Just Checking On Everyone
 

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?

Good morning en bloc :)
 

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.

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.

Hey glenntaj :)
 

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.

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:mad:. 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 :hug:

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.

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

Hey en bloc :)
 

Hello Debi. I feel for you and your sinuses. My mom's is terrible. She has always had problems but she refuses to have surgery. My husband had some sinus issues as well. He had a deviated septum and other issues that I don't remember. The surgery was very painful for him, 25 years or more ago. He says it did help and he didn't snore until 30 pounds ago. Lol. He would have it again if he had to. It helped that much. I'm still waiting on my blood test to all come back and get the results. I surely hope a reason can be found for my SFN and autonomic neuropathy. Take care of yourself and I wish you the best. God bless! K.

Hi Debi,

I'm just a sometime visitor to the PN area but wanted to say Hi! :)
It is good to hear from you and everyone no matter the circumstances.

I have been doing pretty well all said. Still getting quarterly ketamine infusions for neuropathic pain. I'd like to stop them but don't know if that's possible, my doc says no end point. However, they allowed me to discontinue daily meds so I can't complain about that. My injured area still fusses at me but not like it did.

With less pain and more time out from my introduction to the CRPS board I have better functioning than I've had in some time and am working out a lot, taking trips and enjoying my teenager (yes really!) I still take piano which I started 18 months ago and swear that's helped re-wire part of my pain hijacked brain.

On sinuses, I am in the club of formerly having had loads of sinus infections. I get them rarely now after a cold or other heavy congestion event. The difference for me was getting allergy shots. It wasn't a fast fix but from one year to the next my sinus health vastly improved. I don't Neti well but can attest to the benefits of regular rinsing. I just happen to do mine when I go swim laps in a saline pool. It does help a lot and I can tell the difference.

I hope you find a non-surgical solution and feel better soon. We all wish you the very best.

Sending hugs and healing love, :hug:

The basic labs to check for immune deficiency would include IgG total and sublcasses (1 through 4), IgM, IgE, and IgA. Once these results are evaluated, then further testing can be done, if necessary. But these couple labs will tell you whether there is a deficiency in any part of the immune system.

en bloc
 

Hey there Ragtop !
 

Hello Joanna :)
 

Oh yes avoid surgery on the sinus if you can. My poor mum had sinus surgery years ago and the surgeon stuffed up the tube that links the ear, nose & throat up. She's suffered ever since & eventually lost her hearing in the one ear due to the botched surgery. The tube starts with an E but I can't think of it for the life of me. Get well soon :hug:

eustachian tube

Hi Debi,

Thanks for your lovely reply. I have left seeing my G. P as I have so very many issues relating to all this, I have lost the impetus. They keep finding nothing despite all of these symptoms. I am going to raise it with my G. P as I doubt the other professionals will deal with it seeing as it's another body part they don't deal with.
I see a cardiologist and a Neuromuscular guy at the moment but they will only deal with certain elements of my symptoms and then refer on for other issues. It's quite exhausting.
I don't know if I have an infection as I have no mucus or blockage, it's more severe pain and throbbing pressure.
I will chase up the MRI of my face. It was an MRI looking for M. S and he just happened to mention it but suggested it was insignificant.
Thanks Debi, it's so helpful to be able to get all this info on everyone's experience.

Hey pinkynose--Please stay out of your hiding place :)
 

So very glad you posted.......I feel like I've been hiding too but I always feel better on here than away. Sometimes I don't know how to say what I'm feeling or going through and sometimes I just worry about sounding stupid :eek:

But I think you should never feel wrong about sharing what you are going through. Better on here where everyone understands than not letting it out at all.

I'm sure you picked the surgery as your best choice to get better and maybe with the burning letting off some and you being a little stronger is a good sign of things to come for you.
I just can't imagine what you went through with that surgery....OUCH !
I'm just a big baby !

And when you go off the opioid then cut that little sucker (the pill) into tiny pieces until you are able to go off of it.

Unless there is a miracle breakthrough with SFN I doubt I will ever be off opioids but that's ok....it lets me get out of bed everyday. Without them I'd be laying on the floor in a fetal position asking someone to shoot me in the head. :D

Yep....me and you both need to stay more connected to NT. We are a great group together and this site has been too quiet !

Keep us posted and here's a soft hug for you ! :hug:

Debi

KATO ! Happy Tuesday, I think :)
 

Sweet Littlepaw !
 

Hey there PamelaJune :)
 

To Everyone
 

Happy Friday Miss Debi!
 

You are so very sweet! And yes, I did pick surgery as the best possibility of getting relief from at least some of my SFN symptoms.

I really relate to part of Healthgirl's quest. I, like so many of you am frustrated with the medical establishment throughout this experience. These past 3 years I saw doctors, did my own research, set up appointments with doctors I felt I needed to see based on information I gathered (much of which I got from members and posts on this forum) and went for different opinions even when that required paying out of pocket, as I was already pigeonholed as idiopathetic. Seeing a doctor who's "last name was Surgeon" was the absolute last stone I looked under. Btw, surgery wasn't that bad. It's the not knowing if it's going to work for me that's the bad part.

Thanks for your advice on getting off the opioid. Any suggestions about constipation? If you do please PM me as I don't want to bother members with such talk:winky: It all makes me think of that Amy Winehouse song "Rehab":icon_lol: Who know, maybe I'll need to stay on them. I take 3/4 of one now and can function pretty well so we'll see..... There's worse things in life and that is no life. Here's a nice soft hug for you :hug:

Hi Debi,

Thanks for your sweet reply. You are always so gifted at saying nice things and making all of us feel good. :)

I firmly believe the ketamine made a difference for me. It wasn't like flipping a switch but built over a period of ongoing treatment. The pain relief and improvements in swelling and temperature change allowed me to tolerate exercise better (which is known to help CRPS)and tolerate injections to my surgical area to reduce the amount of painful scar tissue I had. It's all really dovetailed to get me where I am now. I feel the ongoing pain reduction from getting boosters has helped my entire system calm down from being pain "ON" all the time. Sometimes I wonder if I still need them but stinging that starts to creep up when I near booster time improves after treatment so I guess I have my answer.

Ketamine is used in various forms for all kinds of neuropathic pain. There are even lozenges and nasal spray. If you're interested in trying low dose outpatient infusions there are some clinics in GA that give it.

Atlanta
Dr. Erik Shaw, Dr. Tobias Mussier
Shepard Pain Institute
Outpatient Ketamine Infusions
Shepherd Center | Spinal Cord & Brain Injury Rehabilitation
(404) 352-2020

Dr. Rollins, Dr. Sheahan
Southeastern Interventional Pain Associates
Ketamine infusions, Blocks, Injections

There is also a ketamine for depression clinic in Gainesville. Sometimes they do infusions for pain too.

I'm really glad I got the allergy testing done and am definitely more well than before. It wasn't pleasant, but considering what our idea of unpleasant is, it's pretty much nothing. The worst part is the intense itching that sets in after the scratch on a substance you're allergic to! Going for injections was time consuming in the beginning when it's building up but now I just go once a month. Some people can get the drops and take them at home but I was allergic to too many things for that to work for me.

Thanks for keeping in touch. I'm happy you started this thread. It's good to see everyone.

Have a beautiful weekend and keep laughing with that grandson. That's priceless.

:hug::hug::hug: