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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/11/2009 1:44 PM (GMT -7)   
Hi Pamela:
 
I just noticed on an old post that you asked me a question about having an epidural procedure after having a pain pump done, and I just wanted to let you know that either I mispoke or you misunderstood what I was saying. 
 
I got a spinal headache as a result of the pain pump trial.  The procedure of putting the cathetar in your spine for the pump trial is similar to putting the needle in for an epidural procedure and both procedures gave me spinal headaches that lasted for a couple of weeks.  All of my epidural procedures were done before the pain pump trial, I was just saying that the procedure for both was similar.
 
I'm sorry I didn't see your question sooner, I hope I didn't cause you undue worry.
 
Lorie
 
 

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/11/2009 9:07 PM (GMT -7)   
Lorie ...

Oh oh, I'm confused. Did you get the pump? I think not.

If you didn't get it, why didn't you get it?

I think it's because the trial gave you spinal headaches, but I'm nor quite
sure.

I'll catch on sooner or later Lorie. Thank you.

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/13/2009 6:28 PM (GMT -7)   
Hi Pamela:

Yes, I have had a pain pump for several years, and I also have a Spinal Cord Stimulator. If I can ever answer any questions about either, please feel free to ask.

Lorie

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 4/13/2009 6:37 PM (GMT -7)   
 
BlueJet,
My Dr. mentioned the stimulator to me today... He just switched me from taking 120 mg. Methadone a day to 60 mg. MS Contin 2X day... I've been taking Methadone for many years and I guess it just stopped working for me.  So, he said if this new medicine didn't work well he doesn't want me to worry...He won't give up on me, he will find a combo that will work..If not, we can always try the Stimulator... That kinda freaked me out!! I thought he'd say a "Pain Pump" not a stimulator...
 
How do you like yours? Does it work pretty well? You do still take pain meds don't you? Sorry about all of the ???, but I know that knowing about it is better than "NOT" knowing about it.
 
Me.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
Post Lamenectomy Syndrome
Hemi Lamenectomy/Spinal Fusion(Lumbar)
120 mg. Methadone daily /15 mg. Oxycodone as needed
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2Diabetes: (March 16, 2009)
Metformin 850 mg. twice daily (so far)
ME. (Rhonda)                                                                    

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/13/2009 6:44 PM (GMT -7)   
Me: You and I have become groupies of blue jet & straydog. They both know
a lot about the pumps.

I panicked when I heard that the trial could give you a headache that lasted 3
weeks. about seven years ago, I had headaches about twice a month. They
knocked me out. Really. I didn't go to the doctor.

After I took Adderal for ADD, they went away totally. It was amazing.

Anyway, I have pain now and to think of having a headache could just tip my
balance. I'd go out into #11 pain. (As if it were a choice)

I canceled my pain pump trial.

It is so good to hear from you.

NOW LET'S LISTEN TO BLUEJET 2 and see if we can figure out the rest of our
lives.

Pamela

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 4/13/2009 7:12 PM (GMT -7)   
 
 
PAMELA,
Check your email girl, and get back to me..
 
Please cry
 
Me.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
Post Lamenectomy Syndrome
Hemi Lamenectomy/Spinal Fusion(Lumbar)
120 mg. Methadone daily /15 mg. Oxycodone as needed
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2Diabetes: (March 16, 2009)
Metformin 850 mg. twice daily (so far)
ME. (Rhonda)                                                                    

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/13/2009 7:16 PM (GMT -7)   
Me,

For Heaven's sake, my e-mail won't work.

Arghhhh!

Pamela

I'll check back in about an hour.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/13/2009 7:22 PM (GMT -7)   
Me,

I got so panicked I lost my mail! It had slipped down to the bottom of the
screen and was covered up.

I AM SMILING.

