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Implanted pain pump & laser spinal surgery
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BJKuehn posted:
I am a Chronic Pain patient having days where a pain level 5 is the best I have. So I'm researching a Pain Pump. Anyone thrilled with there experience? Also, reconsidering the laser spine surgery. My pain management dr. says don't do it -- but living in "chronic pain Hell" needs to change soon. Anyone have any luck with the laser spine surgery I've been seeing on the tv -- especially with Chronic Pain Disease starting from a failed Post-Laminectomy? I've already got a Spinal Cord Stimulator for the right shoulder, arm and hand radiculopathy. Just had the Occipital Stimulator removed due to infection and ineffectiveness. My migraines are getting worse despite botox injections (which worked the preceding 2 times!?) Also, need to rotate from my Morphine Sulfate -- anybody using anything new that doesn't cost an arm and leg? Most of the pharmaceutical companies' Patient Assistance Programs won't help people on Medicare (which I am), and while I have Humana, when I tried Opana, it ended up costing me $250./mo. And that was just 1 med out of 7. I've been a chronic pain patient for 13 years now, and my med. condition is bleeding me dry (money wise) - anybody else in this boat with me --- what are you doing? Please don't tell me your eating Spam for meals!
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cillie responded:
I also live with chronic pain. It's been 10 years for me. Mine started from having a lobectomy because of lung cancer. I've tried many different pain meds and I also had a neurostimulator put in my spine. It seemed to work for a few weeks but then stopped. I also had it removed after two years.

It's sounds like you are going to a pain clinic. If not, get your doctor to recommend this. Your migraines could be from your new meds. That was the reason I couldn't take many of them.
Oxycodone and Oxycotin are the least expensive. I can't take either because of the side effects for me.

We've also had to downsize due to our health. We use our credit card to pay for the expensive meds and pay as much as we can each month. My average pain out of bed is 7-8. If I semi-sit up in bed my level is about 3-4, but it's no life living in bed each day. My goal is a level of about 5 with activity. I can handle that much.

I take percocette, but I can't take too much because of the tylenol. Suppose to only take 3,000 mg tylenol a day. I also take an antidepressant which helps a lot. Omega 3 is also good.

For migraines I take Fiorocette and a cup of coffee. Also put ice or something very cold where the pain is the worse. Most of the time the cold compresses keep me from throwing up.

I wish I could be of some help to you. Please keep in touch and keep searching for solutions. God bless!
 
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ctbeth responded:
Hi BJK,

I take Morphine Sulfate long-acting.

It comes in generic form and cost about $30.00 per month.
Opana is a brand name form of morphine, thus quite costly.

Another member of this group takes generic Methadone. She has also posted that this cost her, also, about $30.00 per month

I'm so sorry that you're having such a tough time,

CTB
 
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annette030 replied to ctbeth's response:
Hi, BJKuehn

I am on the west coast and Beth is on the east coast, my insurance company paid over $175 a month for a generic of morphine in a long acting form, I switched to methadone when I went on Medicare because it is quite cheap out here. I would say it is a bit less than $30 a month, just a bit though. I am scared to death of getting into the donut hole.

It all depends on your Part D insurance company and their formulary. Using the present one, my generic meds do not require any further payment at all, but non-generic drugs are a bit pricey. I tend to stick to generics though, so it works for me. With my old company pain meds would have cost me at least $20 a month each for a copay this year, last year they were about $7-8 each per month. It is worth it to shop around every fall for the best company for you and the medicines you take. Use your computer and check out the different companies on the Medicare site. It is fairly easy, even I can do it, lol.

Take care, Annette
 
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ctbeth replied to annette030's response:
Perhaps my Rx MS is less costly because of the unique pharmacy within the pain management practice.

Also, I do not have Medicare part D, an pay cash for my Rx.

My dose is pretty low now and the Rx consists of just #30.

I had no idea that there are such differences region-to-region.

I'm curious now and will ask around how much my MSC would cost if it was from a retail pharmacy rather-than a private.

When I was taking Methadone, my dose was 40 mg/day and the price was about $20. per month.

Does that sound about right?

Even with the private pharmacy, when I was using 100 mcg Duragesic (name brand only), it cost me exactlky $1,094.00 per month. I can't imagine that was such a discounted price! The generic fentanyl patches were roughly a little-more than half the price, but I didn't fare well on the generic.

LOL, so you'd think with all that money I save with MSC generic, plus quitting smoking a few years ago (but I'd love a Marlboro light right about now!), that I'd have lots of extra cash laying about. ~NOT~

Where does all that saved money go?
I've never figured that one out, LOL.

It used to go to the shoe stores, but I don't even have an expensive shoe addiction any more.

Off topic, but I recently bought a pair of Dawgs Spirit shoes. They are amazing.

The link is Nomorerack. I have heard lots of negative comments about the company, I've been pleased.

