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Laser treatment for cholesteatoma

Posted , 14 users are following.

P17745
P17745

My 5yr old son has been diagnosed with cogenital cholesteatoma and we are considering laser surgery as an alternative. Does any one here have any experiences with this type of surgery that they can share here? Does anyone know what the reasons are why the laser method is not more widely adopted other than the cost ? Are there any limitations or restrictions to the method compared to conventional surgery method, especially with regards to operation on children? Thanks

1 like, 31 replies

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  • kids_61505
    kids_61505 P17745

    Posted

    HI  sorry I have never had the laser surgery I do know a little about it tho . Sorry I couldn’t be more of a help I would speak with the ENT specialist to know all your options and get a better u Dee standing to which options better xx
  • kathryn89620
    kathryn89620 P17745

    Posted

    Hi, 

    Never heard of laser as an alternative? 

    I've had 10 conventional cholesteatoma surgeries but was never offered an alternative.

    I guess the pros would be that it's less invasive but my concern would be the damage to the surrounding tissues that the laser may cause. As someone that suffers from chronic nerve pain in the ear, the pain could increase as a result of tissue and nerve damage. 

    Would love to hear what your ENT consultant thinks though! Would be very interesting if it was an option as the recovery from surgery isn't very pleasant. 

    Keep us posted!

    Kathryn

    • P17745
      P17745 kathryn89620

      Posted

      The thought of going through 10 surgeries doesn’t sound very pleasant at all. We still haven’t had a chance to speak to our consultant since the diagnosis yet unfortunately, it is proving to be very difficult to even try to get any appointment or time to discuss and hear their opinions on it.   I hope that you have recovered now and managed to stay Cholesteatoma free ?
    • kathryn89620
      kathryn89620 P17745

      Posted

      Not pleasant at all! Cholesteatoma free now (fingers crossed this continues as mine has been notoriously stubborn and likes to return!!) 

      Been reading all the other comments and I agree totally that the alternative treatment options are not easily accessible. Could have done with seeing this Mr Hamilton years ago! 

      I hope you manage to get the information you need for the best option for your son. Will keep my fingers crossed for you both xx

  • rajesh91064
    rajesh91064 P17745

    Posted

    There are two surgeries for Cholesteatoma 1. Canal Wall Up and 2. Canal Wall Down. Laser is to remove the cholesteatoma from difficult to go areas and reduce the trauma in the ear. Please do your research before you decide on the surgery. Must surgeons suggest only the surgery which they can do and laser in the ear is a skill hence not all ENT surgeons suggest it. If anyone wants to know any better than either do your research or buzz me and I can't complain.

    • Gladray
      Gladray rajesh91064

      Posted

      Hi Rajesh

      I'm recently diagnosed with cholesteatoma and looking for information on surgery.

      On googling, got to know laser is the wisest choice and consulted prominent ENT surgeons but they all unanimously rejected laser's role in Cholesteatoma and called it a myth, bluff and asking me to forget about the surgery details and surrender to them with full faith!

      Can I have the surgery cost involved including all the associated expenses. How was your experience with Dr.Hamilton!

    • james46108
      james46108 Gladray

      Posted

      The fact that ENT surgeons are using emotive words such as 'myth' and 'bluff' are truly shocking to me. I am a patient of Mr Hamilton and had cholesteatoma in both ears. Both had damaged hearing bones, exposed facial nerve and otic capsule etc. and both were dealt with by him with a number of techniques including the KTP laser. I have just had my second-look operation on the second ear, with an 'all-clear' diagnosis (for now!). I have had titanium prosthetics inserted on both sides with a decent improvement in hearing - I would guess at about 70% of what it was originally.

      Mr Hamilton was very open and honest about his techniques, the implications of the surgeries, and the future. The laser isn't a 'magic bullet' in this kind of surgery but is part of an arsenal of tools to try and minimise the invasiveness of a complicated operation. I'm sorry this response is so late to the original poster, but I hope it's useful to others who may be influenced by it. If your consultant has a strong negative reaction to techniques involving laser treatment I can only recommend getting another opinion from another more open-minded consultant. Anyone needing any more detail is welcome to contact me for more information.

    • steph55058
      steph55058 james46108

      Posted

      hi please could you help me with your surgery if possible. im hoping my partner can get in to see dr Hamilton as i have just been looking up the cholesteatoma and he came up as the best. he is currently under the care if a dr on the nhs but its just getting worse by the day is his hearing and the pain so we are looking to maybe go private.. how did you get into his care do you just email or ring? did you go private? and would you recommend him for this treatment?

      sorry for all the questions!

