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

[blightcp]

I had the pump filled for the first time on Tuesday, I put a lidocaine patch over the pump at 5AM for a 9AM appointment. Did not feel a ting when they filled the pump. They filled the pump with the same 10mg per ml bupivacaine as before.

I explained to Doctor Ross that the leg numbness was better, but that I was having some sexual side effects, he agreed that we have hit the threshold for bupivacaine. We discussed that my sitting tolerance has not changed and he thinks that the bupivacaine needs an opiate to go with it in order to address the damage as well has the hypersensitivity.

He did not add clonidine, as it would make the numbing worse. You can read violet's post above, the link describes how clonidine works to block the receptors extending and amplifying the effect of the anesthetic.

Instead, Dr. Ross ordered Fentanyl to be added to the pump next in addition to the bupivacaine. He said it takes up to two weeks to get the meds in to change the medication for the pump as they have to be made to order to go into the pump. There has to be no preservatives or stabilizers in the drug that can hurt the spine.

I am still waiting on the call or the follow up appointments.

I am back at PT and that has helped a lot also in keeping the pelvic floor in balance, and I have usually an hour or two in the morning that I can function before the nerve puts me back in bed.

[river133]

Dale,your pump is not intratrhecal I see. Mine was put in on the 4th, I am not noticing a difference in pain at all. I have bupivicane ,fentinal and morphine. A very small amount of each,I will be going back in each week for added medication, until i receive the aquired pain releif. .My pump was placed at T9. Quite different from yours. . Once this all gets regulated I will be able to use the bolus. My goal is to get back to walking for an hour. It will take a lot to get to this point. One step at a time.

[blightcp]

My pump is intrathecal and is at S2. My sacral stimulator however is not on the spine, the stimulator is along the S2 nerve path.

I went in every 2 - 3 weeks to get the dosage adjusted from May to the first week in July going up 10 to 20% each time. When it got to within a month of the refill, they stopped adjusting the dosage so that they did not run the pump dry before they could get the next fill in.

It takes a while to get the dosage working, the trial was much stronger than the pump, I am just getting to the approximate place where I was with the trial.

River, you mentioned walking have you tried an elliptical? I find it is much easier on the PN, it removes the impact of walking or running. I ran a 9:30 mile today at PT on the elliptical, but I could never even walk it on pavement with the impact.

I also find that the elliptical does a great job with getting the muscles working before PT. I find it makes PT much more productive once the blood has been pumping in the pelvic floor.

[kathyd]

Hi BlightCP,
I just read your pain pump story, and am so very happy for you and your good results. I pray that all is still going well for you.
I understand what you have been through so well!
I have been a member of this group for years and these days I go online occasionally, ..but I'm amazed and sorry that I never saw your pump story before I had mine implanted in 2013. I have always suspected that both my trial and actual pump implant were not done in an optimal way.

Is it okay with you If I PM you soon (when I get all my pump data together) and tell you my pump story?
Its very late now and I'm off to bed in a minute.
.
I had an Intrathecal Pain pump installed ( in July of 2013) after hearing the good results of other group members.
I have not had the results I hoped for, tho I always knew the so called "pump trial" my pain doctor did was not comprehensive enough to prove a pump would help me with sitting.

I do remember that after my trial my doctor simply asked me to "sit" on the side of the bed for what seemed like a split second. I did so successfully and he basically said "great... you passed". Then he had me walk around the room as further proof, (but walking had not been a problem for me anyway! ) He then okayed the installation of an intrathecal pump .
I will tell you the rest of my story, but after reading yours ,and those of other online friends. I am further convinced that I used the wrong doctor and was given a very inadequate pump trial. (we picked this doctor as he was close to home, and I wanted to give hubby a break from all the driving he has done over my years of being unable to sit.)
BTW I now have a different pain doctor, but yours sounds much more experienced than my latest doctor, as well!

Will tell you more.
I will PM you, but not sure I am doing it correctly. I will hit "PM" while reading your most recent post, and type right below your text..
I sure hope you are doing well, and I would really appreciate talking to you more, as I knew there was something not right about my pump experience, based on what I've told you, what I've read in your post and others, and on all my prior research.
Thanks so much and will write to you soon.
Warm Regards,
Kathy

[blightcp]

Feel free to PM me, I am not as active as I used to be but I am still here, and I will get back to you.

