Posted , 9 users are following.
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.
0 likes, 47 replies
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joann15969 fiona8989
Posted
No cheap ice cream the night before!!wake up horrible sinus headache 😫😖
anna02793 fiona8989
Posted
So good for me to come across other people who have sss and had surgery. My GP didn't think anything was wrong but fortunately referred me. Unfortunately i had to go through the eye clinic route before getting to ENT. I also had to wait several months before any scans as i was pregnant. I would say the eye ache started 6mths after i think my problems started. I opted for sinus surgery rather than combined as i was only 1-2mm and so was a chance it could recover, however my eye is also quite sunken. I had the surgery in april this year. It seemed to improve initially but after follow up and finding a clot in my sinus the size of an olive i had to do sinus washes which i feel made it worse. Now just waiting to return to consultant to discuss need for orbital surgery. The eye ache continues and really gets me down. Would love to hear from.anyone that has come through all of this!
jess52607 anna02793
Posted
Hey Anna
I'm sorry to hear your sinus surgery did not help your eye - can I ask where you are experiencing the eye pain ? Is it the whole eye or just the bottom of your eye?
anna02793 jess52607
Posted
Hi Jess - my eye in general feels very sluggish compared to my other unaffected eye and the pain is a chronic ache i have around the whole eye feeling it deep at the back of the eye. Its lots worse if using computer or driving where i guess the eye strain is more. I'm on mat leave at the moment but dreading a return to work as it was always worse on a work day as computers and driving is a large part of my day.
I am being booked for a repeat CT scan so i hope that gives enough time to assess change (4 mths post surgery). The consultant i spoke to suggested combined sinus and eye surgery before and managed to agree just the sinus surgery first. I'm guessing he will want to look at eye surgery next but I'm reluctant about the risks of increased double vision. Awful isn't it! Still no idea what may have caused me to develop this problem - just bad luck i guess.
jess52607 anna02793
Posted
Hey Anna , yes I think the eye pain is worse when on computers , cell phones and reading , but I wonder if it's due to looking down for long periods of time and not what I'm looking at - I did a lot of research on sss and two separate surgeries are recommended and 6 month to a year to wait for things to settle after the sinus surgery is recommended - I saw the specialist yesterday he specialises in orbital implants using 3 D printers - this technic reduces the risk considerable look up 3d orbital implants Christopher lim ncbi - also the cause is general due to deviated septum - some mention a possible pregnancy link -who knows!!
fiona8989
Posted
Been reading the updates some positive and negative responses to the surgery. Hang in there, I too have been referred to the ENT specialist just awaiting an appointment seems the logical thing would be what you all have gone through... surgery basically. I am more excited than nervous.
I am assuming the eye pain is unbearable? I say this due to me also having fibromyalgia and being sensitive to pain at the moment.
Hope you are well and keep smiling
Fiona
jess52607 fiona8989
Posted
Good on you for your positive view on the surgery - I found it much easier that I expected which is always a good thing - is your eye pain in just the affected eye ?
anna02793 fiona8989
Posted
Hi there Jess and Fiona - thankyou for your replies. Its so supportive knowing others have experienced the same. People that haven't had this don't really get it. Its been quite a hard journey given the changes in the look of my eye. It was very difficult to come to terms with.
Whereabouts are you based? I am in the UK and as far as I can tell i don't think 3d interventions are known about here but will do some research. Thankyou for the tip and info.
The eye pain is variablr and definately more bearable if I've had sleep. I can certainly imagine having fibromyalgia must heighten the sensation and probably the last thing you want to be dealing with.
I think its the sunken aspect of my eye causing the ache. Are there any cases you've come across whereby the sunkeness has improved at all after sinus surgery? I can see how the orbital could "remodel" itself but really can't see how the sunkeness can be resolved without an operation. My worry is that the sinking continues. Or maybe i should be patient and wait as you say for the 6-12mthd post surgery. I certainly prefer this option as facing surgery again is scary.
Thats interesting about the deviated septum - i assumed the deviation was caused by the impacted sinus and neg pressure. I had to have some of mine chopped off to gain access to the sinus!
adukatz anna02793
Posted
I had the sinus (FESS) surgery June 4th. I have definitely seen improvement in the sunkeness and my eyelid appearance. It’s definitely better. It not completely back to normal - I don’t think it ever will be. I would say it’s worth seeing what it looks like after because about two weeks after is when I noticed the improvement.
Sending lots of good juju!
jess52607 anna02793
Posted
Hi Anna
if you search 'carolyn blog silent sinus syndrome' - it's a bit old now but well worth a read to hear others experiences.
The use of 3D imagining is to work out what the shape of the implant needs to be, they mirror it off the undamaged orbit. I am in NZ but I'm sure this would be available in the UK.
