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Old 03-18-2017, 12:48 PM   #1
St George 2013
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Hey my friends ! Just wanting to see have everyone is doing.

My life is like a roller coaster.....good then bad, good then bad and on and on.

I actually think I would be feeling a lot better and a little more stable with my SFN if I could get rid of my sinus/ear problems. My PCP ordered CT scans of my sinuses and right ear/neck area.

She sent me the results and suggested I see an ENT about possible surgery. I was stupid and went to an ENT close to me that I had used about 10 years ago and didn't like much. Thought she might have mellowed with time. No such luck. She was so horrible, so horrible that my daughter has filed a claim on her with the medical board.

I can tell you....I DO NOT WANT SINUS SURGERY if there is any way around it. Scares the heck out of me.

Even when my sinuses are halfway behaving I still can't do what I want.....go to the stores, cook much but I have been cooking more. But after about 2 nights straight with helping my daughter with that I'm in the bed moaning the next day and miserable. But I still do it....sometimes it's worth it and sometimes NOT.

Ok everyone......please just let me know what's going on with y'all.....would love to hear from anyone that would like to share.....I know a few of you that I will absolutely hear from and I want to thank you in advance....what a great group this is !

Debi from Georgia
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Old 03-18-2017, 11:47 PM   #2
en bloc
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I can tell you from sinus surgery experience (twice) that you want to avoid this at all costs. Check out another ENT. There are good ones out there that might find an alternate route for you. All depends on what they say is wrong.

It's been quiet on this board, so I hope that means everyone is doing fairly well...so to speak.

I'm plugging along just fine...as fine as I can be. In the Outer Banks of NC on vacation at the moment. Nice that I can enjoy things like this again. Even went horseback riding (walking) on the beach (bucket list item). I am now involved in equine therapy at home to help strengthen core muscles and legs (very helpful so far)...and loving horses and being around them helps my emotional state. I also help out with the special needs kids and others that come for therapy. Very rewarding.

What do they say is wrong with your sinuses?
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Old 03-19-2017, 07:51 AM   #3
St George 2013
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Talking Good morning en bloc :)

I agree it's been very quiet on this board and that's when I decided to come on and see how everyone is doing.

Oh wow.....the Outer Banks ! Such a beautiful place.....was there once visiting family that lived there at the time. I love horses but was never much good at riding but I always liked washing, brushing, feeding and so on. Some friends had horses when my kids were young teenagers and we had some awesome weekends at their house. Good memories.
I bet the therapy is helping and so glad to hear that.

Walking on the beach.....just heaven isn't it ? We'll be going on our family vacation at the end of May and I'm hoping my feet behave with the help of some steroids.

You know.....I never thought to put my CT results on here and ask for help !

My sinus info: I've only been on short rounds of antibiotics and I have 4 bad sinus infections a year and have for years but this time it just didn't seem to let up.
The ENT I went to immediately said surgery but had very, very little interest in explaining anything to me. Didn't even want to let me think about it....yes or no right then !
There is a doctor I want to see but she's in the process of moving to another practice. Right now I'm stable and seem to be keeping the worst of it at bay. But I know that won't last.

Since then I have read up on what can be done prior to surgery to try and get this cleared up. Long term antibiotics, prescription nose sprays, over the counter sinus meds (which I've been taking the whole time...using different ones here and there trying to find one that works best for me).

Here are the CT scan results: Any comments would be greatly appreciated.

I'll start with the Impression first:
1. Moderate chronic sinusitis of the ethmoid and maxillary sinuses
2. Minimal chronic sinusitis of the frontal sinuses
3. Significant compromise of the left ostiomeatal complex
4. Moderate nasal septal deviation to the left

Now findings:

Frontal sinuses: Minimal mucosal thickening
Ethmoid sinuses: Moderate bilateral mucosal thickening
Maxillary sinuses: Polypoid mucosal thickening in the right superior medial sinus. mild bilateral mucosal thickening. No air-fluid levels

Sphenoid sinuses: Normal
Ostiomeatal units: Narrowing of the left unit
Nasal septum: Deviated to the left in the middle third


I can breath through my nose and even when my infection is full on I can still breath through my nose which the ENT said wasn't possible (!?)

This CT was also taken about 2 weeks after I ended a treatment of antibiotics and was just starting to crank up again....lol

Ok friends......still want to know how everyone is doing plus.......any experience with sinus issues ?

And en bloc......what say you on my scan ?

Take care everyone !