    • james46108
      james46108 steph55058

      Posted

      Hi, I arranged for a private consultation first via his website/email. 15 months since my last comment and still no regrets and would recommend without hesitation. I went a mixture of private and NHS. I had the first 'fixing' operations done privately for speed, was expensive but I'm convinced it saved my hearing rather than risk NHS delay. I got very lucky, and was referred to him afterwards by my GP so the follow-up was done via the NHS, and I'm pleased to say I was treated just the same as when I was private. The most important thing is not to waste time, so good luck!

  • nicola13480
    nicola13480 P17745

    Posted

    Hello. My ten year old daughter was diagnosed when she was 6. She has had three cholesteatoma operations, the last one being laser surgery two days ago. Her first two operations were both done with traditional methods and at the second look operation some work was done to try to strengthen her eardrum or prop it up somehow to prevent further recurrence. At the time we were all optimistic about the outcome although we knew that even the best surgeon could not be sure to have removed it all 

    Unfortunately it did come back, more aggressively this time (although we were not aware of it), and in late November she developed a dangerous abscess behind her ear following an ear infection and after a week long course of antibiotics. This had to be surgically removed urgently. We were told that because the abscess was so dangerous she would need a further MRI scan which they assumed would show a recurrence of the cholesteatoma, and she would need more surgery just before Christmas which would involve taking down the ear canal wall. 

    The MRI scan did show the cholesteatoma had returned and had completely filled the mastoid. Our consultant was in no doubt that the only way to deal with this was to remove the ear canal. Surgery was scheduled for 20th December.

    I won't go into more detail because I think that tells you enough. It was pretty bad and our surgeon (who is very experienced in children's ear surgery at the children's hospital) was being very clear about the advice given.

    In any event, because removing the ear canal presently seems to have irreversible and lifelong consequences, not least of which are total deafness in that ear, difficulties fitting a hearing aid, a large opening in the ear and the problems with swimming and hair washing, and because it wasn't my own ear I felt an enormous sense of responsibility to do my best to find out more about other options and why they had been eliminated. I was not unhappy with the care our daughter had had and I still have absolute respect for her consultant. I just wanted to be as sure as I could be that this was the only and best option for her before such radical treatment.

    At the eleventh hour, I found John Hamilton's website and spoke to his secretary. I made an appointment and we travelled to Cirencester to see him in January and the planned operation in Manchester was postponed until after that. Mr Hamilton has a special interest in cholesteatoma and if you look online the research papers that are published seem to either be by him or refer to his methods. After meeting with him we transferred her care.

    Our daughter's laser surgery was carried out at the weekend in Gloucester Royal hospital.  She will need further surgery in 6-12 months to reinforce the eardrum again and replace her missing hearing bones (he put one back in at the weekend). The children's hospital originally had no plan to put the bones back in until she was at least 18. After the surgery they planned for her in December it would not have been possible, ever.

    So what does this mean? Surgeons are not robots. They are all different, with different views on the best outcome and best treatment. So are we as patients and parents. For some people the more radical treatment may be preferred over the disadvantages it brings with it. 

    Our daughter's cholesteatoma may return again. Mr Hamilton's success rate with the laser is around 95% but she could still be in the 5%. The success rate of a good surgeon using other traditional methods is around 70% and she was in the 30% where it failed. There is no guaranteed fix for this disease, yet, but there are different methods and different outcomes and opinions on which is best.

    Personally I find the lack of information on the alternative methods (which may not be offered by your hospital) very disappointing. We shouldn't have to trawl the internet to glean information. But that is the way it is, for now anyway. 

    You don't have to accept the advice given by one doctor, or even one team, at one hospital. You have the free will to seek a second opinion. When I told our consultant, I was given their blessing. They knew Mr Hamilton and said he was a brilliant surgeon. Unlike most ear surgeons, he carries out this type of surgery every week. Why we can't be directed to this expertise from other areas baffles me because it is in the patient's interest. 

    We came home yesterday. My little girl is watching tv. Her twin sister is at school. She has a sore head but by the end of the week she will be pretty much back to normal again. 

    It is horrible to watch your child go through this and to know it could go on and on for years ahead. But, techniques are improving all the time. 

