SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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Old 05-27-2010, 05:48 PM #1
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Default parathesia(s) caused by intrathecal pain pump?

After years of chronic LBP and no relief from moderate care I was told an intrathecal pain pump was my best option. Went through the 3 day trial in the hospital. Some relief with morphine, not sure right now of the amount (mg) per day. At the end of 2nd day I was throwing up quite a bit, constipated and really struggling to urinate. Told my young pain doctor this when he came to "visit" on his daily rounds. Third day he came by I had take phenegren, dolcolax, fleets..........having to sit (I'm a male) for 20 minutes or more to urinate. He says when he puts the pump in we can adjust the dosage or even change the type of drug being delivered and he'll send me to a urologist. Then, without gloves on, he pulled the tape holding the catheter against my back off and just pulled the catheter out with a "snap"! Didn't even put a bandade on it.

Not a drop of blood or anything. How deep could it have been for me not to have been in pain when it was pulled, why no blood, why no bandage if the catheter was in my SCF?

Pump installed April 09. First catheter tip crushed during implant, second one in w/o incident. Had to have 2 blood patches done from fluid leakage and horrific head aches. In the hospital for the second headache/blood patch for 5 days.

On my first office visit after the implant (4 days later to check the staples) I told the nurse and the doctor I had a strange burning sensation just above my belt line and out to both hips. Not a word or concern from the doctor. Pain/sensation gets worse, and is moving up to my upper back/shoulder blades. Still no reaction from doctor.

fast forward.......December 09 pump removed because of drug(s) (several)reactions/intolerances.

For almost a 6 months now the (parathesia) sensations have now gone down into both knees and feet. The burning in my feet has made a grown man cry. I'm 57 and consider myself as tuff as a $2 steak. But this burning in my upper and lower back and feet has whipped me. PCM doesn't know, referred to another PM doc. Have had to go through his list of tests to include repeat of MRI's from October/November of 09, physical therapy work assessment, blood work, nerve conduction (also repeats of Nov 09) and a psych eval.

Am I depressed? Dang right I'm depressed. Not dangerously, but enough to make a grown man cry sometimes with pain/aggrevation. I worked 37 years and a few months (24 US Army and 13 FDOC) without the first day of unemployment until I retierd Feb 09. I used to be one of the most active 56 year olds you could hang with. Now I'm a "whinny boy". 37 years of hard work to retire with this?

I'm grasping at straws here today. Down the middle of my back feels like the skin has been peeled off and my T-shirt is rubbing against my raw flesh. From my knees down feels like I'm standing in scalding hot water or at best a severe sunburn.

I've taken almost every kind of pain pill and even amitriptylene without the first bit of relief. Currently taking loritab 10/500 4/day and nucynta 100 4 times/day with the loritab. I get light headed and sometimes nauseated, but the burning never subsides. Sleep (good sleep) over an hour at the time is a thing of the past. Take 0.5 mg of triazolam and still don't sleep.

Besides euthenasia(sp), does anyone have any shred of advice or similar symptoms?

thanks in advance,
d-fumes
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Old 05-27-2010, 06:36 PM #2
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Default forgot to add

that I take 150mg of Lyrica in the morning and 300mg at night.

How do you get "editing priviledges"?

Lee
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Old 05-27-2010, 09:18 PM #3
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Default Hi Diesle

Hello Lee-

One of the greatest hurdles you had to overcome was your willingness to write your issues and put them here, for everyone to see. I started here because at 56 I was allowed to think in the direction of a Spinal Cord Stimulation implant. Among the mandated prereqs was the psychiatric eval. Being curious what to anticipate, I searched and the google tries led here. I stopped in and have been participating since March. I have at long last been through the Trial, and tomorrow I will meet the orthopedic surgeon again, and this time hopefully to schedule the permanent stim implant.

It matters not how tough any of us may be, pain can reduce any of us to a screaming pain filled being longing to have it over. By any means. I hear you when you talk of having had to be tough and active over your military career, as so many of my family members have been there, done that. Right now, our youngest son, a 20 year old serves in the Middle East, and that guy is tough. But, once I was injured, as I was in a high speed wreck on I-70 years ago all of my days of 12 mile mountain bike rides came to an end. Hiking the mountains, hunting, things of the past. Pain imprisons, or has that potential.

You have asked about when you achieve edit rights or status on the forum. Any moderator can speak with specifics. I know from experience, a matter of weeks and a number of posts seemed to mature my membership to the point I had a bit more freedom.... and yes, editing was among the freedoms. Just be patient, hang with the system. Post. Reply. Participate. You will arrive.