Debi
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Old 03-20-2017, 06:56 AM   #4
glenntaj
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Default I have had considerable sinus issues--

--over the years; in fact, my most recent CT scan of the area, back in December 2015, is not all that different from yours, with the varied mucosal thickening, evidence of inflammation, and even the deviation of the septum. Of course, it's probably worth mentioning that my nose has been broken, in various athletic pursuits, on 4 different occasions over my late teens and twenties. (All I ask is that it points in the right direction.)

I too have tried various medication rounds--sprays, pills, antibiotics when things are bad, which do help at least temporarily, if not permanently. My CT scan does say that the configuration up there DOES predispose to likely repeated bouts of sinusitis, but my ENT is much slower with the knife, apparently, than yours is--he says he would only recommend surgery if I couldn't breathe or couldn't clear up intermittent exacerbations.

In the meantime, the most effective day to day help has been the good old neti pot with warm saline water, which I try to do religiously and more often during allergy season (which is getting longer and longer with climate change). But I admit that it's a process that is ongoing and imperfect--my sinus problems are relapsing and remitting in nature, and never completely gone.
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Old 03-20-2017, 08:54 AM   #5
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Hi Debi,

I also have had significant sinus issues since a toboggan vs tree accident when I was in high school....... (After surgery to repair the busted up nose, it looks fine from the outside - but not so much on the inside.) I haven't had much luck with any of the medications, so generally just inhale steam from a rag soaked in hot water when the occasional sinus headaches come on. That usually opens things up for me.

As for my PN, things are still pretty stable. I had an acute onset of SFN symptoms in July of 2014, but things stabilized and haven't really gotten any worse in over two years now. Just praying it stays that way.

I've been doing a very slow taper in my gabapentin dosage over the past several months, and my symptoms haven't really gotten any worse. I've gone from 1800 mg/day to 300 mg/day - and will hopefully be able to get completely off over the next several weeks. But having been on and off of gabapentin before, I know that final step down to zero can be the hardest.
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Old 03-20-2017, 12:28 PM   #6
St George 2013
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Default Hey glenntaj :)

Quote:
Originally Posted by glenntaj View Post
--over the years; in fact, my most recent CT scan of the area, back in December 2015, is not all that different from yours, with the varied mucosal thickening, evidence of inflammation, and even the deviation of the septum. Of course, it's probably worth mentioning that my nose has been broken, in various athletic pursuits, on 4 different occasions over my late teens and twenties. (All I ask is that it points in the right direction.)

I too have tried various medication rounds--sprays, pills, antibiotics when things are bad, which do help at least temporarily, if not permanently. My CT scan does say that the configuration up there DOES predispose to likely repeated bouts of sinusitis, but my ENT is much slower with the knife, apparently, than yours is--he says he would only recommend surgery if I couldn't breathe or couldn't clear up intermittent exacerbations.

In the meantime, the most effective day to day help has been the good old neti pot with warm saline water, which I try to do religiously and more often during allergy season (which is getting longer and longer with climate change). But I admit that it's a process that is ongoing and imperfect--my sinus problems are relapsing and remitting in nature, and never completely gone.
Ouch ! Broken nose 4 times ? Glad you were young when that happened !
And so glad to hear it points in the right direction

Thanks for your info on sinus issues. I'm thinking how you've treated yours is probably my best bet. The doctor I want to see (my daughter saw her and liked her very much) is changing practices and won't be seeing patients until sometime in April. I'm going to try and track all that info down this week and see if I can go ahead and make an appointment.

I just cannot bring myself to use a neti pot.....the thought of it just freaks me out ! I do take steamy showers but I think if I'll do the towel over the hot water I'll have better success.

I know one thing...when I have a spell with my sinuses my SFN pain is off the charts. It's a double whammy.

Debi
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Old 03-20-2017, 12:46 PM   #7
JoannaP79
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Quote:
Originally Posted by St George 2013 View Post
Ouch ! Broken nose 4 times ? Glad you were young when that happened !
And so glad to hear it points in the right direction

Thanks for your info on sinus issues. I'm thinking how you've treated yours is probably my best bet. The doctor I want to see (my daughter saw her and liked her very much) is changing practices and won't be seeing patients until sometime in April. I'm going to try and track all that info down this week and see if I can go ahead and make an appointment.

I just cannot bring myself to use a neti pot.....the thought of it just freaks me out ! I do take steamy showers but I think if I'll do the towel over the hot water I'll have better success.

I know one thing...when I have a spell with my sinuses my SFN pain is off the charts. It's a double whammy.

