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

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,

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

Thanks for the update....I want to hear the good and the bad !

You know.......I had a sled 'wreck' when I was about 6....in Alaska and my brother (7 years old then me) took me to the hill everyone was coming down. One time I beat him to the top of the hill and down that hill I went all by myself ! I can actually remember every detail of that ride.......hit a wood stump head on with my forehead and then flipped over and hit my head on a house ! lol

I still remember the look on my mom's face when she opened the door and I was in my brothers arms with blood in my eyes !
Dang....does that have anything to do with my sinus issues now ?

A teenager with nose surgery....not cool was it ?

Glad to hear your SFN is stable. I could only go to 1800 mg a day on the gabapentin and that's where I'm still at.
That's great that you are able to reduce it without the SFN acting up. I knew mine was helping when I had to go off of it to try something else. Was on the new med 3 weeks....off 3 weeks before going back on the gabapentin and it was horrible. Pain was constant until I got back on the gabapentin.
The only good was that at least I knew the gabapentin was working !

I think it's great you're at 300 mg a day. Do you take that at night before bed ? Just curious. I take 600 mg 3 times a day. And I found out I can't use the 600 mg tablet......I have to use the 300 mg capsules.

Keep in touch my friend

Debi

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

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

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.