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Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/6/2008 2:31 PM (GMT -7)   
Hi everybody - I feel like I've been through a nightmare and back.  It's been about a month since I posted that I was going in for my pump trial.  I DID have it for three days and will post about that experience in a little bit (the actual trial was mostly positive)...

BUT, I went home with a raging headache...that turned into a stiff neck in the middle of the night - and I ended up in the hospital with meningitis for two weeks.  Second time in my life with meningitis; I guess with the pump trial, it "leaked" and turned into chemical (viral) meningitis.
 
So, I don't even know where that leaves me... Anyway, I will post more details about the trial and stuff, for others that are thinking about it; but, needless to say, I'm in a really depressed place :( 
 
--Tina

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/6/2008 3:03 PM (GMT -7)   
OMG, Tina!
I've heard that the trial is wonderful. You can take a long walk in the park or
go out to lunch comfortably. It sounds good.Heavenly.
I've been putting off getting the pump though my doctor REALLY wants me to
have it. He wants EVERYONE to have it. With him, I think it's a money thing.
Doctors make a lot of money on pumps.
Invasion of our bodies with surgery seems to cause a lot of trouble.
I hope you're getting better. Maybe you will feel better each day. I've been
wondering about you.
Pamela Neckpain sends Be Well wishes. :-)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/6/2008 3:39 PM (GMT -7)   

Re: pump trial - I'm so tired right now but I will post about it later tonight or tomorrow.  But, for me, trial was NOT what I expected or had read about from others.  I say that not to disappoint but to just "disclose".  Yes, I did get relief as they increased the dose.  But there was pain involved from the actual insertion of the cathetar and from going down on my oral meds to the pump.  SOOO... it was interesting but not what I expected.  BUT, maybe I'm the odd ball?  I don't know.  But I will post in detail because I found it really hard to find people's experience with the trial.  I've read maybe three or four people's descriptions and that was about it....(but I really appreciated the ones I read!)...

I'm rambling :) because I'm so tired...I'll post later. --Tina

 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/6/2008 4:32 PM (GMT -7)   
Ok Tina,
I'll be looking forward to your latest information. I haven't found much on the
Pain Pump experience. It's one of those secret medical things perhaps?
I have been realllly concerenced about taking less Methadone to get the pump thing
going. My doctor says, "No pain.... No Pain." Ha! I don't think so!
A new doctor in a new town took me off Oxycontin too fast a couple of years ago.
I suffered. I do not EVER want to go through that experience again.
Pamela Neckpain, California

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/7/2008 12:44 PM (GMT -7)   
I am so sorry you had such a terrible experience!  It just goes to show us that no medical procedure should be jumped into.  There are always risks.  I am just sorry you had to be the one who had such an ordeal.

150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/7/2008 7:06 PM (GMT -7)   
This is really not off the subject ~ My husband just had a routine one-day surgery
and as a result of that surgery, infection set in and he almost <gulp> died.
He was in the hospital for four days and as a result of that surgery, he will suffer
through his entire life.
I went to the same doctor with a urological problem. He said he didn't see any
problem. I didn't argue the point because I don't want surgery, but still he should
have seen the problem!
Are doctors thinking about their jobs? Are they careful? Is the operating room clean?

Well, I say this and at the same time the doctor is prescribing the medicine that
keeps me alive. I could not manage with this pain and no Opiod. Hmmm....

Tina, I'm looking forward to hearing from you but I understand you're probably
not up to posting what happpened when you had the trial. I hope you're feeling
better every day.

Pamela :-)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/9/2008 3:13 AM (GMT -7)   
Pamela and others - thanks for the thoughts and everything.  I'm soooo sorry for your husband's experience.  YES; definitely some interesting food for thought.  You are so right - surgical stuff is very invasive to our bodies and can make things worse.  I know, for some, it's been a good thing - no doubt.  But you really have to weigh the risks vs. the procedure.  I'm stuck here now wondering where to go from here.  Is it oral meds, maybe for life is this doesn't get better - and I'm in my mid-30's?  Risking the pump insertion and what I just went through or worse? 
 
