Just Checking In...
 

It's been a pretty rough month for me. I've been visiting here daily as usual...but have been pretty quiet due to being not in the best shape and both physically and emotionally drained.

I was scheduled to get the DRG stimulation trial on 11/14...but got a call a week or so before saying that insurance would not approve it. So I started the process of gathering all the info I would need for putting in an appeal on that. The earliest I could get in to see the doctor was 12/1 to find out what the next steps would be...so it was a lot more waiting.

I applied for LTD at the end of September or early October and everything for that was due 11/18. That was frustrating making tons of phone calls every week to make sure everything got to LTD in time...and then I heard nothing. Monday 11/28 I got a letter from LTD dated 11/18 saying they still haven't been able to make a decision (they have everything they need) and that they would contact me within 10 days at the latest. So still waiting to hear what is going to happen with that.

I saw the neurologist at the end of October and she confirmed that I also have small fiber neuropathy in addition to the CRPS...but said that the pain doctor is the one who will treat me for all of it so there's nothing she could do for me. She DID give me some interesting information though. I had an MRI done in May or June of my neck and when I saw the doctor (who was covering for my regular pain dr that day)...I was told it was basically normal and just showed some signs of tendinitis. That's what I told the neurologist and she gave me a copy of the results and told me that's NOT what it says. It says I have two bulging disks and a small herniated disk between. When I fell off the ladder last year that's pretty much exactly where my neck hit the metal bars I landed on...so I feel like this may be contributing to the next/shoulder/arm pain I've been having that I have told EVERY doctor I've seen since the fall that it didn't feel like the RSD (but what do I know...I'm just the one WITH the pain). My B12 and folic acid levels were also REALLY low...so I've been seeing my regular (family practice) doctor for B12 shots every 2 weeks for the past 6 weeks now. The neurologist seemed to think that would make a huge impact on my energy levels...it hasn't...but I still have a few more shots to get in the next month and then they're going to recheck my levels.

So...all that leading up to my doctor's appointment yesterday. I brought up the MRI results and they have decided to try doing a series of cervical epidurals and see if that helps the neck/shoulder/arm pain. If it does then I'll get one every 3 weeks (total of 3 shots) and then they'll have me do some physical therapy to build up my arm strength and maybe I'll be able to use the walker again. BUT...even better news I think...is that the only reason insurance didn't approve the DRG is because the study hasn't been PUBLISHED yet and that's supposed to be happening in December or January...so the doctor's office is going to just resubmit the procedure and get it scheduled after that happens. So by the time my epidurals are done...I may be getting the DRG trial and who knows...I may not even NEED the walker after that! I know I should be a little more reserved in my excitement because it may not even help...but I have to tell you it just makes me feel a million times more positive just to know that we are moving forward with treatment and that there's hope.

My pain is still just as bad as ever at the moment...but I really feel like better times are ahead. This has been an exhausting month with birthday parties and holidays...with more of that ahead this coming month too...but December 29th is the day I have my first epidural scheduled and then hopefully I have several exhausting months of treatment and physical therapy to look forward to...followed by improvement in my function and pain levels.

Hope everyone is doing well. Even if I'm not posting much...I'm here and reading everyone's posts daily. Keeping you all in my thoughts always.

Oh boy, that all really sucks. :( Not much great news in there... but we gotta keep hope alive, that's true. :)

Hope you will do better with the shots. Good luck!

Prayers
 

Please hang in there Catra..it sounds like you have been through so much already! I will put you in my prayers tonight!

It's definitely been not my best month/year ever...but I keep hanging in there and at least they are going to TRY something now and I am feeling good they are on the right track. Thank you for your support.

Thank you. I'm definitely not giving up. I've had pretty rough patches before and have always come out the other side a stronger person. It's been a little harder this time becaue now I have a little one (just turned 2)...but she's reason enough to keep me going and to keep fighting to find a better treatment option. :)

Dear Catra,

My goodness your plate has been overly full! No wonder you haven't been posting any. I'm sorry you've had to deal with so much at once. That sounds exhausting.

I am so glad that you finally got the right interpretation of your MRI. That must've felt very validating. It is so frustrating when you know in your heart that something is wrong and no one can figure out what's going on. What a blessing that you can now move forward with treatments that will hopefully help (and thereby calm your pain overall). I have gotten to where I ask for the report on anything I get done. You just never know when something is going to be missed for whatever reason. It's also nice to have it in your record to take to consults without having to wait for it to get transferred over. Does LTD have a copy of the actual MRI read? It seems like a real game changer. If it (God forbid) gets denied perhaps you can appeal based on that change in diagnosis.

That is good news on the DRG stimulator. Maybe in some weird way this is how all this needed to happen. If all the focus was on the trial for it coming up your neck issue may not have been noticed in the same way or could've complicated the results. Now you'll have a clearer picture of what's happening.

I hope your darling daughter had a wonderful birthday has a magical holiday season. Stay strong, as you always do. We know you'll get through this!

Sending much healing love and many hugs, :hug:

Thank you...it definitely has been very hectic and stressful the last month or so. Hoping now that I can get a bit more rest in these next couple weeks leading up to Christmas. If I hear any good news from LTD then that will allow me to rest a little easier...but in the mean time I am trying not to worry about things beyond my control and focus on the things I can. :)

That is always a good attitude to have, but still we worry, don't we?