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

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.

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 !

Debi

The pain of the surgery plus worrying about my own pain mgmt. during that time really puts me off....I won't be doing surgery unless absolutely necessary.
Bless your mom's heart.....I know she's suffering with it !

I too have a deviated septum on the left side but I can breath through my nose and my nose is usually not stopped up even with a full on sinus infection....all goes down my throat.
I get headaches, burning behind my nose, pain and pressure on my cheekbones and just feel absolutely miserable....and then my SFN flares as well.

I also have sleep apnea and use a CPAP machine.

And your poor hubby...lol......I can't even remember 30 lbs ago !

I'll be glad when you get your test results too. Not knowing what I had drove me crazy !

Thanks so much for posting to my thread.....it's great hearing from everyone....whether it's good or bad.

Debi

I read many of your posts and you are so caring and sweet....lots of knowledge too ! I'm all over NT when I'm reading

I've looked around GA but can't really find ketamine treatments. Of course I might be looking in the wrong place.
Do you think the ketamine is the reason you are doing so well ? Is that a stupid question ?

GA is approving PN for MMJ oil (I think that's what it is) but the Governor will have to sign next. GA also doesn't produce it so not sure how I would handle that if I could find a doctor to prescribe it. I haven't asked my pain dr about it yet but they did do a trial a few years ago with a nose mist. I wasn't a candidate for the trial.

I do think Florida is a MMJ state now but need to look that up. It's only a couple hours drive to the line.

So glad to hear your good news ! Getting out and doing and going is so great !
I pray I'll be able to do that one day.
And yes, enjoying a teenager is a beautiful thing ! I have a 16 year old grandson and he just amazes me and keeps me laughing when he's here.

I've thought about being checked for allergies......is it bad ? The testing ?

There is a doctor I want to see but she's in the process of moving her practice. Hoping to see her at the end of April and I'll know more then. If I get an infection flare before then I'll just have to get my PCP to put me on an antibiotic which always calms it down.

Guess I'm writing books today instead of posting ! Forgive me !

Debi

Bless your mom's heart ! I'm not sure if I've gone into it here but my sinus issue also involves my right ear. It always gets infected when my sinuses act up. And my right Eustachian tube is blocked....has been for years and my hearing isn't good in that year. I had so many other problems going on I've not addressed it until now along with my sinus issues.

I can't pop either ear. If I open my mouth wide I can feel fluid coming out into my mouth/throat on the right side. Sorry....TMI ? From what I've read it's the fluid from the Eustachian tube.

My head is just a mess......if my husband was still here he'd have a field day with that statement ! lol

But I am going to pursue this.....it's time to get it straightened out as best I can.

Thanks so much for sharing !

Debi

I cannot tell you how happy all these replies make me !

Coming on here and seeing a new post just warms my heart.

Thank y'all so much and keep posting !

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 It all makes me think of that Amy Winehouse song "Rehab" 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

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.