Opiods or Surgery?

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Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/12/2008 1:49 PM (GMT -7)   
When my pain started suddenly 6 1/2 years ago I went to many teaching hospitals
and credible places to find doctors of all kinds.

One offered surgery. But for the most part the doctors told me to not have surgery.
They offered Opiods & nerve medicine. (Methadone & Neurontin)

I have a bend in my neck that most doctors seemed to want to avoid. C3 & C4. I
have a lot of shoulder and spine involvment because of Scoliosis.

Methadone is a heavy-duty pain medicine. After that, my current doctor seems to think
a pain pump would be the thing for me to use.

It's confusing to me when I talk to someone who has had many surgeries but does
not take a strong medicine to keep their pain from going off the charts. When I first
started out with pain medication, I started on Vicodin.

The more I read ... the more I think that maybe I should have taken my search for
medical care even further.

Maybe I'm just writing this today because I awoke with terrible pain. It has gotten
better despite medication.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/12/2008 2:20 PM (GMT -7)   
I'd like to correct the above post ...
Last paragraph should read "It has NOT gotten better despite medication"
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 11/12/2008 4:58 PM (GMT -7)   
pamela dear...... i can't comment about the pain pump but i promise you there are meds far beyond methadone! i was on it for 2 months with no luck. i was switched to oxycontin & having much better success, though i think i am close to tolerance & will ask for a new level next visit. my drs flat out told me when i started it takes awhile to get the right medication for you. (3 years ago) there are many, many, many more choices. i like to think i would have tried everything before surgery like that. that is a major deal & a lot of people i have talked to have not had success. post a thread on here about getting a pain pump. are you seeing a neurologist or a pain specialist? i have not seen a neurologist but i know for a fact that my pain drs can prescribe higher dosage meds than a regular dr. if you are comfortable where you are thats great....... but i don't think i get that feeling from you from the posts i have read from you. do you need a referral to a pain specialist? i just think there are many better medications out there that can help you. ms contin, oxycontin, norco, oxycodone, dilaudid, morphine, patches.... the list goes on. i have 2 mottos.... it helps to know EVERYTHING you can find on your illness & constant vigilance. i have asked my drs about "ever getting better" or pain free. thats not going to be possible without being medicated without functioning. there is a chance of daily living with minimal pain issues. please promise me to at least research the possibilities of other medications. and we are here to help with your searching of knowledge. there are some great resources on here. i can only tell you what i have been through & everyone is a different story. ask anything you want & we will try & answer. and remember- constant vigilance! ((lots of extra hugs)) you WILL get through this!!!
RX's: Oxycontin 60 MG 2x's daily; Oxycodone 30 MG 4x's daily; Soma 3x's daily; Lyrica 100 MG 3x's daily (all for pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x at bedtime; Cymbalta 60mg 2x's daily (for pain & fibro); Restoril 15mg at bedtime; Zanaflex 4mg 3x's daily; Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/12/2008 10:14 PM (GMT -7)   
Kttn:

I like this Forum. I learn about medications, pillows, pain pumps & surgery ... Lots of things. I make
friends. I learn from REAL people.

I have been to 4 Neurologists, 3 Neurosurgeons,1 Ortho, 1 Family Practice, 4-6 pain doctors. I don't
just hop from one doctor to another. I've had to move. The cost of my medical care has
been high. (I will be moving yet again)

I have taken Norco, Vicodin, Celexa, Cymbalta, Avinza, Duragestic Patches, Xanax, Neurontin, Xanaflex --
Ambien, just about everything but Dilaudid. Methadone works the best for me. I don't advocate it for
everyone.

The people here share their lives with me and keep me from feeling so alone. There's more
to learning to live with Chronic Pain than taking medications that work.

I've spent six months in a pain clinic, gone to two state teaching hospital, one private hospital --
I research. My husband researches.

I appreciate your hugs and concern but I do want to tell you that I am constantly vigilant much like you are,
I guess. We have much to be thankful for with our computers. Sometimes we can almost stay ahead
of our doctors.