Debi
Debi, can I ask whether it's been confirmed what the sinus issue is connected to?
This week I have developed the worst sinus pressure/pain and like you said my sfn has flared up terribly. It's the worst it's been as every part of me is burning badly all at once.
The sfn pain is terrible in my face now and flushing alot.
Is this sinus pain /pressure just part of the sfn?
I don't know if I have the strength to try find someone to look at my face. Is it worth it? I'm seeing 4 consultants at the moment for each body part affected by everything.
About a year ago I had MRI of head and the neuro said there was shadowing in my face on the scan. Then that was the end of it.
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Old 03-20-2017, 01:42 PM   #8
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Default Hi Everybody!

Thank you Debi for your post. It has brought me out of my hiding place.

I have not been very active here for a few reasons, the main one being I am not sure where I'm at. I'm not good with not knowing and it's causes me to go from cautiously optimistic to depressed in about 0-60 seconds. The other reason is I often feel like an idiot for my surgery choice and I've not wanted to admit it out loud. I also know so many of you have it much worse then me and I feel strange sharing my problems but here goes.

As most of you know, on August 9th I had a "Minimally invasive" spinal surgery. I was told 3 months and I'd be basically fine.(Well, wasn't that some joke?) After the surgery the surgeon told me he wasn't able to accomplish what he wanted but it would be fine regardless. My surgery was supposed to be 3 parts: Decompression, realignment and fusion. He was unable to decompress because the "Cage" he needed to insert that contains the BMP sponge fusion material would not fit due to a number of things I feel he should have realized since he had access to my MRI's, etc. Anyway, He put me on an opioid, upped my Gabapentin and sent me on my way to come back and see him in 3 months. (I also had a 2 week follow-up with a nurse-practioner.)

Meanwhile, I had been on the opioid for 2+ months (just 1 at night.) and wanted to wean off before my 3 month appt. I did and ALL of my symptoms were still there having been masked by the drugs. I went for my 3 month checkup very depressed and the doctor THEN told me it would just take longer to get my "great results" because he had been unable to do the decompression but everything looked good. He cut the dose of the opioid to 3/4 (1/4 am and 1/2 evening.)

Recently I went for my 6 month check up and according to my x-ray the fusion is taking well and there is more room for my nerve root. Whether it will be enough remains to be seen but the doctor is optimistic. He still has me on the opioid so it's hard to know if the surgery is helping or it's the drug which is why I'm not sure where I'm at. I will say that the last few weeks I have felt I'm stronger and the burning in the evening that I've had even with the drug has lessened. I just am afraid to get too hopeful. Plus the getting off the opioid is not something I'm looking forward to.

So, there you have it. I'll try to be more active in the future
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Old 03-20-2017, 09:51 PM   #9
en bloc
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Debi,

Once you use the neti pot (I prefer the Sinus Rinse by Neil-Med system for more pressure/cleaning), you'll run right to it at the slightest sign of problems!!

Have you every been checked for immune deficiency? Those with repeated infections should have some simple blood work done to make sure that there isn't a subclass deficiency. Sinus infections are hard to battle to begin with, much worse if your immune system is compromised in any way.

Being that I am immune deficient and have drug reactions to most antibiotics, my new ENT uses a compounded mix of antibiotics, steroids, and antifungal meds mixed in the since rinse...to attack the infection directly vs via the blood stream. Frankly, it has worked better than any antibiotic I've used. Of course, it requires you to use the rinse, but as I said, you'll feel so much better after using it, that you won't mind. EVERYONE feels the same way at first about flushing out your sinuses by shooting water up your nose...but once you do it a couple times, you'll be telling others not to worry!!

There is also a new procedure with sinus surgery that is like angioplasty...but in the nose. Literally, it involves opening the airways with balloon like procedure. This allows for better drainage and therefore better control of your infections. just a thought.
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Old 03-21-2017, 07:55 AM   #10
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I take a generic version of Mucinex morning and night to thin my very thick mucus (due to my dryness syndrome).

I also flush my sinuses with a saline rinse every night and use Nasacort to spray my sinuses as well.

I don't have sinus infections, but if my nose is in the least bit blocked I breathe through my mouth at night. And with my dry mouth syndrome I wind up with a mouth like something hard to describe: like a Brillo pad? Like a foreign object?

It is unbearable. So I religiously protect my nose from blocking with three different OTC products.

I'm sorry for the sinus infections others suffer. I had such unbearable pain with my first sinus infection, and could NOT believe when it didn't get better right away with an antibiotic. This was in my 30's and I was so naive about what awful things could happen to people.

Hugs, ElaineD
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