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.

I do remember having terrible tonsil infections when I was young. I had my tonsils and adenoids out when I was 10 and it seems that I traded those infections for sinus infections.
I really don't know why I have sinus issues. I've never had the allergy tests. But I do smoke (trying to quit) and have 2 inside dogs and 1 inside cat.

I don't think the pain and sinus pressure I have has anything to do with my SFN but who knows ?
Have you seen your regular doctor about the pain/pressure in your face ? I'm thinking that looking up your nose, in your throat and in your ears would determine if you have a sinus infection or not.

Did you get the written results of your MRI that showed the shadowing in your face ? Might be worth getting that and see what it says.

Can I ask which type of consultants you are seeing now ?

I know how miserable that pain/pressure is.....and yes my SFN flares every time I have an infection. That leaves me laying in bed moaning and groaning until I start feeling better. And I'm serious ! Moaning and groaning !

Please let me know how you're doing.

Debi

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.

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

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

I'm going to try the brand Neil-med you recommended. I'm g.o.i.n.g to try...lol

I've seen commercials on the balloon sinus surgery but not sure I would be a candidate. She, the "horrible" doctor, said there was tissue in there that needed to be taken out (?)

I think I've had the tests to detect immune deficiency but not positive.
Can you give me the name of the blood test/tests and I'll look at the blood work I've had done ?

I've also been dx'd (by my dentist and then confirmed with CT scan) that I have Eagle Syndrome on both sides. Worse in my right which is where all my ear problems seem to be.
I'm going to start a new thread on Eagle Syndrome to see if others have experience with this dx.

Thanks en bloc....always a wealth of info from you my friend

Debi

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.

Sorry I've been away a few days....really wanted to answer everyone and will do so as soon as I can.

Had my 2nd massage (1st one in Oct 2016).....Wednesday and it knocked me to my knees ! Ouch !! and Ouch again !!
But I woke up this morning thinking I might live so here I am
Last time (after the pain from massage stopped) I had a really good two months with my neck and shoulder muscles before they started knotting up again.

Ok.....don't think I've had the IgG and subclasses done unless it was when this was first dx'd 4 years ago.

Here's what my Doctor said on the lab report:

Autoimmune labs are normal. No signs of autoimmune disease

CRP (inflammatory marker) is improving

No protein in the urine

No signs of parathyroid disease

The tests she ran for this were:

PTH-Intact
C-Reactive Protein .......(5.7 high....normal range 0.0 - 4.9)
Ur Creatinine
Ur Microalbumin
Ur Nicroalbumin Creatinine Ratio
ANA.......................... (Negative)
Rheum Fact Interp ......(9.0 normal......normal range 0.0 - 13.9)

Didn't give the PTH or UR results here...all were normal.
Should I ask for the IgG tests to be done in your opinion ?

I'd sure like to know if I have anything else going on.

Thanks and I won't make this one any longer than it already is !

Debi