NeuroTalk Support Groups
Page 2 of 3 1 2 3
Show 40 post(s) from this thread on one page

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Just Checking On Everyone (https://www.neurotalk.org/peripheral-neuropathy/245890-checking.html)

St George 2013 03-21-2017 11:18 AM
Hey en bloc :)
 
Quote:
Originally Posted by en bloc (Post 1239155)
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'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 :D

Debi

KATO 03-21-2017 12:46 PM
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.

Littlepaw 03-22-2017 04:57 PM
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:

en bloc 03-22-2017 09:31 PM
Quote:
Originally Posted by St George 2013 (Post 1239195)
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 :D

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.

St George 2013 03-24-2017 11:13 AM
en bloc
 
Quote:
Originally Posted by en bloc (Post 1239279)
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 !! :eek: and Ouch again !!
But I woke up this morning thinking I might live so here I am :D
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 ! :D

Debi

St George 2013 03-24-2017 11:37 AM
Hey there Ragtop !
 
Quote:
Originally Posted by Ragtop262 (Post 1239093)
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.
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

St George 2013 03-24-2017 12:01 PM
Hello Joanna :)
 
Quote:
Originally Posted by JoannaP79 (Post 1239131)
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

PamelaJune 03-26-2017 04:57 AM
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:

Quote:
Originally Posted by en bloc (Post 1239007)
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?

echoes long ago 03-26-2017 11:02 AM
Quote:
Originally Posted by PamelaJune (Post 1239450)
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

JoannaP79 03-26-2017 03:06 PM
Quote:
Originally Posted by St George 2013 (Post 1239366)
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.


All times are GMT -5. The time now is 11:10 AM.
Page 2 of 3 1 2 3
Show 40 post(s) from this thread on one page

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.