NMR has the retail posted as $40.00. I did go to the Dawg's official site, and they are, indeed, $40.00.

Nomorerack charges $24.00 and $2.00 for shipping.

They are amazingly comfy and supportive:

http://www.nomorerack.com/daily_deals/view/261238-dawgs_premium_spirits_shoes___mens___womens

They come on mens and womens.
 
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BJKuehn replied to ctbeth's response:
I know this may sound a little funny, but does anyone live in a State allowing Medical Marijuana, and does this have any effect as any adjunct to the lower cost morphine sulfate? I unfortunately do not live in one such State, but have wondered if you could get it from an allowing State? I'm reticent to ask my PM doc for obvious reasons, but I'm so weirded out by even thinking of changing to Methadone because of the stigma attached. As CP patients, I know all I want is for the pain to go away as much as possible so I can have some semblance of quality of life. I just wish I had my old life, before CP disease. Thanks all for your encouraging words - I truly appreciate your inputs. As I asked in the initial inquiry - does any one have a pain pump implanted -- it's supposed to be better in terms of the lessened amount of meds pumped in since it goes directly into the spinal cord. Has anyone talked to their doc about it and did they have any adverse info or adverse reaction?
If someone has answered already, I'm sorry, but I'm not seeing it. Thanks again, all.
 
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Anon_57995 replied to BJKuehn's response:
I live in a legal state. It's not that easy.
First, you must live in a legal state, not just be treated my a doctor in a legal state.
There are only a few diagnoses that qualify, at least for now.
They include:
Cancer,
Glaucoma,
Spinal Cord Injury (not disc disease or spine nerve compression, but the paralysis spinal cord injury)
AIDS (not HIV, but the full-blown aids)
Cerebral Palsy- spastic, not flaccid.

I see that you write CP. Is this Cerebral Palsy, or chronic pain? That may make a difference for you.

Once the MD certifies the patient, yo can't just go out and buy from your friendly neighborhood dealer. You have tp get it from a licensed dispensary. Remember, MJ is still illegal by federal law, so dispensaries are very expensive and insurance does not cover the cost.

In legal stares, anyone can have an oz or under. It is not illegal, but one can still get fined, medical certificate or not.

Over an oz, and one can get charged with possession with intent to sell, and the intent to sell is still criminal offense, unlike the ticket for under one oz, which is like getting a traffic ticket.

So, it's a step in the right direction, but not easy, even in a legal state.

It is the MD's discretion how the patient's other meds are managed.

Good luck.
 
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ctbeth replied to BJKuehn's response:
Hi BJ,

I do not have an implanted (pump) reservoir system.

Just FYI, the opiate solution goes intot he epidural space and sort-of bathes the spinal nerves; it does not go into the spinal cord.

I did speak to my MD about it. He says that he doesn't recommend them for patients other-than terminal cancer, as his experience is that tolerance develops too quickly, and this makes reverting to by mouth opiate meds ineffective.

This is just one MD's statement, and I was okay with it, as I really wasn't seriously considering it, just wanted to consider options.

You may have said, and I don't recall- what is your pain syndrome? You don't have to answer- just wondering.

I hope that we all can get some relief,

BethH
 
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BJKuehn responded:
CTBeth, Cillie and Annette:
Thanks so much for the feedback. Sorry for not getting back sooner, but finally have a buyer for the house (hallelujah!). I'm in a significant increase of pain due to packing and such, and I doubt the search for a new home is helping much. I've decided to pack a little each day and come June 29, we should be good to go -- but where is a question now. Have a purchase agreement pending with one seller - hopefully they'll accept the offer. Keep your collective fingers and toes crossed for us.
My Pain doc gave me some Ultram for break through pain -- it's helping a bit, but I know I've probably got more diagnostics to come soon. The Osteopathic doc feels that I've got additional impingement of nerves due to my left arm and shoulder hurting with that overwhelming nerve pain into the fingers. He doesn't know however if its due to disc problems or more likely scarring from the past 6 excursions into my neck. But its an addition to my underlying problem. Also, having significant pelvic pain -- I think it may be pelvic prolapse. I'll keep doing Kegel's til after the move when I can see a gynecol. doc. Aaarrrrgghh! It's always something, isn't it? My husband is a hospice social worker and he tells me that I'm on a similar drug regime as some of his terminal patients. That's cheery. Morphine Sulf. ER, Neurontin, Effexor, Nadalol, Amlodipine Besy., Temazipam, Zolpidem, and a partridge on a pear tree! You all must have your own special cocktails, too. I'm just so tired of being sick, taking meds, seeing docs, inability to have much of a simple thing called life...just having a pity party and you all were invited. Sorry. It's just dealing with a major life change (moving) in addition to Chronic pain -- this to shall pass, right?

Bless all of you as my comrades in pain. May your lives be filled with something MORE than pain. One really, really good thing I'm trying to focus on is my new grandbaby girl, Kylie. She struggled into this life and her first few weeks were lived in NICU. If she can do it, Grandma's got to.

bye for now
 
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annette030 replied to BJKuehn's response:
Congrats on selling your house. Onwards and upwards!!!!

