RE: Pain management referal (help)

[Guest guest]

Hi,

I am new to this group so " Hi " to all. I just wanted to let you know that I

take methadone for pain. I suffer no side effects at all from it and it

definitely helps my back pain. I also use a lidocaine patch and gabapentin. It

galls me that some MDs steer away from methadone and some pharmacies and even

other drs. look askance when I say I take methadone pills. It is just plain

ignorance on their parts.

My own dr. believes strongly that it works well and is so (relatively) benign.

My pharmacy orders the oblong shaped ones so I can break them in half.

Hope this helps,

> hurtingleg wrote:

> What do you think about methadone for pain? What about methadone's greater

side effects; decreasing the benefit to risk ratio? What other medications

should I possibly suggest besides the fentanyl?

[Guest guest]

> wrote:

> What do you think about methadone for pain? What about methadone's greater

side effects; decreasing the benefit to risk ratio? What other medications

should I possibly suggest besides the fentanyl?

Welcome, I am so sorry you are in pain. My sacral iliac joint rubs against

muscle and bone and causes pain for me also.

The first thing I would do is not to say a pain medication made you " high " . Most

pain patients do not get " high' but might feel better, sedated, or have a

euphoria (which I never have had), as those word relate to drug seeking as with

asking for drugs instead of medication.

A good guide you might want to read is " The Survival Guide for Intractable Pain

Patients " by Dr. Forest Tenent that speaks about the situations you talk about

along with enhancers of pain medication. Dr. Tenent is one of the forerunners in

Pain Management Doctors and he has made the guide easy to read and understand.

I have been on the same dosage of Morphine I was titered up to and have break

thru of Oxycodone IR 10 mg and Nueroting when I need it.

I keep a pain dairy and functional assessment when needed. Rotating opoids for

effectiveness and preventing tolerance is a common practice if needed to take

care of pain. The Guide I mentioned has Chapters on this.

Some members here take Methadone and state that it works well for them. I would

follow your gut feeling and just get your lab values checked to make sure your

liver or other systems are okay.

I have found that if something is working, I don't mess with it and if you get

pain relief below a 5, that is great. I hope you find what you need and the

members here are great. Bennie

[Guest guest]

Hello everyone, I am new to the group also. I was a 911 paramedic for 15 yrs

until April 2008 when I (finally) went to my Dr. for back pain and stiffness,

and excruciating headaches. I've always suffered from classic, allergy related,

food trigger, and sinus migraines, but these were worse than any of those. I

thought I had arthritis since my arms, hands, and legs hurt also.

She ordered an MRI and then next day she literally pulled me off my ambulance in

mid shift " until further notice " . Long story short, every disc in my entire

spine had either herniated or bulged except for C1-C2 coming off the base of the

skull. C3 had my spinal cord compressed 3/4 of the way through causing the bad

headaches, and was about a month away from severing my spinal cord and leaving

me a quadriplegic for the rest of my life.

I have had a total of 4 spine surgeries, 2 cervical and 2 lumbar, all failed.

The first one was successful in decompressing my spinal cord and the second neck

surgery released 10 pinched nerves, I have titanium plates and screws holding my

head on my shoulders, but still have headaches at least weekly, but not as bad

as before.

The 2 lumbar surgeries also failed, I have degenerative disc disease and spinal

stenosis, which is a narrowing of the spinal canal. No doctor will touch the

thoracic spine, to which the ribs are attached. It is too risky and the surgery

is very complicated with a very long recovery.

I have had spinal nerve blocks, no relief. I have begged for a spinal nerve

implant stimulator but the pain management doctors around here would rather keep

me doped up than give me relief from the pain. They have determined that it will

not work for me, not even letting me do the trial...of which I can determine for

myself during the trial, that's the point of a trial.

I am in pain 24/7 and my whole spine is affected. I have been on all the

standard pain therapies from lorcet, oxycontin, and the fentanyl patch. Nothing

worked except for keeping me drugged and sleeping through the pain, only to wake

up in worse pain. I fired all the pain management doctors, and the neurosurgeon

that did my surgeries passed away from cancer not too long after my last

surgery.

I went to my family doctor and through trial and error she has

helped to get my pain tolerable. She put me on methadone. With my background in

medicine I have somewhat of an advantage in knowing pharmacology. Methadone IS a

pain medication whose side effects happen to alleviate withdrawal symptoms from

certain narcotics.