Hope you have a good day.

Pamela

*****

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/12/2008 10:19 PM (GMT -7)   

kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 11/12/2008 10:49 PM (GMT -7)   
wow, you have had a lot going on! i recommend this site to anyone who has any serious medical issues. my pain started 10 years ago & at 31 i felt so alone. i couldn't do things with my friends, do housework or even work! its just a great feeling to know you aren't alone. have you tried oxycontin?
RX's: Oxycontin 60 MG 2x's daily; Oxycodone 30 MG 4x's daily; Soma 3x's daily; Lyrica 100 MG 3x's daily (all for pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x at bedtime; Cymbalta 60mg 2x's daily (for pain & fibro); Restoril 15mg at bedtime; Zanaflex 4mg 3x's daily; Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/12/2008 11:05 PM (GMT -7)   
Yes, it was 'Hel' going off. Horrid. The problem?
It wasn't helping me very much, so I needed to go off of it and on
to something else.
I'm not going to say I almost died going off Oxycontin ... but I'm not
sure why I don't say it.
P
Many other doctors and pharmacists thought it was the demon drug.
It cost a lot of money. Much much more than I could pay. My doctor
fought for me to get it from my insurance and he won.... bottom line:
It wouldn't do me any good at all.

A lot of people find it helpful but it's one to be careful of.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 11/12/2008 11:17 PM (GMT -7)   
if you ever decide to go to that route or if you need help with prescriptions go to a website at pparx.org it takes a minute to fill out the questions but if you qualify you can get discounts from the pharm company themselves. my oxy runs about $600 a month. thanks to partnership for prescriptiom assisance my med is only a co-pay of $25. yes, i said its only $25. i also have help with my lyrica & cymbalta. wal-mart is also usually good for cheap meds. i have three or four different pharms cause of the prices! hope this info helps! and i know the oxy causes serious withdrawls. unforunalty i have experienced the withdrawls. no fun. hope you have a good night!!!
RX's: Oxycontin 60 MG 2x's daily; Oxycodone 30 MG 4x's daily; Soma 3x's daily; Lyrica 100 MG 3x's daily (all for pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x at bedtime; Cymbalta 60mg 2x's daily (for pain & fibro); Restoril 15mg at bedtime; Zanaflex 4mg 3x's daily; Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/13/2008 12:33 AM (GMT -7)   
My severe issues started five years ago; I was 30.  Looking back though, I had chronic migraines since my first pregnancy (age 21); and FM symptoms, too.  I started on Vicodin when I first got sick, too. 
 
I was very active before I got ill.  I homeschooled my kids; ran a private school for homeschoolers; worked in Children's Ministries at church; had many friends.  The first 18 months or so that I was illl, I still held out hope that I would be completely healed and return to my previous life.  So did most of my support system (friends, family, etc.).  After about three years, it was clear that life was different for me now.  I probably will always have health issues and chronic pain.  Many people in my life couldn't make this transition w/ me.  When I couldn't go out anymore, talk on the phone, give much at all to the relationship - things changed.  It left me really questioning my "true" relationships...  I still am struggling w/ this one.  I find myself not really wanting to put myself out there (not that I really can anyway) because of my experiences.
 
I've tried a million things to deal w/ my pain issues.  I'm actually going to get more trigger point injections next week, and maybe another nerve block.  I've made lifestyle changes; tried alternative things; etc.  But meds, for me, are the biggest thing that make the difference between me crying and being bedridden to at least being upright.  While the opiods help, the one drug I couldn't live w/out is my muscle relaxer.  I have severe muscle spasms and this helps more than the pain pills.
 
The one great thing about methadone is that it is cheap (inexpensive).  Ohhh, the money I've spent on medications.  It's a nightmare for so many people. 
 
Well, those are my late night ramblings; More later, Tina
 

 

Diagnosed with: POTS/dysautonomia; Fibromyalgia; Severe Hypertension; Hypothyroidism; Adrenal Gland Disorder; Chronic Pain - severe carpal tunnel syndrome, migraines, severe back problems, widespread muscle/joint pain....as well as depression/anxiety.