    I can't answer your original question about restrictions or cost, although I would say that laser must logically cost less to the taxpayer overall if it is more successful, but the NHS isn't set up like that - it's more about budget in one hospital/geographic area I think. The cost of the laser is only part of it I suspect. It will also be the cost of training to use it, maybe bringing in someone with experience to lead a team and also the number of patients who tend to need it in a given year. Some hospitals operate a loan system as well I think.

    Whether your hospital has a laser or not, you can be transferred somewhere where it is available. That is something you have to go back to your GP to arrange I think. That is what we are in the process of doing now anyway. And it all starts with finding the right person to be transferred to. Then I am back to where I find that part of the process very disappointing. 

    Anyway I hope this helped. I found Mr Hamilton from a combination of searching research papers and this forum.

    • P17745
      P17745 nicola13480

      Posted

      Thank you so much for your very detailed and helpful response, I cannot agree with you more about the lack of information given to patients. We have only read about the laser surgery on the internet and have been wanting to seek the opinion of the current consultant on it before we make that final decision, as we would like to hear his independent viewpoints on it being an ENT specialist.  Unfortunately, we have not had any luck to arrange any discussion with the consultant since the diagnosis, hence why we have resorted to posting on this forum just to see if other people can share their experiences. It is really hard for any parents to have to see their little ones go through all this and your response is really supportive at times like these.  I am really glad that your daughter is recovering well from her last surgery and I hope she will stay Cholesteatoma-free this time round. X 
    • rajesh91064
      rajesh91064 P17745

      Posted

      My son at 8 went through the same surgery with Dr. Hamilton. Like I said earlier the ENT surgeons suggest only the type of surgery they have experience with. The outcomes from different types of surgery is different and true recovery is also different. Dr. Hamilton, by far, is the most experienced in the UK. His success rate is actually 98% for removal of cholesteatoma at the first attempt and that is because of laser. His surgery is a combination of traditional and laser methods. Our son had his surgery in November last year and we have a 3 month check up tomorrow. The cholesteatoma had corroded all the hearing bones so Mr. Hamilton has inserted a titanium implant. Ofcourse my son will need surgery after a year as Mr. Hamilton had said that the only way one can diagnose cholesteatoma is by operating. MRIs and CAT scans are useful but sometimes don't give too much information.

      So please please do your research and decide on the right choice. For us it was Mr. Hamilton and we travelled to him from London but then I know people who travel to him from Scotland and also Thailand and India. Do remember that the surgery is critical and is in a sensitive part of the body where bleeding is profuse so selecting the right surgeon is important. Our first diagnosis was with a senior paediatric surgeon in London and he had suggested traditional surgery as he isn't trained to do laser. We did upset him when we moved to another doctor but for me it was important so got suitable treatment for my son. I have heard people do 7-10 surgeries over 20 years when operated upon in the traditional way. Statistically laser has 98% no recurrence when done by Mr. Hamilton.

    • P17745
      P17745 rajesh91064

      Posted

      We have been told that he will need a titanium implant as well at the diagnosis when they advised us of the traditional surgery, although they didn’t actually clarify whether it was due to a corroded bone or other reasons.   Thank you very much for the information, every bit of information really does help, especially as we have to make a decision pretty soon.  Good luck for your son’s check up tomorrow ! 
    • nicola13480
      nicola13480 P17745

      Posted

      Good luck Rajesh. I completely agree with you.. and good luck to you P17745 (😊wink. Don't be afraid to seek as many opinions as you need until you feel well enough informed. You don't need a GP referral to see Mr Hamilton to get more information because he does also have a private clinic. So you can see him and then weigh up your options. He does both NHS and private work.

    • kathryn89620
      kathryn89620 rajesh91064

      Posted

      Good luck to your son for his appointment tomorrow! 

      I sadly fall into the category of people who have had between 7-10 conventional surgeries. I almost think it could be an ego thing amongst surgeons in that they will always want to "fix" you themselves and not admit defeat and refer to someone else. 

      I wish I had known about Mr Hamilton years ago. Makes it even more frustrating that I only live 40 minutes from Gloucester so he would have been the best option! 

      I've just read up on him and looked at his body of work and studies and he seems like the bees knees when it comes to ENT!! Sounds like your son is in very capable hands. 

      Thank you for the information Rajesh. Too late for me but I imagine it will help a lot of cholesteatoma sufferers get some answers! 

