Post Surgical Nasal Sinus Dysfunction/ENS

Posted by @seekinginfo @nrd1, Jul 19, 2021

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.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@nrd1

@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.

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So sorry for your pain and suffering. I have a minor problem with my nose such that when I talk for awhile, as teachers must do, my nose gets completely blocked and I can’t get any air in through the nose. It takes several hours to unblock. I was going to see an ENT doctor about this but after having read your testimonial I have changed my mind. Thank you for your advice.

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@willows

So sorry for your pain and suffering. I have a minor problem with my nose such that when I talk for awhile, as teachers must do, my nose gets completely blocked and I can’t get any air in through the nose. It takes several hours to unblock. I was going to see an ENT doctor about this but after having read your testimonial I have changed my mind. Thank you for your advice.

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@willows
I’m glad you have found this helpful.
I don’t discount that what you experience can feel irritating and cause frustration.

I will never discourage anyone from seeing a provider. But before you do, you have to well equipt with many many questions that you would never think to ask, which are extremely important.

As with any body part, throughout life, it changes as we change. The nose is a VERY powerful organ. People forget that it is an entire organ system connected to your respiratory and pulmonary system. It’s always best to work with your natural physiology than to change, alter, remove body parts of an organ.

Rather than see an ENT, I would recommend working with someone who can help address congestion in your nose and why it happens while you are talking.
This can be for multiple reasons, increase in blood pressure, heart rate etc…
Congestion is not a bad thing, it is an autonomic response. Some people feel it more than others is all. Typically congestion that happens with eating or talking is vasomotor rhinitis. Overly sensitive nerves in this area. People with vasomotor rhinitis also tend to have sensitive ears. Sensitivity is nothing to get surgery for. There are many ways to work with this NON medical doctor related.

There is also a New York Times best seller book out called;
Breath: The New Science of a Lost Art

It explains a lot about this important function and what all goes into its entirety.

At any time you feel frustrated and as you state by this minor problem, choose the opposite approach and recognize how much this area works for you non stop without issues.

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Rick, thank you for sharing this. You are so right of course. ENT are a bundle of medical negligence and medical trauma.
More awareness needs to get out regarding ENS. I did not even consent to my surgery, he said he would "drain" a mucus retention cyst but now, believe it was just a tiny bit of inflammation that sat in an expanded lower sinus dip in my maxillary sinus, he butchered me, removed my entire sinus wall, cut out my nasolacrimal duct and valve which backs fluid and air into a very painful eye. I have extensive nerve damage. He out-fractured then cut out my turbinate's, and lied about it all....for months, till i had scans done. Yes, it destroyed me and I have no idea why i left to live this way. I went to so many people for help, yes, they all protect each other. I had to travel out of town to learn what happened and its to late for law suit.

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@emptynose

Rick, thank you for sharing this. You are so right of course. ENT are a bundle of medical negligence and medical trauma.
More awareness needs to get out regarding ENS. I did not even consent to my surgery, he said he would "drain" a mucus retention cyst but now, believe it was just a tiny bit of inflammation that sat in an expanded lower sinus dip in my maxillary sinus, he butchered me, removed my entire sinus wall, cut out my nasolacrimal duct and valve which backs fluid and air into a very painful eye. I have extensive nerve damage. He out-fractured then cut out my turbinate's, and lied about it all....for months, till i had scans done. Yes, it destroyed me and I have no idea why i left to live this way. I went to so many people for help, yes, they all protect each other. I had to travel out of town to learn what happened and its to late for law suit.

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@emptynose

Have you been able to find any relief from any different modalities to cope?

When you walk quickly or move fast can your nasal cavity handle the quick rushes of inspired air?

I do appreciate you sharing your experience, although I know it’s traumatizing to re-tell. But these are very true and real and will only be repeated by patients. An ENT will never share these situations with anyone.

Mucous retentions cysts are very common in the Maxillary sinuses. Often sitting on the floor of the maxillary sinus. These are common findings in about 60% of the population. Those especially who have had allergies at one point in life. The only way most people would ever even know they had them is by getting a CT scan. Once that CT scan is in hand, an ENT can chose to review that honestly or use it as an opportunity to present it as something abnormal and to be removed.
This happens all of the time.

I too went to multiple ENTs post surgery to get answers. I finally found one willing to be honest. I asked him whom he would recommend who could possibly help…
His reply “I can’t recommend anyone because I would never trust anyone to touch my nose” from an ENT himself.

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@johnbishop

@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?

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John, I have a deviated septum that, after surgery years ago, was different but no better. I consulted with a few ENT surgeons and studied 'second surgery studies and the caution from surgeons that I could possibly be no better off with another surgery. (The first surgery left me with less cartilage, ergo less structural material.)

One of the best surgeons I could find, who advised against surgery, started offering the Vivaer radio-frequency protocol a few years later. I had that and it increased breathing comfort significantly with no cosmetic difference and no further loss of cartilage.

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Hello all - here is an interesting blog courtesy of @nrd1 who has chosen to take a break from posting, but shared privately with me. It's about phantom nasal pain and some of you may find it worth a read:

- - https://www.healthrising.org/blog/2019/10/14/phantom-nasal-congestion-chronic-fatigue-fibromyalgia/

Phantom pain and sensory issues that remain long after surgery has been correctly performed and the healing time has been met, ties in with Central Sensitization Syndrome. Dr. Sletten from the Mayo Pain Rehabilitation Center describes CSS in this video:

- https://www.youtube.com/watch?v=vJNhdnSK3WQ

I experienced an upregulation of my central nervous system and peripheral sensory input after having corneal and cataract surgeries. My surgeries were a success visually, however I began having unexplained, increased sensory issues in my eyes.

I hope this info has been helpful, and may be food for thought for some of your situations. Thanks to @nrd1 for sharing the blog. Have a great day everyone and keep your chins up. 😊

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@johnbishop

@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?

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Hi John,

I have been considering septoplasty, but would like to try the Mayo Clinic proprietary nasal spray. How does one procure it? Thanks!

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@danye1

Hi John,

I have been considering septoplasty, but would like to try the Mayo Clinic proprietary nasal spray. How does one procure it? Thanks!

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Hi @danye1, The 3 ingredients are Mometasone to reduce inflammation, Ipratropium to reduce nasal drainage and Diphenhydramine which is an antihistamine to help reduce nasal drainage. The product description on my prescription is MOMET 0.033% – IPRA 0.02% – DIPH 0.02%. I think an ENT doctor may be able to write an RX so that you can get it from a Mayo Clinic Pharmacy but you may want to talk with your doctor and/or give the Mayo Pharmacy a call. Here's the Mail Order phone information:
Phone: 507-284-4041, 800-445-6326
Mon – Fri 7:30 am – 6 pm
Sat – 8 am – noon
Closed Sundays and Holidays

Does your ENT think that part of your problem with the congestion may be related to rhinosinusitis. Since using the proprietary nasal spray along with a twice daily nasal rinse, I've switched to using the SinuSonic Sinus Therapy - https://sinusonic.com/. Each device lasts about 6 months and is about the same as paying for the twice daily nasal rinse supplies. I was surprised at how well it has worked for me. Here's a study that I found on the device prior to buying one. I've used one for a couple of years now and it has pretty much cleared my congestion as long as I use it once or twice a day. I normally just use it before going to bed.
-- A novel device combining acoustic vibration with oscillating expiratory pressure for the treatment of nasal congestion:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7317541/

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