I 'll post some good medical reports for you to read about waiting at least 6 months after the surgery - they basically say if you do the implant too soon and don't give the orbit time to settle after the sinus surgery there is a risk the implant could over correct your eye. (I'll post that soon)
Take care
jess52607 anna02793
Posted
I was just wondering how you were getting on and if you are still getting the eye ache?
anna02793 jess52607
Posted
Hi Jess - thankyou for asking. Yes unfortunately I still have the eye ache. My endoscopic sinus clear out was performed in April and unfortunately the appearence of my eye is no different. I almost thought it was initially after surgery but i had a clot and needed to do some sinus washes which i don't think was great for it. The clot has gone - follow up in June showed that it had cleared so i was hoping to see more benefit. None seen so far - the ache i think is more related to the eye being so sunken back as its only very slightly sunken downwards.
I have further follow up with orbital consultant in Nov and i had a CT scan planned b4 so i guess that will be good enough time since surgery to see what else can be done. I'm very nervous about any other surgery given the potential for further double vision and eye ache/strain if they don't get it spot on.
How are you getting on?
Anna x
jess52607 anna02793
Posted
Hey Anna
Nice to hear from you.
Yes I think you're right about the eye pain - when my eye is really sore the eye often looks worse (more sunken).
I am booked for surgery next month but I am having a wee panic on whether its a good idea - I don't have double vision and that is a risk from the surgery. But I would like to get rid of the eye ache!
I just wish there was more information out there to help the specialists and us in the decisions!
Your November check will be roughly 6months following surgery hopefully you get more improvement before then.
Take care
anna02793 jess52607
Posted
Hi Jess - so sorry i thought my reply had sent but it doesn't appear to be here from weeks ago!
I was wondering how you are getting on and how things have gone for you since the surgery? Really hope things are going better for you now?
jess52607 anna02793
Posted
Hi Anna
Nice to hear from you - Yes I had my surgery exactly two weeks ago and so happy I made the decision to do it - everything went well and so far the eye pain appears to have gone (but early days fingers crossed) The eye according to my family is 100% back to normal - I am so relieved.
How are you getting on? is it this month you have your follow up appointment ? I hope you have had more improvement since we last spoke.
anna02793 jess52607
Posted
That's so great to hear Jess - so pleased its gone so well for you especially when there is so much anxiety about having these operations done. And fantastic about the reduction in eye pain - amazing!! do you mind just letting me know what they did to resolve it?
Well done for being so brave - must be a relief to not have it on your mind now. Wishing you a speedy recovery 😊
anna x
jess52607 anna02793
Posted
Hi Anna
yes I am very relieved to have it all over - the surgery was an orbital floor implant - weeks prior to the operation my surgeon made a 3D model of the skull from my CT scan and then he moulded the titanium implant to mirror the undamaged orbit - he said on the day it fitted like a glove - because the implant is pre moulded specifically to me it reduces the need to be put in and then removed for more shaping which reduces scaring, bruising and damage - they also normally do a CT scan in the theatre before stitching up to make sure the implant is in the right position to avoid a second surgery - but he was so happy how it fitted he decided it wasn't necessary - sorry about the long winded reply ! how are you getting on ?
anna02793 jess52607
Posted
wow!! that is incredible!! and a great show of enormous trust and bravery too - well done! knowing what its like to have this condition i know how much courage that must of taken.
I'm ok generally altho are times the ache is awful mainly when not had enough sleep. i have a repeat ct scan and follow up due end of the month.
Do let me know how things go with your recovery 😊 xx
jess52607 anna02793
Posted
Thanks heaps Anna, I definitely feel I have made the right decision for me. I really hope your check up goes well and they find a solution to your eye pain (it gets very tiring!!) I also have a check up at the end of the month - I'm expecting it to go well. take care and please let me know how you get on 😊
jess52607 anna02793
Posted
Hey Anna I was wonder how you are getting on and if you have made any decisions
anna02793 jess52607
Posted
Hi Jess -
I'm ok altho feel I'm having more eye ache. my repeat scan unfortunately shows no improvement to orbital bone after the surgery i had 9mths ago. will be seeing doc again about options.
how are things going with you? really hope you are getting on ok after your surgery and that your follow up went well? x
jess52607 anna02793
Posted
Hey Anna
I'm so sorry to hear there was no improvement to your orbit and the headaches must be frustrating , you didn't mention the eye ache has that settled ? I hope so.
I am going well it's as if I've never had the implant - my eye ache has settled and it's now very rare I feel it - I have no numbness or pain due to the surgery - I hope you get the same results one day - hang in there and I really hope the implant fixes your headaches .
take care x
jess52607 anna02793
Posted
Hey Anna
I've just reread your message and realised that I got it completely wrong about the eye pain !!! clearly I had too many wines that night! I really do feel that the eye pain is linked to the condition - I hope your specialist considers the surgery for you and that he has the 3D technology - let me know how it goes