Seventeen Days to go until the Trial

and... It almost seems real. I am rapidly cycling between Disneyland-level excitement and Internally lecturing myself on not getting my hopes up. Trying to remember there is a reason we do a trial. But, I'm naturally a realistic optimist and after so many failed treatments, it is tough.

Real world preparation has begun. I've made the appointment for my pre-op blood work, and over the course of the past few days, I've tackled groceries, house-cleaning, and laundry... early nesting. These things are usually difficult tasks for me anyway, but I fought extra hard through the pain and nausea because I know it will make things easier for me and the folks who will be helping me out during the trial. Speaking of help...

I took the advice of a fellow blogger, and have set up a site here to allow my friends and family to help out with meal preparation, general assistance, and visits during the trial. I'm not sure how I will feel, and I know I'll probably need more assistance after a permanent implant surgery...But I figure if nothing else, we'll just have quality time if I'm more self sufficient than not. So I guess it is a trial run for ONS and this system. I'm overwhelmed by the absolutely fantabulous people who surround me and continue to support and rally around me through this craziness. I couldn't be luckier when it comes to mah peeps.

 
So, there probably won't be much more to post until February 10th...I'll just be here waiting impatiently. Feel free to bug me with comments, questions, suggestions, etc.

Questions

From reading blogs, taking notes, talking with people, and from that moment right before you think you can sleep that your brain decides it is going to start making lists and being inquisitive...I have made a list of questions to ask the professionals. Some have been answered by my St. Jude rep. Others will have to wait for the doctor, and then some yet will wait for the neurosurgeon performing the permanent implant if the trial works out. I wanted to post them here for both the purpose of helping future recipients, as well as to get feedback from stim veterans who may have additional questions I should look into.
* Those applicable to the trial

• * What is the name/model of the stimulator I will be receiving and how will it differ from the trial?
• * Will a representative be present during the procedure?
  I was told my rep would be at my appointment, though I was made aware they work as a team and only differ in personality not skill and training...so if she couldn't make it for any reason, a colleague would be there in her stead.
• Details of surgeon who will perform the permanent implantation and how far out are they scheduling?
  I was able to find out this info. Currently, his scheduling is a few months out.
• Where will the IPG be placed and why? (Abdomen, Chest, Buttock, etc)
  This is something I will discuss with the neurosurgeon. Though there are equally good/neg points for each location, and I'm finding a lot of this decision comes down to personal choice.
• Will the battery be rechargeable or non-rechargeable and what is the expected lifespan?
  The battery will require regular charging depending on usage and last anywhere from 5-10 years based on how much stimulation is required on a regular basis.
• Will there be stress loops added in the wire slack for the leads?
• Will Round or Paddle leads be used?
  For the trial the leads will be round, as they are inserted via a needle delivery system. The type may change for the final procedure.
• * What type of anasthesia/twilight sedation will be used during trial and/or implant surgery?
  (Basically, what will I be on, aware of, and why.)
  I was told Propofol would be used during the trial. I'll find out more that morning.
• * Post surgical pain control?
  (Making sure this is something that is A.Effective and B.I can tolerate as well as when I will receive the RX to possibly have it ahead of time)
• *  Will I be given prophylactic antibiotics?
  (again checking whether this can be filled ahead of time)
• *  Wound care?
  (Including obtaining supplies and what can be provided as opposed to purchased)
• * What will my physical limitations be?
• * What is my expected healing as well as recovery time?
• Has the doctor/should the doctor have ordered anything that I need to be sure I have before leaving the hospital?
• * Will any/all questions regarding programming of the unit and how to change it/turn stim on-off or similar items are covered, understood, or written down before leaving?
  (Also including what actions, security gates, microwaves, etc., should I be concerned about)
  The rep from St. Jude will make sure there is sufficient working knowledge for the trial period.

I will revisit this list of questions later to fill in the blanks.

On a sidenote: Though I initially would have liked my trial sooner, I'm glad I have a few weeks yet. I have developed the sniffles and a sore throat. (Probably because the only think I really need to do between now and then is NOT GET SICK) Here's hoping it is just a cold that passes quickly.

Head Gnomes: The Origin Story - or - The boring background of my endless headache

This post can be skipped. It is simply a history of how my headaches started and how I came to my decision to try ONSTIM.

In 2008, these gnomes armed with pickaxes and ice-picks took up residence in my head (Or at least that is what I thought...) Doctors didn't completely agree with my self-diagnosis.

From Discussion to Decision

After my headache specialist and I exhausted all other options and added the tag "drug resistant" to my diagnosis, we discussed the possibility of Occipital Nerve Stimulation again. I personally didn't want to succumb to surgical intervention, but never ruled it out as a possibility. I knew it was out there, but definitely wanted to try everything else first. The time came when the "We can't promise anything", "Not a cure.", "Not 100% relief", "May not work for you" surgical option sounded like a damn fine idea.

At that point, my doctor arranged for me to meet a previous ONSTIM recipient as well as a representative from St. Jude Medical for education and Q&A time. Both of these encounters almost immediately cemented my choice to proceed.