My brain is just on overload.  I'm sorry I haven't posted the whole experience. It's coming soon.  But, like I said, I want to give a detailed description so it's archived here for others to search for that are looking for pump information.  The rate I'm going, though, I may have to do it in installments, though :) 
 
Maybe I'll feel better tomorrow....  Same hopes for all of you.  --Tina

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/9/2008 4:03 PM (GMT -7)   
Take your time, Tina. We candidates for pumps will be here. You've been through
a lot. Installments from you would work.
I like to look here for information because I really know the source. Medtronic isn't
a good source, my doctor isn't a good source, a holistic doctor isn't a good source,
my mother isn't a good source ... Who is a good source? TINA (When she recovers
from the pain pump experience)
Pamela

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/12/2008 9:39 PM (GMT -7)   
I have secondary progressive MS. The drs will not/cannot help once you reach this stage so when increasing spasticity caused painful spasms in leg & hip I did not how to continue. The pain was beyond 10/10 & I was unable to lie, sit, stand or walk & also skin pain where the touch of anything (even air or water) was excruciating. I am in Australia so MS soc referred me to hospital Pain clinic. They suggested pump with lisoreal (baclofen). Had a 2 day stay in hosp for trial (no catheter just injection into spine - no side effects) & then 1 month later a pump implant with a week in hosp. Had no side effects from surgery tho drug makes me a bit rocky, like I am permanently at sea. But heck some people pay for this pleasure & I get it for free!

But best of all NO MORE PAIN pain. I can lie down, I can sit, go to restaurant, visit friends, I can go for a drive, do the shopping, the list is never ending!!!! Spasticity which made the left leg, back stiff as a plank, and made the legs clamp together also is much, much improved. Truly for me it was positively miraculous. I wish that everyone with chronic pain could get the same relief. I am able to exercise on my Wii fit & find that the balance games seem to be helping the rocking which I reckon is a form of muscle weakness.

The one thing that I have heard is that it is good for lower back & leg relief not neck because of where they put the pump ie mine is on left side in line with belly button. If you do not trust your dr get another opinion perhaps that will clarify situation. Wish you all everything of the best!

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/13/2008 12:28 AM (GMT -7)   
popsie,
My pain is in my neck & shoulders.
I think it's interesting that you say the pump
works best in the lower back and leg.
Tonight I can see that my pain could get so
bad that I'd try almost anything
I don't know what has happened to make it
so much worse. I'm taking some medicine
that makes me sleepy all the time and kind of
loopy.
Oh, I wish I had my life back. I had a good life but
I sure didn't know it at the time.
I'm glad things worked out for you. I'm waiting to hear
from Tina. I don't think thing went so well for her.
Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome,.Prolapsed Bowel and Bladder, Attention Deficity Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety,


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/14/2008 2:05 AM (GMT -7)   
I just wanted to say that you can get a lot of info about pumps from the people at pumpsters@yahoogroups.com and probably you might find someone with a similar problem. They all have pumps or are considering getting one and asking for advice. I am sure they will have advice or suggestions about whether the pump will work for neck pain. Only thing is you have to join and sort of be passed by the moderator so it is not as quick and easy as this forum though they are all very helpful. Wishing you all the best & cessation of the pain.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/14/2008 12:31 PM (GMT -7)   
Popsie:
What does the moderator look for? Spelling? Punctuation?
It seems like a discussion of pain shouldn't have to be "passed."
I wonder if they think you're going to sell medicines or lotions or
gypsy potions.
I wonder if they think you're going to swear or tear your hair.
or if you'll be mean or rarely seen.
Sounds hard to get there but I'll try.
Pamela

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/15/2008 9:06 PM (GMT -7)   
Pamela,
Sorry, I really did not mean that they were as bad as that , just careful,I suppose. I would give them a go because you want to try everyone and everything to find the answer to get rid of your awful pain. Hope you are successful.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/15/2008 9:38 PM (GMT -7)   
popsie ...
I was kinda kidding.
pn blush

