Life After a Jefferson Fracture: The taste of Pamidronate

Tuesday, October 2, 2007

The taste of Pamidronate

I had my infusion at the cancer center of pamidronate last Friday, four days ago. When I pushed back the recliner as I watched the clear drip, drip, drip that is supposed to help strengthen my bones in preparation for my future craniocervical fusion, the burning taste of the chemical leached into the back of my mouth and throat. I know the sensation well, as I've felt it several times when being infused with contrast for an MRI or CT scan.

Today, I still have this taste all the way down my esophagus. A sort of slightly-burning presence and a bitter flavor that is not sensed by the taste buds in my mouth, but absorbed into my brain through the esophagus. In other words, I can't taste the chemical on my tongue or inside my mouth, but it's a taste that is powerfully present nonetheless. It creates an ever-present nausea, as well.

I just called the nurse and asked her, and she is going to question the doctor and get back to me. I imagine it is normal, but always think it's good to make sure.

1 comment:

By His Grace said...: Hey Scott...no, pamidronate is different, it is the treatment for people with bone cancer (or maybe other cancers which go on to affect bones). I am not dx'd with cancer, only have "monoclonal gammopathy" which is a pre-condition to multiple myeloma, which we have to test for every six months.

The pamidronate is being given to me now because I have osteoporosis and my NY surgeon wants me to have every chance I can to have a successful fusion, so he ordered six months of this infusion.

Yeah, the stuff they give you for CTs also briefly makes you feel like you peed your pants, right? Yuck!

The nurse called back and said that is probably not pamidronate I'm tasting. She said the doctor said the med. can make my taste ultra sensitive, so I may be tasting other meds, like the Lidoderm patch. We are certainly affected by all of these things that are supposed to help us. Sometimes headin' back up into the mts. and not taking any meds and never seeing another doctor sounds mighty good!

thanks for reading and writing.
BHG; October 2, 2007 at 5:50 PM

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My Diagnoses

4 place Jefferson Fracture (C1) due to trauma in 2004
Atlanto occipital Dislocation (same trauma in 2004)
Tethered Spinal Cord (detethered in Nov. 2007)
Severe Functional Cranial Settling
Craniocervical Instability (CCI) due to first two in list
I have an acquired "Chiari" of 5.7 mm due to the previously Tethered Cord, but I do not have Arnold Chiari Malformation.
Arachnoiditis
Osteoporosis recently downgraded to Osteopenia
Mild Mitral Valve Prolapse and MV Stenosis
Monoclonal Gammopathy ( a precondition to multiple Myeloma, 25% of those with MG evolve into MM. I'm counting on being one of the 75%)

MY C1, 3 years post-injury

This shows my own C1. This is 3 years after my injury, imaging taken in Jan. 2007. The roundish element in upper center is a cross section of the odontoid, part of the C2. Running within the dark center shown here is the spinal cord. To the left of the odontoid, you can see a gap between the bone ends. This should be a completely connected piece of bone. To the right of the odontoid, you can see where that fracture was, and how it has somewhat fused and filled in with bone. The two fractures in the bottom part of the ring cannot be seen from this view. Also, this view is from the bottom, so the large gap/break in the C1 seen here is actually on the right posterior side of my spine. Also, keep in mind that this photo is not life-sized. Bringing this up to life-size will enlarge the gap between the bone ends. Something else to learn about this sort of injury is the job that our ligaments do. There are two kinds of Jefferson Fractures, stable and unstable. With a stable JF, the ligaments are not ruptured, and they quickly pull the bones right back into place, where they will heal on their own as long as the neck is stabilized. In an unstable JF, the ligaments are ruptured from being ripped apart, and do not have what it takes to pull the bones back together. Obviously, and according to my present neurosurgeon, my ligaments were "ripped, broken, ruptured." Of note, the important "Transverse Ligament" runs between that narrow area between the odontoid and the posterior bone of the C1.

Tips for the neurologically challenged!

Best thing I've bought lately? A dustpan with a long handle so that I don't have to lean down with the dustpan after sweeping! Really worth every penny of the $1.19 I spent at the dollar store!
Nausea! A lot of folks with brainstem compression and neurological issues suffer from it frequently. A couple of things have helped me: one is Ginger. I get powdered Ginger and then stir it into ice water with some Splenda, add a straw and it's a delicious summer drink that does a remarkable job in relieving nausea for me. I also use peppermint tea. This is really good, especially right before bedtime, for settling the stomach! **Another tip for nausea: chew gum! Try it, it does work sometimes.
For those with suboccipital pain (and you know who you are!), I think I've found a great pillow to rest my head against in a chair or in the truck. It's an inflatable pillow made for the bathtub, it's shaped like a shell, has four sections to it, and is relatively flat. Softly cushions the back of my head and only cost $3.50!
For neuropathic itch/burning and lancinating pains, apply ice! They say the brain can't process two sensations at the same time in the same area. Ice overrides the itch and pain. Give it a try! Gel paks are great, but I also use frozen bottles of water, and I roll it around my deltoids where needed.
If you wear a neck brace, for pain in the suboccipital area, place a frozen ice gel pak under the neck brace. I use an Aspen collar and this works great!
Buy milk in a gallon, but then halve it by pouring into two containers to store in the fridge. This makes it lighter each time you make a latte or eat a bowl of cereal!

Life After a Jefferson Fracture

Tuesday, October 2, 2007

The taste of Pamidronate

1 comment:

Appliances for the Cspine-challenged!

Sketch of a Jefferson Fracture

Example of a 3 place Jefferson Fracture

MY C1, 3 years post-injury

3D CT

Favorite Links

Zipperhead"s Fusion

Tips for the neurologically challenged!