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Posted 11/14/2009 11:12 PM (GMT 0)
I am a rather typical Failed Back Surgery Syndrome patient with Degenerative Disc Disease and other stuff. I thought Fentayl patches were a gift from heaven until I developed a sleep disorder: I am aware for the first 36 hours of a new patch, then sleep the next 36 to catch-up and then start again. Not exactly conducive to life as we know it.

So, my pain doc sent me to an anesthesiologist-surgeon to do some things: facet joint surgery (worthless) then a test for intrathecal pump. Well, whatever he used (and he ain't talking) caused an immediate allergic reaction: day 1 vomitting; day 2 I went psycho-pulled the catheter out of my back, attacked the ICU nurses, ripped apart a cloth restraint and then had to be restrained by leather belts. I have no recall of any of this.

Does anyone else have a sleepdisorder reaction to Fentanyl and/or did anyone else go pyscho during the intrathecal test?

I am also on: Nucenta 50mg, Lyrica, 75mg, Testim, Paxil, 50mg, Flexerol, 6mg
Posted 11/14/2009 11:45 PM (GMT 0)
Babidor,
Welcome to HW Chronic Pain! I'm sorry that you have had to join us here but glad that you found us. I am on the fentanyl patch but have not had the experiences with the not sleeping for 36 hours and then sleeping the next. In fact, I don't think that I have ever heard of that type of reaction from fentanyl.
They should have used either morphine , fentanyl or some other type of opiod pain reliever, or baclofen. There aren't too many medications that can be used with the pump at this time.
What kind of allergic reaction did you have? Vomiting is not necesarily an allergy but is pretty common with morphine, pump or not. You need to find out exactly what medication was put in the catheter/trial pump assembly because whatever it was, it doesn't sound like you should ever go anywhere near it again....by the way, the vomiting could also have been because of the catheter insertion. Sometimes, one will experience the vomiting because of the loss of a bit of spinal fluid during the insertion.
You may have had a reaction to the meds they gave you for the insertion procedure rather than what was put in the catheter.
You may want to check into what you were given for the procedure itself. Versed is commonly used to give some sedation during procedures like that and I do believe that versed has caused some reactions such as you have described.
Sandi
Posted 11/14/2009 11:54 PM (GMT 0)
Thanks for writing so fast. Yes, one of the options might be the versed. am now 10 days post-surgery with terrible headaches so we can thrown in some spinal fluid leaking. I will head to the e.r. later to get a blood patch.

The more I hear about my going psycho the scarier it sounds. Apparently I was yelling then unresponsive. It really is all going to come down to a very logical swallowing of a bottle of something to end all this. What bothers me is that people assume that wanting to check out means you are unstable. I would think that after 14 years of chronic pain nothing is saner than to want to end it.
Posted 11/15/2009 1:10 AM (GMT 0)
I had a severe reaction to Versed once! I had dislocated my jaw (well, a patient had punched me and thus, dislocated it while I was in health care) and the doctor needed to set it. He gave me 2 medications IV, Ketamine and Versed. When I was given the Versed, I apparently jumped off the table and rambled incoherently while threatening to punch nurses if they didn't let me see my husband right then! That is just not like me, and once they went and got my husband they said I calmed down. My husband said that he could tell I was not myself through this ordeal and it scared him. I did get my jaw set finally but they had to sedate me completely with general anaesthesia. I'm still not sure why it caused me to flip out, but I won't let them give me that med again...

Hope you figure it out soon!

Tammy
Posted 11/15/2009 1:16 AM (GMT 0)
Wow!!! That was me. Strange though I didn't go nuts until 24 hours post-op. I do wish you so much luck and improved health. From my experience of 5 spine surgeries PLEASE try every conservative treatment before you let them cut you. You already have degenerative disc disease, you don't need to de-stablize your back further. Current data indicates that fewer than 20% of spine surgery patients get long term improvement.
Posted 11/15/2009 2:57 AM (GMT 0)
I certainly am warmed by your concerns for a stranger. However, while I may be a lunatic about lots of stuff, I am lucent and clear minded about my decision to vacate these premises in the not too distant future.