    • Gladray
      Gladray kathryn89620

      Posted

      Hi Kathryn,

      I spoke to the chief-nurse of a hospital in kent (cholesteatoma laser assisted surgery is done here) and they have entirely new perspective. If you are undergoing the surgery by a well experienced doctor, there's not much difference between laser assisted and conventional.

      And I'm quite baffled by the number of surgeries you have undergone!

    • joanne13735
      joanne13735 nicola13480

      Posted

      Hi Nicola

      Can I ask was laser surgery performed on the NHS or did you have to pay private? 

      Thanks Jo

    • Shell321
      Shell321 joanne13735

      Posted

      Hi Joanne my son has had the surgery twice he is now 13 but we have managed to get him an appointment in Scotland to have laser surgery and we are over the moon and this is being done on the nhs 
    • joanne13735
      joanne13735 Shell321

      Posted

      Hi Shell 

      That’s brilliant news! Please can you tell me how you gotthe ball rolling? 

      Thanks 

      Jo xx

    • Shell321
      Shell321 joanne13735

      Posted

      He was due to have the surgery again as mri showed it had regrown so when we were at his normal consultant I asked about John hamilton and our consultant told us he would write to someone else in Scotland and ask if he would see my boy we went to the appointment yesterday and he was more than happy to do the surgery I told him I didn’t no anyone in Scotland used lasers and he said it was because he only does nhs so it’s not advertised etc and he has been doing it for 18 years so we are delighted and told us will be done within 12 weeks our local hospital with normal surgery has a waiting list of 6 months minimum so we are so happy where are you based
    • joanne13735
      joanne13735 Shell321

      Posted

      Oh wow! This is great news for you all, laser treatment seems to have a far better success rate so fingers crossed it gets rid of it once and for all! 

      I’m based in Kent, we are under Scott Maskell who’s CV looks amazing but he doesn’t do laser surgery, my son is 13 in July, he’s suffered with ear problems since he was 5 or so, we was originally under another hospital but was discharged when he was 7 saying he had ‘attic pocket’, the first time anyone requested a CT scan was in February this year and that was Mr Maskell, we’ve been waiting ever since, I phoned today and was told by clinical admissions that we could be looking at August September time, my son is suffering daily with pulsatile tinnitus and has gone completely deaf in his bad ear as well as daily foul smelling discharge, he’s missing so much school, I’m not expecting to jump any waiting lists in just trying to look at all options and get him the best treatment and to try any prevent multiple surgeries which seems to be the case when you read all the forums on Facebook.  I’ve emailed Mr Hamilton’s secretary to see if they will see Kian on the NHS but haven’t heard back yet.   Xx 

    • Shell321
      Shell321 joanne13735

      Posted

      My son was the same he was seen 3/4 times a year for 6 years had 3 lots of geommits fitted before they realised what it really was he has had all the ear infections etc aswell I know mr hamilton does nhs and I believe you can request to see him through nhs but with us in Scotland we were not sure they would refer us and we were planning to go private however our consultant asked us to wait and he would speak to some one at another hospital to ask if they would see my son and we did and so glad we did.  Just waiting for a scan then all systems go for the op and that consultant said there is defo better success rate with lasers will keep you posted how it goes and hopefully you will get your son seen too and hopefully nhs aswell xx
    • joanne13735
      joanne13735 Shell321

      Posted

      Thank you so much for taking the time to reply, please do keep me posted and I hope all goes well for your son! Fingers and toes crossed!! I’ve definitely made my mind up to pursue laser treatment.. look forward to hearing from you with positive news.. GOOD LUCK xxx
    • vanessa193
      vanessa193 Shell321

      Posted

      Hi, i have just been searching for information about laser treatment for cholesteatoma and i would really like to know which Surgeon in Scotland you were referred to, my son recently had a private consult with Mr Hamilton but we live in the north east Scotland and would really like for him to be treated nearer home.

      Thanks

    • Shell321
      Shell321 vanessa193

      Posted

      hi there we are based in the highlands and we were planning going to mr hamilton but our consultant referred us to dundee and my son had his laser surgery there on the nhs, under mr speilman i hope this helps you where are you based

    • vanessa193
      vanessa193 Shell321

      Posted

      hi, thanks for replying, we are in Aberdeenshire and i have been searching for information for some time , just to get a diagnosis has been a struggle, how did your sons surgery go? i would love to hear about your experience and thoughts.

      Thanks again

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