If you hit the PM on this post you should be able to send me a PM.

[blightcp]

Update on 29MAR16:

Just a quick update on how things are going. The pump is working well and we are still continuing to adjust the dosage every 3 months. My overall PN condition has not changed, but the pump continues to get better.

As a result, I still can not sit, but with the severity of the damage to PN that was not expected to change.

Currently I am on:

(1)150mg a day of amitriptyline, I am allergic to gabapentin/Neurontin
(3) 30mg time release morphine sulphate

Pain pump has:
7mg/ml Bupivicane, a local anesthetic
20mcg/ml Fentanyl

I am still in PT once a week to keep the pelvic floor in check.

The pump is a HUGE help for three big reasons.

1. It stops the constant increases in opiate tolerance. In fact the old 15mg Oxycodone pills that I need now only once or twice a month are much more potent now than they used to be when I was using 6 a day for pain.

2. constant delivery, the pump send the medication automatically so that I dint have to think about it.

3. The ability to use the remote to call for an additional bolus every 4hours helps a lot with flare ups.

One of the members on the forum asked about the placement of my catheter in my spine, I asked Dr. Ross and he said that it was a retrograde insertion at L5. What this means is that the catheter is pointing down and not up so the drugs flow towards S1/S2.

As, always if I can be of help let me know, and feel free to PM me.

[stephanies]

Blight,

Do you find you are more functional and less restricted in your activities than prior to getting the pain pump? Can you be up and around more than before or are you similarly limited and in a similar amount of pain, but just taking less meds orally?

I am on my second time with PN and comparing this time to last time (prior to the near resolution of the pain), this time the pain has a very different (and more disruptive and disabling) quality than last time. I also did not have problems with sitting last time but find sitting to be extremely painful this time.

Many thanks,
Stephanies

[blightcp]

A big improvement with the pump is that the opiates are not in your blood stream. I have fentanyl in my pump and it does not affect me. But when I tried the fentanyl patch I could barely stay awake. I only take one pill every 8 hour compared to 3-4 before.

Right now I am much more alert than when I was on all of the opiates, but it is still no perfect.

Yes I am now able to move around the house much more and do some very light work around the house. Travel is still difficult and it gets really bad if I drive more than 4 hours.

When I travel to see my family in Maine, I have to plan for one out of very 3 day to be a "down" day, I take the day off and relax and try to recuperate. this is also the day that if I am in pain I would take a Percocet to get out of the pain cycle.

The pump has helped me get back some of my mobility, there are also a whole group of drugs that can only be given through the pump. If it look like your cs

MY second round with PN on the left was much worse too, that is when I had my second TG surgery on the left side.

I can do more but everything that would cause PN is on a timer. the only this I will totally avoid is a hard chair.

If I may ask how is the pain different this time?

[stephanies]

Thank you for the reply. If I remember correctly, your left PN had grown through or scarred onto one of the ligaments, is that correct? Did that happen after the first surgery or had it always been that way but it wasn't addressed the first time because you had the TIR? Did you have a period of pain relief after the first surgery? I am trying to reason if something similar could be causing my symptoms.

