Pain pump problems
 

My pump was implanted 6/15. I was left horribly bruised and in tremendous pain. One visit to the ER and another visit to a hospital for a Blood Patch.
The first medication in the pump was morphine. The side effects were horrible. The second and current medication is dilaudid. After seven weeks adjustments, I'm ready to try something else. The side effects are worse then the back pain. Which I still have!
My question is..... What medication should I try now?
David/TX


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Update...
My pump was refilled and Bupivicaine was added.
I'm still miserable. Really, that's an understatement. I'd have to say the entire pump process has been worse than the back pain its self.
Question... Is it too soon to have the pump removed and go back to oral medications?
David


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Hi david,

Sorry, there seems to be a dearth of Pump users at this time.

What you have to ask yourself, and weigh up, is what relief you got from oral meds before your Pump, adding the extra pain from the op and the months of poor pain management.

Of course, you can take cocktails of meds orally, so you get greater benefit and you can - within reason - adjust times to suit good/bad days/hours. For my spine pain I take Tramadol and Arcoxia, for Neurological I take Ketamine and have Lidocaine Infusions, Topiramate side effects help some, too. All together they reduce the pain to a 4/5 at the start of the Infusion cycle. That means I can function, barely.

Even if I were suitable for an op (bad heart) I would stick to oral meds unless I was offered a guaranteed Wonderdrug to knock out the pain completely. I simply feel I am in control and change to another med, though physically difficult, is straightforward.

Sorry I can only offer my uneducated opinion. I hope it gets easier.

Dave.

David, I also have post laminectomy syndrome (failed back surgery. Dec 2nd will be 2 years since I had it. L-1 to L-5 fusion. My doctor had to reconstruct my lower spine due to the diagnosis.
I've been on pain meds, oxycodone, morphine & gabapentin oral since Before the surgery. About a year before. I think I'm over medicated.
Any way, a while back, I asked my PM doc about switching to a stimulator or pump. He suggested the stimulator. I had so many questions about, what if it didn't work? Can it be removed? What about the leads being removed, I heard that, that is difficult to do because tissue grows around them? He said yes, it can be removed because of the material they now use. I didn't go that route because you can Not have any MRI's due to the materials used.
I agree with English Dave pretty much because on oral meds I feel like I'm more in control.

As much as I want to get off these meds, they do Help. I've greatly reduced the gabapentin to half of what I was taking and when I see my doctor this Thursday, I am going to tell the doc to reduce the morphine so I can ween off it.

I don't see why you can't have the pump removed now if that's what you personally want to do. If your doctor says no and it's what your sure you want to do, then I'd find a new PM doctor.
That's why I asked my doc about removal of a stimulator.

I hope some how I was able to help.
God Bless you.

Dear friend
 

I am so so sorry to have read the outcome
A failed cervical 5/6-6/7 cadaver bone did not fuse
first time around

Second just a horrible botched job
done posterior
Developed a hematoma that needed to be seen throughout
the night as it needed to be drained MANY TIMES
it filled cups that we use when giving urine samples
AGAIN NOT THE TINY VILES
BUT CONTAINERS FILLED WITH SPINAL FLUIDS
the doctor just shut up
Did not have a word to say after my daughter gave him a
IMPRESSIVE LESSON
TOLD HIM
THIS IS THE ONLY PARENT I HAVE
ARE YOU TRYING TO KILL HER
she was with me the entire time
Never left my side
There is a picture posted somewhere on here
My first ACDF was March 10, 2010

To address your terrible outcome
gives me a confirmation on my decision
not to have a pain pump or a SCS coming here
doing my homework
Reading people's personal experience strength and hope
Rarely will I see a person on getting pain pumps
Most are SCS
I have multitudes of problems
First mechanical that is being handled by opioids
that was a long process trial and error
And then my neurological problems
Fibromyalgia, neuropathy and a slew of other problems
that are surfacing as time moves on
Point
I am super sensitive to all medicines
My story is different yet we share much

I PERSONALLY believe that you can have it removed
Remember IT IS YOUR BODY
it made no sense for me to have a pain pump
Would have gone through the same you are going through
And wish to have died at that point
I said to myself
If I was to get a pain pump
I would have less control
in the sense
It i external

