[tennesseefred]

Hi all,
I will try to make this short: I was injured on the job in new york in 2008 and my condition is as follows as per MRI last month:

c3-4 Moderate central disk herniation type with moderate thecal sac compression. It contacts the ventral spinal cord without deforming the cord.

c4-5 moderate central disc herniation protrusion type. This contacts the central cord without deforming it.

c5-6 moderate disk space narrowing and disc degeneration. Moderate disc bulge. Bilateral disc osteophyte complexes right and left. There is moderate thecal sac compression and moderate to sever narrowing of the right foramen.
. Mild to moderate narrowing of the left foramen.

c6-7 Mild disc bulge and mild bilateral ulcinate spurs. Mild canal and foraminal stenosis.

The problem is is that I am undertreated for the pain. I have no history of abuse. I recieve 75mg lyrica 2x/day and 1 2mg hydromorphone no more that 3x per day. I am opiate tolerat after being treated with 100mcg Fentynal patch which i cold turkey'd a year ago after being on it for 4 years. it was prescribed by my PCP. The opiate tolerance remains. I wrote a letter to the pain clinic to explain this. i would really appreciate any input. I'm worried as hell as I cannot survive like this. here is the letter I wrote as I have a difficult time expressing myself :

Nicole,

I am writing this to you as I often find myself unable to adequately and fully express my thoughts and concerns regarding my treatment. In order for you to treat me, I feel it is important for you to have a brief summary of my past treatment.

As is evidenced by my records I have been treated at SOS since 2008 when I was injured at work lifting. My first visit to NYSSWC was shortly after that. I showed up on my appointment day in the most extreme pain I have ever felt in my life. I also suffer from and pass kidney stones at least once or twice a year, something apparently more painful than childbirth. I would consider such an event to be a 9 out of 10 on the “pain scale”. A 10 being the condition I was in for over a month at that point and possibly longer. I was desperate and hopeful.
The nurse who was taking the admission notes on me that day asked me about my condition and I was completely honest with her and literally begging her for help. Looking back, if I had access to a handgun I would have consider using it on myself to end the pain. My comment to my mother was, “If I had a dog I would put him down out of compassion alone.” I do not exaggerate in the slightest bit. She asked me what medications I was on and I answered remarking that “they do not help at all.” then made the mistake which I have paid for in pain and tears for the last 5 years, I told her that they did not work even when I use two at once. They were prescribed by my primary care doctor to use one at a time and to get me by until I was able to see Dr. Zogby at SOS, however it was incredibly inadequate given the level of pain I was in. I have not been back until a few months ago instead choosing to treat with my PCP.
This time I return to the NYSSWC after seeing no one for this issue for a year. The pain has gotten increasingly worse, this time in a different area and although I know the “rules” now, I am afraid of being under-medicated once more as I cannot fathom “doctor shopping” for a new doctor who will prescribe appropriate medications.

After being treated with Fentanyl 100mcg/hr for 4 years and I retain a high tolerance to opiates. I am afraid to express this however, as throughout the years I have learned this is considered “drug seeking behavior” as was my plea for help in 2008. I took myself off the Fentanyl patch a year ago cold turkey and haven’t touched anything like that since as I felt it was too much and having too many adverse effects. It has been one of the worst years of my life due to the constant and unrelenting pain and most of the time I wish I had never done that, consequences be damned.

To sum up I would like to say this is not “drug seeking” behavior but merely asking for help with a condition I acquired from an accident that happened helping someone else who wasn’t able to help themselves. I hope you can appreciate the irony in that, Nicole. Thanks for your time.

[don1956]

hey fred i to have the same neck injury,and it happen in 2008 and im from NY,and i go to "sos"all like you..but one thing though i was curious about is who is this lady "Nicole",who you are writing to

[cali4nia]

that I could offer you some help, but I can't. I just want to say though that I am finding myself in a very similar situation and I can relate to how you are feeling. It is such a frustrating thing...I also have similar symptoms to you as well and the pain is "intolerable" at times yet apparently I'm not "bad enough" to operate on as of yet. I am also starting to build up a tolerance to my pain meds. I am on 30 mg of slow release morphine and it does take the edge off but definitely does not make the pain go away by any means.

Anyways, I just want to wish you the best of luck in your journey for a life of no pain. I never thought something like this would be so difficult!

btw...I had a baby with no pain meds about 10 months ago....my pain on this past Sunday was pretty darn close...but fortunately it didn't last for 15 hours like birth did! lol

[tennesseefred]

Hi,
Thanks for responding. To answer your questions she is the PA I have been seeing for the last three months. I could just read it i suppose and it isnt going to be part of my medical records or anything. I wrote to read to her but then figured i would feel like a tool and i would be better off giving it to her.

Yeah, SOS and their "Spine and Wellness Center" pain clinic. There is a drug rehab in the town i live in called the maxwell house. I feel like im in the Maxwell House when i go to nysswc. Do they ever relax with the pee tests and do they become random? the also made me sign a contract which stated if i become dependent (not addicted) to any medication they provide, then you will have to go to rehab at your own expense. I'm at hydromorphone now, if i took it all the time like i need it i would become dependent in a few months tops. now i have to ask for an increase? the whole thing is just insane. vent over

[tennesseefred]

Originally Posted by don1956

hey fred i to have the same neck injury,and it happen in 2008 and im from NY,and i go to "sos"all like you..but one thing though i was curious about is who is this lady "Nicole",who you are writing to

That Sir, is a strange string of circumstance, Eh?

