We have tried so many things. Nothing that "should" work for the type of pain I have, has so far. The source of my pain is undetermined, so it's hard to know what to target, which means pin pointing a treatment has been quite the journey. At a certain point, we run out of the "typical" treatments and medications and we had to start looking into more experimental treatments.
Super quick recap of where I'm at to make the rest of this post make more sense: I was diagnosed with MS in 2014 due to some "white spots" in my brain that we found on an MRI. in 2019, however, that diagnosis was revoked, doctors started calling those "spots" tumors, but they have yet to be replaced with another solid diagnosis. Just about two years ago I developed extraordinary nerve pain in my face, an electric shock like feeling surging through my face constantly, causing me to upend my life and change just about everything I do day-to-day.
In July of 2021 I moved back to Michigan from Idaho and since then I have been trying every different procedure, medication, scan, etc. to try to find some sort of relief. Nothing has worked so far.
So with this information, just know that I am at the point now of trying much more experimental, trial-based procedures and treatments. That is what most of my recent trip to the Mayo Clinic consisted of. I went there for three reasons, to participate in a trial for a procedure called Transcranial Magnetic Stimulation (TMS), to get a spinal tap that is being used in a different study, and to get my yearly MRI.
Pictured above is everything except for the magnet over my head for the TMS procedure (you can kind of see it behind my head in the first picture, the white thing with all the chords attached to it). The sensor that is placed on my head, the scans that they use to guide them, and the nice comfy chair I got to sit in during it.
TMS is a non-surgical, non-invasive treatment, all that is needed is a few sensors placed on me and a magnet placed over my head. A series of short magnetic pulses come from that magnet to stimulate different nerve cells. Those pulses are focused in different areas depending on what is currently being targeted.
As with many things, TMS can be used for a myriad of different things. Currently, it is FDA approved for emotional disorders (PTSD, major depression, OCD, etc.). Currently, though, the Mayo Clinic is in the trial phases of getting it approved as pain management.
For this reason, the protocol isn't 100% locked in. The length of the treatment and exact location to stimulate are not completely ironed out yet. There has absolutely been some success for the team that is running it, but there was only about a 50/50 chance of it working for my pain (which, honestly, is higher than what I've been told for other procedures and medications).
We were all rather hopeful that this might help, however, in the end it was unsuccessful in treating or changing my pain at all.
As for the spinal tap - that was done more for diagnostic reasons rather than any sort of pain relief. There is a new study being conducted at the Mayo Clinic that is trying to see if the spinal fluid is carrying any trace DNA or various other markers to indicate what is in my brain. The hope is that they can get the information you would get from a biopsy without actually cutting into the brain.
I also gave blood for this study as well, just one more thing that the research group can look into to try and find any information indicating what's going on.
I got one spinal tap when I was 16 and getting diagnosed with MS. The problem with using a spinal tap for a diagnosis is that a "positive" spinal test can actually indicate many different things. Meaning that a spinal tap can point towards certain things without being certain of anything.
I haven't quite talked with my doctor to hear the results of these findings. If anything comes from it, though, I'll be sure update you all. :)
The MRI I got was very routine. Since 2014, when we first found the tumors in my brain, I have gotten yearly MRI's to keep an eye on everything. To make sure nothing is growing or changing or increasing in numbers.
In order to get a full picture of everything that we are aware of, I have to get my brain, cervical spine, and thoracic spine scanned. These scan usually take about two hours.
We are aware of many of these tumors throughout my entire spinal chord and brain, so seeing tumors on these scans aren't all that scary, as long as they aren't growing in size or in number.
I get these done often enough that there is usually minimal to no change from one scan to the next. So I typically don't expect to have any new information coming from these MRI's
These days, I look forward to going to Mayo a little less. It's the best hospital in the country, staffed with some of the best doctors in the nation. I have such an incredible and caring group of doctors that are working with me, but even so, it gets exhausting time after time without any new information or any advances in pain treatment.
Doctors often find the mystery of my illness very intriguing. It seems that more often than not, a doctors first response to me after I explain my medical history is, "huh... interesting". For a long time, I was labeled as a big question mark, a medical mystery, which honestly I always thought was kinda cool.
However, the more time that passes, and the more doctors that try and fail to find a diagnosis/treatment, the more scary it gets to hear that no one can pin point what is going on.
That rather overwhelming feeling is why we're breaking into more of the experimental/trial phase/research/study type procedures and treatments. My doctors are doing everything they know how to, and for now, that's what we're going to keep on doing.
There isn't a better team that I could have working for me, and I'm confident that they aren't going to give up on me until we find the answer, but for now, it's time to move to plan... whatever one we're on now.