I understand the trial of finding what might work
This is why Meds should be trialed on a external level
and when finding what works
Maybe and chances are still no as far as the pain pump
Meds that only masked our pains
And then the neurological Meds two that caused
SEVERE SIDE EFFECTS
LYRICA AND THE FENTYNAL (spelling) patch
DALAUDID BIG TIME CAUSED ATRIL FIBRILLATION
Found out after first ACDF
THAT A COMPLETE OTHER HORRIFIC EXPERIENCE

I tell you this
As it is my personal experience
And wanted to chime in on the pain pump

Why wouldn't you want to take your Meds by mouth
Your pump not only is a foreign object that does what it
is programmed to do
Oh heck no
"I" would get that sucker out ASAP
and administer Meds on my own
PLEASE NOTE
THIS IS MY PERSONAL EXPERIENCE

I PRAY YOU FIND YOUR WAY IN THIS DECISION MAKING
Is family involved as advocates manner
Where you can talk out the decision
This I hope you have in your life

I am so sorry to have heard this be your or anyone's
experience

Thank you for sharing
I pray you will find a way to eliminate
the pain

Someone who cares
Me

Quick update...
I still have the pump. I'm now 4 solid months with the new meds.
Since my last post I fired my pain management doctor in December. Best decision I've made in months. I gave him a full year to get me back on my feet.
My new PM doc is great so far. I'm still in pain. However I'm finally out of bed! In early January I had my second Blood Patch. He suspected I had another leak. I was skeptical but I went ahead with the procedure. My debilitating headaches and light sensitivity are gone.
Now we are working on increasing the dosage on the pump. This process was not fully explained before I signed up for this thing inside of me. What's very troubling is I still have a long way to go before we hit the sweet spot for pain relief.

More to come.....


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Making my morning
 

Dear Dave

Your update put a smile on this face
Soooo happy to hear you get some respite
as you go through your increase
As a opioid recipient who is now weaning off of Xanax
It is a difficult thing when one has so many allergies and side affects I am not surprised
Not am I surprised you were not told everything to expect
May I ask
While on the increase
Is there any meds by mouth you can take to ease into it

I just want to say
I wish that your relief comes soon
Praying all will work out in the end
Me

The doctor I fired required me be off all pain medication prior to getting the pump. He also didn't allow me to have any oral pain meds after it was in. His reasons were 1) the pain pump will not work. 2) he and his office staff said insurance will no pay for both medications. Reason number two was a flat out lie!
At my second appointment with my new pain management doctor he told me he suspected a spinal fluid leak. I requested oral pain medication for three days following the blood patch. For those that haven't had one, it's extremely painful! Even more so for me because I suffer from hyper sensitivity. Please PM me if you have this condition. To date I haven't found any information as to why I have this condition or what's causing it. Anyway... at my 10 day post op appointment I made a second request for oral pain medication. He is allowing me to take Norco 5/325 x 3 daily during the pump increase period. I'm at a really low dose still on the pump. It's going to take a few months of bi-weekly increases. According to the new doc, oral pain medication is ok to take when you have a pump. Also insurance is covering the cost.


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Now this sounds...
 

Sounds much more like it
Do you have a journal
Keeping a detailed personal experience
Is important to you
As time goes on you will understand more and more
Do you have an advocate that goes to the doctors with you
You may want to consider that

Your firing you doc
Awesome
My you find peace and relief
As pain is a entity of its own
Me

I kept a journal for a while but stopped. I just started wearing my Fitbit again. It's not 100% accurate but it does record good info.
My wife is my advocate. She takes me to every dr appointment as I'm physically unable to drive. I never imagined that would happen at the age of 44. I just started thinking about all the things I use to be able to do, so I'm logging off. It's just too dam upsetting to think about. I'll leave on this note. I was approved for SSDI this week. Wait that's depressing too. I'm out of here.....