No worries, you will be fine.

Congrats also on the new grandbaby!!!

Take care, Annette
 
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tuloud54 replied to BJKuehn's response:
Hi BJ, I had a pain pump put in Nov,2012.After stopping work in Nov 08 I have been through the gauntlet with meds that didn't work,doctors that could care less and spending money that I did not have,I opted for the pump.I am only 58 but would rather live another quality 15yrs then just exist for 30 more. My pump has been incredibly effective. Dilaudid and clonidine combo really has given me my life back.Still have pain but once you have had severe pain,you tend to appreciate some relief more.I also had Humana and paid $100 total for surgery. I now have a computer to give myself up to 3 doses extra if needed. I take no pills and need nothing more.I would not recommend this for everyone but when I honestlt would rather die to be out of pain then live,the decision was easy for me.I see a great dr every 2 to 3 months and have been blessed.Pls stay strong for your loved ones and DO NOT overdue the physical stuff.Painfully.Tom
 
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BJKuehn replied to ctbeth's response:
Just read you email again - more carefully this time. I have chronic pain disease primarily due to failed post-laminectomy syndrome, etc. 1 year after my surgery, I walked - rather stridently - into a sliding glass door and would have fallen on my butt had it not been thanks to someone catching me. Following that, life began to suck like milk weed. I not only messed up the original surgical site, but also 2 levels above and 1 below. Neurosurgeon advised that I had 2 options: 1) have the 4 levels fused/re-fused, which would mean extremely limited neck mobility and no assurance that pain would not persist; or, 2) see pain management doctor. Decided to go pain management doc route. Cleveland Clinic (which I assume is not the only medical facility/doctor) does not like to do neck surgeries unless absolutely life-threatening or paralyzing. So on we go.

Hurray, at last -- we have a P.A. on a new home so we're not going to be homeless after all! All kidding aside, we truly did have to sell the home that we do love because of medical bills, meds. etc., but, puts me in a new city where I'll get a fresh approach on without leaving the Cleveland Clinic database.

Anyway, best to you BethH.

BJ
 
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BJKuehn replied to tuloud54's response:
Thanks, Tom - I think you're the first that I've read that had a positive reply to pain pump. Did you have to play with the meds before you found the right combo? I REALLY hate withdrawal symptoms whenever we go through opiod rotation. I know quite literally what you speak of when you write those last 4 lines. You have to have someone who's your "lifeline" - even then, there are days, Lord, there are days.

Wishing you continued and increasing relief -
BJ
 
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tuloud54 replied to BJKuehn's response:
BJ, Kudos on the house! Stress certainly adds some numbers on the pain scale. Pls read through my previous messages so not to bore the board. In 1990 I had an accident at work where a pallet fell on my neck and upper back. Felt like someone hit me with a sledgehammer.I had 2 surgeries on c4-5 and 5-6. Ever slept on your neck wrong? That is what mine felt like everyday. I was grateful for what I had left and learned to live with the annoying pain.I would not even take an aspirin because it really did nothing so why hurt my stomach. I thought I knew what pain was.God doesn't like us getting cocky so in 2007 ,my left hand got cold. 1 year later it went up to my shoulder. I did not work 1 day since. Tried all the shots,therapy, everything under the sun.I finally found 50 mcg fentanyl and 5 mg Percocet 4 times a day got me some solid relief.My family dr sent me to pain mgmt. and it was a nighmare from there. Pain dr took Percocet and basically told me to learn to live with the pain.Patch helped but not enough.This dr gave me no credit for the 20yrs of pain I had already lived with.If not for my arm and hand I wouldn't take an aspirin.Dr was rude and an idiot.Patch would not last 72hrs and he said he has thousands of patients and apparently I am the only one who has this problem. Found a real Dr who actually believed and more importantly,cared about me. Again,this is a big decision but I am very hopeful and turning back into my old self.ot everybody is happy with that but whatever/lol. I hope you shop till you drop to find the dr who cares.It's especially hard when you feel like crap.My family and friends knew me well enough to realise the pain I was in. Take the bull by the horns and get it done.You are so worth it.Stay positive and when you get the proper help,life will get back to normal. Normal but different. Painfully yours,Tom PS,feel free to ask anything if I can help you.It helps me too!
 
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tuloud54 responded:
Hey again BJ, just wanted to add that the best I have gotten on the pain scale is a 4.Something that helps even 1 or 2 points can read like I richter scale,exponentially. With my patch and a couple of vicodin the best I would have would be a five or a 6.The good thing today is my pain is a pretty consistant 4 on the scale.No peaks or valleys and am no longer worried whether my meds will work as promised. I can live with a 4.When you have been in severe pain,you appreciate any relief more. Painfully less,Tom


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