The next step was to meet with the Pain Management specialist within the practice. I had an appointment with his colleague and after that appointment it was determined I would be a good candidate and we moved on to the next step...Psychiatric Evaluation.

Luckily, the Psychologist is also a member of the same Institution so scheduling wasn't difficult and he knew exactly what test to perform and why. That visit consisted of some one on one Q&A and an electronically administered test based on the Minnesota Multiphasic Personality Inventory or MMPI. It had a little over 300 questions and was made up of short True or False statements (whether you agree with the statement or disagree). I took about 25 minutes to complete this (It can take up to three hours) I think a history of online quizzes helped me to finish a little quicker...

After the Pain Mgt. Doctor, Dr. P, received the results of the test, he and I had an appointment to discuss the trial. He informed me that I was psychologically cleared, (Apparently, I'm just crazy enough to have wires in my head), gave me pre-op instructions (Mostly what drugs I couldn't take prior and when I needed to stop food intake) He also gave me my pre-op blood work order which I will need to complete a couple of days prior to my appointment and we talked about my new haircut. He explained how they would need to shave a small section of my hair, and he let me know how a short haircut would be helpful (but not necessary). I let him know that it was my intention to make his job easier by preparing with a mohawk. I figured since I'll have sutures and wires and I won't be able to shower for a few days, that I might as well make it more convenient and have fun with it at the same time. I left my orders and his staff was going to make sure all of the insurance requirements were taken care of.

That night, Aaron helped me with my hair...

BEFORE

AFTER-Down

AFTER-Up

That day, I also spoke to my St. Jude rep and talked about where we were in the process.

Over the last few days, in addition to them being worse than usual headache days, they were full of anxiousness knowing I'd soon have a date scheduled. I've spent this time reading blogs from other people who have had a simulator and learning from their experiences. I am so grateful to them, as this isn't commonplace yet, there aren't official resources for patients outside of reading studies and marketing materials. I hope that my experience can help others as much as others have helped me thus far.

So today, I was scheduled. February 10th is when I will have my trial performed. I called and had a short conversation with my St. Jude Rep Jill and she answered questions I had compiled from reading blogs and jotting them down. I still have a few questions left for the doctor(s) but she helped out quite a bit. Now I'm just impatient (Trying to keep my hopes of success at bay) which is easier said than done. I have to have enough faith in this to continue but not so much that I inadvertently convince myself that the trial does something it doesn't (I've seen where that ends, and it isn't good) 

I'm excited, a bit nervous (more of the outcome of the trial than the procedure), anxious, impatient, and hopeful, which is really the most important part...because it is nice to have something to be hopeful about.

So, I'll update as often as ONSTIM related events occur, or when I think of pertinent info to share. 

How my Head Gnomes attack

I know everyone's pain is different. If you are reading this because you are someone looking into ONSTIM, I thought it might help to explain my headache for comparison purposes. Or if you know me and are just curious.

My headache condition is unremitting Hemicrania Continua.
It is constant. My baseline of pain is a 3 or 4 on the 1-10 scale with exacerbation periods ranging from 6-10. My pain is on the right side of my head with the very rare left side referred pain. It shifts between the Occipital area on the back of my head to the supraorbital area above my eye with the most common manifestation being in the auriculotemporal area near my ear/temple. It is difficult to describe the pain. I guess the easiest would be with words like achy, tight, diffused, pressing, and occasionally burning.

In addition to the base headache, I have intermittent jabbing, stabbing, poking pain which is common with HC. This pain is where the Head Gnomes with Pickaxes and Ice-picks analogy originated.

My headache is a 10 the moment I wake. It takes anywhere from 15 minutes to 2 hours for it to slowly subside to its usual 4. My right eyelid droops and that eye sometimes feels like there is sand in it and is often sealed shut when I wake due to the eye watering associated with HC. (We like to say my right eye is sad.) I also get nasal congestion on the affected side at times when the headache is worse. Having a daily headache has caused neck issues, and often the pain in my head can travel from the worst point, down my neck, and into my shoulder blade.

A Bad Day

(I'm going to try to focus more on the headache itself and not the related cognitive difficulties is causes)

Things that make my headache worse include being overheated, (summers are worse for me) being tired, (which is easy to do considering the headache has caused horrible insomnia and an inability to sleep well from the pain itself), any physical activities from getting groceries to yoga (which has caused quite a lot of weight gain due to the sedentary lifestyle chronic pain causes), stress and anxiety, sound and lighting conditions can but rarely affect the severity of my headache. Doing too much of anything in a day, week, etc...is the biggest factor in my pain level. I have seen this explained in books and websites using analogies of allotted items such as "energy marbles" you have for a specific day...you only have a finite number and each activity you do reduces that number and your recovery or payback for using them is determined by how many you have left. Other times, the pain is more severe for no apparent reason and can stay that way for days... Basically, I have bad days, and better days, and I try my best to keep the bad days to a minimum by controlling what I can.