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16785591 tn?1451596681

Weaning off Fentanyl Patch

My primary of 20 years standing seems willing to work with me to reduce by 12 mcg every moth or every other month
meanwhile here is a bachground summary of my problems.

For 25 years have been  suffering from osteoarthrytis. Both hips replaced. Botched cervical diskectomy and lumbar laminectomy in  2000.  Hip replaced in dec 2000 other hip in july 2009. Nov 26 2013 lumbar decompression L1-S1 and fusion with rods screws and cages L4-S1.  Never recovered from this procedure done by an orthopod AND a neurosurgeon at Rothman Thom Jefferson in Philly.  In 2010 diagnosed with DISH at Utrecht medical center. at the end of april beginning ofmay 2015 I fell off the "cliff' and 4 days after first  muscle spasm was emergency admitted to Capitol Health in Hopewell NJ where on May4.  Was there until may27 and in Merwick rehab from then until July 24.  Home since then.

Problems? sepsis and a brush with septic shock. Had 100 ml antibiotic drip daily  from bout may 6 through july 22.  Kidneys were FULL of kidney stones and DVT seen in legs. SOMETHING had infected the psoas major on my right side and caused it  to abcess.
The pain was unreal and i  screamed when people  touched me.  I was also incoherent and delerious. The bouts of delerium lasted until mid june.  wife says they thought you were senile old man I kept telling them no you were not  senile.

To  quiet me down they put me on 150 mcgs of fentanyl patchs.  That worked.  At Merwick i knew i was on them but no one EVER said WHAT they were. I have tried the taper and think that i will continue. Did see a pain management doc last week.   he wants to remove the fentanyl CT and give me 3 or4 five ml of methadone  perday.  Don't think I will go along with it. I am  now at 62.

finally my  november 26 lumbar  deompression CLAIMED to have cleared out compression in the spinal canal and the foramina.  But a september 2014 MRI showed severe stenosis in foramina and at more  than one place in the canal.  On i think may12 2015 another MRI and a CAT scan were done and these too showed severe stenosis.  The radiologist impression was osteo myletus diskitis at L1,2,3.... right next to the psoas.  I  am beginning to think the rothman surgeons DID NOT DO what they said they did!!!

When i saw the surgeon in october 2014 told him i felt terrible and showed him the MRI he refused comment merely said fusion was successful and  wished me luck although he did ask to borrow the disc which he showed to his neuro colleague and then returned without comment
8 Responses
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18312923 tn?1463945255
Gordon
I can only speak from my own experience, take heed at my comments.  In 2007 (9years ago) I purchased my dream motorcycle a new Black Harley Davidson Softail Deluxe. Two weeks later I was in a motorcycle accident.  I was T boned by a drunk driver.  My left leg was crushed flat between her bumper and the motor of my bike. I was wearing head to toe leather and a helmet in a state that does not require them. The whiplash  that occurred after my bike cleared my body caused a 2" X 1" gash in the back of my helmet and paralyzed my left hemi-diaphragm.  As a result of the impact I threw a PE and was forced to have a clot screen installed.  I had 14 surgeries over a period of years trying to fix this and that.
Ten months after the accident I went back to work.  It was too soon and too hard.  I stuck with it.  One year to the day I re-purchased my dream motorcycle 2008 Black Harley Davidson Softail Deluxe.
Through all of this I have been on chronic pain medicine.  In the beginning I was on close to 300mg of extended release oxycodone. I eventually found a hospice doctor who was willing to manage my pain.  My savior was Fentanyl. I had no quality of life without the pain relief.  The doctors thought I was a drug seeker and to hell with being in pain.
I have tried to come off of the patch numerous times, my body was not ready.  I get so sick of the pressure society puts on chronic pain patients. My family members are the worst at judging my pain management.  If only they could have been walking on this leg for the last nine years.  The truth is I am trying again to come off of the patch.  I decreased my dosage, 50 mg, every 48 hrs, by 25% every ten doses. As time went on I was able to last longer between changes, I pushed it. When the withdrawals started coming on I changed the patch and put a warm washcloth on it for a short bit.  My last 12.5 patch fell off 7 days ago. I don't know which part of my body wants it more my brain or my leg. I am struggling with withdrawal now. How easy it would be to just put a patch back on.  I have promised myself six months to see if the part of my brain that relieves pain naturally comes turns back on.
Now my advice to you - live your life.  Don't give up your quality of life because you "think" you should.  Society is dealing this boomer generation a crock of crap about pain management.  Do we die young (commit suicide because of unbearable pain) or do we live longer under pain management.  You do what your body and mind requires.
I am leaving my pain management door open. If it hurts and I don't have a quality of life, I am going back.
Oh yea, today a have a fully functional leg.  I little trouble with my breathing but still working on answers to that.
Have a great life!
Lucilleathome
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16785591 tn?1451596681
lake winnebago

but on ward to new question
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547368 tn?1440541785
Wow! Oshkosh is about 90 minutes north of my hometown - and my new WI cottage. I've been to Oshkosh multiple times - and have extended family there.

