Surgery and Pneumonia

[Marco]

I again had revision surgery on the spinal cord stimulator. Even after the second revision the pain coverage was less than 5%. During the trial my coverage was easily over 85%. The difference this time is they were putting in more robust leads, but also more difficult. My surgery ran long because they had to cut out excessive scar tissue.

Waking up I could feel the additional coverage, but I still won't get reprogrammed for optimization until next week.

The morning after the surgery things went somewhat south. I have never had an UTI before, but things were certainly different. We eventually determined that a foley catheter was the cause of problems.

By Thursday evening my breathing became labored and my exhales were audible. They thought I was having an allergic reaction to the anesthesia.

Friday morning the problems had increased and I went to the doctor. Xrays came back clean. The lab was unable to successfully draw blood. Our choices were ER on a Friday night or blood draw on Saturday.

After the Saturday blood draw my breathing had again gotten worse. The surgeon agreed we should go to the ER. Nearly a dozen hours later they found pneumonia on a CT scan with contrast not visible on Xrays. They gave me oral medications and we went home.

Monday things had only gotten worst and we went to a different ER. They confirmed the pneumonia via CT scan and put me on IV antibiotics. Later they added small dose steroids to combat lung inflammation.


They are expecting my lungs to be pneumonia free by Thursday. Having some more scans on Friday hoping to verify.

The stress caused the worst ms hugs that I ever experienced. It's not fun just being out of surgery with back incisions, ms hugs in the front and pneumonia rocking the lungs.

I'm just glad to be back on the mend and should be ready to push back against MS very soon.

[Kimba22]

The stress caused the worst ms hugs that I ever experienced. It's not fun just being out of surgery with back incisions, ms hugs in the front and pneumonia rocking the lungs.

Hi Marco,

How awful. So sorry to hear you went through this, and also that you came down with pneumonia after your surgery.

I hope you are soon on the mend from both the pneumonia and the surgery. Also that the revision surgery proves beneficial, and gives you substantial relief from your pain.

[pennstater]

Sounds horrific. Hope you are on the mend and feeing better

[REG53]

Oh Marco, I am so sorry. Hope you feel better soon.

Saying a prayer for you.

[rdmc]

Hi Marco,

Sorry to hear about the pneumonia.

I had a similar situation post surgery quite a few years ago. My issues also started with a catheter caused UTI, and things just seemed to go downhill from there. I was discharged but I kept going downhill, spiked a fever, and was readmitted to the hospital with pneumonia. I think I stayed about a week on IV antibiotics.

Here's what I wanted to say to you: Do not push yourself, as far as getting back to normal. I can remember having a nurse help me get ready as I was about to leave the hospital, and I remarked to her that I sure was "huffing and puffing" a lot for just getting dressed.
She replied that it was due to the pneumonia and I'd have to be patient with myself while I was recovering.

I will say that one thing that helped me recover was using the spirometer. If they didn't give you one, ask for it. I would practice multiple times a day, and I think it really help my lungs recover because my progress was quantifiable. I didn't have to "wonder" if I was getting better, I could see it by using the spirometer. Maybe it was the psychological boost it provided, but either way, I would highly recommend one if you're not using one already.

So be kind to yourself, and I hope you're back to your normal very soon.

P.S. I'm also hoping you get your spinal cord stimulator to a place where it's giving you optimal results.

No need to answer now, but at some point I'd be interested to know how the spinal cord stimulator and your pump interact (I may have asked you this before, but can't remember.) I used to think that another device would affect the pump (as at the PT they can't use TENS or anything that might interfere with the function of the pump.) I know Kimba has a pacemaker (I think) and the pump, so obviously those Medtronic devices coexist, but a spinal cord stimulator is in closer proximity to the pump.

[Marco]

Thanks everyone. My body is still recovering slowly, but progress is being made. This week I see an ENT for a follow up, the surgeon and have a repeat CT Scan to ensure all swelling and pneumonic remnants are clear.

The good news is I seem to already have more coverage with the spinal cord stimulator and getting better pain relief without it even being programmed specifically for me. The medtronic techs will come out and spend about an hour trying different settings to dial in my pain relief from the SCS. Then I will spend a few weeks determining what settings that I like the most and we'll fine tune the settings again. It takes a little while, but you can receive significant pain relief if your body responds to the SCS.

I initially did a SCS trial late last year and had stellar results. The problem is thick scar tissue developed and they never could get the flexible leads back in the correct position. The last surgery a neurosurgeon removed all the scar tissue and cut a direct path between signal generator and new paddle leads. The paddle leads have more functionality than the perc leads so that will hopefully lead to an even greater level of pain relief.


Recovery is slow, much slower than I want, but I know it's necessary. I have had more MS hugs in the past 10 days than in the past 20 years. So with 3 new incisions and pneumonia in the lungs things have not been fun. Things are settling down, but when I start to do too much I can feel the spasms starting and immediately stop what I was doing. I have a number of follow up appointments this week, but none should take over and hour total and that's it for the day.

I do have a spirometer from a previous hospitalization and they are helpful.