I have 5 herniated discs which means that there are options that will cure by spine. Living, if you call it that, on a schedule that has me awake for 36 hours then sleeping for 36 hours is no way to run a railroad. Constant and ever increasing pain doesn't make the future too appealing. I have never been a drain on any society that I have been part of and are not going to start now.

I have degenerated from a guy who ran 100 miles each week, was the CEO of a $500MM public company that I started and who flew around the country 3 days each week being productive. Now, my world is the size of a queen sized bed, taking up the space this 55 year old needs to be in the fetal position.

So, while I have prayed for real pain relief, that ship is not coming in over the horizon.

Thank you for being a wonderful person,
Bob
Posted 11/15/2009 3:00 AM (GMT 0)
 

 

Wow!  I was thinking about the reaction you had after surgery...and I think it's a combo of the medications and sleep deprevation... People don't think that lack of sleep can do much harm but it can cause people to do many crazy things.  I really think that your lack of sleep over long periods of time PLUS the added stress of surgery PLUS the meds you were given for and after it really was a bad combo. 

 

You may never know what the cause was, but something did cause it.  And I agree 100 % about trying more conservative measures before going under the knife...I too had 2 back surgeries, one was Spinal Fusion at L4-S1...and no help.  As a matter of fact I feel worse and my back feels more unstable then before.  I am lucky that they didn't use hardware and only used the material they chisled out of my spine...

 

I have had back problems since I was 20 and I'm now 42...so I understand how you feel.  Like nothing will ever get better and is this what I have to look forward too?  It sucks, but it's better then not being here at all. 

 

I HAVE to think that something is just over the next hill...something that will help me.  If I don't think that way I'd be so much worse...so please please please try to remember that it will get better.

 

We, I will be here for you...

Me.

Posted 11/15/2009 3:09 AM (GMT 0)
Thank you for your kind thoughts. My fusion was at the same level. What a waste. Surgeons never really discuss how low the odds are of you getting relief from spine surgery. Then, when it fails, you become a walking reminder of the surgeon's failure and quickly become persona non grata in that doctor's office.

So, failed fusion, failed micro disc, failed facet joint, failed intrathecal. At some point even Mickey Mouse has to face reality.

Thanks again,
Bob
Posted 11/15/2009 4:33 AM (GMT 0)
Hello again Bob,

I am also concerned about what you said about the pills. I have had two failed surgeries so far and one that has caused me to be a parapeligic. Now, I guess I am lucky in that I am not in the wheelchairs 24/7,  I am darn close to it and will be before too long,  but considering that I was a walking, talking human being, busy mom of 4, Girl Scout Leader, Cub Scout Pack Committee Chair, volunteer Instructor for Red Cross, and the very busy wife of a police officer three short years ago and now I can barely stand on my own two feet for more than 5 minutes,  can't walk 100 ft on my own accord, without leaning on a cane or a shopping cart to hold me upright......well, let's just say I can understand a bit of how you feel when it comes to the unfulfilled promises and the lack of adequate pain management and the persona non grata feeling, I have experienced far too often.

I live with a constant state of pain that even fentanyl barely touches on my good days. On the bad ones, like the last few, it is all that I can manage to sit/lay down and hope the days ends soon. I don't sleep, in fact, the sleeping pills we've tried wire me up, instead of putting me to sleep.....so those are useless. In fact, I've been up and awake now for going on 32 hours.....and I know that it will be 4 or 5 am before I finally manage to sleep for an hour or so only to wake up and do it all over again.

There are days Bob, I think that we all feel like throwing in the towel and saying, enough......if this is all there is, then maybe I don't want it....but we have our families and our friends who love us, no matter what our physical condition is.  We do matter to those who love us and who we love in turn.

Yes, your life has changed and done so dramatically, but you are still alive and breathing and you can make what you choose to with this new life as it is given to you. I don't know if you will ever be able to go back to being a CEO for the 500MM company, or do the things that you did in this life before your failed surgeries and treatments, but I do know this much, if you throw in the towel now, you will never find out what you could have done with this new life that you have been handed.

