I'm scheduled to see my NS this coming Monday14th, woohoo, I'm so excited that they fit me in and I may finally be able to get some answers to my troubling questions regarding whether or not I need another fusion for the lumbar region and/or will a Boston paddle be implanted to enable pain treatment for the lumbar, thoracic, cervical and the left arm/hand burning tingling pain that the existing SCS one lead does not cover.

However, I have a question, if, the lumbar fusion doesn't happen and the Boston paddle doesn't happen should I start a dialogue with my doctors regarding methadone? This was raised with me back in 2008 by my then GP who was retiring that year and who openly admitted he just didn't know what to do next in order to treat me. At that time, instead of my left arm the burning tingling was in my right arm/hand, the pain was so bad I was trying to lay my forearm and palm on flat cool surfaces at every opportunity and shaking of the hand to try and relieve the pain, I have always thought the arm pain stems from the cervical injury incurred in the car accident 2004. Anyhow, he suggested methadone and I recall was absolutely horrified, in my then ignorance, I thought methadone was a treatment for "drug addicts" and I thought OMG he doesn't believe I'm in pain, he thinks I'm an opioid drug seeking patient.....

Fast forward 6 years and I have come to learn methadone is cheaper than OxyContin, has less side effects including that of less constipation and apparently less addictive... Not that I'm addicted to oxy, I hate it, I hate the way it makes me behave, my voice gets louder, I'm far less tolerant of loved ones, I'm impatient and I'm sure I come over as overbearing, none of which I used to be. I used to be quietly competent, the professional caring family member everyone came to for advice and support. Don't get me wrong. The emotional and financial bank of Pam and Lyndon is well and truly closed and probably long overdue, but, I would like to have my old self back again, the one that could do things when it occurs to me, not when my pain meds have kicked in enough to mask the pain, or worse, made me feel invincible and able to scale tall buildings prompting me to do way too much and suffer the consequences the following day....

Should I consider methadone? How do I raise the subject? I'm asking because now since the failed back surgery of last year and the equally unsuccessful SCS implant my med intake has been increased to 80mg slow release oxy and up to 30mg oxy break through pain. That's up to 120mg a day and recently Valium added to the mix of up to 15mg a day. I persistently continue to take only 20mg OxyContin slow release and on occasions like today will take 40mg. I get up at 4am, take 20mg oxycontin with a cup of tea about 20 min later and if necessary will take a 2nd 20mg OxyContin slow release at about 11am. I find by 4pm the headache has chimed in so much I need the Valium and take 5mg and sometimes need another by 8pm. I take valdoxan 25mg and 7.5mg serequel at the same time every evening together with the additional Valium and look forward to that moment when I can no longer hold my eyes open as sleep takes over and the pain abates for that short period before I begin my broken sleep pattern. I try very much to avoid the oxynorm and will only take it if absolutely necessary and I'm out where people can see that I'm in pain. This means I'm on a roller coaster trying to manage my dodgy bowel with "make you go" movicol sachets as I'm desperate to avoid yet another bowel obstruction, I just can't face another of them and I'm terrified I'm going to end up with a perforated bowel one day. Having had one in 2001 it was not pretty and I never want to experience that again. I know that I really do need to take the full prescribed dosage, I know if I did, my pain would be far more tolerable, but I'm so frightened of the consequences of increased consumption, where and when does or can it stop.... On this high dose, well high for me anyway, I will never be able to return to the workforce, I'm only 52, I have so much more to offer, but on that level medication I won't drive a car and the job I used to do calls for a clear and rational head. Will methadone offer me the answer?

So thoughts my wonderful NT friends and fellow sufferers, what to do?

Please read this post first. Methadone has its benefits and risks.

http://neurotalk.psychcentral.com/thread202650.html

and difficult to discontinue:
http://neurotalk.psychcentral.com/thread202783.html

Have done some more reading, thinking probably not for me, don't like the idea of some of the side effects and withdrawal looks harsh.

