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Just need your opinion and answers from others

ericsmomeericsmom Posts: 10
edited 10/24/2014 - 7:17 AM in Chronic Pain
I am new to this forum and so glad to have found it.
I have suffered with chronic pain due to broken Harrington Rods...

When I was 18, I was in a car wreck and my back was broken -
(apparently the L5 region)
this was in 1979 - and they placed Harrington Rods to "fuse" the break.
(I don't remember a lot of what went on with the surgery sadly enough)
my mother was alive then and handled most of the care -
apparently (I'll say that a lot) :)
they took some bone from my pelvic area to help in the fusion.
I have 2 scars on my back - 1 by the right pelvic area 1 down the middle of my back.
This surgery was very similar to what they did for patients with scoliosis...
I was fine after the surgery --
for about 20 years then ...
it happened - the pain pretty much started out of nowhere -
long story short - they finally found that the rods had broken away
from the initial site of placement -
Now - its 15 years later...
I've been in pain management for 14ish years -
the past 8 years I have been in the same practice -
I LOVED the practice - it was multi disciplinary (sp?)

I had chiropractic care - physical therapy - massage therapy
laser therapy - and a doctor was there for medication.
4 to 5 years ago a doctor came in and stayed.
Last year (2013) the owner of the practice left and all that
is left now is the pain medicine doctor -
I love him because I know him -
he is friendly, caring and he knows me.
But now -
for the first time in 8 years (well actually the past year)
my pain has increased from normal 2 to 5 pain levels
to a low side of 3 to 4 to a lot of 8-9 levels :(
I can deal with 3 to 5 ---
its the 8 and 9's I could live without.

I have been on the Fentanyl Patch 75 for 7 years ...
never an increase and I have actually cut back on
break thru meds - from 6 to 8 Vicodin to 2 percosets a day.
I'm really proud about that.

The past year ... I had an epidural and a S something injection?
(I know - I should know this a bit better...but I felt like they knew
what they were doing...I trust the dr's and they were helping me
a great deal) When I walked into this clinic 8 years ago -
I was in horrible shape -
no kidding - pain levels were 10 to 11 and I don't say that easily.
I feel like it is really important to place the number as correctly as possible
(yep, I'm a little OCD on top of everything else) :)
So I just do not say I'm a 10 if I am a 5 ... 6....7 ...

I've learned my lesson and now, I will pay closer attention to my care.

Here is my question ...

My doctor wants to insert one of the neurotransmitters in my back :(
as you can imagine ...
I'm a little funny about ANYTHING else going in and staying in my back.
Remember I have metal spewed thru my back ...
(No they cannot operate to remove them because of the scar tissue)
it could cause paralysis :(

Anyway -
call me crazy but I would rather have the patch increased.
I feel (and I know I could be wrong)
that the patch is what helped me the most in regards to medication.

I am very sensitive to medication ...
and believe me I was put on so many different medications those
first few years - from narcotics to Cymbalta to sleeping pills ...
ALL I take now is the percoset, patch, muscle relaxer, and diclofenac...
there are times when I don't have to even take the percosets
(usually the first day after I have put on a new patch)

here is my question -
wouldn't it be better to up the patch before implanting yet another
device in my back?

I know my doctor does not like the fentanyl -
he tells me how strong this dose is (75 mc)
but I feel like this isn't the case. I wish I could touch
someones hand and they could feel - what I feel.
I am not high off the fentanyl - it doesn't cause me any side effects ...
it just takes away the pain ...

Remember the dr now is not the dr who placed me on the patches...
he came into the practice 3 to 4 years after I was already there.