I believe the SCS can take my pain from a 4-9 range and move it into the 2-5 range. That in itself would be a miracle. I believe the numbers they suggest is that 80% of patients can get up to a 75% pain relief. SCS are not for people with minimal pain, but it gave me my only remaining option to stop nuking my body with narcotics. None of the pain medications actually helped, but if you get enough morphine on board you stop caring about the pain (and life in general).


The SCS and Baclofen pump don't even know each other exist. They will both need to be replaced on different schedules and maintained at different intervals, but they are both closed off systems from one another. They DO have different MRI requirements so it's important to consider them before getting an implant. The pump is rated up to 3T, but not tested with open MRI technology. You also need to verify that your specific pump is rated for MRI as not all of them are. The SCS is restricted to 1.5T closed only and components need to be MRI-compatible verified.


There are devices specifically prohibited when using a SCS or pump, but none of them are in my normal routine. Before any procedure I personally call and verify that my device remains compatible with the procedure.


Roughly 2 years ago I was willing to have my right leg amputated, but it would not have resolved my problems. The bad nerves reside in my back and not my leg. I now have 2 medical implants and starting to see the real benefits of exploring every option and never giving up on medical science. I hope by the end of the year to have manageable pain in my leg, MS spasticity down by 99% and a better quality of life than I had before.

I think I have had 7 back procedures, 2 medical implants and pneumonia since November 2014 all trying to slay this beast. While surgeries and recovery are never fun -- here's hoping that in 2017 they fall come together.


Blessings one and all

[Shoo]

Marco I'm so sorry to hear that I
hope you start feeling better soon

Shoo

[rdmc]

I believe the SCS can take my pain from a 4-9 range and move it into the 2-5 range. That in itself would be a miracle. I believe the numbers they suggest is that 80% of patients can get up to a 75% pain relief. SCS are not for people with minimal pain, but it gave me my only remaining option to stop nuking my body with narcotics. None of the pain medications actually helped, but if you get enough morphine on board you stop caring about the pain (and life in general).

Hi Marco, thanks for all the detail, very interesting.

Just wondering, did they ever suggest adding pain medication to your baclofen pump? I have read about this procedure on pain forums, but have never known an MS patient who used this option.

I think the "rub" comes from the problem presented by increasing the dose of baclofen. When you increase the baclofen, you're automatically increasing the dose of pain med.

The SCS seems to be the answer for your pain, I'm so glad it worked for you.

I'm dating myself, but with all these devices available to us, maybe we'll be able to change our names to Steve Austin or Jamie Sommers. For all you young folks, google Six Million Dollar Man or Bionic Woman.

One more question...you mentioned MRI and the devices, do you have to verify that the SCS is working after you have an MRI (like we do with the pump) and if so, does that involve two different doctor check ins, or does the same doctor handle the ITB pump and the SCS?

[Marco]

Howdy! I am still on the mend, but making small daily progress. I no longer wheeze on exhale, the surgical pain is better and things are improving. I will have the SCS reconfigured on Monday so that will be a hopeful day.



I have talked to both physicians, medtronic reps and patients that mix up to 4 drugs in their pumps. The first answer has always been avoid it if you can.

• You cannot control the medication doses independently. So if you have Drug A and Drug B in the pump and need to increase Drug B, Drug A will also be increased.
• A number of people also warned that some drugs don't play as nice in the same reservoir as others and mixing can become an issue.
• Another suggested the acidic nature of some drugs caused the internal pump parts to wear out sooner eventually leading to additional surgeries.
• I always try to maintain the KISS Principle to Project Management and problem solving.

I did suggest to Medtronic they create a two (2) two ML bladder system out of their 40 ml reservoir, but I'm not sure what happened (I should check patents).

The doctor can do a spinal tap test of whatever medication you are considering to determine the effectiveness. I have personally been on Lyrica to Morphine and every combination in between and never received enough pain relief. If the Morphine dose got high enough then I cared less that I was in pain, but also cared less about life.

It was the ineffectiveness of pain medications that led me to massage, acupuncture, heat/cold, rubs, considering amputation and eventually leading me to the SCS. The SCS paddles were realistically the last options that 3 doctors agreed that I had before being doped back up or in unabated pain.


I put the SCS in MRI mode during the procedure and afterwards just start it buzzing again via the handheld controller. The whole getup gets me terrorists looks and I'm not joking. Can you imagine a medium complected 40ish man, wearing an ice vest (looks like bomber jacket or flak vest), then starts pulling remote controls out placing them against his body and making clicking/beeping sounds? LOL. It was even worse during the SCS trial when the SCS machine is essentially duct taped to your back and these wires are always hanging out behind you.

Then for kicks you go to the bank and ask for a withdrawal and hand them your concealed carry license before asking to borrow a pen. Sometimes you must laugh or cry ... and I want to laugh!


Also, my medtronic reps are AWESOME. They meet me at the MRI place and can configure either device, as needed. They just check the pump to ensure it's working, but will definitely make SCS changes any time. My current Pain Management doctor can also handle both devices, but not all do this.


Heading to the DOCTOR'S ....... I hope everyone has a blessed day and weekend.

[hunterd]

YAY! Marco is on the mend