Silent sinus syndrome

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I have been diagnosed last year with silent sinus syndrome, I was wondering if there are any other sufferers out there who could give me any kind of information on it more.

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  • Posted

    Hi Fiona - last year I was diagnosed with Silent sinus syndrome (also know as Imploding antrum) 4months ago I had my surgery to clear the sinus - it's recommend to wait 6-12 months after surgery before considering repair to the orbital floor - what were you wanting to know about 'SSS'?

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    • Posted

      Hello Jess! I do apologise for the very late delay, apparently I have SSS since birth and I since I’ve had my diagnosis I’ve researched and basically came up with surgery as my option, how do I go about this? 
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  • Posted

    Hi Fiona - Yes surgery is your best option - you will need to see an ENT specialist - the sinus surgery was very straight forward - I had that about 6 months ago and are seeing the eye specialist this week to see what permanent damage has been done and what can be done to fix it.  Did a specialist diagnose you? 
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    • Posted

      Hi Jess and Fiona,

      I was also recently diagnose with SSS. I have my surgery scheduled in a few weeks and I’m SO nervous. 

      Jess, did you not see any improvement in your eye position after the first surgery? I’m guessing no if you’re following up. 

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    • Posted

      Hi Adukatz

      I hope your surgery goes well - I had the sinus cleared and I have to say it was very straight forward and I was walking the beach within a few days - but no unfortunately for me it did not fix the eye (my sinus was probably blocked for 20 years) I am seeing a Ophthalmologist today for two reasons one I have been experiencing an ache in the eye on the sinus side and this started will before the surgery and is still ongoing and secondly for the sunken eye - there is a blog worth you looking at of others experiences

      Good luck with you surgery - I have researched a lot about SSS so let me know if there is something specific you would like to know -

      Moderator comment: I have removed the link(s) directing to site(s) as it was broken. If users want this information please use the Private Message service to request the details.

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    • Posted

      Thank you so much for your response. It’s such relief to talk to someone else about this.

      I’m so happy to hear you were able to walk on the beach so quickly! It sounds like it was a good experience for you. I’m most nervous about the potential eye and nerve damage from the surgery. You didn’t have any residual effects? 

      The sunken eye is noticeable to me too. Are you hoping to have the implant placed? I’ve read some that people opt for a blepharoplasty to make there eyes more symmetrical or filler rather than the implant.  

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    • Posted

      Hi Adukatz

      I know how you feel its all very daunting - but I have to say it was much easier than I had expected with no damage caused from the surgery.  Mine was very straight forward, others may have different experiences.  Just make sure you have a good ENT surgeon that you have confident in and he/she is up-to-date with this procedure. 

      I saw the Ophthalmologist yesterday he was not in support of the orbit implant he felt a 2mm difference did not justify the risks of the surgery (risks being double vision, loss of sight, bleeding or nerve damage- rare risks ) he also does not feel my eye discomfort will be fixed with the orbit implant -  I'm not convinced and might seek a further opinion -  if you type this in your tool bar 'silent sinus syndrome carolyns blog' its a great way to read others experiences and decisions.

      I did ask him about fillers (hyaluronic acid ) because of the volume I would need to lift the lid he felt this was risky to the eye and to the extraocular muscle.  His suggestion as you mentioned is blepharoplasty he would do this in the other eye lid to try and match them - my concern is if Surgeons  eventually find a safe technique to fix the sunken eye where does that leave me!!!

      I hope that's helped you a little - hopefully after your surgery the sunken eye will restore itself naturally as many do.

       

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    • Posted

      Hi Adukatz

      Just wondering how your surgery went? Are you fully recovered now?  you will be pleased that part is all done - I just thought I would check up on you and see how its all going now.

      take care Susan

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    • Posted

      Hi Susan!

      I appreciate you checking up. I have my surgery on Tuesday actually and I’m bringing to get pretty anxious about it. You have great timing! I think I’m just most worried I’ll have a poor outcome from this since I have no current sinus related complaints. The eyelid change is my only symptom.

      Hope you’re doing well. Any change in your plans since your last appt?

      Ashley  

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    • Posted

      Hey Ashley

      Nice to hear from you, I'm sure your op on Tuesday will go really smoothly - you're going to be so pleased to have it all behind you.

      I have done some research on orbital implants and it looks like there is some progress to eliminate complications - they are using 3D printers to help them - I've found a specialist and I'm going to see him to discuss my options.

      I'll be thinking of you on Tuesday - let me know how you get on .