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/17/2008 2:04 AM (GMT -7)   
Pamela,
No offence taken. I agree with you it seems to be crazy to be "passed" but if you get some answers thats all that matters.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/17/2008 2:10 AM (GMT -7)   
I don't wannna step into the ring and blow it .... Give me some hints?

eyes Please. smilewinkgrin

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/17/2008 2:51 PM (GMT -7)   
Hi Pamela,
Don't worry just jump thru the usual hoops giving your password etc. I think you might say here you are looking for help to help you decide if pump can help your pain and you have heard that they are a great resource (stroking is really good). I cannot really remember what they ask but you can say that I (TrishAUS) recommended the site to you. Then you submit and have to wait some time before you are joined. I have heard that there is another site (who claim they are the best!). I have not looked but try Pumpsters (with capital P). Happy hunting! Liked your smiley icon I am trying one too.

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 10/18/2008 1:30 AM (GMT -7)   

The person that runs the pumpsters site is Harry and he is great.  Just explain your situation and I doubt that you will have any problems being accepted.  It is a wonderful resource for those seriously considering pumps and those with pumps. They just do not want a bunch of voyeurs that have nothing to add or are not seriously considering pumps or researching options. 

I have had a pump for years and have never heard that they are only affective from your waist down.  Stimulator implants are traditionally only affective from your waist down due to how they insert the leads.  Pumps have a catheter that goes directly into your spinal column.  This allows the medication to go directly to your brain, avoiding the problems of crossing the blood brain barrier.  There is no medical reason why an intrathecal pump would be area specific.  The reason people get pumps is that they need a tiny fraction the dose of their oral medicals, because of the blood brain barrier issues.  I need only 1/100th of my oral meds.  This eliminates many side effect issues related to high oral dosing.  My pump does a fantastic job controlling muscle spasms in my upper back and shoulder area – as well as whole body pain. Good luck.

 

 


Stella Marie,.

Post Edited (Stella Marie) : 10/18/2008 2:33:38 AM (GMT-6)


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/18/2008 2:12 AM (GMT -7)   
Stella ...
Thanks. I gotta do something.
Pamela :-)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/18/2008 4:08 PM (GMT -7)   

Hi - I can't find the yahoo group re: pain pumps...  If anyone knows the exact group name, I'd appreciate it.  I tried searching everything I could possibly think of but to no avail.

Thanks in advance -Tina


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 10/18/2008 4:35 PM (GMT -7)   
Here is the address for Pumpsters:
 
 
 

Stella Marie,.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/18/2008 7:21 PM (GMT -7)   
Tina,
I post to pumpsters@yahoogroups.com. Stella is right Harry is fantastically knowledgeable and helpful. Its definitely worth talking to them as they have had every sort of experience with the pumps. All the best. Popsie

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 10/18/2008 9:07 PM (GMT -7)   
Thank you :)  This is exactly what I needed! --Tina

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 10/19/2008 2:00 AM (GMT -7)   
Tina ~

How ARE you? I will probably see you at Pumpsters but how will I know who you are?
will you keep the same name?

How do I pick my name? Suggestions please. I've had trouble and confusion with that
before.

I always have a hard time registering for groups. I REALLY need to go there.
I will do my best but I have such a short time that I can be on line.

Ok Stella, Posie, TrishAus, All ...

I'll be having a go at it tomorrow if my back allows.

CU! Looking forward to meeting Harry.

Pamela Neckpain idea idea idea

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 10/19/2008 3:41 PM (GMT -7)   
Hi Pamela,
I know what you mean I also get frustrated by the log in process cos some are so complicated. But just hang in and it will happen. If you keep the same log in name I will find you and welcome you. They do ask you to put your state (abbreviated) after your log in name to give a bit of connection which I think is nice & thats is why I am Trish/AUS. Most seem to post from US & a few from Canada. You can get all the posts sent to you everyday (which seems to run between 10-20) or a daily digest which contains all the posts in it. I started with the first option but after a bit found I was getting swamped by all these emails. So now I get one email of the daily digest and I can scroll thru all the posts see what interests me and what I want to reply to. I will be looking out for you. All the best.
smilewinkgrin
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