Yes, methadone has it's risks; it can also be very effective and return some to a quality of life they haven't achieved with other pain meds.

http://neurotalk.psychcentral.com/sh...ight=methadone

http://neurotalk.psychcentral.com/sh...ight=methadone

http://neurotalk.psychcentral.com/sh...ight=methadone

Rather than putting the cart before the horse and judging books by their covers, it might be prudent to see if plan B (or C or whatever) is even necessary. I think it's prudent to research any/all meds proposed/prescribed, and discussing them thoroughly with your doctor(s). However, rather than pre-judging/selecting your own medication(s), I'm of the opinion that medication selection should be made by, or with the guidance of, a physician. That's (part of) what you're paying them for.

Doc

Hi Doc, as always, thank you for your valuable input, time and effort. You and and Mrs D are marvels.

Plan B, the fusion, it's been on the table ever since I had the L4/5 S1 fusion last year when they learned L2/3 was problematic. My NS referred me to a new PM, hence the trial and unsuccessful SCS implant. I'm very wary of having yet another fusion done, in hindsight, I wish I had not had the L4/5 S1 fusion done. The last L4/5 fusion done in the 90's I think was holding itself as well as it could and that the actual problem was the L2/3 but because I had the stress fracture to S1 and X-rays showed the L4/5 fusion failing they focused on that. If I agree to have the L2/3 fusion, it will be my 5th, it will not reduce my thoracic or cervical and left arm pain so I'm not sure if it's worth it..

Plan C, the Boston paddle, if I don't have the lumbar fusion. Having a laminotomy apparently is a very painful procedure to recover from and I'm not 100% convinced it will work and block the pain in my thoracic, cervical and left arm. The Boston paddle here in WA is rarely used, to get it I need to see yet another NS and PM. I don't get to trial it and I can't find out from anywhere if the new Boston paddle runs at the high frequency like the Nevro with no buzzing sensation. With my headaches, I just don't think I would be able to cope with constant buzzing sensation.

So I'm exploring all non surgical routes so that when I see the NS next week I will at least in my mind be able to make informed decisions. Medicinal cannibas is illegal here in WA.

I have decided against methadone, I hope to return to the workforce and with the detail you and Mrs D gave along with further research I can see that it's a drug that won't work well for me. It's all very frustrating and I guess I'm just feeling despondent, demoralised - feeling sorry for myself and wishing I could turn back time rather than getting on with it and being more positive. Apologies to everyone and thanks for taking the time to read my posts and offer your valuable insight.

Hi Pam,
Since you have decided against methadone, May I offer some advice on OxyContin dosing?
I was on it for 2.5 yrs up to 120mg daily. I think if you take it more evenly spaced out, even though I know you don't like to take all that is scripted to you. Perhaps take the 20mg 3x a day spaced out every 8 hrs. I think you may get more even relief.

I initially found when I first took it, it was scripted only twice a day(I started at 20 mg twice a day) and the pain coverage NEVER lasted 12 hrs. I told my doc and he gave it to me 3x a day and said a lot of folks need it 3x a day. When I only took it 2 x a day, I felt very unwell for the last couple of hrs of that 12 hrs., a bit nauseous and headaches, a general malaise yet very anxious and pinchy feeling, it almost felt like a mini withdrawal. Maybe that is what is happening with you?

I know you don't like to take that much due to your perforated bowel issue and certainly that is scary but, you need to be at your most clear headed when you meet with the NS. I also hope someone helpful and knowledgeable is attending the appt with you...it is really helpful and knowing you, you will go with a list of questions and concerns.

I can't recall if fiber is a difficult issue with you but I control opiate induced constipation with prunes or Yakima fruit paste. Certainly the prunes are easiest, I get them in a ziplock pouch and eat several spaced throughout the day, totaling about 6 daily.

These decisions are all so intense and stressful...you have my sympathy. I suggest you focus on pain relief first and then, deal with return to work because you are not going to return to work without getting the pain under control.

