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Cholesteatoma- 7 year old

Posted , 16 users are following.

worried_mother_2
worried_mother_2

Our 7 year old girl has just been diagnised with cholesteatoma. We have been worried constantly. Please someone help us. We are looking for a good surgeon for the operation. We live in Hertfordshire. Does anyone have any ideas?

3 likes, 42 replies

42 Replies

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  • caz01
    caz01

    Posted

    Hi - Thanks for all you have spoken about Michael's situation, you have definately made me think about Callum's 2nd op and to be prepared when we go back in July, that it may too be quite bad again, I do hope not. I just wish like you it could all just go away. Callum is going swimming on Friday for the first time in a year and is very conscious that he has to wear a plug and swim hat to fun tubes etc, when all his friends don't! Although he had a new ear drum grafted after when he had his op, we were up at GOSH on Friday and he said he can swim but he must wear both to try and prevent further infection. Will keep Michael in our prayers for Friday's appointment hope you have good news, take care Caroline x
  • yatejules
    yatejules

    Posted

    will keep you updated, hope callum gets on at swimming ok x
  • melissa2
    melissa2

    Posted

    hi everyone it melissa, hope u r keeping well.... ive had my 3rd operation this time and it was by far the worse ever ... my recovery was a lot slower and i had some nerve damage to my tongue (was numb one side and felt very strange) and to m y ear (tip is stilll numbe after couple months ) i had a lot more medication this time round including meds for the damage of the facial nerve....

    the operation i had was a left sided tymphmplasty and adding in complications lasted nearly seven ours( big shock) doc resited the gromit in ear......still waiting for 2 hearing aids which are now 6 weeks late in arriving .....

    as this was a bigger op than expected i was sent home on morphine and numerous other pills sad

    as ive said before the operations are so worth it , i can now do most anything like swimming ( ear plugs needed)

    my only advise is what ever way you/your childs operation was done would be not to allow water into the ear canal as it does cause infections way too easy ... ive had a lot of infections myself and they can be most unpleastant to smell and painfull ..

  • melissa2
    melissa2

    Posted

    hi everyone it melissa, hope u r keeping well.... ive had my 3rd operation this time and it was by far the worse ever ... my recovery was a lot slower and i had some nerve damage to my tongue (was numb one side and felt very strange) and to m y ear (tip is stilll numbe after couple months ) i had a lot more medication this time round including meds for the damage of the facial nerve....

    the operation i had was a left sided tymphmplasty and adding in complications lasted nearly seven ours( big shock) doc resited the gromit in ear......still waiting for 2 hearing aids which are now 6 weeks late in arriving .....

    as this was a bigger op than expected i was sent home on morphine and numerous other pills sad

    as ive said before the operations are so worth it , i can now do most anything like swimming ( ear plugs needed)

    my only advise is what ever way you/your childs operation was done would be not to allow water into the ear canal as it does cause infections way too easy ... ive had a lot of infections myself and they can be most unpleastant to smell and painfull ..

  • yatejules
    yatejules

    Posted

    oh dear sounds like you've been through it! went to see michaels surgeon yesterday and came home feeling really depressed, he said his right ear is doing really well, hearing has improved on that side, will do a 3rd stage next year and if it is as bad he said he will do canal wall down then, guess it gives us another couple of years, feel really scared though as his left ear which he has glue ear and a grommet in, said that his hearing has got lot worse in that ear and he cant understand why! he is going to do a ct scan to see what is going on, the worse bit is waiting! he said it could be another cholesteatoma but doesn't know, feel really worried about what he is going to find!!