Even as I do not have experience with your implant since my docs selected and offered spinal cord stimulation [I loved the Trial by the way] as a means to better manage the pain I experience, I have known so much frustration in striving to gain control over my own pain, I can only share with you that I relate. Your situation has to be so tough, so hard. I have no doubt someone with experience matching your facts will reply and your dialogue will commence. I am just here saying, "hang in there guy" this place is a good place to learn much, and find help. I hope you find relief somehow.

And Lee, thank you for your service. I appreciate it.
Best,
Mark56
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Old 05-28-2010, 08:19 AM #4
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Default So Glad you posted here !

Quote:
Originally Posted by dieslefumes View Post

On my first office visit after the implant (4 days later to check the staples) I told the nurse and the doctor I had a strange burning sensation just above my belt line and out to both hips. Not a word or concern from the doctor. Pain/sensation gets worse, and is moving up to my upper back/shoulder blades. Still no reaction from doctor.

fast forward.......December 09 pump removed because of drug(s) (several)reactions/intolerances.

For almost a 6 months now the (parathesia) sensations have now gone down into both knees and feet. The burning in my feet has made a grown man cry. I'm 57 and consider myself as tuff as a $2 steak. But this burning in my upper and lower back and feet has whipped me. PCM doesn't know, referred to another PM doc. Have had to go through his list of tests to include repeat of MRI's from October/November of 09, physical therapy work assessment, blood work, nerve conduction (also repeats of Nov 09) and a psych eval.

I'm grasping at straws here today. Down the middle of my back feels like the skin has been peeled off and my T-shirt is rubbing against my raw flesh. From my knees down feels like I'm standing in scalding hot water or at best a severe sunburn.

I've taken almost every kind of pain pill and even amitriptylene without the first bit of relief. Currently taking loritab 10/500 4/day and nucynta 100 4 times/day with the loritab. I get light headed and sometimes nauseated, but the burning never subsides.

thanks in advance,
d-fumes
Hi Lee, I was hoping you'd share your post over here!
Man, you have been thru the wringer!
I'm particularly interested in the pain going down the middle of your back....
Is there also a rash or blisters that follow this line down your back?
This probably seems out of left field, but have you been tested for 'Shingles' ?
It is a VERY painful condition that has longterm lingering effects.....
Google it and see if that seems familiar.....

Also, have the doctors said anything to you about possible RSD (Reflex Sympathetic Dystrophy), same as CRPS (Chronic Regional Pain Syndrome)....
both are fancy names for unbearable pain that burns like heLL......

There is a forum here for that topic as well.
Also, the Peripheral Neuropathy (nerve pain) forum is chalked FULL of important information.....both forums are very active.....

I certainly understand your frustration. I've seen these terrible conditions reduce a strong man to tears and mothers of children ready to jump off a cliff.....but you MUST hang on to hope.

It sounds like you aren't getting any straight answers from your doctors and there's a good chance they simply don't know. RSD/CRPS and PN are all conditions that are VERY sketchy in the medical arena.
Thank God for this forum! It has literally helped to save my sanity.
PLEASE stick around and make yourself known to these other forums here and you'll soon be able to gather the inner strength needed to 'be your own detective'......
I can't emphasize enough how important it is to grasp on to the knowledge that is packed in these forums here......Check out the Peripheral Neuropathy forum and also the sub-forum listed directly under it in the main menu......

It is literally a crash course in knowledge on these painful conditions that have been put together painstakingly by very committed and knowledged members of this forum....

I guarantee you'll get nothing but frustration and fragmented (at best) information from the medical personnel unless you happen to find one who specializes and is well-versed in these pain conditions.

Now that you've posted here, I encourage you to read thru the PN information and see if some of the other folk's stories seem similar to your battle......then, literally, start your own notebook of tests you've had done. This can help rule out any systemic or autoimmune conditions that may be underlying causes......
IF you DO suffer from nerve pain issues, I assure you, there are battle plans in place to grab on to. THERE IS HOPE and you DO have a future!!
If your symptoms lean more towards RSD conditions, there is MUCH support here for that as well.
My heart really goes out to you. Please don't give up. Your life IS worth fighting for and you WILL begin to get answers......just become determined and take one step at a time.......

Here's the PN information site......highly recommend reading thru this:

http://neurotalk.psychcentral.com/fo...ysprune=&f=119

You've found a goldmine of help here my friend
You'll see.....
Rae

Last edited by Rrae; 05-28-2010 at 08:30 AM. Reason: added a link
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Old 05-28-2010, 08:27 AM #5
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Quote:
Originally Posted by Mark56 View Post
Hello Lee-
And Lee, thank you for your service. I appreciate it.
Best,
Mark56
XXXXXXXXx
You are more than welcome. It was an honor and a priviledge.