Just like phenergan, Tagamet, and pepcid, all used for stomach problems, are

actually antihistamines whose side effects combat nausea and neutralize stomach

acid.

Yes, I still get looks from those who don't know better, but they

are just ignorant about medications and shouldn't be judging people anyway. The

methadone has been wonderful for me.

Pain management had me on no less than 15 pills several times a day, I am now

down to five three times a day. Two of those five are my hormones and

glucophage (I am a Type II diabetic). I take Savella, which replaced the Lyrica

that had made me gain weight, I have since lost 20 pounds since coming off the

Lyrica. I take flexeril as a muscle relaxer, but need to have that changed as it

is no longer working well for me.

I take the methadone either 10mg every 8 hours, or can break it in half and take

5mg every 4 hours, depending on the day I am having. I am in a wheelchair as my

back will not support me standing for more than 10 minutes nor walk more than

50-75 ft.

My discs blow out while I'm sitting in my chair, my spine will eventually

implode on itself and I will always be in pain. I do have a swimming pool I

bought after my final diagnosis, and being in the water takes the weight off my

back and I have developed an aquatic therapy routine that keeps my muscles toned

and helps with my weight. I still need to lose 30 pounds to get back to my

pre-surgery weight, and I'm sure getting the excess weight off my back will help

with the pain and the rate at which my discs disintegrate.

I think the key to pain management is to get with the doctor you trust the most,

I have had my primary care doctor almost 30 yrs., so she knows me better than

anyone and is more apt to experiment with the combo of meds because she knows I

will let her know honestly if it works or is too much or not quite enough.

So about the methadone or any other medication, do your homework, the Internet

has wonderful resources and this group is great, I'm so glad I found you all, I

hate that anyone has to go through chronic pain but it is a fact of life, and

I'm so happy I have found this forum to connect with people like me. Thank you

all for being here and for all the encouragement and support I have found. I

don't post a whole lot, but I do read every post, and I don't mind being

contacted off list if I can be of help to anyone.

One more thing, I do have a therapist that I've had since before my injury, and

she has been a Godsend for everything I've gone through. I just mentioned that

because that also is a tool to think about, and one on one talks can help

discover and begin healing emotional hurts as well, and is much more personal

than in a large group. My sessions are over the phone now since it takes so much

out of me to get myself ready and get out and about. Just something for you to

think about.

Karyn

> wrote:

> What do you think about methadone for pain? What about methadone's greater

side effects; decreasing the benefit to risk ratio? What other medications

should I possibly suggest besides the fentanyl?

[Guest guest]

First, welcome to the group!  It's hard to be dealing with so much pain, esp at

such a young age with a small child to raise.

Have you had any other opinions from orthopedic surgeons on your leg?  My first

thought is, maybe they could go in and check the hardware to be sure all is in

order, and maybe do a revision of the original repair. 

It just doesn't seem right that you should be suffering so much

Blessings

> wrote:

> Also he wants to see what other things can be done to improve the quality of

my life and allow me to achieve a higher level of functioning and comfort.

[Guest guest]

> Karyn wrote:

> Yes, I still get looks from those who don't know better, but they

> are just ignorant about medications and shouldn't be judging people anyway.

The methadone has been wonderful for me.

Karyn,

I never thought " my spine " would go out after years of standing on concrete

taking portable x-rays, dragging the large machine, lifting large patients by

myself, and then working at Home Depot in the Garden Center for " fun " lifting

large bags of mulch and pea gravel.

I thought my years in the military in medical training, dragging large

duffel bags walking for miles and other activities would never hurt my spine.

I tried chiropractors and they manipulated my spine when they should not and

finally after extensive spinal sticks, I had a discogram and my discs were gone

and L-4, L-5, S-1 were real problems. I had a fusion as I had to be functional

as it was bone on bone. I got a T-Spine fracture and id not even know it.

I remember Benadryl was always used for anti nausea and sleep which is a

antihistamine. I cannot take Lyrica either as I gained thirty pounds in one

month although it was good for the pain, It is a hormonal type weight gain, not

water weight. I also felt as my eyes were swollen.

I take Tiazidine for a muscle relaxant, Vitamin D (as it is known to decrease

pain and I am deficient), Estrogen (Research also states hormones decrease pain.