  • caz01
    caz01

    Posted

    I am so sorry to hear that Michael's appointment yesterday didn't go to well. What a worry for you, not knowing why the hearing in this left ear is getting worse. How long have you got to wait for the CT scan, hopefully not too long? The waiting is painful, so worrying not knowing what is going on. I hope Michael is ok in himself, probably too young to really know what is going on. Has he started reception yet? Really feel for you and we will keep Michael in our thoughts, hope CT scan gives you results you are hoping for and not showing cholesteatoma in his left ear. Take care xx
  • yatejules
    yatejules

    Posted

    The CT scan should be a few weeks, so I presume a month or so, its going to be a long month!! Michael is absolutely fine in himself, like you said he is to young to know what is going on really which I'm glad, I do the worrying for him! He stated in reception in September and luckily he loves it! He has never said he doesn't want to go which is a blessing! He has lots of friends and doesn't seem to let his hearing bother him, although he made me cry the other day when he said 'mummy I don't want to be deaf anymore'! Its a shame because he cant wear his right hearing aid at the moment because of the infection he has, now on antibiotic ear drops for 10 days. The school don't help because when he had the oral antibiotics they wouldn't give them to him, health and safety!! so I've had to go into school every day to give them to him! how did Callum get on at swimming on Friday? did he enjoy it? thanks for replying, really helps to have someone to talk to going through the same thing, thank you x
  • caz01
    caz01

    Posted

    Ah bless him I didn't realised the hearing in his left ear was so poor, I do not know too much about glue ear, grommets. Schools can be a little unhelpful when it comes to helping with medication etc. I work at an infants school and our school is the same in so much as we can't give antibiotics. The only thing I could say is if you are friendly at all with any of the support staff, like teaching assistants etc you could always ask them if they could administer them as a friend for you and not a member of staff. This is allowed in our school it may be the same in yours. Probably won't help this time but in case he needs medication in the future. Made me fill up reading what Michael had said to you, bless him, I hope you are getting all the support needed at school and staff are giving all the support he needs. Lovely to hear he is happy there, a very good sign. Thank you for asking after Callum, he loved going swimming again and wore the plug and hat without a problem. He said his ear hurt after but then said it had been hurting a bit before too, been waiting for infection but thankfully so far nothing. Lovely to talk to you and will keep Michael in our thoughts and prayers. Take care
  • yatejules
    yatejules

    Posted

    His hearing wasn't that bad in his left ear, but for some reason since the op it has got a lot worse, just got to wait now, which as you said is the worst bit! I might try that next time he is on medication, will ask his teaching assistant. We don't really get any support from the school, because he isn't statemented, they don't really talk to us, he did go into the Hearing Impairment Resource Base after his op but that only lasted a week! Do you have a sensory support worker? we don't have anyone. Other people I talk to they all say that they do but we don't have any support from any one like that, just friends and family really. We have joined a local deaf group and a woman there is looking into it for us. I'm so glad Callum enjoyed his swimming, that's great news, bet there will be no stopping him now! Really hope he doesn't get an infection! Was it a normal swimming hat that he wore or was it a special hat? take care j x
  • melissa2
    melissa2

    Posted

    hi everyone hope u r all ok , someone asked on here for a doctor who deals with choleastoma my doctor is called mr quinn hes attached to lister hospital but does clinics in most hospitals in hertfordshire he is really good and has done all my operations ......

    glue ear is just a build up of fluid behind the ear drum which needs draining which is why a gromit is fitted it is a minor procedure which both me and my son have had the way i explained it to my son at 3 was he had cheeky ears and the doctor was going to give them some magic straws so they can work better i also explained it woulld happen when he was asleep so he wasnt scared ... im really suprised that their is support out there for people affected by choleastoma , the only help i get is dissabiliity living allowance at lower rate, i am still waiting on my hearing aids but have been given the date of 2nd may to hopefully go and collect them yipee.... also just thought i would say that when the fluid builds up behind the ear drum it does distort hearing and is like hearing everything through a tonnel or a sea shell its very strange...........take care x

