I would like to check in with this group to see if there has been anyone who has uncovered helpful coping tips for the horrible side effects caused by nasal/sinus surgeries? And or to bring awareness to these dangerous surgeries.
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@nrd1, I had a consult with my Mayo ENT doctor about getting a septoplasty to fix my deviated septum and possibly help my breathing. He was very thorough in explaining the risks vs benefits which made me thing a little more on the surgery which I'm not sure I really want to do now. It is a big decision. Are you able to share a little more about your surgery and what side effects you are having? It might help others to know and maybe they will have some suggestions based on their experiences for the side effects you have.
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@johnbishop-Hi John. Thank you for asking. I think what you had working in your favor when you met with a Mayo ENT is that they are paid in salary and not by surgeries performed.
Most ENTs go over some of the major risks, but not the more common risks to patients.
The nose is a highly subjective area. ENTs know this. No ENT can visually make adjustments to your nose and know what you will be feeling or how you will be breathing. When dealing with as much as millimeters, there is just no way. Every surgery brings scar tissue. The nose is the worst place you can possibly have scar tissue.
The risks are far too many for the little to no improvement these subjective based surgeries might provide.
To work properly the nose needs to have tight junctions. When these areas are altered and opened, your airway is changed in a way that can not be reversed. This damages your entire respiratory/pulmonary reflex.
Causing damaging effects to the autonomic nervous system.
John-could you share the risks that your ENT covered with you?
@nrd1, My Mayo ENT basically told me surgery can end up making it worse and end up requiring an additional surgery if there are complications. He went over pretty much the same thing as is described on the Mayo website for septoplasty risks - https://www.mayoclinic.org/tests-procedures/septoplasty/about/pac-20384670
Since my deviated septum is not life threatening but more bothersome for the quality of life we talked about some options that could improve the breathing. What we are trying now that is working pretty good for allowing me to breath better through both nostrils is a twice a day nasal rinse (morning and evening) followed by 2 sprays in each nostril of a Mayo Clinic proprietary nasal spray. The nasal spray contains Mometasone for inflammation, Ipratropium to reduce nasal drainage and Diphenhydramine an antihistamine to also help reduce nasal drainage. I'm into my 3rd month of using it now and it is working much better than I expected.
Are you have nasal problems from a surgery?
@johnbishop-you are very fortunate you had an honest ENT whom told you it could make your situation worse.
Knowing what I know now, and hearing from so many people who’ve suffered bad outcomes, I can’t believe these surgeries are still offered.
They should be saved only if someone has been in an accident and has broken their nose and require reconstruction.
Yes. I have experienced irreversible damage. Neurologically, functionally and systemically now.
I should mention that I only found this forum when trying to find answers online, as how to cope and manage effectively. When I reached out to Mayo Clinic and explained the issues. I was accepted through Neurology first, as the ENTs knew nothing they had do offer could help. Patients can not trust the statistics that ENTs provide as “rare” occurrences as most surgical damage or “failed” surgery is never truly captured. I know my surgeon did not acknowledge my post surgical condition and started referring me out to other specialty’s. I am just one of many cases not included in the “rare” statistics. Which is why more awareness needs to be brought to the public when looking for advice before surgery. Surgeons only report the happy outcomes to their stat sheet.
I think the ENTs at Mayo, over the years have probably seen so many cases of people from all over looking for answers from unnecessary surgeries, that they most likely do their best to persuade people as they know medical management/therapy is truly the only thing can help nasal/sinus issues. Years and years of mis-information is now catching up with the ENT community. They are just now admitting that they need to be better at understanding how immunology plays a role in the nose and that these are systemic issues and not anatomical issues. Hence all the “failed” or need for “revision” surgeries.
I feel I have to add my voice to this issue. I was having sinus problems and “everyone” had an answer, including my GP. “You need washouts, you need to address your deviated septum, etc etc.” I also was lucky enough to be referred to a consultant who was extremely reluctant to intervene. I was initially a bit annoyed but, when I pushed for answers, he addressed the fact that surgery had limited potential benefit and a fair bit of risk. He even said that at times when patients say they feel better after surgical intervention, he was not entirely convinced. He said in my case he would intervene surgically only if the was so much blockage I couldn’t use the steroid sprays. And you know, even though I was being told he couldn’t do anything for me, except advise about non surgical approaches, I felt so much better and in control. And I really agree with @nrd1 that many of the “old” well intentioned surgical approaches were based on logic and engineering but with a complete lack of understanding of the complexity of the nose and sinuses. Hopefully they are learning.