He has tried me on other medications - but left me on the patch
while doing so - even morphine tablets didn't help me.
Nuycenta altered my breathing - you could hear me wheezing in the other room :(
It did help my pain a bit - so I even tried it again a few months later ...
breathing problems again :(

Due to the many adverse effects of other medication -
I am soooo resistant to changing my current meds ...
I could tell you some stories ...
from being called TWICE "hi, listen this is DR _____ Office ...
stop taking the _________ right now...and come in to get
liver checks"
That was the Celebrex which actually was helping...
(that was like 9 to 10 years ago)
This happened other times too :(
Cymbalta ... I passed out for several months -
Never had fainted in my life -
well one night I was up late and hear the ad for Cymbalta -
it said "could cause light headedness and fainting!"
I tell the Dr (not the same one as now)
and guess what?
Fainting went away :(

So when I hear "lets change your patch"
I think about the past issues :(

So - what do you guys think?

IS fentanyl 75mc after 7-8 years without increase
considered a high dose? (With 2 percosets per day for breakthrough)?

Should I even consider this device BEFORE having the Fentanyl upped?

Am I wrong not to want to change my meds?
I know I am a creature of habit - I'm old now and
I'm now my grandmother! I don't like to change something that
isn't broken ...

I look forward to your thoughts ...
God Bless
help!
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Comments

  • sandisandi Posts: 6,269
    edited 10/26/2014 - 4:36 AM
    http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-spine-health-how-get-started

    Spinal cord stimulation is a good option for patients who's primary source of pain is neuropathic in nature......it involves a trial period to see how much benefit the patient will get during the trial. If you get no or not enough relief of the pain, then the permanent implant is not offered or implanted.
    The trial involves placing the electrodes temporarily next to the spinal cord covering, and has a temporary power source worn on your belt for about a week...
    It is worth at least considering and talking to the doctor about, and doing some research into it , talking with others who have it implanted to see how they feel about having one.

    SCS
    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/typical-questions-and-answers-spinal-cord-stimulation
    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/scs-trial-faqs
    http://www.spine-health.com/forum/treatment/spinal-cord-stimulation/spinal-cord-stimulation-faqs
    Under the forum home link on your left, if you click the treatment section, you will find a spinal cord stimulation forum where we have members who have the implanted device, and lots of information on the trials.
  • I wouldn't change my patch (50mcq) for no one. it's the one thing that has ever touched this insane nerve pain!!
    I do take breakthrough meds and have a spinal cord stimulator

    I wouldn't let anyone remove that either...sandi is right it's worth a trial.
    follow your gut is my advice
    take care
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  • I found out that a spinal cord stimulator 1. helps if the pain shoots down the leg (mine don't) and 2. you must have some fat on your body for that or a drug pump (I don't). Leads break. Batteries fail and need changed anyway every 5 years. Read before you buy. I SO wanted the drug pump. But am allergic to antibiotics so surgical infections would kill me. Not worth it. My best to you. Everyone is different. You must read/research/decide.
  • where is your implant placed in your spine? It usually goes lower thoracic area to get your legs. Can u have it checked and make sure its not placed to high? This happened to me on my first attempt so I had to go back for revision. It is a nerve/scar tissue pain saver....
    take care
  • EMC - I've not had the stimulator put in...yet. I still have to see the surgeon.
    Hopefully, I pray he says he doesn't want to do it since I have the broken titanium/Harrington rods broken...in my back.
    I am scared to death those rods will move again and "bump into" the stimulator! I know - maybe I am freaking out about something that can't happen (I'll ask the surgeon when I see him)

    Call me cray - but I'm a little put off at the thought of more foreign objects in my back :(

    Now I'll see if I can upload a photo of a recent xray showing the rods in my back.

    Thanks so much to everyone for your thoughts and suggestions.
    help!
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  • I tried to upload a photo of the xray to my account thingy...avatar I think is what they call it (remember...I'm old...and not too technical) :) but its so small you can't see it - is there a place or way we can share our xrays here?
    help!
  • dilaurodilauro ConnecticutPosts: 12,401
    edited 01/13/2015 - 5:11 AM
    there is not space on the Spine-Health site for a repository of member X-Rays and MRIs

    Some people use photobucket or other web based photo areas to store their diagnostic tests

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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