ever and is runny, yellowish. His CT scan showed lots of dark perhaps fluid filled areas in left ear compared to the clear right side. Another doc had 1st suggested adnoid removal. The specialist we'll see at Dupont will be his 3rd opinion. I really don't want him to have any further loss of hearing but the smell is very foul these days. I have not tried any natural remedies & am confused where to start. I do have an acupunturist & chiropractor we could try. Does anyone have any suggestions what else I could look into?
2 likes, 30 replies
Nosnip cici73674
Posted
My daughter is 6 and she has now had 4 grommet operations, after the 1st I tried everything..cranial therapy and homeopathy and I never wanted to her to go through the 2nd and certainly not the 3rd and 4th operation.
I too had a tough birth and she was delivered with forceps and she was crushed and battered and I used to blame this on her re occurring ear infections hence using a cranial therapist.
She starting getting very bad ear infections from the age of 2 and had very severe glue ear and didn't talk much at all at 2 1/2. I instinctively knew this wasn't right. She had been put on antibiotics so many times from ear infections and she suffered with cronic pain, you wouldn't let an animal suffer the way she did! So at 3 years old her first set of grommets were inserted and it made a huge difference, she heard our cat purr for the first time and the birds sing!
When she had her 3rd set of grommets fitted we were advised that she may have c'toma so she was sent for a ct scan. The consultant where we live (East kent) was certain it was and wanted to perform a mastoid op on her going through the back of her ear. I wanted her to be seen by a paediatric ENT Doctor in London and she got refered to the Evelina hospital to see a professor - top of his profession!
His opinion was there was no c'toma and he operated on her in September to confirm this when he removed a grommet from one ear and inserted another in the opposite ear. She has retracted ear drums graded 4 (being the worst) and she is always going to be very suscep able to c'toma as no ventilation in ear due to probs with tube and skin can start to grow in places!
You reminded me of myself always trying to avoid surgery and reaching out for alternative and less invasive options. Unfortunately if c'toma is present you really do not have another option. The consultant who mid diagnosed my daughter was quite brutal with me when I said I don't want her operated in saying the it can grow into the facial nerves and brain and erode all the ear bones.
I just advise that you find a consultant that is very well known in this field cm's has extensive experience of c'toma. Best of luck with your son
cici73674 Nosnip
Posted
erumsham Nosnip
Posted
i want to know how much time ihave used homeopathy for colestoma did it work i m also using homeopathy medicine since 2 months for my 12 yrs old sonkindly share
cholestear cici73674
Posted
Make sure that they are a neuro-otologist (not just an ENT) and that they specialize in ear surgery alone. Also ask how many cholesteatoma surgeries that they have performed (the number should be over 1000 if possible). I saw 11 neuro-otologists specializing in cholesteatoma all across the US so if you need any references please ask.
It does sound like your son will need to have treatment first to eradicate the infections, as he can't have surgery with active infections. If it is indeed cholesteatoma there really is no other option but surgery. It's been 1 month and 2 days for me and I'm doing great!
Please keep us informed - we are here for you. :-)
J...
cici73674 cholestear
Posted
cici73674 Nosnip
Posted
erumsham cici73674
Posted
read ur post i m also looking for other options beside surgury i m using homeopathy for my 12 yrs old son since 3 months i m also booked for 2 opinion kindly share if neuro surgeon or laser is good for colestoma
cici73674 erumsham
Posted
erumsham cholestear
Posted
my son was suffering fr this since 6 month s initially when it was not diagonized he had ear pain and had drainage once after all treatments and antibiotics the pain did not go finallly the scan discovered this tumour i alternately started using homeopathy my homeo doc said it will take an year to go away i started using homeopathy alterantely initially the pain started going thats the only way i know the medicine is working or not but on 3 week of homeo it started againi did not stop the medicine the pain level was like 7 to 8 out of 10 than in 2 month i change to 2 doc of homeopathy after treatment from new doc the pain after 2 weeks stops like for again 12 to 15 days and now its 3 month sometimes the pain is less and sometimes its more i was looking for laser treatment plus i m concerned after reading the posts that it will comes back plus reconstruction all these things r bothering for me plus normal surgury takes 2 and a half hour and in my son case it will take 4 to 5 hours i m living in canada if u know any neuro otologist kindly share
thx
jess13976 cholestear
Posted
Currently looking for an expert doctor to remove cholesteatoma in both of my sons ears. We live in Philadelphia. Do u have any doctor recommendations at CHOP or nearby? Thanks!
cici73674 jess13976
Posted
sallyboo Nosnip
Posted
Hello Nosnip,
I know your answer was from a long time ago but hoped you may be able to tell me who your child's consultant was at the Evalina? We're down the road from you in West Kent and just starting this journey.
