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PostPosted: Tue Dec 14, 2010 1:59 pm 
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Hi It's Queenie,

Well this one looks like a tough one. I went to the E.R. 2 weeks ago after injuring my right leg with my motor chair. I am an amputee of the left leg.

At the time they said things looked alright & sent me home on 200mg. of Ultram, time released.

My right leg started hurting again and I saw my surgeon. All he said was, "It was a miracle I saved your leg last year". "There's not much you can do. Go home, see me in six weeks". Yeah, great. I woke up today with my leg hurting like hell.

Let me not bore you. This means an amputation. Here I am on 32 Mgs of subs(My sub dr. put me on 16mg a.m. & 16 mg. p.m. about 3 wks ago for Chronic pain Mgmnt. Before that I have been on subs 8 & 8 mgs since June of this year.

I am just about ready to get dresed and go to the E.R. and the tears are flowing all over my laptop because I don't know how the hell I am going to be able to bear that pain. I recall it from having my left leg amputated.

Will my drs. give me enough medication? I have good doctors and they are all affilliated but what I'm saying here is I AM SCARED!!
Thank God I found this forum and you wonderful people.
Pain is pain, no matter how you look at it. Can I do this.?

Prayers would help too. For those that have become my friends here, Thank you.

Queenie


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PostPosted: Tue Dec 14, 2010 2:46 pm 
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I'm so sorry about all this, queenie. Focus on those good doctor you have that you trust. I cannot imagine NOT getting adequate pain relief after an amputation. Regardless of the suboxone, I'm sure they will do what is necessary to get you some relief. I know you're scared - anyone would be in your position. Hang in there and I hope everything goes as well as can be expected. Take care and let us know how you're doing.

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PostPosted: Tue Dec 14, 2010 3:32 pm 
Wow im really sorry to hear about this queenie!! Like you said, you have good doctors that are all affiliated and clearly know what they are doing so im sure they will communicat with each other an get you the most effective pain relief possible. I cant imagine what your going through but i will pray for you!! I hope all goes well and again, im sorry this is happening!!


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 Post subject: Thank you
PostPosted: Tue Dec 14, 2010 3:49 pm 
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Thank you so much Hat & Lifesaver.
Lifesaver, I need those prayers.
You & Hat's words comfort me even though my heart feels like it stops everytime my foot throbs.

I just read the entire thread on Rossma for some courage. Like someone said in the thread, "Why can't they just knock on the door & say O.K. Let's go" Thinking & time is the worst thing.

Well, gotta start somewhere. I will keep you posted.
Queenie


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PostPosted: Tue Dec 14, 2010 3:55 pm 
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Like the others have said, this certainly is extremely difficult news. I have two quick suggestions for you. The first is, please don't put the cart before the horse here. It may not be as bad as you think it is. Certainly the first fear is to worry about losing the other leg but it sounds like its a little premature to say that will 100% happen. It may, and certainly you'll have to face it if it does, but it also very well may not and you'll go through all of this extra stress worrying about something that never happens. As hard as it is, try to take it one step at a time.

Second, if you are going to require opiate pain medication (and it sounds like you may), there just is no way it will at all work if you are taking 32 mg of Sub a day. You need to either get off of it or get into very low doses. There is just absolutely no way opiates will break through 32 mg of Sub. It just will not happen. I don't know your entire addiction history but at some point you may have to go back on opiates. You very clearly have a medical need here. There are downsides to all medications - or at least many of them. You and your doctors may need to weigh your need for pain relief with your addiction issues. Whatever gives you the highest quality of life is what you need to go with. If your pain is treated but the rest of your life goes to hell or you are at risk of death by overdose, something needs to change. However, if you have your addiction in check but are in extreme pain on a daily basis, that is not living either. You may need to be on opiates due to your medical condition. That is much different than those of us here that had moderate back pain or hardly any pain but got into problems with narcotics because of it. Don't put yourself through hell with the pain. At least in the short term, you may need to discontinue the Sub. At the very least, you really should speak with your doctors about this. I wish you the best of luck and please let us know how things are going.