I've heard it said that people who live with chronic conditions are some of the strongest, most courageous people on the earth and I think that I believe that. I know that my husband could not live with the levels of pain that I do on some days. I am not saying that he is not strong, because he is, just not in a way that it takes to live with chronic pain, all day, every day and he will tell you that himself.

It takes courage to get up each day, knowing that the pain levels will still be there, just waiting for us to open our eyes....and it takes strength to go out and try to find some way to help ourselves, and others who are also searching....and you obviously have that, or you wouldn't have made it this far.

None of us know what tomorrow may bring, some new treatment, some new medication, but I do know that if we aren't here, we won't ever know the answer.

We can offer you support, and an ear when the going gets rough, we can offer a laugh at a joke and a shoulder if you need to lean on us for a bit....and friendship, but you have to stick around with us.

I know it's hard to keep on going Bob. We all do.....but if we don't, where does that leave those people who depend on and who love us?

Gentle hugs,

Sandi

 

Posted 11/15/2009 4:54 AM (GMT 0)
Well said 123 and Bob remember that everyone in this forum has a chronic problem and life is worth living because we never know when the answer to our problems could be around the corner. You are too strong a person to throw in a towel, people love you and care about you and you would hurt them by taking the easy way out for yourself. They need you. Take care and I'll keep you in my thoughts and prayers and make sure you check in with us often so we know you are okay and still plodding along like we are.
Posted 11/15/2009 5:35 AM (GMT 0)
Bob,
I want to welcome you to the chronic pain forum of Healing Well. This, IMHO, is the best site on the internet for support and the sharing of experiences. And besides sharing the physical pain itself, pretty much all of us have to decide whether and how we're going to deal with the psychological pain that comes from all the losses we experience. You are not alone in having a "past life" while you're still here living and breathing. Again, I'd say most of us, especially those of us a little older (I'm about to turn 60) have had the plans we had for our "golden" years shattered. And many of the younger people here have to adjust their goals for their future lives.

It sounds to me that the pain that's worse for you right now is psychological, the losses, and that means we have to grieve. Many of us also take anti-depressants and see pain psychologists or other therapists to help us make some kind of peace with all these things, and also find meaning through other avenues. I'm not happy about it any more than you are. The plans for the last third of my career were cut off at the knees, but I am determined to figure out some other way to contribute to the world, and find meaning. Please, consider these things.

We can be here for support, but can't take the place of professionals. There are some excellent resources in the ChronicPain101 thread at the top of the posts. I hope you decide to use some of them. It's also a good idea to read through the forum rules.

Again, welcome.

PaLady
Posted 11/15/2009 5:41 AM (GMT 0)
Hi Bob:

I also have failed back surgery syndrome, DDD, spinal stenosis, facet syndrome, spondylolesthesis, etc., etc., and after exhausting every form of conservative treatment I went the surgical route, and in 14 years I have had 23 surgeries related to my back. I have had the decompression and fusion and have rods, screws, and cages from L4- S1.

I have a Spinal Cord Stimulator as well as an Intrathecal Pain Pump with Dilaudid and Bupbivicaine (a local anesthetic), as well as oral meds for breakthrough pain and muscle spasms, and still my pain is at a constant 8 - 9 with spikes to 10 on the "pain scale".

I find it absolutely rediculous for the doctor to consider your pain pump trial a failure because you had an obvious adverse or allergic reaction to something that may or may not have been directly related to the pump. There are several different medications that can be administered through an intrathecal pump, and very often it takes some time to find the right combination of drugs that work for you. Many doctors know how to put these pumps in, but they have very little knowledge of how to manage the pump properly and many people are horribly undermedicated as a result. I am dealing with that dilema myself right now, and despite the fact that I absolutely love my pain management doctor, it took a dear friend from this forum to make me see that he is out of his league with me and I need to find a doctor who is much more experienced with the pharmacology aspect of the pump.