When I read your story and what you have endured I think, how does this dear woman ever get enough relief to get any sleep at all. Every moment of shut eye must be blessed relief for you. Last week as I was awaiting facet joint injections for migraine/disc issues my pain was brutal and no amount of my regular pain meds were touching it and sleep was non-existent. I had my doc give me Elavil(amitriptiline sp?) which is an anti- dep often used for pain which just knocks me out. I literally knocked myself out for the 3 days prior to my facet joint injections with Elavil...just got up to use the bathroom. My family was kind enough to help me out through this ordeal, bringing me food and handling all household issues.

I wish you the best Pam...it sounds like you are covering all the bases. Be kind to yourself, I was also the professional caring family member that everyone leaned on....it is your time to lean on them now...that is what family and love is all about. I know how hard it is to give up the " I can handle it all" mentality...it took me years to accept help and realize, I can only do what I can do. Once I accepted that, it was cathartic.
All the best, D.

Hi D, thanks for your input also. I am so grateful for this board and it's posters and threads. So much value comes from the honesty and experience NT's share daily. I am allowed a maximum of 12 grams of fibre a day, 1 sprig of broccoli can contain up to 4 grams...

I will try the spreading out of 20mg over 3 times a day. I am well aware that my fear of taking the prescribed dosage puts me in a difficult scenario. The PM who upped the dosage when I was hospitalised in January to get the severe pain under control is unaware of my intestinal issues, I have not had opportunity to explain that I have had 2 bowel resections with 14 inches removed and had a stoma previously. My NS was horrified when he became aware of my intestinal challenges by chance. As he was discussing the scheduled surgery my husband asked how the "cage" is inserted, he explained it's done through the stomach and has a much higher success rate than the rods and screws coming from the back. My husband told him we have been told to avoid any stomach surgery at all costs. Her last general surgeon said her insides are so bad that any stomach surgery could result in fatality. Hence the reason why I have again rods and screws not dissimilar to the failed fusion I had in 1994. Only this time I have rods instead of plates so they shouldn't break.

I bled out once on the operating table in 2001 from complications and peritonitis, had 27 blood transfusions and my heart stopped 3 times. On the old fashioned but more reliable pain scale I was well above the 40's and never ever want to experience 5 months of being hospitalised again. It was beyond excruciating and I was at one stage in emergency apparently begging my husband to smother me with a pillow. Even the X-ray technicians used to come and visit me on the ward as they were so overwhelmed by what I went through. Hence the reason why I call my husband my rock, he has been on the other side of all this and suffered as much if not more being unable to do anything other than sit, wait and watch. On the up side, he is very well versed in how to deal with emergency situations, talking with doctors and knowing when to take control. Including saving my life when one nurse rocked in to inject me with an unscheduled injection. Turns out it was for a different patient in another room entirely and the substance I'm highly allergic to. Big hoo ha over that one... Sorry for the off post digression folks.

Hi Pam,
Thanks for taking the time to explain your health issues and surgeries in more detail. When you go to a doctor, it must feel like, "where the heLL do I start".
You just can't cram all that important info into each appt, yet, with you, it is important they know all the details. So it is pretty terrific that Lyndon is so on top of things for you.

12 grams of fiber is not much fiber....I just looked on my prune package and 4 prunes are 3 grams of fiber. You poor kid, like you don't have enough to monitor.

What you have been through is stuff that most of us, or I should just say I, have never come close to experiencing. I can't fathom all those surgeries and 5 months in the hospital and pain from all that. And all that on top of the car accident and other back surgeries. I am so sorry you have been through so much.

I hope your NS appt goes well and they opt to give you the option you are most comfortable with, with the highest success rate and pain coverage. You sound strong Pam and very determined...like you would try anything if it might help you and you're not going to stop until there is nothing left to try. My prayers and positive energy to you and Lyndon and your entire family.
Hang in there, D.