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 Post subject: Dear Queenie
PostPosted: Tue Dec 14, 2010 7:02 pm 
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This topic you posted should be an eye opener for everyone on Suboxone... We really never know when something tragic happens where SERIOUS pain could be an issue... Now you have to " HOPE " the Dr.s understand and care about you.. I wonder who we blame here !!!!! God Love you , I feel for your situation, I will PM you in the morn. Mike


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 Post subject: Stigma
PostPosted: Tue Dec 14, 2010 7:45 pm 
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Thank you, Mike, God Bless you.

I want ALL of you to know that I try to fight for each and everyone of us, in this forum, new or old. The word "addict" treats us unfairly.

By this I mean, I bring up Suboxone, Subutex, whenever I can.. If a nurse, doctor, etc... says "What is that?" Watch out, here comes Queenie.

To be in a situation like I am today, in my hearts mind I see also many of you and it is heartbreaking. I haven't gone to the E.R. yet because I want to make sure my emotions are ready. By this I mean ready enough to know my situation will be treated fairly & professionally. I have to be sure my Suboxone situation is clear before any further steps are taken. I am fortunate to have all my doctors affiliated with the same hospital. But, I'm sure you all understand when I say I want to make sure everything is CLEAR. If the situation leads to surgery I don't want any confusion.
Thank you all for your wonderful support. This forum is the bvest thing that has happened to me. It has made me ready for whatever comes up medically. I have learned more about Suboxone here than from doctors. What a shame, but true.
Don't give up the fight to stay sober and don't leave this site. Special thanks to Hatmaker for giving us so much of her time & love.

Love & Hope, Queenie


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PostPosted: Tue Dec 14, 2010 11:00 pm 
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I’m so sorry to hear this Q I hope that you don’t have to go down the same road again like you had to in the past with your Left leg. Im goanna say a prayer tonight for you that you get better ASAP!

Just hang in there and hopefully everything will start to get better soon.


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 Post subject: Can't sleep
PostPosted: Wed Dec 15, 2010 3:15 am 
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I'm sure everyone has a side effect with Subs. Mine is Insomnia. From the very beginning that was my problem with Subs. I don't mind. It's a small price to pay considering the benefits.

So, if I can't sleep, I read posts from this forum I love so much. I have learned so much about many of you from not being able to sleep. I check the Lounge to see if anyone is there. 90% of the time, no one is there. We should try to go to the chat more often. It's a great place to get to know each other better and meet new people looking for someone to talk to,

As Hatmaker always says, "Come here and vent all you want, it's o.k. that's what this forum is about". Thanks Hat. You are so generous with your time and love and I don't get tired of thanking you.

So, here Iam at 1:50 a.m. venting. My foot is hurting, I'm crying, scared to death of needing surgery, everyone is asleep and here I am.

Thinking, thinking and crying. I keep reading and reading and learning. What nice people I have met here. My goodness, what a shame that we have to go through this. I read about doctor's that are so cold and uncaring and it angers me. I read about how we relapse and learn our lessons. I remember how I found all of you one sad, rainy night with 2 percs and 1 sub. I can still remember it was a Monday night. There was a meeting in the Chat room. Lucky for me, because you all came to my rescue & told me to "FLUSH THE PERCS". That was the start of a new way for me. I learned things about subs that my doctors never took the time to tell me.

I met people of diffferent ages going through he same thing I was going through at 68yrs of age. A 25 year old told me "It's alright, you'll be o.k." How that touched my heart since I have a 22 yr. old grandson who is in his 2nd year at Univ of Vermont. I couldn't be prouder.

So, I read and I cry and I vent. My love to all the friends I have made here and all the ones yet to come.


Whatever happens with my leg, this I know. I have a place to come to when I'm lonely. You see, my days consist of going from my room to the bathroom to the kitchen & back to my room. A far cry from someone who worked for a prestigeous Insurance company for 20 yrs. Someone who danced her youth away at the Palladium Ballroom in Manhattan. People cheered as I danced. I only have one of those legs now and even that one is failing me.

Yes, I am lonely. But as long as I have my laptop & this forum I have a place to go and people to talk to that understand me. That don't get tired of me and pray for me. As I wipe yet another tear, I thank you and appreciate you. God bless you all.