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dear dave

i am happy you have not only an advocate
but she is your wife
i want to say
i so understand signing off

i was at a annual pap test
i too NEVER EVER FACTORED IN MY LIFE
"what if i get sick as we both are"

just not to long ago
april will be a year my termination of my municipal job

i am reduced to be in my bed most times to recoup
when getting a wind or burst of some energy

here goes

then i was asked
FOR THE VERY FIRST TIME HAS IT BEEN REFERRED TO
"so your retired"
i just burst into tears
i so get it
and i really sympathize with you
Dave
be careful
depression is cunning
be careful
and
try to get back to keeping a journal
you would be surprised to find some missing questions
be well
as well as you can be
i feel you loss
and we are still young
mine began feeling like i had a stiff neck
oh how that was not the case
take care
friend
me

Well... My headaches and light sensitivity have returned. I was scheduled to get my third blood patch Friday 4-1. Unfortunately my insurance company is playing games and won't approve it to be done at the same facility I had it done at in January. However they did approve it to be done at his office but not at the surgical center. I really don't want to be awake for it. At the same time I don't want to wait a week or two for them to find a place I can be put under.

If anyone reading this has had a blood patch while being awake, please reply or PM me.

If you have not, please don't reply! I want to keep this thread free of BS so anyone considering a pain pump can read what I've had to endure.
Thank you so much,
David


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David, I had my first blood patch done in hospital, the 2nd one a few years later at his practice. I had the choice of a local or local with twilight sedation, I chose twilight so don't really remember much of the experience other than the pinching when they injected the local. It went well, headaches dissipated. Sadly, they can return!

I opted for twilight because I have had a number of spinal injections and punctures done just under local, each time they hurt like hell and I vowed after the last I will never have anything done under a local again (not even the dentist). My GP explained my body is long used to a high level of pain relief to cover my pain, any extra pain, no matter how small can seem intolerable so a local anaesthetic often won't get the desired result.

Do ask your doctor if they offer sedation at his office, if not, lobby your insurance company or ask your doctor if he practices at another facility (they often do) and see if insurance will approve that one.

Update....
I had the blood patch done at his office #3. I couldn't wait any longer because the headaches and light sensitivity were so bad. I haven't been able to give an update because the patch didn't take. In fact I think it got worse. The light sensitivity is so bad I can't look at my computer screen or phone. My wife and I spent the last two weeks trying to get in to see a specialist.
My appointment was this past Friday. We thought I was going to have some kind of leak test / study done. Well, the only order the doctor had was for a blood patch #4. Several phone calls were made Friday morning to rectify this. Unfortunately the leak test wasn't going to happen. I was in so much pain, I wasn't about to leave without anything being done. So I went ahead with blood patch #4. If and or when this one fails we have a plan in place. The specialist was great. I believe I'm in good hands now.
I'm posting this now because when the light sensitivity comes back I won't be able too. I hate to say it, but I don't think this latest blood patch is working. I was feeling good yesterday but today some symptoms are returning. I'll know for sure if it worked or not by Tuesday. Fingers crossed!
David


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David, post the procedures have they got you lying completely flat for up to 4 hours or more? When coming home from the office are you sitting up in a car or lying flat?

Blood patches don't always take, quite often they need to find the exact point of leak but that can be extremely hard. My mum was in hospital for 4 months, had numerous blood patches, scans of all different sorts and they never found the exact spot. She even had tissue gauze stuffed up her nostrils for 24 hours, they were able to determine through testing the gauze there definitely was a leak but that was it, nothing more and the blood patches, unlike mine, never took. Post mums procedures they allowed her to get up and go to the toilet and move around in the bed, they were not strict with her at all. Post my procedures, each time, I was on strict lay flat for 4 hours, they even gave me a catheter for the first one so I would not need to get up.

There is hope however, 15 months on, she lives a good active life and her headaches and vertigo don't seem to bother her as much as they did, and has not needed to go to hospital again. Stay strong, I hope you can get some answers soon :hug:

I spent several hours lying flat at the hospital after the procedure. The car ride home I had to sit but reclined back. I've been in bed only getting up to eat or use the restroom. I haven't done anything to jeopardize the effectiveness of the procedure!



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It must be so frustrating and frightening for you both. I know with my mum she had so many X-rays and scans, including a nuclear scan and they still couldn't find the leak. I really hope Tuesday brings a positive result and your backup plan offers some solutions fast.

When we try the recommendations
 

I needed to start here I couldn't figure out what I was doing wrong
Not technologically with it
Me