People should not know about your pain medications, as it is none of their

business and it is illegal for employers to ask except for drug testing and my

Doctor refused to tell my Principal what I took as she was trying to fire me but

the school board wanted me. In the end, she got fired and my Doctor wrote her a

letter stating that he was encouraging me to sue them for discrimination.

I am glad the Methadone is working and sorry about your situation. You are also

are so right when you say there is so much information on the internet and the

best thing a pain patient can do for themselves is research things. As I have

said before " The Survival Guide for Intractable Pain Patients " by Dr Forest

Tenent is a great source and talks about the things we are discussing. It can be

downloaded from the internet or from paintopics.org

The American Pain Foundation has great resources also and on the tool bar, click

Learn About Pain and it has Publications that include Pain Patient Bill of

Rights, Target Your Pain (which has pain diary and functional assessment) and

Resource Guide. They have done a lot of work on advocating through legislature

lobbying for pain patients.

Thank you for your post and does Savella help you ? Bennie

[Guest guest]

Bennie,

I was always very aware of my back when lifting, keeping my back straight and

lifting with my legs. We finally got power stretchers about a year before my

injury, but the came a tad too late for me.

The doctor said the spinal stenosis and DDD are highly genetic, and on my Mom's

side my grandmother, uncle, brother and I have all had it and numerous back

surgeries, and all of us are disabled (my grandmother is deceased) by it.

Thanks for the resources you suggested, the medical side of me is like a sponge

soaking up all I can about my condition, new treatments and therapies, and of

course new breakthroughs in pain management.

I don't know if you got my answer to your question about the Savella in place of

the Lyrica, but I like the Savella so much better and I haven't had any side

effects from it.

I have a question for the group. I see where several of you are going through

the nerve stimulator trial. Has anyone besides myself been told it will not

work for you and denied the trial? One pain management doctor had me set up for

it, they were rolling me into the operating room when he called it off. Another

pain management doctor in Houston wouldn't even set up a trial because he

decided it would not work for me. I thought that was what the trial is for,

silly me. Good luck for those going through the trial, I sincerely hope it

works for you all.

Sending healing thoughts and energies to the group that we all have a great day

today and the pain is more tolerable or better yet less severe than normal!

Karyn

> Bennie wrote:

> I never thought " my spine " would go out after years of standing on concrete

taking portable x-rays, dragging the large machine, lifting large patients by

myself, and then working at Home Depot in the Garden Center for " fun " lifting

large bags of mulch and pea gravel.

[Guest guest]

, thanks for your input as well as everyone who has posted. I appreciate

all your thoughts and experiences.

To answer your question about my procedures and hardware.

Unfortunately I have had 6 surgeries trying everything available. They put in an

IM rod following the initial fracture. My bone wasn't healing so they then

removed the screws by my hip to create friction at brake site. This caused rod

to extend out of my hip rubbing on ligaments and muscles.

So to correct this they replaced rod with a shorter one this time with no screws

down by the knee. There was movement of the rod inside of the bone and the bone

still wouldn't heal (non-union). So naturally, they replaced the rod with a

larger one, added bone graft from my hip at brake, and put some

antibiotic/microbial beads inside to rule out some infection as the cause of the

non-union. I needed a ligament lengthened as it was catching in my hip still.

Lastly they removed all the hardware as I still experienced pain. The femur is 1

inch shorter than my left so I went to a consult for leg lengthening procedure.

The orthodox specialist from out of state said he wouldn't do the procedure as I

had the trouble with it healing and recommended shortening the left leg to the

length of my right.

This is what I am left with and no other options besides medication.

I was also told I would not benefit from a spinal cord stimulator. Currently

there is no hardware as it has been removed.

> wrote:

> Have you had any other opinions from orthopedic surgeons on your leg?  My

first thought is, maybe they could go in and check the hardware to be sure all

is in order, and maybe do a revision of the original repair. 

[Guest guest]

Karyn, I was also told spinal cord stimulator wouldn't be good for me and denied

the option!

> > I never thought " my spine " would go out after years of standing on concrete

taking portable x-rays, dragging the large machine, lifting large patients by

myself, and then working at Home Depot in the Garden Center for " fun " lifting

large bags of mulch and pea gravel.

>

[Guest guest]

I just don't understand how these doctors can get away with denying a patient

the right to a trial for the nerve stimulator implant. That is the purpose of

the trial, to see whether or not it works for you. Every patient is different

and what doesn't work for one may just happen to work for another.