Queenie


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PostPosted: Wed Dec 15, 2010 10:12 am 
Hi Queenie, I've been thinking about you and I'm so glad you're still here! I hadn't seen any posts from you for a while and I was concerned. I'm so sorry you're in the predicament you are in. From what you have told us before it sounds like your doctor and hospital are much more well informed about Sub than a lot of other places. If you do have to have another surgery I hope you will sit down with your doc and set up a plan ahead of time. Maybe it will entail you tapering off Sub to go on full agonists for a time, and then back on Sub. If this is the case I trust that you can do it, and we'll be here to help you through.
In the meantime I hope the 32mg is helping. Don't forget to also take something like ibuprofen or alleve in addition to your Sub if you can. Those things really do help because they reduce inflamation as well as reduce pain.
I know how you feel being homebound. I'm not technically homebound but I do spend the majority of my time at home, and sometimes I feel kind of trapped, so in a way I know where you're coming from. I feel like when I'm home I spend more time dwelling on my problems and get more depressed. I know it's hard but reach out as much as you can. Pick up the phone and call someone, post more on the forum, and never turn down an opportunity to get out of the house.
You're gonna get through this. You have been through a lot of adversity and have faced it all. I know you have and do spend a lot of time taking care of others. Now you need to accept help for yourself. We're here to support you - keep the faith.
Lilly


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PostPosted: Wed Dec 15, 2010 10:38 am 
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Bless you! You have no idea how your timing affected me. Lily, I can't even cry anymore. I'm falling apart and I can't help iit. I haven't slept for 32 hrs. I don't even have the energy to pick up the phone & call my Doctor. My daughter is at work. I can't put anymore on her. She is my rock. My son-in law is away on business. He couldn't be better to me. I am alone in this big house and I feel like the world is caving in on me. If only I could sleep. But, I can't.

Thank you, thankyou. God Bless you. write to me if you can. I have the laptop next to me like a mother holding her baby. Wha's going to happen? I don't know. I am so afraid of so many things. I have always been a strong person but this time I can't do it anymore. I feel like I have no more fight left in me.

Love you, queenie


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 Post subject: Get this!
PostPosted: Wed Dec 15, 2010 1:24 pm 
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Doctor's like kids will always make you look bad

After I have bragged so much about all my drs. being affiliated and how they know about subs, blah, blah, blah.

I finally get up the courage to calll my surgeon about my right leg. After being on hold on & off for about 20 min. A lady comes on the line and asks me to describe my symptoms. I did that and said :But it's important that you notice in my file that I am on Suboxone. Do you know what that is?" She replies, "I'm kinda familiar with it". and, get this, after all that time holding, she says, "He is seeing patients now. Give me your number & he will call you back" This was supposedly my surgeon's assistant. Yeah right.

So much for bragging about my wonderful doctors. I give up. Now if only I could sleep.

Queenie


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PostPosted: Wed Dec 15, 2010 2:50 pm 
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O.k. guys. I finally got up the courage to call my surgeon.

It seemed like hours until his asst. called me

I have very poor circulation & should expect pain. PHEW!!!!

As long as the wound from the motor chair incident is healing, I am out of the big black woods. He is calling my pharmacy for Ultram I think, because Tylenol does nothing.

The wound is healing very slowly. But it's healing. That's the key word. I guess pain will just be a part of my life. It's up to me how I handle it.
Seems like I'm quickly becoming the little boy who cried wolf around here. If you are around my age you know what that means.

Good to have you guys at a time like this. I feel like biting my nail & saying "Sorry".

Thanks for your patientce & support

Queenie


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PostPosted: Wed Dec 15, 2010 3:27 pm 
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The demands of my job have kept me away from here more than usual lately, but I saw this and just wanted to offer my support, Queenie. You've been through a lot and I know it hasn't been easy. Hang in there!

This is a cyber-hug:

((((((((((((((((((((((((((((((((((queenie1959)))))))))))))))))))))))))))))))))))))


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 Post subject: so...
PostPosted: Wed Dec 15, 2010 4:04 pm 
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So, hopefully you do not need surgery right? Gosh I hope that is true!!! I was reading this thread yesterday and looking up everything I could find on what can be used to knock the Sub off the receptors so they could be covered with regular opiates, thus allowing pain relief. I'm sorry because I ran out of time and never finished my post and that's pretty crappy of me, considering how scared you've been.