Small world!
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547368 tn?1440541785
Sorry, forgot to respond to a few items. Yes I live in the FL, in the Panhandle. If you know FL than you'll probably know the area called, "The Forgotten Coast."  It begins after leaving Panama City Beach area and continues east along some of the most pristine and beautiful beaches in the continental USA. It's Paradise! Sugar White Beaches and Emerald Blue Waters of the Gulf of Mexico is my front door. I find Peace and healing as I wander along the shoreline(s).

I am sorry to hear about your family home in FL. Sadly there are areas that have succumb to crime and drugs across the USA. It hurts more when it's our home - or our hometown.

I'm glad to hear your pain levels are not high at this point. I hope they will stay manageable. I require opiate therapy on a daily basis. I would not function without it.

Looking forward to hearing from you again soon. Best of luck.

Take Care,
~Tuck

I was raised on a farm outside a small town in WI. Yes there, like every where there is crime and drugs - including my home town. However we are blessed to not have an overt portion that is full of drugs and crime as one finds in the cities. There isn't a street that I would fear walking down at night in my WI hometown, now population 10k.
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1 Comments
my father was from Oshkosh....
547368 tn?1440541785
Thanks for responding to my post.

First I would consult a good attorney that handles medical malpractice. It can't hurt to see if you have a case or not. Be sure not to inform any of your medical providers that you are considering litigation. I promise you that if you do, you'll be treated differently and labeled. I know - been there, done that. So avoid even asking your medical providers for their medical opinions. regarding negligence of their colleagues.    

Spinal Stenosis can only be handled with surgical intervention. I am not suggesting that you require surgery now - but if the stenosis progresses only surgery will treat it. Unfortunately when it becomes extreme it can lead to loss of function - and at it's worse paralysis. If there's another treatment I sure don't know about it.

Yes you can be notified about activity on this thread including notes or messages left on your Profile Page. Be sure you click on the small square on the bottom left hand side of this thread that says, "Add to watch list." That will tell the computer to notify you per email as long as you have that function activated. Then go into your Profile or Home Page. Click on "Account Settings" feature located near the top of those pages, on the right hand side. That will take you to several options, one of them being "Notifications."  That page will ask for an e-mail addresses to send notifications and a multitude of choices to check - like "Send me an e-mail notification .... when someone sends me a note" and similar selections. Be sure to click on "Apply" and then "Save" when you have completed your choices.  

I hope that helps.

~Tuck
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16785591 tn?1451596681
is there a feature here where when someone replies to this thread I can receive an automatic email or do I have to remember to come back one or more times a day to continue to check for activity?

I got through the night okay without having to take a narco. so it's now 48 hours since the last one.

By the way I noticed  Tuck that you are in Florida it appears. I was born in Fort Lauderdale.    recently found out to my horror and amazement that my parents house on the New River  had become infested by drug addicts and would shortly be torn down.  seems  like a sad indication of the ongoing decline of our society.   both parents have been gone for 25 years or longer in the property owned by multiple people since then... but still...
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16785591 tn?1451596681
Hi Tuck,

I am trying to head to bed... so brief. I was laying out my experience mainly in hopes of observations like yours..  Yeah there  aren't any precise questions.  as to the dates 11/27/13 decompression alledgedly of the lumbar spine.  feb 24 post op improvement stops.  could walk better then than now, but on a plateau through the summer winter and spring.  But an MRI in sept 2014 showed severe stenosis where according to the surgeons reports there should have been none.  Then  a second MRI when i was deathly ill in may 2015 showed stenosis as well and  spinal canal restriction.  cat scan also showed nerve compression  when supposedly there was none.  we could pass a woodson between the nerve and bone the surgeons wrote.

I don't really know if there are any malpractice issues here.  but I sure as hell don't like  the way they treated me 11 months post surgery.  Question is what else is  going on? and short of another invasive surgery anything else to deal with stenosis?

If  i get through tonight without taking a narco i will have gone 48 with none.
not planning on moving anywhere so little worry about loosing  the primary Michael Dash who correctly id'ed the index case of anthrax in mercer county NJ in 2001.  he is written up in william Broads book "germs",   Inend toreport on how weaning goes.  No worry there.  than  you again.


