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kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/23/2011 9:35 AM (GMT -6)   
Ok just when I was feeling guilty for complaining about feeling better when everybody else was hurting so bad, God saw fit to remind me that I'm not better, I'm just not as bad. And someone please tell me why are we taught as children to sing the song "Rain, rain, go away, come again, some other day." We can all agree that not a single drop is welcome! Not only are we taught this horrible song, but we dance to it too. We buy happy yellow boots and spotted red umbrellas, oh the irony of it all! Only someone as warped as myself can laugh at the rain as I grab the control for my unit and settle in for a day of hot tea and bonding with my couch.I hope everybody has their meds filled cause it's going to be a long week. But as bad as we have it, Joplin, MO has it worse! Keep those people in your prayers. Storms are still coming.

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/23/2011 10:32 AM (GMT -6)   
Oh I hear you, my friend. Joplin is really suffering with the tornado aftermath. God bless them all and you, too.

Rain bothers me too, especially the build up before it falls. (The barometric pressure). I truly do suffer with it. Luckily, it doesn't rain that often in Ocala, Florida.

Take care.

Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/23/2011 10:54 AM (GMT -6)   
 
 
           Dont ever feel guilty about feeling good.......This is what I found on the orgin of the rhyme you posted here.
 
 
 SE wink
           
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/25/2011 2:26 PM (GMT -6)   
I can feel my unit where it was put and if I push on it very gently it moves with the muscle. That's soo gross! I'm an adult and I should talk like one, but then again I don't act like one so what's the difference? I can't believe how far I've come since the surgery. Just a couple of weeks ago I couldn't even think about sitting at the computer for a few minutes. Now I can make my own lunch like a big girl, remember I am a warped. But it does feel good to know that I'm going to be able to do some stuff again, not everything. My husband's name is Kenny and he's promised that when the dr says it's ok, we will start walking around our block. You have no idea how excited I am! We've had to stop doing so many things because of my health. We use to camp and go the beach with kids and amusement parks all the time. Of course that slowed down a lot but now we are ready to slowly try again. I now know how it feels to get a new lease on life, as soon as I'm finished healing. It still feels weird. It's like when you change meds, at first the pain is gone but your afraid it's going to come back. And your so afraid to do anything because you don't want to be the reason of the pain. And no, I don't have my unit turned up too high today, this is how warped I always am.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/25/2011 2:41 PM (GMT -6)   
    kat1661, for the benifit of some of the members, can you tell us how long ago you had the implant put in, and how long the healing process was. or has been so far? Where was it placed as well?
 
          We would greatly appreciate this information again, if you have posted it a while back....as I must have missed it.
 
   Glad you're feeling better....it's good to hear good news!
 
      Take care!
 
 SE wink  
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/26/2011 6:26 PM (GMT -6)   
No problem. I had a trial unit in March that worked. Because it worked my surgeon and I agreed to the permanent unit. It was put in on May 3rd. It helped right away but I wasn't supposed to reach, stretch, turn, twist, strain, bend, lean over, or lift more than 5lbs. It's only an outpatient procedure, even though I spent the night.
 
 Insurance companies actually give you this 23 hr thing, you have 23 hrs from the time your surgery is over that you can stay in the hospital. Anyway, since I knew my regular pain was going to be controlled, the pain I had was from the surgery. My surgeon gave me pain meds that helped and slowly the pain got less but that was the problem, slowly. I knew how everything was going to be once I healed, it was just taking too long!
 
Remember, you really can't do any of those things that I said or it will hurt, not to mention that it can move your wires. Basically it's like watching paint dry without the paint. But it does get better. All of a sudden I realized that instead of taking 2 pills every 6 hrs I am only taking 1 pill at bedtime. I tried to go without last night but with all the storms I was only fooling myself, plus it's only been 3 1/2 weeks.
 
Sometimes if I move "off" I will feel a pinch where my incision is. I know it's because it's not healed all the way. I have 3 different incisions. Each one is healing at a different rate. The lowest incision is taking the longest. It's also the biggest. I haven't had any problems with my unit. My only fear was when I went to Wal-mart for the first time, I forgot my remote, and I couldn't remember if I turned my unit off or not.
 
My rep said some Wal-mart's (high crime) turn their metal detector's up a little so it's possible it could amp up my unit for a second. So I walked though their security with my breath held, eyes scrunched, holding my side. I'm sure I looked like either I had a gun or a mental issue. Especially when I went though without a sound, then I relaxed. When you get your remote you get a temp card to tell stores you have something that will trigger their alarms, that was with my remote.
 
 When my permanent card came it went straight to my purse and I haven't left the house without my remote since that day! I have been back to Wal-mart with my unit on without any problem. Actually I haven't had any problem anywhere. It's just the first time your scared of everything. I don't know if this helps but here is my story.
 
 
 
(edited for eaiser reading) SE wink

Post Edited By Moderator (Screaming Eagle) : 5/27/2011 11:01:38 AM (GMT-6)


CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/26/2011 7:52 PM (GMT -6)   
Hi Kat,

Thanks for sharing your story with us. I've had the warning about store sensors too, but in five years with mine, I've never had a problem.