We've been told our local hospital doesn't do many of these surgeries so, on the basis of 'practice makes perfect' we'd like to explore options with very experienced surgeons.
Thanks a lot in advance.
Nosnip sallyboo
Posted
Hi Sally boo
I replied this morning but my message is
Waiting to be moderated as I put my email in it...a bit silly of me!
I'm glad to help, yes you need to get a very experienced consultant! Unfortunately all the good ENT doctors in kent have jumped ship and gone to private hospitals.
My daughter is under professor Jiang, he's
A very well regarded surgeon and my daughters ear is very neat and she was in the best hands under him/evelina.
You do have the right to go to your GP and book and choose who you want to use.
Most of the other children in the evelina were also from kent.
As prof Jiang works privately too (I think for the Portland) the wait time can be lenghthy.
I've also heard Daniel Tweedie is very well regarded. Just to your research.
If I can help in any other way please do contact me.
Best if luck with your son
X
terry3207 cici73674
Posted
I looked up the Hospital you mentioned and found it is in the state of Delaware.
I am from Ohio and had my Surgery done at Cleveland University Hospital.
I am 54 years old but I have been dealing with this in my ear for about 20 + years now. I started complaining about it after my Sons were born and my youngest is 24 years old. My ear always felt as if something were stuck way back in it like a big ball of wax and I would dig in it constantly to try and pull it out. Of course much of that resulted in being treated for repeated ear infections and I have been on antibiotics off and on for many years. I never did anything about the fullness because it wasn't anything that was "hurting" me it was just very annoying.
About a year ago, I had to fly to pick up my Sons car with my Sister. The flight was "terribly painful" for me. I couldn't wait to get home to the Doctor because I felt I had another ear infection and this one was worse than the others.
All he said was he couldnt see anything but gave me antibiotics anyway.
Then the crickets started in my ear and would not go away...they just wouldnt shut up. This was followed by dizziness. The antibiotics were not cutting it anymore so I asked to be scheduled to see a ENT. My ENT put me on steroids (and that was a terrible experience) but I went almost to the end and it still was not working for me.
He decided to do more testing and put a camera done my nose and found that my eardrum was retracted. He thought all he needed to do was put a tube in.
He went in to put the tube in and pulled a piece of skin back that was over the eardrum and that is when all the debri from the cholesteatoma fell out.
He referred me to Dr. Megarian at Cleveland University.
At this point it had been in there so long that it had grown VERY CLOSE to my brain. I knew that I needed to get it done because I had SEVERE Headaches that were like having Brain Freezes in the Back of my head that would not leave.
It was like a continuing Brain Freeze that wouldn't go away. Very Painful!
All I can tell you is this...
If your Son has been diagnosed with this condition, the one thing you need to know is that a cholestetoma is usually "always" infected...(this is why it smells)...
That infection can cause problems and in my case if it "had" entered my brain could have caused meningitis and could have killed me. It was "Very Close" to my brain and I Cannot Begin To Tell You how RELIEVED I am that it is out of there.
I don't know for sure if I will need any additional surgery but if I have to, I have to.
It was NOT the worse thing that I have had to endure. I know some people have had some terrible experiences but I look at it like this, the alternative would have been Much Worse.
It sounds like your Son's is pretty infected and they will need to get that infection cleared up before they can do the surgery. That infection can cause so much damage.
I do encourage you to research it a little more and get as many opinions as you need.
I did not have a hard time at all with the surgery and was back to work the following week for a couple days and back to a full schedule the second week after.
The brain freezes are Gone and I feel RELIEVED that it is not in there anymore.
I Pray for ALL the people I talk to on here and I will Pray for Your Son and You.
Please Keep me posted on what you decide. The suctioning feels Great when you get it done but it does not stop the growth or the infection from spreading.
Just a little something to consider.
cici73674 terry3207
Posted