      Take care

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    • Posted

      Hi Susan! 

      So, I’m one week out and doing well. Overall it wasn’t nearly as bad as I’ve expected but I’ve had some dry eye and a lot of nausea (which I wasn’t expecting). I’m probably just paying a lot of attention to it but I almost feel as if my eye looks worse since the surgery. Any new update in your plans? 

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    • Posted

      Hey Ashley

      So pleased you have now had the surgery and it wasn't as bad as you were expecting - at this stage don't worry too much about your eye I was told it could take 6 months to a year to settle - the sick feeling you are experiencing could be the effects of the anesthetic - and I was told the eye pain could be the surgery just aggravating the nerves around your eye - as for me I have contacted a new specialist and just waiting for his reply - keep improving and take care 😊keep me updated

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    • Posted

      Hi there, I need some advice & help please.  I have been suffering from SSS since 2013 following a pituitary tumour removal.  I had maxillary sinus surgery & it was better afterwards but I am now suffering again. My eyes are terrible & my glasses no longer work very well at all.  Can I ask are you in the UK, which Hospital and consultant have you come under & is there a support group for this horrible condition ?  Do you know of anyone who has had more than one operation for SSS ?

      Life is really difficult at the moment & I don't know where to turn. Thank  you -Francesca

       

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    • Posted

      Hi Francesca,

      I’m so sorry to hear that you’re struggling. I completely understand feeling overwhelmed by this condition, I felt extremely worried and selfconcius prior to my surgery. There is a group on Facebook that has been very helpful to me. If you search Silent Sinus Syndrome, you’ll find a woman named Carol who created it and a blog. Many people message back and forth about their experiences. 

      I was diagnosed this year and had my surgery a mere 3 weeks ago. Susan on this thread was a big support to me also. There are many people going through what you’re going through. You are far from alone. Sending you lots of good thoughts. 

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    • Posted

      Hi adukatz,

      I also did the sinus surgery on 26.05.

      Did you see improvements in your eye? I know we should wait to see results, but I'm really worried that eye will not get back to normal, i did not want to do the eye surgery.

      Thanks a lot,

      Susana 

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    • Posted

      Hi Francesca

      I'm so sorry you are going through such a rough time - as Ashley mentioned the Facebook blog about 'silent sinus syndrome carolyn' is very informative and you will see the big message to get out of the blog is that SSS is a rare disorder and it is difficult to find a specialist that is both familiar and experienced in this field - but don't give up, if youre not happy with the medical advice you are getting search for someone else and don't be afraid of getting second opinions - the internet is a great source of information - if you find someone who has lots of experience in your symptoms (even if they live in another country ) email them and ask for help and direction (chances are they will know someone in your area that they can recommend ) take care and don't just accept one opinion

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    • Posted

      Thank you Adukatz. It’s nice to  be able to talk to someone who understand the discomfort this sss causes.  Don’t  worry about surgery  and good luck. The surgery I had was very easy and involved cutting a bit off  and drain what was behind it. I felt I was back to earth as soon as I woke up😁 but now I am back to square 1.  Dry eyes and the need to change glasses often plus being in cookooland  it’s annoying! Do you have same symptoms?  I will find the suggested thread and try find out more. Thank you.

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    • Posted

      Hi Francesca

      Do you think the vision loss maybe associated to the pituitary tumour? i saw it can be one of the symptoms? I get the eye pain I'm not convinced it is dry eye and I was told by the specialist it could be the nerves settling down after the sinus surgery - I have read on carolyn's blog that some people have needed a second sinus surgery because the SSS blocked it again it's definitely worth your leading

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    • Posted

      Hi y’all,

      I do have some dry eye but I had lasik last year and think it’s mostly from that. I had some eye aching before the surgery and immediately after but haven’t felt it the last week or so. 

      I’ve noticed improvement in the eye asymmetry though. I was hopeful but didn’t expect any improvement and I’m thrilled that it’s looking a little better. 

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    • Posted

      Hey Ashley that's great news about your eye improvement hopefully it will just keep improving it can take 6 months to a year - glad to hear it's going well

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    • Posted

      Yes I have heard back and he has already checked out my scans and asked me to get a new CT scan before I see him in August - looks promising he is very quick to reply to me and he is leading in this area using 3D printing - fingers crossed he can help

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    • Posted

      Hey Susana

      It can take 6 months to a year for your eye to settle so try not to focus on it too much ! at this stage its early days - I know it's easier said than done !! But it is too early for you to know if it will restore your eye to its normal position - take care

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