I don't know if your unit is similar to mine or not, but mine can be turned on and off with a magnet - so instead of having to carry my controller everywhere, which is quite big and cumbersome (the case is about 4 inches by 6 or 7 inches), I just carry a strong little magnet and keeper in my pocket and give it a quick swipe across my abdomen to turn on or off.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/27/2011 11:46 AM (GMT -6)   
I have the magnet to turn it off also, I was told to keep it in the glove box of my car just in case. And your right, the case is a little annoying to take everywhere but I would rather have it with me and not need it than need it and not have it. I'm the reason "murphy's law" exits. But even if I didn't take my case, the rep said until I'm healed the magnet could rip my incision soo, ya know. It's little info like that which makes me really appreciate my rep. When she gave me her card she said any problems needing re-programing we could meet at the dr's office or she could come to my house and if I had an emergency her home phone is on there. So basically when I got my unit I got a new best friend! The one thing I haven't had to do yet is charge my unit. I go back for my 6 week check up on June 6 and will be shown how to do it then. Is it hard to do?

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/27/2011 12:00 PM (GMT -6)   
I can't remember what sort of unit you have...mine is ANS and charging is easy but a little annoying. Once your incision has healed I'd recommend that you do short charges often. I've made the mistake a few times of letting mine get nearly flat and have to charge for hours and hours and hours.

With mine all you do to to charge is position a 'wand' much like my programmer, which sits in a belt, and then plugs into a power outlet. I can understand you not charging immediately because of hurting your incision, but I'm kind of surprised that they haven't shown you how to charge. Maybe you just have less load on yours than I do, or a different battery, but mine goes flat in a fortnight if I don't charge it. So glad you've got a got rep though. My tech is brilliant too. I'm one of his harder cases and he's still standing by me after five years!
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/27/2011 2:15 PM (GMT -6)   
They told me I didn't need to charge it until I came back for my 6 week check-up. With the pain meds they gave me after the surgery I didn't need to turn it on as much. But now that I don't need the meds as much, I'm using my unit all the time so I'm checking my battery level just to make sure I'm ok. The last thing I want is to be without juice or knowledge.

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 5/31/2011 3:59 PM (GMT -6)   
Guess what I did yesterday? I went to our state park's beach. It's only about 10 minutes away. My hubby & my teenagers spent the day, yes the day, at the beach. We got there around 11:00 and left around 6:00. I had almost forgot what the water looked like up close, or felt like. I couldn't go in past my thighs because I couldn't get my incision wet, so I got to stand with the toddlers but I didn't care and neither did my hubby. We were just as excited as the toddlers. Most of the time, I was under our beach canopy sitting down, but the few times I went in the water, I felt, or at least looked, normal. Before we went to the beach I took a pain pill, and the whole time we were there I didn't have a problem, when we came home I took 2 alieve. Now I don't know if I even needed the pain pill or not but I'm glad I enjoyed my day. I'm just happy to be out among people that don't grunt when they move.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/31/2011 4:11 PM (GMT -6)   
WOW...That is so wonderful to read!!!

So happy to hear that you are doing well and able to have a day with your family....

It's nice to see good results with the SCS...

I am doing a happy dance for you:)
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/31/2011 5:06 PM (GMT -6)   
It's so good to hear your story of success of your scs. It's great to hear that you were able to spend the day with your family at the beach. Cool. Keep up the good work

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/31/2011 5:53 PM (GMT -6)   
That's GREAT news :D I'm so happy for you!

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 6/1/2011 1:09 PM (GMT -6)   
My brother-n-law is considering getting a intrathecal pump. Do they have to be replace every so often? Another thing I'm wondering is, you control how much meds right? His dr already gives him as much meds as he wants and he still drives! Sometimes he doesn't even remember he went to the store. My husband, Mother-n-law, and Sister-n-law don't want to say anything to him because they don't want to fight with him or make him mad. I can't even begin to see their logic! When they say that I ask them if they would rather him kill a family with small kids or find him in a ditch dead? Yes, I can be very mean but I am ALWAYS honest! I don't know anything about these pumps, can someone please give me some information if it's not too personal. Thank you.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/1/2011 1:25 PM (GMT -6)   
 
      Hello Kat!
 
 
                 Yes!..the pumps have to be changes every so often, but I'm thinking its the battery as for the reason. I do hear there is one on the market now that never needs to be changed, but I'm just not sure about it.
 
       Also, no,... the amount of med's despenced, is not controled by the patient, but is set at the PM's or PCD's office. I believe this is done with some sort of wand and a computer system, but again I'm not the best member to answer your question.
 
          We have a couple of members here that are very knowledgeable on the pain pumps, and I'm sure they would love to help you, with this question.
 
       One thing you might consider, is when you change a topic in midstream from the original one, you might want to consider starting a new topic, and pose your question to the membership there.
 
     You will perk the right members interest much quicker that way, and may have a better chance of getting an answer, suitable to please your interest.
 