Lee
CSM, Retired
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Old 05-28-2010, 08:42 AM #6
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Quote:
Originally Posted by Mark56 View Post
Hello Lee-

And Lee, thank you for your service. I appreciate it.
Best,
Mark56
Ditto THAT!! Thank you brother!
God Bless you
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Old 05-28-2010, 12:23 PM #7
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Default

No shingles. No rash, nothing visable any where. Tested and retested for diabetes. One rheumotologist (sp) told me if I was a female he would diagnose me with fibromyalgia, but since I was a man (only 9% of fibro are males) he just said he didn't know and gave me the lyrica. It helps some I guess. But only because it numbs my whole body. Couldn't take the 300 mg in the morning and function safely.

I spent 4 weeks in an Army hospital in 1981 with a lower back injury. I had three chromioplasties done on my right shoulder in 1985 and 1986. In 1989 and 1990 I had 2 scopes done on each knee. I was diagonsed with Grade II chondromalicia of patellar and femoral condyles plus some other small tears and flaps. Had bi-lateral scopes on knees again in 2005. Was scheduled to have bi-lateral again on May 6, but Tri-Care wouldn't pay my ortho surgeon because he wasn't on contract any longer. Now having to start all over with new ortho.

I asked for a re-look on my VA rating several months ago and sent in all the updated MRI's, Xrays, diagnosis and records from 7 doctors. They (VA) has called me twice this morning trying to set up appt's for exams. They want their doctors to examine me in order to refute the diagnosis of my civilian doctors.

I know I'm not the first and surely won't be the last, but it's a shame at the hassles a retiree faces with the VA. Florida inmates get way better health care than vets.

Done whinning now. Thanks for the links and the support from all. I do feel welcome and encouraged here.

Lee
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Old 05-28-2010, 12:41 PM #8
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Default

Hi Lee ~ Another Lee here. lol. I wonder why your doctors haven't tried a drug such as Topamax. This type of drug is used for nerve type pain. It stops the burning/tingling/stabbing pains from nerve pain. I'm not saying that's what you have, but I'm just wondering if Topamax would help? It sure can't hurt to try it. Another drug similar, Neurontin, I wouldn't want to try as it makes you gain weight from water retention, makes you feel kinda "loopy" and just overall not very good. lol. At least that's what it did to me and ALOT of other people.

Why not suggest Topamax to your doc? i've been taking it for 8-9 yrs. now and I've never had an increase in dosage. I've been on 400mg. per day from the start. It's just a thought. Best of luck and I hope you feel better soon. Take care & God bless. Hugs, Lee
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



Often the test of courage is not to die, but to live..
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Old 05-28-2010, 01:07 PM #9
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Thumbs Up I hear ya

You are not 'whining', my friend Not at all.
And I must say, I agree Re: the VA system......from what I've seen in my dad's treatment, we'd be better off IN the @#$% pen!

Well, while your doctors continue squabbling amongst themselves, you can be jotting down bullet-points of info that you can relate to. The more knowledge you gain the better. Ask up front if your new ortho treats neuropathies......

just an fyi on the Lyrica.....it was a nitemare for me and my teeth went bad on me as a direct result of this med. I've finally lost the 30 lbs I gained while taking it. Keep a close eye on your dental.

And take a serious gander at the supplements (in the PN forum) suggested in nerve pain reguvinating.......At first I let it go out the other ear, but by golly when I started taking more B12 and magnesium, the pain spikes became easier and easier to control. Carbs (the bad ones) also were part of the culprit. I'd get pain flares after eating something sweet.
And, in my case, my thyroid was out of whack, (hyPOthyroid).....
so after these issues were addressed, I was able to establish a more consistent baseline on the pain scale......and I wasn't going in so many circles.
I know issues like these seem so futile compared to the horrendous pain, but I am more than convinced at this point that I could have saved myself much grief, frustration, and thousands of $$ if I would have known these things from the start....

Caring
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Old 05-28-2010, 01:31 PM #10
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no thyroid probs. Been checked. Wife tkes synthroid though. Tried teh neutontin some time back. Put me on my knees, when I wasn't flat on my back. I had rather operate in pain than to try to operate on stupid all day. I couldn't even drive I was so sleepy.

I took a left over amitriptilene last night..........went to speep at 840 and got up at 620. Couldn't hold my head up for long so I got in the recliner and have snoozed most of the day away. Won't take another one.

I've gone on just about a "starvation diet" to loose some weight and take some pressure off my back and knees. Have lost 21 pound in 12 days. Hope to get back down to 200-210 by mid summer.

thanks for the info.

D'f
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