Embracing life with chronic pain and illnesses.

Posts tagged ‘Neurology’

Blessings

I had the pleasure of having visitors yesterday.  Being primarily homebound, it truly brightens my day!  It provides contact when we are on the sidelines…it is a blessing to be taken out of the day-to-day normal.

During our conversation we talked about how school was going for our kids, they shared their struggles as families to adjust to the new schedules which now include sports activities, practice, homework.  Observing their dedication as wives and mothers, I was struck by a powerful thought…”Do they realize how blessed they are?”

I sat listening…mesmerized by thoughts of going to a HS Football game, driving kids to various activities, preparing family meals. It was like a movie playing out those words as images flew past…again the powerful thought…”Do they realize how blessed they are?”

My brain has been so very thick with brain fog or Fibro Fog that it is next to impossible to put words to my thoughts. It has been a huge challenge to speak…but I could not ignore the seed that had been planted.

I am compelled to share some of these blessings:

  • Having more than one child.  (Do not take this wrong…being a parent of an only child is a huge blessing also!)
  • Driving your children to activities. (It is truly amazing to be able to get into your car and go! No day before and day of resting and naps to have enough stamina…not to mention the required ability to focus.)
  • Preparing family meals. (This act takes SO much energy…only the simplest of meals is made in our household…and that is after hours of rest.)
  • Attending after school activities like a HS Football game. (This is a dream…to be able  to drive to the game…to walk to the bleachers…to sit and cheer.)

What can appear to us as routine, mundane or hectic is often a blessing in disguise. It can take losing one’s health to fully realize the every day blessings that surround us.

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The First Five Days –Pain Pump Surgery

The primary focus after the surgery to install the pain pump is to REST.  I cannot stress this enough! The discharge paper, the nurse, the doctor…all will emphasize the importance of rest. The first three days are important to form scar tissue that will help to further secure the catheter and the pain pump.

It does hurt…although it is different.  If you are like me, this will be the least invasive surgery you have had…no muscle or deep tissues involved. As my specialist described…he used a 2 1/2 inch incision in my abdomen to create a pocket under the skin for the pain pump…another 1 inch incision in the small of my back for the placement of the catheter. The catheter was inserted and fed along the intrathecal space along the spinal column to just above my shoulder blades…he wanted to maximize the delivery of the medication for my combination of pain. (On any given day could say 60 percent of pain is located above the waist and 40 percent below the waist….)

You are told to not twist, bend, lift over 3 pounds, put arms over head…these restrictions will be in place until I see doctor for the follow up (10 – 14 days after the surgery). Since my surgery was prior to Memorial Day Weekend, it will be Tuesday before that will get scheduled. I mention these restrictions now because the first three days I literally did nothing!

A dear friend had made arrangements for meals to be delivered to us from Thursday to Sunday…there were left overs for Wednesday. This was a HUGE blessing! If anyone volunteers to help…in any way…say YES! It helped me to completely relax…knowing that my husband and son would have good food in the house to eat.

My pain specialist had said that by Saturday (day four) that the abdominal pressure and the extreme tenderness of my back should be noticeably better. He was correct about that! My back is still sore but nearly as tender as it was. I also do not feel any pressure in my abdomen from the pump.

I have no idea how my new implant looks…wearing the binder and both incision areas are completely covered with dressings and tape.  The binding on the incisions themselves offering some additional support. Will review with doctor on Tuesday…still under the impression that all will remain as is until my first visit.

I did have an extreme headache…my specialist warned me about it…said it could last two to three days. The one good thing about the headache was it went away when I was lying down. That alone, kept me in bed with pillow under my legs for support! I drank as much water as I could to help flush my system….also was strongly encouraged to drink caffeinated drinks (which help with the headache).

Now on day five, the surgical pain has greatly improved. Getting up and down does still cause a slight grimace; however, it is much easier to shuffle to the bathroom and back to my chair….using my walker. NOTE: If you have the slightest need of walking support, make sure you have a walker available! I cannot stress enough how great of an aide this is! No worry of sudden movements…no fear of balance…just an awesome tool to navigate carefully around the house.

I am feeling very excited for this new journey! I will write more in regards to how my symptoms are impacted in the near future…right now, I am keeping my focus close at hand…

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Pain Pump Trial

After months of fighting my old insurance which ultimately would not approve a pain pump trial no matter what my pain specialist and I did, it took a change of insurance to open the door for the possibility.

I went through the psychologic assessment with a wonderful Clinical Psychologist. (An ordeal that I wrote about earlier.) I was anxious to see the finished report and, most of all, to find out if the trial had been approved.

At the end of last week, I received the phone call. I was approved for the pain pump trial!! I am SO excited! I will undergo the test at the end of next week. My pain specialist has determined that Prialt (ziconotide) will be the drug to be administered into the spinal column.

Per Aetna.com:

“Prialt (ziconotide intrathecal infusion) is a non‐opioid N‐type calcium channel blocker analgesic. It is a synthetic conopeptide derived from the venom of the piscivorous marine snail, Conus magus. Prialt (ziconotide intrathecal infusion) is a calcium channel blocker specific to the neuronal calcium channels that regulate synaptic transmission in nociceptive neurons.”

I was also given the good news that I will only have to remain for four hours of observation and follow up will be conducted via phone. My hubby and/or son will have to be with me for the next 24 hours. This in leu of an overnight stay at a hospital is so heartwarming! Will be nice to be home to compare how I can move about the house.

I am intrigued by this non-opioid option and anxious for the upcoming trial!

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