[tennesseefred]

Originally Posted by don1956

hey fred i to have the same neck injury,and it happen in 2008 and im from NY,and i go to "sos"all like you..but one thing though i was curious about is who is this lady "Nicole",who you are writing to

Nicole is the PA I see that writes my scripts.

[Chemar]

Just a reminder that these forums can be publicly read by anyone even though only members can post ...... so don't give names or other info that you don't want to be searchable on Google and other search engines!

[Leesa]

So are you dealing with a Workers Comp situation? UGH if you are.

Most of us ARE undermedicated. Unfortunately in this country, the stupid DEA is sticking their noses into the doctors' practices, and basically threatening the doctors. A doctor in my village was actually ARRESTED for giving patients pain medication!!! The judge LAUGHED the case out of court and gave the arresting officer of PIECE OF HIS MIND!!! The cop was, of course, a bit embarrassed, because the court room was FULL of supporters for this doctor! And this doctor continued to prescribe for his patients! Then, wouldn't you know it, he got hit by a car, walking across the street -- and had to quit his practice!! Yes, he was my doctor.

It took me quite awhile to find a doctor who would prescribe opiates. NO DOCTOR in my area, which included 3 HUGE CITIES (I called them all) would prescribe opiates!!! The ones that would answer me said that it wasn't worth the hassle.

I finally found ONE who isn't afraid of the DEA. He has worked very hard to treat me and keep me reasonably comfortable. In the beginning, I think HE thought I was a drug seeker. So I was undermedicated for quite awhile. Finally, I asked him to sit down so I could talk to him --- by that time I was MAD and when I get mad I cry. I told him I figured he didn't like me, but I wasn't a drug seeker -- I was in PAIN and in agony and needed help, etc. That finally broke the ice, and he put me on OpanaER along with Lyrica, Topamax and Cymbalta. That combo did the trick. For the FIRST TIME in 27 years, I was fairly comfortable.

So there IS hope - you may have to CRY and raise cain. You may have to DEMAND better treatment. You may have to point out that you've ALWAYS been hard to medicate (give examples--- for instance I actually wake up on the operating room table during surgery!) Do whatever you can to get him to listen. And I mean LISTEN. Sometimes they listen but they don't HEAR.

I wish you the very best. Let us know what happens. God bless & take care. Hugs, Lee

[tennesseefred]

So are you dealing with a Workers Comp situation? UGH if you are.

yeah. workers comp. its been 5 years dealing with those guys.
Most of us ARE undermedicated. Unfortunately in this country, the stupid DEA is sticking their noses into the doctors' practices, and basically threatening the doctors. A doctor in my village was actually ARRESTED for giving patients pain medication!!! The judge LAUGHED the case out of court and gave the arresting officer of PIECE OF HIS MIND!!! The cop was, of course, a bit embarrassed, because the court room was FULL of supporters for this doctor! And this doctor continued to prescribe for his patients! Then, wouldn't you know it, he got hit by a car, walking across the street -- and had to quit his practice!! Yes, he was my doctor.

My PCP, who was prescribing me the Fentynal, dropped me because he was afraid of losing his licence. A colleague of his went to jail for prescription fraud among other things. He is practicing again I mean cold turkey from 100mcg Fent patches. That is the very definition of hell!

It took me quite awhile to find a doctor who would prescribe opiates. NO DOCTOR in my area, which included 3 HUGE CITIES (I called them all) would prescribe opiates!!! The ones that would answer me said that it wasn't worth the hassle.

Not worth the hassle? hassle or not I have no choice. I've been off narcotics and living on the couch for a year. That is beyond unacceptable. Strange how although disabled, there is no patient advocation on my behalf...

I finally found ONE who isn't afraid of the DEA. He has worked very hard to treat me and keep me reasonably comfortable. In the beginning, I think HE thought I was a drug seeker. So I was undermedicated for quite awhile. Finally, I asked him to sit down so I could talk to him --- by that time I was MAD and when I get mad I cry. I told him I figured he didn't like me, but I wasn't a drug seeker -- I was in PAIN and in agony and needed help, etc. That finally broke the ice, and he put me on OpanaER along with Lyrica, Topamax and Cymbalta. That combo did the trick. For the FIRST TIME in 27 years, I was fairly comfortable.

Im glad you feel better but I'm the type to to grab someone by the throat before i break down and cry. It's the vet in me

So there IS hope - you may have to CRY and raise cain. You may have to DEMAND better treatment. You may have to point out that you've ALWAYS been hard to medicate (give examples--- for instance I actually wake up on the operating room table during surgery!) Do whatever you can to get him to listen. And I mean LISTEN. Sometimes they listen but they don't HEAR.
I wish you the very best. Let us know what happens. God bless & take care. Hugs, Lee

Thanks for the encouragement!

[don1956]

Originally Posted by tennesseefred

Hi,
Thanks for responding. To answer your questions she is the PA I have been seeing for the last three months. I could just read it i suppose and it isnt going to be part of my medical records or anything. I wrote to read to her but then figured i would feel like a tool and i would be better off giving it to her.

Yeah, SOS and their "Spine and Wellness Center" pain clinic. There is a drug rehab in the town i live in called the maxwell house. I feel like im in the Maxwell House when i go to nysswc. Do they ever relax with the pee tests and do they become random? the also made me sign a contract which stated if i become dependent (not addicted) to any medication they provide, then you will have to go to rehab at your own expense. I'm at hydromorphone now, if i took it all the time like i need it i would become dependent in a few months tops. now i have to ask for an increase? the whole thing is just insane. vent over

Hey fred i just got one to!!!2weeks ago from my "SOS"doctors to .they didnt tell me what it was for though,but my sister "ginnie"knewand she was right