Pamela turn turn turn

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 4/13/2009 7:53 PM (GMT -7)   
Me, I sure hope the switch in meds gives you some relief. Do you have nerve pain, unfortunately, I can't remember your medical situation.....Susie


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/15/2009 8:44 AM (GMT -7)   

Hi Pamela:

The spinal headache was bad, but for me, the pain pump was totally worth the temporary headache, plus not everyone gets one.  Whether or not you get a Spinal headache has something to do with the size of the needle they use to insert the catheter, and if you lay flat (no pillow) for several hours after the procedure, they say you decrease your chance of getting one tremendously.  I did not know ahead of time that the procedure could cause one, or I would have told my PM that I was prone to them, and we would have opted to place the catheter in the hospital with me lying down and I would have remained flat to decrease my risks, but because I didn't know, I had the procedure done in his office and then walked accross the street to the hospital to get admitted.  By the time I got through the admission process, I already had the headache.

Even with the experience of the spinal headache, if I had to do it over again, there is no question that I would.  If it were me, I would not give up on the probability of getting some decent pain relief from the pump on the chance that you may get a temporary headache. 

I do understand your reasoning that you are in so much pain now, that you are afraid that if you do get the headache, that it may put you over the edge, but what got me through it was knowing that it was temporary - I knew that it would go away, and I hung on to that.  It wasn't easy, I'm not going to lie or sugar coat it, but in the end, for me, it was worth it.

After some lengthy posts back and forth with Susie (Straydog), I believe that I my doctor is not using my pump to it's full advantage, and that I could and should be getting more relief from it than I am, and that is something I am going to have to research and discuss with him, or maybe find a new PM, but even with that in mind, without the relief I do get from the pump and the Spinal Cord Stimulator I do not see how I could have gone on in the state I was in previous to them being implanted.

Obviously, this is a decision only you can make, and I don't mean to push you one way or another, you have to do what is best for you.  I just wanted you to know what my experience has been, and I hope that it clarifies things for you rather than makes your decision more difficult.  If you have any more questions or concerns, feel free to ask, and please let me know what you decide.

Lorie

 

 

 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/15/2009 9:41 AM (GMT -7)   
Hi Uniquely me:
 
My experience with the Spinal Cord Stimulator has been a complex one, so I don't know if I am a good person to ask or not.  Let me start by saying that I am one of those people that if anything can go wrong, it will.  If it wasn't for bad luck, I would have no luck at all. 
 
I have had the SCS for about 9 years and I have had lead wires break & slip out of place, I have had a build up of scar tissue that caused me to loose the sensation of the stimulation because the leads were not making contact with my spinal cord, I have had infections that requires the doctor to make new pockets & move the device to several different locations in my back only to get an infection in the new pocket, and had to have the whole device taken out.  Then I had to be infection free for 6 months before they would put it back in.  And, because my pain level is consistenly very high, to get any relief, I have to have all of the settings on the SCS as high as they can go in order to feel the stimulation and thereby, get any relief, so I go through what is supposed to be a 5 year battery in as little as 2 months or a maximum of 1 year.   
 
Obviously, I am not a typical case, and the problems I have had, have not been because the SCS is poorly made, or because of a doctor's error, the lead problems were because of a bad fall, the infections were the result of MRSA (antibiotic resistant staph) that I probably picked up in the hospital, and the scar tissue and my pain level aren't the device's fault, but because of all of these issues, I have had round leads, flat leads, & surgical leads, and have tried both the rechargeable and non-rechargeable type units.
 
Many people have asked why I didn't just give up, but the truth is that if it weren't for the combination of the SCS, the intrathecal pump, and the oral meds for breakthrough pain, I don't know where I would be right now, if I would be here at all (I hope that doesn't offend you, I am just being honest).  Even with the devices and the meds, my pain level is a solid 8 - 9.  Occasionally, I am blessed with a "7", but I also have days where I hit a 10 and wind up admitted to the hospital for a few days until they can get the pain back under control. 
 
The 6 months I had to go without it because of the infections were very difficult, and I could not wait for them to put it back in. 
 