  • caz01
    caz01

    Posted

    Callum has moderate hearing loss in his right ear and thankfully hearing in left ear is good at the moment. In his class they have "sound field" system, where teacher wears microphone (either headpiece or clip on top) and there are speakers all round the class - great for all children especially those with hearing problems. They have them in all classess form Nursery to Y2 at my school and all classes in Callum's junior school. Would be worth speaking to your head about if they have not got it already. I am not sure if children with hearing problems at our school have a sensory support worker, I will have to ask. I will also ask a good friend for advice, her son has total loss in one ear and wears a hearing aid in his good ear. He will be 13 this year and is doing really well at his secondary school, you would never know he has a problem. He lost his hearing after getting meningitis when he was about 2 yrs. Callum just wore a normal Zoggs rubber tight fitting hat. Although my friend was staying with them for the party I stayed too as was worried. We have been given an appointment at GOSH 3 weeks before his next op and he said it will give time to clear up any infection if there is any and they will do a hearing test. I do feel sad when I think of it. All his friends will be breaking up for 6 weeks hols, leaving their junior schools and he will be more or less straight into hospital. I keep telling myself loads of children go through a lot more but it doesn't always help - even at 11 they are still your baby!! Take care Caroline x
  • trelissa
    trelissa

    Posted

    Yes I live in Hertfordshire. My daughter has had three operations with a fourth impending. Our specialist is at Northwick Park - Mr Kalan. She has fetal anti-convulsant syndrome and has a malformed middle ear with a dysfunctional eustachian tube. Looking at the date I know you will have someone now. I do hope all is well
  • marie_45668
    marie_45668 worried_mother_2

    Posted

    Hi, it's always a huge worry with children. My daughter had her first cholestetoma removal age 3 and now she's awaiting a date for a double mastoid op which is basically a new cholestetoma in the other ear and a pearl (first formation) in the recurring ear. My advice is to get your go to recommend her to a children's hospital. We had Sheffield children's do the first op and now Birmingham children's are doing the second op. Between these times she was referred back to button general where the experience with children is just not the same. The children's hospital specialise in this and they make the whole family feel so much better at such difficult times. I will be doing all I can to keep her registered here afterwards as sadly cholestetoma needs annual checking for recurrence and these guys do it best... Good luck for your daughter... Stay positive for her. My daughters recovery after her first op was really good.but we made sure that she never feels different. I'm happy to share any other thoughts with you if there's anything you would like to know that I can help with.
  • robin81169
    robin81169 worried_mother_2

    Posted

    I was just wondering if you made a decision and had surgery on your 5 year old. 
    • LM_15
      LM_15 robin81169

      Posted

      Hi Robin

      have you or your child just been diagnosed with Cholesteatoma? 

      Lesley

    • robin81169
      robin81169 LM_15

      Posted

      Yes, my Granddaughter was diagnosed this week. She is in my care and I'm freaking out. She is already having a surgery for a kidney problem and he wants me to see about getting her ear done at the same time. I have to call Children's Hospital and let them know. So I don't know what they are going to do. She is 5. 

    • LM_15
      LM_15 robin81169

      Posted

      Hi Robin

      I'm really sorry to hear about your granddaughter. It must be really stressful for you both. I was besides myself with worry when I realised my son had cholateatoma. Please try not to worry. The best thing is that it has been diagnosed rather than left to grow and cause more damage. Do you mind me asking how they diagnosed it? Did she have an MRI scan?

      My son has had two operations now and cholateattoma was removed both times. His last op was a couple of years ago and he has an MRI scan booked tomorrow to see if it has grown back. The best thing I did for my son when he was 5 was to insist that the doctors open his ear up and operate to remove the diseased bone. Had it been left untreated he could have ended up with much more serious illnesses due to the direction it was growing. His was eating through the bone to his brain.

      You should make sure the doctor who will do the operation is an expert in ENT and has experience removing them. We are with doctor Benjamin Elliot at chelsea and Westminster hospital. He managed to operaate without damaging the small bones in the ear so my sons hearing is still pretty good in that ear.

      Don't be worried as long as you have the right doctor then he will be fine. Feel free to bombard me with questions.

      Lesley

    • robin81169
      robin81169 LM_15

      Posted

      I just talked to the ENT office at Children's Hospital in Pittsburgh tonight. They aren't even going to look at her til first week of March. Is that going to be soon enough?  Her PCP acted like it needs looked at right away. The ENT didn't seemed to concerned. 