I absolutely understand how it feels to be at the end of your rope, I struggle with the same line of thinking you expressed quite often, but after meeting several people on this forum that have been where we are at and have found doctors that have really helped get their pain under control, I have some hope (which I didn't have at all before) that there has to be a doctor that can help me too, I just have to find him or her.

It also has helped tremendously to be able to talk to people that truly understand every facet of what living with Chronic Pain is like. As hard as some of our family and friends try to understand what we go through, they really can't. And let's face it, some of our family and friends don't want to try and understand it.

Before you go down a road that you can't come back from, PLEASE give us the chance to be of some support to you, this by far is the best support site you could possibly find, and we do care very much about each person. We consider ourselves a family, which you now have become a part of. Feel free to "vent" about how you are feeling, or just read the posts that others have written if you don't feel like posting yourself. I am sure that you will easily identify with the issues we all write about. I can't tell you how many times I have said "I could have written that post word for word myself".

Lorie
Posted 11/15/2009 5:48 AM (GMT 0)
Thank you all for hope. I now know that I am not alone and I guess it really can only be with fellow chronicers that I can openly discuss this issue. Lorie, you are so right, no one at home really wants to keep hearing it after 14 yeas, as if I can use the mere passage of time to cure may pain.

I would love to know if anyone else gets the sleep disorder I get from the fentanyl patch. I am would like some guidance as to whether the intrathecal pump is so worth it that I would be an idiot not to go back and try it all again.

Night all- my 36 hours is up and so this vampire has to go to ground.
Bob
Posted 11/15/2009 5:53 AM (GMT 0)
    Hello Bob! WOW!...sounds like you have been run through the Mill! I'm not experienced enough to advise you here, but Sandi has given you some very sound advise, or maybe a view point you may not have thought before. Please reread some of, if not all of the reply's here. I would venture a guess that all of us here have some form of CP, and many have had it for a very long time. You mentioned that you thought Fentyal patches were a gift from heaven. I guess my question would be if your PM could find a med that had the same effect without the severe side affects, wouldn't it be worth a try? Yes, you have gone a very long time with CP, but I'm asking you to please let the PM redial in a med that may work well for you. Hang in there, and keep a close watch here, as there are many a member with situations simular to yours. You will hear this many times, but this is an excellant place to be, and were all in the same boat persay. Man...I feel for you! Can you tell us any more about yourself? Wife, children? Hobbies?

                                Michael

Posted 11/15/2009 7:30 AM (GMT 0)
Hello again Bob:

There is no question in my mind that it is worth it to give the Intrathecal Pump another try. I would, however, find another doctor to do it. Just the fact that he will not discuss what he did with you puts up big red flags for me. You need all the information you can get about what medications were given to you as well as exactly happened so that they can stop it from happening again.

I am sure that others with pain pumps will be along as well and will give you their opinions and advice. If I can answer any other questions you may have about the pump, feel free to ask. Has anyone ever suggested a trial with the Spinal Cord Stimulator?

I have never tried fentanyl patches, I've only had it by injection immediately following surgery, so I can't help you on that one.

Lorie
Posted 11/15/2009 8:23 AM (GMT 0)
Just wanted to drop by and support what others have said. By the forum rules we don't allow talk of self harm on the forum. Even though you haven't said it in so many words it's there and we are all aware of it. You do dance with your words to elequently!

Normally I would have deleted what you said about shortening your painful existence but you know what??? I believe you are an example of someone who has already decided that life is worth another go. You have many examples right here in front of you each day of people living with pain, with miserable care from their medical team, with no insurance, with families who have turned their back on them or no family at all... and these members of HW are living proof that even with the pain and adversities we cherish every second of our lives.

Bob, I'm not going into the entire story but a few years ago I lost my 23 year old son to depression that he was a master at hiding. He felt life was too overwhelming. I can't begin to explain what it has done to my life. No family should ever have to go through that. But even though I saw no hope at that time, I chose to move on and learned to live with pain...emotional and physical. It's one of the main reasons I volunteer here. No one says our road is easy to travel...but we're not a bunch of sissies here. We are some of the toughest yet most gentle people you will ever meet. I think you are just the kind of guy we are looking for. Someone who can look adversity in the eye and kick it square in the butt!