 

Current Meds: 480mg MS Contin, 90mg MSIR, Soma, Effexor and MANY other meds (heart, thyroid, etc)

Past Meds: EVERYTHING.  Fentanyl patches, Actiq (which caused $$$ in dental work), Fentora, Oxycontin, Oxycodone, Kadian, Avinza, Dilaudid and on the list goes.

 

Waiting On: Intrathecal Drug Pump Implantation (Dilaudid/Baclofen combo)

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/13/2008 1:56 PM (GMT -7)   
Yes. Tina : )

I could have written your letter. Our activities before pain were similar in the
amount of energy expended. (I had the daycare for 12 preschoolers ~ and then
I wrote a newspaper column & book about it)

Yes, I know about "rejection" because I can't do stuff anymore. I don't care. I
have accepted this condition of mine, kinda. That part is a little easier when you're
a grandma. At your age, there will come a time when medical science will have
a way to alleviate pain. I'm afraid I won't be involved in this happy time. You
will. I KNOW you will. I'll smile down from a cloud with a silver lining. : -)

I could not have survived without Opiod medication. I do get angry when I know that
someone disapproves of my meds. It happens in my own family. Fancy that!

Thanksgiving is coming up -- I don't have anything to wear. I don't feel like shopping.
I can't afford to shop. I don't even know if I'll be able to go to dinner...and I'm
never hungry except for pie.

I think I have muscle spasms, Tina. I'm always torn between Xanax or Xanaflex.
I know I can't take both at the same time.

I'm so miserable I'm bordering on sounding humorous. Don't laugh!

Pamela knows tomorrow is another day. Hang in there, Pain Pals.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 11/13/2008 3:58 PM (GMT -7)   
Pamela, my own mother gets on me about my pain medications simply because of the public's view we are all junkies. i was watching days of our lives today (i know.... i have been hooked since i was 12) anyhow, one of the characters is starting to show a pain medication dependancy. yeah here we go. and they have already shown him as having a dwi & possibly killing someone. i think i am going to write them a long letter. i just laughed & popped an oxycodone. my fiancee got a kick out of that!!! lol. probably bad humor. ;) i take zanaflex as well, i think it works pretty well for muscle spasms. occasionally if its bad i will take a soma. i keep a 2 week supply just incase it bothers me in my sleep. as for the fibromyalgia, i am currently on lyrica & cymbalta- with some success. there is still that morning & ouch factor when i am touched. i live in tampa & there is always a stude program going on- they have one right now for fibromyalgia & constipation from pain meds. i almost signed up for them (i have never done that before but i would assume they are safe) the good thing is maybe there is some new hope coming!!!! hope you have a great night- always a pleasure chatting with you. -Shannon ((hugs always))
RX's: Oxycontin 60 MG 2x's daily; Oxycodone 30 MG 4x's daily; Soma 3x's daily; Lyrica 100 MG 3x's daily (all for pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x at bedtime; Cymbalta 60mg 2x's daily (for pain & fibro); Restoril 15mg at bedtime; Zanaflex 4mg 3x's daily; Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 11/20/2008 10:54 PM (GMT -7)   
Pam I think that if after 6 1/2 years of this pain and it is still not in control (most of the time)with your meds. you need a new DR. new meds. Or to take another look at surgery.I know that for most of us that the pain cannot be controled every day but you seem to have a heck of alot of really bad days.So I think that it is time to try something new.
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 11/21/2008 9:22 AM (GMT -7)   
My friend Pamela, if appears that maybe you did not try your muscle relaxers out, the Zanaflex? Listen if you have this bend which I assume is the scoliosis, you can bet your bottom dollar you have spasm. Do you have any pain into your shoulders? Is there a particular reason you won't try your muscle relaxer out? I do wish you would give them a try, what if you had medication sitting right there that may help you and you refuse to take it. I know you have anxiety issues which will cause a person to tense up even more, which can lead to muscle spasms. I just hate to think you may have a medication right at your fingertips that may afford you some relief and you won't take it. Thats really sad. Have you ever wondered how much your pain contributes to your anxiety issues?
 
