Story of Pain pump at L5 Retrgrade to S1/S2 update 6 MAY 16

[river133]

So very good to know all of this . My pre trial will be in mid May. The nurses told me not to sugar coat when they are inserting the drugs. Tell them when you feel no pain. Is this the way yours went Lotta nerve and blightcp?

[quilter]

Thank you for creating this new thread. Sounds like you had a very positive trial and have a great pain doctor. Wish you continued success and I look forward to following your progress.

1) Has Dr. Ross said if there's ultimately a tolerance and maximum dosage with the local anesthetic, like there is with opiods? It seems so smart to deliver a numbing agent to the area rather than narcotics.
2) Will you still have to limit sitting and activities that put pressure on the PN to avoid further irritation/damage, even though you'll be in less pain and functioining better?

Don't mean to put a damper on your great results, just trying to think of all the possible pros and cons, and learn what you've been told about long-term prognosis. At this point I'm more interested in your procedure to treat the sacral/rectal pain caused by the neurostimulator. The PN is still much improved since re-do PN surgery 15 months ago.

[blightcp]

Arrrg... Dr. Ross's office called and the insurance has not approved the surgery yet... I called the insurance and they said that it is still pending and that they needed 10 business days to get approval and it had only been 5. I pray, this all gets straightened out. It is so frustrating being so close and having it possibly taken away.

Quilter,

There is no tolerance to anesthetic as long as the spinal fluid is moving and exchanging out the fluid basically as long as everything is metabolizing as normal it should work for a long time.
They can increase the dosage and add other drugs into the pump like prialt, but the results with the trial were so good that he is starting with just local anesthetic.

Right now I have zero sitting tolerance and I am in bed 20 hours a day. So any sitting tolerance would be great. During the trial I tried sitting, normally I would feel instant pain in my testicles that would quickly radiate into the rest of my groin.

During the second day of the trial I tried sitting on a recliner and after about 90 seconds I felt the fist hint of pain that grew I was able to sit for about 3 min before I had to stop. The other thing was that the pain quickly subsided where any other time I would be in agony for hours.

I don't want to discourage anyone, I had two severe entrapments, one that had scarred onto the ligament and had to be cut out from the ligament. I was one of the more complicated PN cases for Dr. Conway. He has decaled my nerve damage permanent after 2 years with no improvement.

My goals are:

1. free from opiates and pills every 4 hours
2. Have the ability to quickly squash down a pain flare-up with the control unit.
3. Only need a "fill up" every 3 months instead of monthly visits to the pain clinic.
4. Be able to drive without pain, driving was the only thing I can do sitting, but it still hurts.

Everything after that is a MAJOR bonus. I hope by the end of the year to have both the private disability, and social security disability complete. My wife and I can then look at how to restructure our lives to a sustainable environment.

I really liked my job and had been there 14 years, I had a really good career starting, I am 37 and was just starting to move into principal engineering responsibilities with a major US company. They made lots of accomidations and let me work from home for almost 2.5 years. In a way, I can't blame them for HR letting me go, but I wish I could still work. But I can't, I cant even get small things done around the house.

The cost of living is too high here, and if I did not have mortgage insurance we could not afford it to live here, we have another year of our mortgage paid by the insurance, so we are going to have to sell sometime. But we are hoping we can find a nice place in Maine closer to my parents and brother, so that we can restart our lives.

[LottaNerve]

River, I can tell you about my trial. (This is my memory of it, as accurately as possible!) Dr. Prager administered my trial himself. After inserting the catheter into my spine under CT-guidance (I was on my tummy on a scanner while he watched in the monitor) I was moved to a hospital bed and closely monitored while he numbed my lower body as a test. I soon confirmed that I could not feel or move my legs (a very strange feeling, but heavenly as I felt no pain - nothing!!!) I told him I didn't care if it stayed that way and I had to be in a wheelchair, because it felt so good not to hurt. He laughed and said that wasn't necessary. So then we waited for the medication to get out of my system and the feeling to come back to my legs. At that point he started the drip of the trial medications, which were a combination of morphine, bupivacaine, and clonidine. I was helped out of bed and timidly began to walk, gaining confidence as I realized I felt no pain!!! I remember holding on to the pole (for the drip) and walking around the hallway and passing the nurses station and smiling at the nurses. I remember my sister next to me as I began sitting on different chairs in the waiting area and in a conference room. It was unbelieveable!! I was soooooooo happy!!!
A couple of weeks later I had the implantation surgery. It wasn't immediate relief like the trial, because they couldn't start the medication at the same level it was during the trial. They started it at a low dose and it was increased slowly over time until I reached the optimal therapeutic dosage. At the same time I was titrating off my other pain medications. But that's another story.... For more, I have a blog at www.icandpne.com.