Please do check out the CP 101 as mentioned above. One of the resources is links to university/teaching hospitals around the globe. If I were you I'd get in touch with the one nearest you. You should be given the respect of better pain control. I do believe most people's pain can be controlled enough to live upright and not be confined to a bed.

So how about traveling this road with us. We sure could use another friend to lean on when our lives get rough and we are always here for you. Here, take my hand <extending hand> and let's move forward...OK?

Warm hugs,
Chutzie
Posted 11/15/2009 8:43 AM (GMT 0)
Well, I am married (that was in doubt yesterday) with 3 sons, ages 18,16 & 13. We also have 6 dogs, all but one a rescue. From 1983 to 1991 I missed two days of running. We lived in NYC at the time and I was a regular Forest Gump running fool. Weight dropped to 150 (I am 5'10"). Running was a stress release as well as a means to battle diabetes and heart disease, my family's killer.

My only other hobby was reading. I was always good for 3 books a week, what with a lot of flying and many intellectual interests. Now, however, the cloudy brain I get from the narcotics makes reading a chore. While I never really practiced, I am trained as an attorney so intellectual pursuits were a strong prt of my free time. So: no more running and not a lot of reading.
Posted 11/15/2009 9:00 AM (GMT 0)
Bob,
See you're not even alone in the wee hours of the morning! I have been an academic for a lot of my life, and like you I miss the mental clarity I once had. The sharpness. We were just discussing that recently on the forum on another thread. The medications we often need never come without a price. It's always a tricky balance.

I'm not married, live alone and have no children, so my day to day experience is different from yours, but we'll still have much in common, I'm sure. I am not by any means finished finding some peace about all that's changed in my life; right now I'm also facing a precancerous condition that I have to have monitored by regular endoscopies, but I lost my COBRA in June. Have managed to get some low income, low cost coverage but it doesn't cover a lot. We all have our trials.

One thing I do know is I don't think I would have made it this far without everyone I've "met" on this site. Strangers we really aren't, not any more, even though only a few people have been lucky enough to meet in person. You'll also find a lot of animal lovers here, including me! I don't have a pet at the moment, but I hope to be in a position to get another cat soon. Have had dogs all my life, but physically they're too hard for me to manage alone. Oh, BTW, I've also had failed back surgery - double lumbar fusion. I declined my neurosurgeon's offer to go back in again to remove the scar tissue, figuring that would only lead to more scar tisssue.

There are some older threads dealing with pump issues (I only know what I've learned here about the pump). You could do a search of Healing Well and see what comes up, but a member named Straydog (she's one of our moderators - who are all volunteers and also suffer from the same ailments) has contributed a lot. She's having a hard time these days as she broke her arm and has a whole bunch of other health issues, but I'm sure she'll be along to respond to your post as soon as she's able.

I'm glad you've found us. I think you'll be glad yourself soon, if you're not already.

PaLady
Posted 11/15/2009 9:09 AM (GMT 0)
PALady: where in PA are you? Prior to our move to AZ in2002 we lived in Rumson, on the Jersey shore. We loved going to the Philly zoo and dining around town. I used to go to Pittsburgh regularly and Harrisburg once a month. THere is something massive about PA.
Posted 11/15/2009 9:47 AM (GMT 0)
Hey Babidor:

Do you still live in NY? I live about an hour from NYC.

We seem to have a few things in common: I have 3 sons - 22, 16, & 12.

I also have been dealing with CP for 14 years.