Surgery is not for everyone by a long shot. I have seen many successful neck and back surgeries back in my working days. The key to any surgery is finding the best dr out there. Its a two fold thing, the dr can only do so much and then the rest is up to the patient once they are at home and following the instructions to the letter. I saw many people overdo it because they felt so much better after surgery and of course that always knocked them several steps back. A person also has to have their head on right when having any kind of surgery. If a person has a negative attitude towards surgery then, most likely that person will never do well afterwards. Also, if a person has waited perhaps too long to have a particular surgery, then the odds of a total success are not as great. Its like anything else as far as surgery goes, you talk to one persn and they say they did great, talk to another and they will say it was a disaster. One thing in my own personal opinion,  is its not to the patients benefit placing all this hardware in people. You are trying to trick the body into accepting foreign material that is not suppose to be there. Very high odds of the body rejecting this hardware. I have seen too many people having to go back in for surgery for hardware removal, once they did that, they felt so much better. So, that says something for all of this hardware they are putting in people.
 
It all boils down to finding the right treatment that you respond to the best. What may work for one may not work for someone else. The same goes for medication. People react differently to meds and metabolize medication differently. Its pretty much a crap shoot when you start on the medication bandwagon.
 
Hope everyone has a LPD. But with cooler weather coming in its hard on these bones,lol. Hugs Susie


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 11/21/2008 10:01 AM (GMT -7)   
Pam,
Stray is right, it does sound like muscle spasms. I used xanaflex for a while after my first surgery and it did pretty well but has to be taken regularly to get the best result. When it stopped working so well and they had increased my dose a few times, we switched over to baclofen. It also works pretty well. I get them alot, especially in my lower back and the front and back of my thighs, to the point that they almost put me on the floor when they hit.....so I understand.
I'm sure that most of us here do too.
I tried methadone not long ago and was so sleepy, and would fall asleep at the drop of a hat. Not good with two little guys 7 and 8.....and two teens who are more interested in cell phones than keeping an eye on their brothers....LOL
Anyway, there are several other meds that you could try.......have you given Opana a try? Some report excellent results with it, and there are still others. I know that you said that the methadone works best for you, but if it comes to a point where it is not cutting it anymore, before you decide to go the pump route, try some of the other , newer and some of the older meds. You might be surprised at the results.
I was told that it was time for me to consider a pump too, but I'm not ready to go that route.....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 11/21/2008 11:47 AM (GMT -7)   
Hi All,

There are several issues I'd like to respond to in Sandi, Susie, and Mom's posts. I'm going to keep
this short and come back to them.

Sandi, you have really been through it. It sounds like you're doing well despite it.

I don't know a thing about Opana but will look it up. My pain doctor advocates for me to have the
dang pain pump. It's frustrating. He isn't willing to try new things. I will ask him about Opana.

I have moved a lot during this time of having chronic pain. I have found it unbelievably difficult to
find the "perfect" doctor. I don't think I'd know it if I found it. I have had some extremely bad
doctors. Doctors who may have slept through the chapter on intractible chronic pain. Scary doctors.
Mean doctors. I hear about them too on the forum. Makes one shiver in their boots.

For the most part I just make do with how things are. They could be worse. I know that for sure!
Sometimes I think this pain just is what it is and I should learn acceptance better. Other times I shout
it out and come to the forum and learn stuff that I could't learn from any book on the market or
any googled space.

Thank you all for being there. Wonderful. Really.

Pamela yeah

Post Edited (Pamela Neckpain) : 11/21/2008 11:51:48 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 11/21/2008 12:10 PM (GMT -7)   
Awe Pam, I know you have had more than your fair share of idiots that hang a shingle, so, so sad. Don't give up, yes one day you will find a good pain dr and you will know the difference. We never lose the ability. I really hate to see anyone settle for second best at anything in this life. I still say, keep looking, you have nothing to lose, but alot to gain. Hugs, Susie

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