[LottaNerve]

Hi Quilter, as far as your questions....
I don't believe you develop a tolerance like you do with oral narcotics. I do know that the amount of medication needed when delivered directly to the spinal fluid is 1/300 of what would be needed if taken orally. That greatly reduces the effect of the drugs on other organs which was one of the concerns I had when I was taking Norco, especially because of the Tylenol in it, which can damage the liver.
As far as dosage, there is a maximum dosage limit because of the risk of developing granulomas at the tip of the catheter. For example, I am getting the maximum allowed dosage of bupivacaine per day, which is 20 mg. Because bupivacaine is an anesthetic that "numbs" the pain, it is my favorite! The other two drugs are morphine (at 5 mg) and clonidine (at 150 mcg) and all three work in combination to reduce pain. Also, while I did wean off my previous pain medication (such as Fentanyl patches and hydrocodone), Dr. Prager has me taking levorphanol (an NMDA antagonist) which is effective for neuropathic pain, and I have also begun taking Lyrica, which has been very effective. I am also continuing a low dose (20 mg) of Prozac which I was on for depression caused by longstanding pain, which depletes your seratonin. (Low dosages of antidepressants such as amitriptyline, Cymbalta, Wellbutrin etc, are effective for nerve pain and Dr. Prager will try different ones based on a patient's symptoms. There was one medication I didn't take for very long because it made me too sleepy, called Seroquel, an "atypical antipsychotic." I asked Dr. Prager why I had been prescribed this medication, and he said, "because it tells your brain you're not suffering." Wow. Nerve pain is so complex and insidious -- it's like we have to outsmart it by treating the brain as much as the original source of the pain.

[blightcp]

I am sorry for not posting, I finally got a disability hearing date for SSD and a IME for my private disability insurance claim. I have been on with my legal team for most of the week.

My wife also had a minor surgery, everything went fine, but my wife has major congenital heart defects, so nothing is trivial for her.

The pump is going great, I have been able to get off of between 30 - 40% of my pain short acting meds and that is in less than a month. I go back Wednesday to have them increase the dose again and see what happens with that. I tried 50% but that was too much.

The adjusting of the pump can take months in order to not shock or damage the nerves, so every few weeks I have to go in and they modify the dose, I was able to get them to turn on the "button" that helps a lot, getting the meds to kick in within 30 seconds is a godsend.

I still have some left leg numbness when I wake up, it goes away within an hour. It does not affect my ability to walk, so it is a happy tradeoff for pain.

I had a friend come over and help clean the basement to get ready to get wood pellets in for next winter. I could not do anything as I am on a 5lb restriction from the surgery. Just helping and "supervising" made me flare up for two days. In a way that was good two days before the IME, I can bump up the numbers on the forms.

The IME has all of the records, so hopefully this will go well. It would be nice to get this disability battle behind me.

[blightcp]

Oh, and the insurance for the surgery got approved!!!

The ONLY good thing so far from ObamaCare is that the insurance can not refuse a procedure based on cost.

Still getting the bills but I could by a Mercedes with this much money, so glad I hit my out of pocket deductible

[river133]

Tomorrow I am to arrive at the surgical center in Edina Mn.at 7.am for my pretrial intrethical pump. Back again on Fri.the 29th to have it removed. I am really nervous , apprehensive . Dare I hope ? It is the last chance. I will try to post tomorrow eve.

[stephanies]

River,

I am sending positive thought your way. You have certainly been through a lot and I hope that your relief comes from this procedure.

Stephanies

[quilter]

Dear River,

Wishing you a wonderful result and will be living vicariously through your experience! Can't wait to see what meds work for you.

I'm holding off on a pump trial. The sacral neurostim failed me by causing new chronic pain,so not anxious to try another implanted device until I'm more desperate. Take good care! quilter