I read about something called Sufentanil that supposedly is strong enough to dislodge the Bup. The excerpt I read said that this drug is used in people who are in acute trauma situations and are on high doses of Bup. I'm not a doc or a nurse. Don't know if it's true. I know I've got no clue what you're going through, but reading your story made me well up with tears of sympathy and fear for you. This could happen to any of us and we could all be on here saying "please help me...I am so scared!" It occurred to me that I should pm you..maybe you live by me. I could pack up my toddler and bring you food and just give you a big hug. I wish there was something I could do for you. I bet most people on here feel that way.

This is a serious dark cloud that hangs over those of us on Sub, at least in my opinion. I worry about it. What happens if we are in a car wreck? I worry when I ride my motorcycle, because what if I fall and get a compound fracture? Anything can happen, so I think it's scary not knowing what we would/could do in those situations. My old doc told me that people on Sub are supposed to wear a bracelet or something that would tell a paramedic that we are on Sub. Does anyone even do this?

I think we all need to know what medication would be effective at removing the Sub if it came down to an emergency situation. I don't automatically expect doctors to know anymore, and I want to know what to tell them to do.

Queenie, I don't know if this is true either, but the anesthesiologist who took care of me during my surgery (after I'd been off Sub 1 week) said that even though it was best that I'd been off for a full week, if I hadn't he could have 'given me enough opiates to knock the Sub off my receptors'. I don't know if this really works or if it only applies up to a certain dose of Sub, but it was reassuring. I hope you can find a doctor who can explain very clearly what would happen if you do require pain relief or major surgery in the future. It seems to me that this is information you absolutely need to have some peace of mind.

God bless you!!!!

laddertipper

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 Post subject: I am blessed
PostPosted: Wed Dec 15, 2010 5:31 pm 
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How lucky I am to know people like you. Even if only writing to each other. But hey, I felt that hug and it was sincere.

Before I say anything else, PLEASE!!! don't ride that motorcycle too much! My heart skipped a beat when I read that part of your post. OMG, what a daredevil and on subs. If I lived near YOU, I would go to you and hit you over the head everytime I saw you even near the motorcycle.

Well, my surgeon put me on Ultram. My circulation is extremely poor and I will have pain just about for the duration of my days. Now I have to talk to my Sub Doc & see what changes I need to make. I thought my leg problems were over. Guess not.

Fortunately, the pain is from my pinning my leg with my motorchair. Those electric scooter chairs are like cars and they weigh a ton.

I have a wound from where it squeezed me the most and the surgeon said as long as it is healing, I am out of the amputation woods. So I have to be very careful. I am on blood thinners and Crestor for cholestral. My drs. are doing everything to help my vascular disesase. It's been a very hard 3 yrs. 7 surgeries. Who wouldn't get hooked on narcotics. I needed plenty of them.

Well, I have babbled on enough. Thank you so much for such a touching post. I hope a lot of people read it so they know just how great the people here are.

Let's keep in touch. I need people like you.

Love Queenie


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PostPosted: Wed Dec 15, 2010 5:56 pm 
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Ladder, you are correct about Sufentanil "theoretically" being able to break through Suboxone. I have read and have been told the same thing. Unfortunately, I've never heard from anyone directly that has seen or experienced it work. Many people may not have heard of Sufentanil, although I'm betting you have heard of Fentanyl. Sufentanil is actually a hybrid or derivative of Fentanyl. Fentanyl is one of the most potent opiates (by weight) known to man. While we often measure opiates in milligrams - for example 10 milligrams of Morphine, the equivalent of 10 milligrams of Morphine is roughly 100 MICROGRAMS of Fentanyl or 1/100th the weight. Sufentanil on the other hand is up to 10 times more potent than even Fentanyl is. They are currently in trials to offer a Sufentanil patch - much like the Durgesic, Fentanyl patch. Those last three days while this new Sufentanil patch would actually last for 7 days.

Anyhow, in theory, Fentanyl should be able to get passed Suboxone and Sufentanil should be even better. The problem is, some ERs don't even have Fentanyl (many/most do, but some do not) but when it comes to Sufentanil, even fewer ERs will have it or even the authority to administer it. It is mostly reserved for the OR.