As far as my pain, last time I had bilateral burning pain only. I had burning at the perineum and back of the vulva and later some rectal burning. The pain was the same everyday, with occasional minor flares from too much time in the car, or something similar. I did not have difficulty with sitting. After 2 surgeries (Dr. Filler and Dr. Campbell at Hopkins) and PT, I had 5 years of virtually zero pain, then it came back. This time I only have left sided pain and I have a "spot" which my PT has said is at or near the entrance to Alcock's canal. This spot is very irritable. My left side feels swollen all the time. Sitting generates a lot of pain, especially in the car or on an airplane. When I sit (especially in the car), it feels like that spot gets very painful and I feel a pulling in my perineum and an increase in the other symptoms. This time I also get odd clitoral sensations at times, which I did not have before. I have no numbness (as far as I know) and no loss of bladder or bowel control, but I do have urinary frequency. The pain is much more variable this time and can be so high as to be distressing. I can occasionally have several days that things seem better and then I get hit with the worst days I have ever had with no changes in activity levels. Last time I could bend, rake leaves,do housework, etc. I always had a part-time job and was still somewhat active. This time I can do little without risking a pain increase. Walking on uneven surfaces sets off the most awful pain that can take months to settle down. I also get a pressure feeling sometimes in my pelvis that will only go away if I lie down. Who knows what would have happened if I had never had surgery. Maybe I would be better off now, although 5+ years of completely normal living and raising my child was a huge win. I have had no interventions (no nerve blocks, etc.) since the pain began again except PT and my therapist is quite knowledgeable, but she is not aggressive. I have seen Drs. Hibner, Conway, and Shobeiri over the last couple years and spent a week with Pelvic Pain Rehab of CA, mainly just to get exams and opinions. I found Dr. Conway the most interested in my case and he spent quite a bit of time with me. I could not have the EMG done as it was too painful and he said it might not be very accurate anyway since I had had the previous surgeries. He suggested PRF to be followed by the stimulator, or re-evaluation by him, but I am fearful of any intervention that could make things worse or bring on new symptoms. I take one 15 mg morphine sulfate extended release in the morning and one at night. I have been on this dose for years and I don't think it does anything for the pain, but the withdrawal process is very difficult and I am not up to it now. I have Percocet that I use every once in a while. My pain doctor is willing to prescribe other drugs as my pain is not well controlled, but I have been hesitant.

I hope I didn't go into too much detail for you.

Stephanies

[blightcp]

your symptoms are very familiar to me, you remembered correctly, my left PN had scarred onto one of the ligaments, entangled it'self in a vascular bundle, and had gotten compressed on by the falciform process.

All of this was natural growth or damage over time, nothing was a result of the first TIR, in fact Dr. Conway had a hard time freeing the nerve in the first TIR surgery and was not able to take the entire Left SS ligament out due to the adhesion. His decision to not force the SS out saved further damage to the PN in my opinion.

You are correct that those issues were not able to be seen or fixed using the TIR method.

Durring the second surgery (TG method) Dr. Conway was able to see all of the issues and correct them. After the surgery, only time and healing would tell us how much the nerve could recover from that much damage.

I had some relief in symptoms but, I could not take too much time off from work and went back at it with a recliner to sit in at work while using a laptop. But after 20-30 min at best the pain start and it tells you to sand up RIGHT NOW! There is no debating with this sensation, no level of adjustment will make this go away.

Uneven surfaces were hell before the pump, I also could not be near a washing machine on spin cycle. But with the pump vibration and uneven sufaces are better.

My PCP signed off on a handicap status due to the uneven surfaces and the new England Winter. Ice would instantly set me off for the day and I would have to lay down for the rest of the day. Uneven surfaces can be uncomfortable at times but with the pump things much better now except for ice.

Did you have a period of pain relief after the first surgery? I am trying to reason if something similar could be causing my symptoms.

As for medication I have found for me amitriptyline does a good job taking the edge off of pain. If I don't take it for a few days my pain goes way up. It is cheap too. I would talk to you r pain doc about adding a tryciclic antidepressant as the side effects are much lower than gabapentin for example. http://www.webmd.com/pain-management/tr ... ronic-pain

It may also be time to bump up the morphine sulfate ER I take a 30mg 3xday, if you have taken the same does for years your tolerance may be making the dose ineffective.

Given that your pain hot spot is way up in the canal, from my knowledge the only thing that is going to see that area is the TG surgery. Plus whoever does the surgery can document any issues found.

From my experience with getting disability, an actual surgical report with a finding of nerve damage is a major help when it comes to disability.

The one big peace of mind that I have is that the left PN nerve is fixed, the TG was able to fix it and there is nothing else looming in the dark to mess with the PN. That also made disability a much easier choice when there was nothing else to be done.

As for PRF on the PN it's a tricky thing to do and it only lasts 6 months to 2 years and has the chance of pissing the nerve off more or nerve damage. Damaging the nerve further was not a chance I was willing to take. If my right side flared up again, I would rather have another TG to fix any mechanical issues with the nerve.

I hope this answered you questions.

Carl