I am taking photos i took of Russia and the himalaya and making pdf books with explanatory text.  where might i post  the urls?  anyone whose curious can download them.
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547368 tn?1440541785
Hello Mr. Cook,

Welcome to our Pain Management Community. I am delighted you found us and took the time to post. Holy Cow, what a bout you have experienced with surgeries, sepsis and injuries. My heart goes out to you.

I don't see a question, excuse me if I've missed it.

Your assumption my be correct, the surgeon didn't do what he should have done. Excuse me as I am not clear on the date of the surgery in relationship to the infection of your psoas and accompanying sepsis. Could it be the surgery initiated the infection near the psoas which smoldered and finally caused the nasty hospitalization?

I think you have made a wise decision to refuse the Methadone. Don't get me wrong, it has good pain management properties. I've heard many good things about it's pain relieving benefits.  However the rub comes if you lose the PMP that is prescribing it - if you have to relocate - or if you are a "snowbird."  Locating another physician that will prescribe Methadone can be impossible. I've read about those challenges here multiple times.

I am concerned that once you taper off the Fentanyl your pain levels may be unmanageable. I hope your PMP is willing to work with you. There are other opiates - or non-opiates that may be more in line with your needs.  

I thank you for sharing your story with us. I do hope you'll be active in our community. Feel free to respond to questions - and ask questions too.  I'll look forward to hearing from you again - soon. Best of Luck!

Happy, Healthy 2016!
~Tuck
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2 Comments
Hi I'm also on a Fentanyl patch-100mcg as I have Ehlers Danlos Syndrome. I'd had 3 botched knee surgeries which eventually led to the removal of both knee caps. I've also had a cervical disc replacement & deal w/chronic back pain & hip pain due to a hip/SI joint birth anomaly.
I literally just joined this site for a completely other reason than my pain issues. But I read your post about Fentanyl patch & about Methadone & knew I HAD to respond ASAP!! As I almost died from Methadone & feel as if I must tell you my story.
  After my 3rd knee surgery-mind you I had 5 back to back surgeries from 2001-2005. I was on every hard core pain med, muscle relaxant, sleep med, antidepressant, anxiety...you name it & I was on it. I also was only 28yrs old. I was diagnosed w/Fibromyalgia at the time & the Drs were clueless to what was causing my constant knee dislocations.
My Dr decided I needed to transition off of the Dialodid/OxyContin/etc, & sent me to a pain clinic. That's where my life in hell began! The "clinic" wanted everyone off of OxyContin-which I totally understand it is highly abused & very addictive. They transitioned me from OxyContin to MSContin, & then decided Methadone was a better fit. I had absolutely no say in the matter & was at this "doctors", & honestly I think my vet would be better w/chronic pain patients than this man, mercy to just be able to receive any type of pain med.
  After only 4-5 days on Methadone I felt horrible. I was mostly bedridden at the time so laying around feeling miserable was basically a normal day for me. I went to sleep on a Fri night after my dose, & the next morning my husband tried waking me up. It was normal for me to sleep 10+hrs a day & he didn't think anything of me not getting up. Until that afternoon when he tried to wake me for lunch & I was completely out of it. He tried everything & became very concerned to the point of calling my best friend who's a nurse. Very long story short...after every single measure including sternal rubs & even slapping me, I was unconscious but breathing.
  Paramedics I was told arrived & my blood Ox was down to 43. My friend told me as soon as I was in the ambulance they gave me Narcan after asking her what medication I was taking. She said I woke up kicking & screaming swear words, which by no means is my nature!
  After a few days in the hospital I was able to finally comprehend what had happened. The Methadone did not properly break down in my system & I had a horrible almost deadly reaction. The Dr at the hospital was perplexed why it had even been prescribed. I can't believe how close to death I actually was & that was after being on an entire shoe box of narcotics not to mention I was taking multiple combinations of these drugs!
  After this nightmare I was finally diagnosed w/having Ehlers Danlos & had my patella's removed. I then became treated w/much more dignity & actually transferred to a "real" orthopedic pain medicine specialist. The Fentanyl patch became an option to me about 5yrs ago & has changed my life for the better in every way possible. I'm by no means back to the energetic bubbly person I was prior to 2001, but I'm not laying in bed 24/7 as I did for many years. It's been a God Send for me!
   Please, I know you don't know me from Adam, but please please please be VERY careful & do as much research as possible about this med. All meds affect people differently but after my near death experience I feel obligated to voice my opinion & share my story. I pray you read this & just consider what I'm saying.
  Good luck dear & I hope things go better for you & all your medical issues turn around. I'm so sorry you've been through so much.
Hi jenifer

thank you VERY much
every experience is valuable.  much  appreciate the input.
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