I hope I have answered your questions without scaring you half to death, obviously, I am not a typical case.  I have met people who have gotten tremendous relief from it, have been able to greatly reduce their oral meds, and been able to return to work, and I have met people who it did nothing for, but that is what the trial is for. 
 
If you have any other questions, & you don't mind a brutally honest answer shocked , feel free to ask.
 
Lorie

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/15/2009 12:52 PM (GMT -7)   
Bluejet,

Thank you for your response! You understand my fear! That's great. When you
finally feel understand it makes for a kind of happiness that has been missing.

I am in the process of house moving. I have an unknown stomach problem. I'm
unsure of my doctor. My daugher is going to have a baby very soon. I missed
the birth of her last daugher two years ago. I don't want to miss this one. I am
still kind of recovering for waiting FOUR hours in radiology to get my MRI and
then when I finaly got in the MRI, they couldn't get a shot. (I couldn't be still.
My movements were invountary.

So ... there are just too many things going on in my life to do it now. It's a thing for
later. I need to make a clearing in the forest of my life.

As I get older, I doubt that my cevical spine, tail bone, shoulders and spurs will
get better. I will be more ready. I'll beg for one.

You walked across the street! Oh, that's terrible. No wonder you got the headache.
but like you said, it's temporary. Our pain is permanent. I'll know what not to do.

Pamela

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 4/15/2009 11:39 PM (GMT -7)   

Hi Pamela:

Happy housewarming!  I wish you many happy years filled with wonderful memories!  A new grandbaby too?  How wonderful. 

I am sorry that you are having problems with your stomach.  I have a condition called gastroparesis which was a result of my narcotic pain meds.  Basically, my stomach would shut down and when I ate, the food would sit in my stomach for hours or even days and would rot and then I would start vommiting uncontrollably.  No amount of anti-nausea meds would do a thing, even the ones that they give chemo patients.

I was in the hospital more than I was home for 11 months and every time I did go home I had a different diagnosis.  I had my gallbladder moved and it turned out it was not the cause of my problem, I underwent every test anyone could think of, some of them I had done multiple times.  I saw many different doctors and each one had there own opinions, and none of them were right.  In the end, a friend recommended a new GI doctor who had just joined a practice in our town, so I called her and asked her to give me her opinion.  She was pretty sure after listening to my story that she knew what it was and ordered a simple test called a stomach emptying scan.  I had to eat a bowl of oatmeal that had a radioactive material in it, and they took x-rays of my stomach every 15 minutes for several hours, and as soon as it was done I had an answer.

There was only 2 medications used to help with this condition, and I was allergic to one of them and the other one didn't do much of anything for me, but this doctor did extensive research and found that the same company that made the Spinal Cord Stimulator (which I have), used the same device implanted in the stomach to stimulate the stomach to open and close and function.  I quickly found a doctor who dedicated his life to this disorder, and did this type of surgery, and even though he had never had a patient that had this condition because of narcotic medications (it is usually a disorder that affects diabetics), and his colleagues were against it, he agreed to do the surgery, and I got instant relief of 95% of my symptoms.

It has been 5 1/2 years since that surgery, and I am due to have the internal battery changed, but the doctor I had left the country to practice medicine in Africa where there is a great need that he wanted to fullfill. So I am presently looking for a new doctor that does this type of surgery and so far the nearest one I can find is 5 hours away one way.

I hope that eventually you will be able to do the pain pump trial, and that you will get tremendous relief from it.  If I can be of any further help, feel free to ask.

Lorie

 

 

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/16/2009 12:14 AM (GMT -7)   
Lorie,
Wow. What a remarkable story! At least you finally got some answers, and a creative "solution". The doctor you found, who has gone to Africa, sounds like one of those special ones - an unexpected diamond.

But now the thought of a 5 hour drive to maintain your treatment. I wish there was someone closer to you, but sometimes travel is the only way. I had to travel 3 hours for my fusion surgery, and it would have been well worth it had it been successful.

PaLady
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