I live 90 miles east of Houston and the " best medical care in the south " and

this is where I have been denied the trial. They act like they want to keep me

doped up and get me hooked on pain meds so I'll keep coming back to them so they

will keep getting paid. I have Medicare and a supplement that picks up whatever

Medicare doesn't pay.

My aunt went to a dr. in , MS and he gave her the trial, it worked and

she now has the implant and gets around fine, while I am stuck in a wheelchair.

Oh, she is 90 years old, I am 50! I am going to see if I can get a referral to

him and if Medicare will pay! I feel like we all deserve the chance to go

through the trial to see for ourselves whether or not it works for us, not be

controlled by a know-it-all dr who has no clue the pain we live with every

second of everyday!

Hope everyone has a great day, and Happy Father's Day to all you Daddy's on the

list, and Daddy substitutes who play a very special roles to the kids in your

life!!

Karyn

Sent from my iPad

[Guest guest]

And see, I've found it the opposite here...they will shove ANY treatment at

you to avoid narcotics. Even if the stim trial isn't effective, they'll try

to do it again and again and again just to find a way to get you OFF pain

meds and onto something that is ONE charge and a few battery changes. While

the stim was effective for the herniated disk, it wasn't so much for the

RSD, but if I go for the implant, then I'm afraid they'll expect me to get

off the medication and I'll be in so much pain from the RSD that I won't be

able to make it.

I wish more doctors would LISTEN.

Marta

>Karyn wrote:

>I just don't understand how these doctors can get away with denying a

patient the right to a trial for the nerve stimulator implant. That is

the purpose of the trial, to see whether or not it works for you. Every patient

is different and what doesn't work for one may just happen to work for another.

[Guest guest]

Karyn Trantham wrote:

> I just don't understand how these doctors can get away with denying a patient

the right to a trial for the nerve stimulator implant. That is the purpose of

the trial, to see whether or not it works for you. Every patient is different

and what doesn't work for one may just happen to work for another.

Karyn,

I don't know what facilities or Doctor you are being referred to but I would

contact the Neurosurgeon at the Hospitals as you say, there are good ones there.

I would also contact Medtronics Company for a referral evaluation.

When I typed in Medtronics Physician Referral , Houston Tx, this information was

the most interesting:

Dr. Simpson, neurosurgeon at the Methodist Neurological Institute, in

Houston, Texas, was the first physician to implant Medtronic's Activa® SC

neurostimulator, a new device for deep brain stimulation therapy.

A 65-year-old woman with Parkinson's disease became the first

patient in the United States to receive a new device for deep

brain stimulation (DBS) therapy.

There is a video on You Tube etc. Have you tried contacting Methodist

Neurological Institute? Medicare doesn't require you

have a referral so you can contact these doctors for an appointment yourself and

they can evaluate you for treatment and payment.

You will still be followed with a nuerostimulator and in some cases you are not

going to get relief and off medications you seem to be thinking of.

Be sure to look at the problems and why they are denying you, they have to give

you a reason and then get a second opinion. I live in Austin and used to drive

to Houston for pain management treatment and my neurosurgeon gave me this option

but I have declined and he agrees my reasoning is appropriate.

I scar easily and have a strong immune system that tends to reject foreign

objects and I have hardware and instrumentation from a three level fusion.

If you are going to Doctors that do not give you reasons why they decline you,

you need to go to a Doctor that will give you the reasons and Medtronics has

listing of Doctors trained in their devices. I would start there. Good Luck on

your pain relief journey.

Bennie

[Guest guest]

Marta wrote:

> I wish more doctors would LISTEN.

I saw a new doctor a week ago. He didn't hear a word I said. I finally

raised my voice a wee bit and asked him if he had a hearing problem. I

told him that I had said the same thing three times and he hadn't heard me.

He listened after that. :-)

Lyndi

[Guest guest]

((((((((((Lyndi)))))))))) I LOVE it! what a fantastic thing to do. You go

girl! Gentle hugs, Tami

Lyndi wrote:

> I saw a new doctor a week ago. He didn't hear a word I said. I finally

> raised my voice a wee bit and asked him if he had a hearing problem. I

> told him that I had said the same thing three times and he hadn't heard me.

>

> He listened after that. :-)