I've said it before on these boards and will say it again, from all I have read and heard, Fentanyl seems to be your best bet at breaking through Suboxone, but even that is going to need a large and I mean LARGE as in up to five times a normal dose amount. If I'm ever in the position, and conscious, I'll strongly suggest Fentanyl or Sufentanil - then again, if I'm not concisions I guess I won't be in pain anyhow. I do have a nearly 25-year background in healthcare so it does help me greatly in dealing with medical issues. Regardless, patients and family members have to take a strong role in their care. There is just too much for the typical doctor or nurse to know. Our best chance is to be armed with the information ourselves. You may even want to write it down and put it in your purse or wallet:

FENTANYL or SUFENTANIL - ask for it by name! Of course that brings up a whole other issue as asking for a drug by name shoots off alarms for drug seeking. However, if you have a broken leg, you're clearly not a drug seeker - or if you are, you are a drug seeker in pain! Hope that helps.


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PostPosted: Thu Dec 16, 2010 1:25 pm 
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Queenie, I'm glad you realize that the thoughts are truly heartfelt, because they are. IMO, there is something very unique about this forum and the people on it. There's an unusual number of truly kind, caring human beings here. The members on here support each other, and it doesn't matter that everyone is in different situations with their Sub (high doses, low doses, long-term maintenance, tapering off, etc.)

Queenie, thank God you are out of the woods as far as the amputation. Phew!!!!!!! I'm so relieved for you. I just wish that in those situations, doctors could not just inform you that such a thing was possible, but also tell you exactly how your pain would be addressed so you wouldn't have to stay up all night terrified. That's the doctor's job. There are tons of people on Sub and Meth, many of whom became addicted to pain killers because they had serious medical problems/surgeries before and are likely to need other procedures later on. I'd love to think that doctors who prescribe Sub would also be able to communicate with any other doctors and educate them on how to go about surgery, especially an unexpected one. I really think it's a travesty. Queenie, that you were told "you might need and amputation" and then just left to agonize about whether you'd have to endure physical torture. That's just so sad to me! :cry: That shouldn't have happened to you. They really should have handled it better, IMO.

I am very careful on my motorcycle. I should clarify. It's a dirtbike, so I'm not around any cars. And it's a small one, because I'm a shrimpy woman and I learned to ride only 1 year ago. There's a CHILD in the instruction manual. It even says, "Ask you parent or another adult this and that". :lol: At least it's a kick start! That adds a teeny bit more macho....

donh, I suspected that the Sufentanil wasn't used much, simply because it's not medical convention yet. It kind of surprises me how uninformed hospitals are when it comes to how to treat a patient on Sub. As I said, there are many, many people taking Suboxone and Subutex, so doesn't that cause a problem when there has to be emergency pain relief for those people? I hope in the near future, there are standards put in place for how to treat someone on Sub...and I really hope the standard is not to let people suffer, because that is absolutely wrong in my book. When I had surgery, I was off Sub for one week. Still, it took huge doses of Fentanyl to work. I've never understood why. Is that normal? After my surgery, which they botched, making it very painful, they gave me shot after shot of Fentanyl. The nurse was amazed. It did eventually ease the pain, but it didn't have any noticeable mental effect on me. I wasn't tired, my pupils didn't change....nothing. I felt normal. After that, I got a pain drip, and that worked perfectly. I was fine and felt nothing at all, no 'high', no sleepiness, nothing. When they took the drip out and gave me one dose every 4-6 hours.....BAD!!!! Pain!!!!! W/D!!!! It wasn't fun, and if I had surgery again, I'd insist on the Dilaudid drip for the entire time I needed pain meds, until I could go home and start Sub again. There's also something called Tordol. Not sure about the spelling. But that stuff really helped ease my pain after my surgery, especially after they took out my drip and discovered they'd also removed the wrong thing from my body, which really hurt. :roll:

laddertipper

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PostPosted: Fri Dec 17, 2010 1:52 am 
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Laddertipper.

Please tell me where I can read your surgery story. I must now how in the world they removed the wrong thing. Are you serious. OMG you poor thing.

I am going to look for it now. I know you must have written about it.

Careful on that bike anyway

Love Queenie


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