I suppose I should add that each case is individual and what is the best approach may differ. But there does seem to be a lot of overlap.
@bride-thank you for adding in your comments. And it is great to hear that you had met with someone who was honest.
• The only way people or perspective surgical patients will get this information is by sharing it.
Many patients are unaware that when they get a referral or ask for a referral to an ENT that they are meeting with a surgeon. And that by the time you end up there, they are prepared for you to be ready to elect for a surgery.
•There is a code of silence in medicine. Especially in the ENT community, as the procedures that they offer make them a lot of money in a small amount of time. With little to know evidence that they actually work.
•Just to shed some light to help understand. Take a septoplasty for example. If you look at the “risks” that John provided from Mayo. Perhaps it would help to understand how a “hole” in the septum happens and how bad that can be. The skin is cut and lifted away from the septal cartilage. From there, the cartilage is shaved and cut in a chisel like way. The ENT has no way of telling if your cartilage is thick enough to withstand the chiseling and rocking back and forth of this cartilage, which is what shapes and holds your entire nasal cavity. If a hole is punctured through, which is very common, this is very hard to repair. Their are only a handful of doctors who are comfortable truly repairing this. So now you are left to find someone who can help with a new issue that you never had.
•I have spoken with a very reputable ENT at Stanford whom admits that half of the time, they do not even know how or why these procedures work. He also informed me that ENTs do not fully understand how the nose even works/functions. They are trained to “remove” things that look like they shouldn’t be there. They are not educated on the inflammatory/immune response, nor the cross over of the cranial nerve innervation to the neck and face. And the last thing their are equipt to assess is facial pain.
90% of the time the only doctors that should assess/address issues associated from the neck up should be a GP/Neurologist/Allergist/Dermatologis
This selection of doctors will help get to the root cause which is systemic and not driven by anatomy.
Much of this is genetic predisposition and how your body responds systemically. It has to be addressed from the inside.
I feel I need to respond here just to say that not everyone has a bad outcome, and that sometimes the surgery is necessary.
Age a teen, I had a badly broken nose, and the GP said we needed to "keep an eye on it." In my 20's and 30's I had a constant round of sinus, ear and throat infections. After over 2 solid years of antibiotics, sprays and exams, at 40 my ENT said "Enough - the sinus cavities are now completely filled with nodules that are probably all infected. The side with the deviated cartilage is so narrow I can no longer scope it. We need to do surgery." I had the very painful surgery and recovery, but he was able to clean things out and reset the septum, and I had no complications.
Fast forward 30 years - I can count the number of ear and sinus infections since the surgery on one hand.
The takeaway - If anyone asked for my opinion, I would tell them it would be MY choice of last resort, but in the end, I am very happy I had it done. It improved my health immensely, so the benefit was worth the risk.
Has anyone else had sinus surgery that turned out well?
@sueinmn-Hi Sue. Thank you for responding and sharing your experience.
As you can see in one of my posts I state that these surgeries should be reserved for those who have had an accident which has broken their nose, requiring reconstruction.
There are plenty of success stories you can find from doctors or the small 10% of people with whom the elective surgeries were deemed necessary.
This post is to create a fair balance to share with people what is often not shared in honest and true form in the medical setting. For those who are recommended/presented these surgeries for minor nuances that have nothing to do with anatomy being the cause.
This is to make people aware that there is so much more to the nose that is responsible for some of their issues outside of anything that can be addressed with the ENT algorithm of Antibiotics/Topical Sprays/Surgeries.
Only 10% of patients who present to an ENT ever truly “need” or will benefit from surgery.
I have attached 5 journal/articles which share clinical trials from otolaryngology. These are articles from ENTs themselves. Just to be fair. So you can see that ENTs also know this.
Thank you for your post. I had a horrific sinus surgery I did not even sign up for, along came alot of nerve pain and empty nose syndrome. Rinopenia may help with dryness. I'm in low light laser therapy now. There is help by stem cells but mainly out of the US. There is much research being done and Ukraine is leading at their clinic.
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