      No MRI. They have been checking this ear for 3 or 4 months before sending her to Children's. But they just told me this week what they are sure it is. 

    • LM_15
      LM_15 robin81169

      Posted

      From what I understand Cholesteatoma is a slow moving disease. I think we had to wait about 6 months for the operation and then he was not well so had to wait another 2 months for another appointment.

      March will be fine.

      How is her hearing? Have they told you which part of the ear is affected. Why do they think it's cholesteatoma?

      My boy had his first op when he was 5. He's 9 now. They cut behind the ear and pull it forward so that they do not damage the ear drum. Then they cut out the diseased bone. The operation took a couple of hours. You can't really notice a scar unless you look for it which is great. There is a nerve that runs across the ear and down the cheek. The doctor told me they put some kind of monitor on it so if they get too close an alarm sounds. When my son woke up after the op he asked for a sandwich and chocolate. He was really upset as he couldn't taste the chocolate!!! Happily this only lasted a couple of weeks if that!! 😃.

      I think some doctors go straight in through the eardrum so you should find out which procedure they will do. Also google the name of your consultant to see what experience he or she has. The more you know the easier it will be for you. Your granddaughter is very lucky to have you looking after her.

      Lesley

    • robin81169
      robin81169 LM_15

      Posted

      Thank you so much. It has made me feel so much better talking to you. She's mentioned a lot about her ear bothering her. I haven't noticed any change in her hearing. Is an MRI the best way to find it?  The doc just was looking in her ear and said something wasn't right and it looked like she had it. I will know more once we go to ENT. 

      Her eardrum had burst. She has had so many problems since she was a baby. Then her dad and his girlfriend wouldn't take her to the doc because they said she was faking and lying. Then it burst and they had to take her to ER. 

      Hope your son is doing much better. Does he still have to get MRI's?

      Robin

    • LM_15
      LM_15 robin81169

      Posted

      Oh bless her poor little thing. They are so brave and resiliant at such a young age.

      You'll feel a whole lot better once you've spoken to the ENT specialist. Just be sure to take your time. I wrote down a whole list of questions and went through them all and when i didn't understand i asked for the consultant to explain it again - I was even writing notes down - i must have looked like a bit of a mad woman but i didn't want to walk out of the room until i understood everything that was going to happen.

      My story is a bit different from your one. My son had ear infection after ear infection for a couple of years. Our doctor said that all children get ear infections and put it down to swimming! When i had finally had enough of them pushing anti-biotics onto him, I took him to see a private consultant. He didn't think it was Cholesteatoma - thought he might just need grommets to vent the ear. My son did have a CT scan but it showed up very minor corrosion of the bones in his ear. Having researched, i knew that the only thing that corodes the bones of the ear is Cholesteatoma. The doctor didnt want to operate on my son as he wasnt convinved. Eventually I convinced them they had to and they found the Cholesteatoma at the back of the ear it was about 1/2 inch in diameter. I went through the same painful process two years later when i was convinced it had come back and they didn't believe me. When they eventually operated again it had grown back in the same place and was the same size!.

      Yesterday (Friday) we went to the hospital and my son had an MRI scan. They tell me now that it is much more advanced and it will show up the Cholesteatoma if it has returned. I have an appointment with the consultant on 8th Feb to find out what.

      I know another small  boy who has the same as your grandaughter - his eardrum was bleeding and then burst. His cholesteatoma has affected the 'hearing' bones of the ear. He has just had his 3rd operation. He has a hearing aid (very discreet) and will have until he is 18 and then amazingly, using 3D printing technology or something similar they can rebuild the bones and insert them. This will hopefully enable him to hear without the the aid.

      Doctors and technology are incredible these days but never underestimate your own instincts. Your love for your grandaughter will help you make the right decisions for her.

      I'm here whenever you need to chat

      Take care

      Lesley 

       

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