     Take care,
 
 SE
 
      
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Post Edited (Screaming Eagle) : 6/1/2011 12:58:23 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 6/2/2011 12:49 AM (GMT -6)   
Hi Kat, I have a pump and have had mine since June of 2005. They say the batteries in the pumps last usually 5-7 years, however, they have been known to last much longer than that. A lot depends on the rate the pump releases the medICATION.

No, the patient does not have control over the medication either. All patients are started out in the beginning at the lowest dose possible because the medication used in the pumps is so much stronger than what we take orally. In fact, most people with pumps end up on a lower dose in the pump because the medication is in a concentrated form. Medtronics makes a device called a PTM which will allow a patient to give themself a bolus. Now this is like getting a very small pain shot directly from the pump. Only the dr can program the pump to do this. Not all drs believe patients need to the PTM's and many will not agree to one.

Also before a patient can have a pump implanted they must undergo a psych evaluation and not everyone has passed these exams before.

There is a brand of a pump out made by Codman that does not run off of batteries, instead it runs off of a gas inside the pump. This pump does not have to be replaced unless the of course if the pump were to fail. My next pump will be a Codman and I am excited about that because that means no more pump surgeries. I am considered a high risk patient with anesthesia due to breathing problems so now you can understand why I am excited about this particular pump ,lol.My PM dr has begun implanting these this pump in several of her patients with great success.

If I can answer anymore questions about a pump please feel free to ask.
Moderator Chronic Pain Forum

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/2/2011 2:20 AM (GMT -6)   
Hi Kat,

I have a pump as well as the SCS, though the meds in my pump are partly to manage my dystonia and muscle spasms - I have baclofen and bupivacaine in mine.

Straydog is spot on about the intrathecal dose being typically a lot lower than the oral dose - the main reason I ended up getting a pump was because I was maxing out on oral baclofen, I'd had botox, serial casting, almost every type of physiotherapy you can imagine, and I was getting crippling dystonia and spasms in my legs and feet. 60mg of oral baclofen did nothing at all; I'm now on 1.6mg intrathecal.

Pumps require a trial period too, where epidural injections of the particular drug are given. Like with the SCS trials, this is important in helping to determine whether the pump will be effective for that person, what the likely starting dose will be - but it can include placebo injections too.

Stray - that's really exciting about the different type of pump! I've had mine just over 3 years but mine works at a fairly high rate so I'm guessing I won't have much more than the expected lifespan out of mine. I'm not looking forward to the day mine needs replacing :(
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 6/3/2011 7:13 AM (GMT -6)   
Hi Kat, you spoke about a pain pump, I have one and can answer some of your questions, No, the patient does not have any control over the unit, Just the drs office because it is operated by a computer there in his office. The units do have to be replaced after a certain period of time because the batteries wear out and runs down. Codman makes a pump that does not have a battery, it runs off of a gas inside the unit and those do not have to be replaced unless the unit fails for some reason. My next pump will be a Codman unless Medtronics gets it in gear and comes out with a unit like the Codman. Thats the skinny right now that Medtronics is working on a unit like the Codman.

Currently, Medtronics has a piece of equipment called a PTM that can be used with some of their pumps. What this device does is allow the patient to give themself a bolus throughout the day. The pump can be programmed to give one a day or more. The bolus is very similar to getting a shot of pain medication, only the bolus is a very small amount, not much to it. This again has to be programmed at the drs office. Not all drs will allow a patient to have a PTM either, some drs do not believe the patients need this its just another way to get money out of a person. Many of these units can be programmed to give a bolus throughout the day without needing the PTM. Thats another argument the drs use. Recently, I was having a lot of problems and my dr ok'd me having a bolus, so the nurse programmed it to start releasing the medication after I got home. The bolus are so small you really cannot tell you are getting anything extra as far as feeling high or loopy, nothing like that at all.

Because the medications used in the pumps is in concentrated form we end up on less medication than what we took orally. My dr also gives oral meds for BT pain because even with a pump you are still in pain. Once a person truely has CP, they will never be pain free again, those days are gone and over. The pumps are used for those that have run out of options for pain control with orals meds dealing with CP. Medtronics requires patients to undergo a psych evaluation prior to any pump being implanted too. Life with a pump comes with its own set of problems, it is not worry or problem free way of life.

I am glad to hear that your SCS is working for you and hope it continues. If you have any more questions about a pump ask a way, if I can answer the question I don't mind a bit. Take care.
Moderator Chronic Pain Forum

kat1611
Regular Member


Date Joined May 2011
Total Posts : 104
   Posted 6/4/2011 11:58 AM (GMT -6)   
Hi everybody, after such having wonderful time at the beach Monday, I thought I was invincible, like that will happen, so Tuesday I did a load of laundry and brought it up to hang it out. I have a bi-level house so that means I had to walk up two levels with a full basket of wet laundry. We have one of those pulley systems that you can hang up laundry from the deck so I didn't have to carry the basket down to the yard but I did have to twist to the side to reach each one, we have two. So I don't have to tell you the rest do I? I have been sore and in pain since then. When will I ever learn, or will I? I go to my surgeon Monday, yea. I was happy but now it feels like I'm going to the principal's office! My daughter(17) said "oooh your gonna get in trouble!" And somehow it felt like it even before she said it.
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