Lorie
Posted 11/15/2009 10:30 AM (GMT 0)
Wow! Freaky. When the boys were younger we wished we had a girl in the mix. Now, though, we realize how lucky we are.
Posted 11/15/2009 2:29 PM (GMT 0)
       Good morning Babidor! Well.....well....well, it looks like you have a few things in common with several members. Like I told you, it doesn't take long for the troops to rally around a new member in trouble. I felt much the same as you when I first got here a couple of months ago. My problems aren't nearly as severe as yours are, but they may be that way someday. I'm looking at my first surgery this next February to have L4 & L5 fused. I'm pretty nervous about it too. Babidor, you will find that your experience and help is needed here also, but in between that time lets get you surrounded by some of the best CP members in the world. Hang in there buddy! We will get you polished up and shinning again! I'm so glad you found your way here to this wonderful forum. Please do check here as much as you can, and the important thing, and this is really important!....let us know your there!.....I don't care if it's only one word, like "Hey!" I can assure you that many of your first contacts you have had last night, will be looking in earnest for you again. Yes that's right!....in Earnest!....because they are the type of people who do really care. Their not your average Joe, who you may pass on the street and ask you how your doing in passing, and never wait for the response, and keep on a walking. When you get a chance give us a shout this morning, and let us know how your doing. Also, one more important thing, if for some silly reason, you see your post dropping down to the bottom of the page, say something on it and re-post it, cause I for one have a bad habit of never going to Page #2 on this forum. It's kinda like out of site, out of mind. I can't speak for the other members here, but I'm sure some of them have the same problem. A good veteran member will look for, and attach themselves to a new member, and see to it that they get good exposure here on this site. All I can say is that, I have been treated very well here, and have found much needed hope, at a time that was critical in my life. Many of us here are tuned to the cry we heard from you last night. Chutz, one of our excellent forum moderator's, and I really hope that you go back and reread her reply to you. Babidor, you are very welcome here, and I hope you have brighter days ahead......Keep us informed about your progress...and we will see you soon my friend.

             Michael

Posted 11/15/2009 3:54 PM (GMT 0)
Wow, I read your postings and all I can think of is you gotta stick around and get your boys into college...
I've not had the surgeries yet for my back, but I've been denied procedures, one procedure which could help
is "to experimental" by insurance and we just can't afford it......I've had back pain for 13 yrs now due to a car accident
in 1997, but only with pain management for 2 1/2 to 3 yrs now and still trying to get the pain under control, my daughter just
graduated from HS this year and she smiled when she got into 2 universities, one of which was Northwestern in Chicago and the
other the University of North Texas...well, she got a very low scholarship from Northwestern, for which she would've been 100,000 in debt
for 4 years, so we had to pass them up as she got a full ride from University of North Texas for being a National Merit
Scholar Finalist, So make sure to stick around to see your boys thru school......it's so worth it....and like the other's said new things are coming out
to help with back pain.....Keep us posted and hope you can get a low pain day soon...
((((((((((((((((((((((((((((((((((((((((((((((((((Bob)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 11/15/2009 5:53 PM (GMT 0)
 

   Dear Bob,

 

      Good afternoon  :-)   My name is Dani. It is very nice to meet you. I dont want to intrude on your thread.. I know nothing of pumps or pain "patches" but I wanted to introduce myself and say "hello!". I hope you get atleast a little rest, and please know you are in our hearts and prayers here in New Mexico.

 

*huggs*

  dani

Posted 11/15/2009 10:33 PM (GMT 0)
Babidor,
I finally went to bed after I posted to you last night (or rather this morning!) so that's why I didn't answer your question. I was ROFL about your description of Pennsylvania being "vast". You sure got that right! I think it is one of the widest states. Just try driving across it! (I have)

Seems everytime someone else on the forum is either from PA or used to live here it's in the Philly area. I'm on the opposite side of the vastness in Western PA. A lot closer to Pittsburgh than Philly. I did get my undergraduate degree at SUNY at Stony Brook, so lived on Long Island for several years (many decades ago!) and loved taking trips to the city. Haven't been there in many years though. If I had the resources to travel now it would be out west, since that's where so many people on this forum seem to be! I do love the colors of the southerwest. Took one long trip there back in 1994 after my mother had died, and fell in love with the Grand Canyon, visited Sante Fe and Alburquerque and then drove across NM to the Canyon. Loved the red rock. Something energizing about it. But here I am now preparing for white on the ground (not my favorite season both because it increases pain and activities like shoveling come into play).

I am so glad you found us. See what a great group this is?

PaLady
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