Just opened my mail and got $1500 in medical bills from last month, not counting another $120/mo on prescriptions...
Today I had my 3rd follow-up with the pain specialist who still hasn't done jack sh*t towards managing the pain over the past 2 months. I've been on the same dose of meds for 3 mo and they're simply not as effective as they were, and the only person who actually helps is the neuro I have an appointment with on the 24th(I see neuro every 3 mo after he referred to pain specialist).
The neuro passed me to the pain specialist because he was out of ideas....
#1st appointment the pain specialist said stop drinking coffee and smoking. Scheduled MRI of neck/upper spine.
#2 appointment follow up from MRI, has me explain the problem I'm having, schedules CT and xrays of upper neck.
I do them and get $1200+ in bills after insurance pays their part. Insurance declines to pay for neuro appointment saying I didn't state whether I had extra insurance, I sort it out and they decline the same dr again who finally sends me final notice for $300 bill from that.
#3 Met with pain specialist 3rd time, today, and he says well your neck does have damage but dunno if that could cause pain where you feel it.
I ask about different meds or higher dose and he says I'm already on them and he'd have to talk to the senior pain guy.
Then he schedules me for a TMJ appointment and a shrink.....2 more f'ing appointments that will probably be b.s. and schedules a follow up after I see them.
I feel like I'm a freshmen in college taking a bunch of pre requisites after more than 2 years of this f'ing pain and a year after having an MVD....ugh.
edit:: Actually, going to the pain specialist has raised my stress level and made things worse...............
Hi Shindig, so sorry to hear of your problems. I can only imagine how you and your family must feel with this added burden of having to pay for medical treatment. My heart goes out to all who have to pay for treatment on top of this horrible illness Everytime I read of one of my fellow sufferers in this predicament that I thank God that in Scotland we have NHS which although not perfect provides health care from cradle to grave. I don't know how I would cope otherwise. You are all amazing. I hope things improve for you soon, sorry I have no advice I can give but listen to support of others in your part of the world as how to get best help. Lots of hugs
I am so sorry Shindig. I have followed your posts since your MVD last spring. I had my MVD in September and am also right back to where I was then. My MVD was nothing more than yet another complication to the journey. I have a new neuro and he will be doing steriod injections into both occipital nerves tomorrow. We did a test run with lidocaine and it made a difference in some of the triggers and the dizziness. Would that be something you could consider? I am also starting vestibular rehab tomorrow to deal with the dizziness which continues to plaque me. I hear and understand your frustrations. I wish there was something concrete I could do to help. Would you consider marrying a Canadian and getting better health care. I know of a lady…
The imaging did show a broken alar ligament on the top of my spine from whiplash trauma that I don't remember. (I've had a few falls and impacts, used to ride horses, fell down stairs, etc)
The pain specialist has a "theory" that a nerve in the spine is cross linked with a nerve in the face, so damaging the spine nerve triggers face pain. Something like the 2 nerves connect to the spinal cord in the same spot. He didn't mention how to fix it.
@cleo
Yeah but I'm pumped full of antidepressants for pain already with nortriptyline (125mg) and cymbalta(120mg), what else can they do? Getting medical bills sure does make me depressed.
Cleo said:
When pain like this becomes chronic there is nothing wrong with head help. After all they are the experts in the mind altering anti depressant therapy.
It sounds like you lived an active and full life till this demon took over. That makes it even harder to deal with the limitations this monster puts on a live.Because of the injury to your ligaments near the top of your spine perhaps the occipital nerve blocks would help. They are done in the neuro office and are relatively painless. When done with steroids there is the potential for months of relief from triggers to TN. I am so willing to give them a try. All the best and keep us posted.
Aw Shindig…sorry to read of your frustrations and escalating medical bills, that sure adds to the stress!
It’s always good ( in my opinion) to try new things, and there very well could be a correlation to injury/ misalignment in your neck/ cervical spine and TN pain. ( that’s the premise with NUCCA chiropractors ).
I don’t think the tmj appointment is a priority but seeing a “shrink” can be helpful…it’s all a personal choice on your part. I totally get your frustration…
My pain has been progressing/increasing again since September… As have my meds… I just added Keppra to the mix of Tegretol and Dilantin, it’s been a week since the addition, and it certainly has helped the constant type 2 pain, but I’ve had a few intense, repetitive Type 1 shocks …I’m a lump on a log, unable to do much , feel completely drugged up and slow in thought and movement…
I see my Neuro next week, and like yours, I don’t think he has much else to offer…I’d rather not add another dose of anything at this time, as I feel drugged up enough…
I had 4 months pain free after MVD, before the pain started increasing…I was never really TN free after MVD but the med kept the pain at bay for those 4 months.
My advice to you would be to have a frank conversation with the Pain Clinic about your expectations, your medical costs escalating and ask directly how they think they can help you, or what their plan going forward is…pain control should be first and foremost. I hope your neuro might have another suggestion or an adjustment to your medications…