Thursday, April 11, 2013

What's Next?

It's been a while! I thought I would do a quick update on where I am at.

Since I had the dry needling and intensive physio in January, I had a really good run of being pretty much a-symptomatic. I was off all pain meds, and feeling pretty fantastic. In early March I started getting a few twinges here and there, a few numb fingers and shooting pains. I went to the physio for some more needling, but unfortunately this time it hasn't had the same effect, and my symptoms have been very up and down and uncontrolled over the past month, to the point where nerve pain will hit suddenly and so severely that I will vomit.

I have also had more general aching in my elbow, I'm not sure if this might be related to the weather starting to cool down?

I am going overseas to America and the UK for 6 weeks next month, so I thought I should do something about getting the pain under control before I go. The last thing I want is it be stuck in an unfamiliar country in excruciating pain!

I was originally going to see my oncologist, but he came up with a new plan so now I am going to see my pain doctor on May 10th so she can give me a prescription of some description, as well as letter to take pain meds overseas. 8 days after I get home, I will be having an MRI and then the following week I will be seeing my oncologist for the results and to decide what we do next.

Last time I had an MRI he just sent me a letter with the results, but this time he wants to see me because of my symptoms. So it will be interesting to hear what his plan is from here on out!

Wednesday, January 23, 2013

Sweet Static

The best news I could have hoped for right now :)

My oncologist has given me the option of watching and waiting 6 months, re-scanning, and deciding on an action plan then, or going to see him now to discuss options for the residual tumour.

I have some decisions to make, but at least this buys me more time to do so!

Friday, January 11, 2013

Catching Up!

I've been a bit slack with this whole blogging I thought I would just do a quick post to bring us up to date on good old "Trevor", my elbow tumour. 

After my appointment with the Pain Doctor, I continued on the low dose of Gabapentin for 2 weeks until my follow up her, with little result. So she doubled the dose and told me to fiddle with the dose until I found a good balance between pain relief and side affects. I started on the double dose the next morning and within half an hour felt so moody and snappy and horrible! I continued on the double dose for about a week but I couldn't stand the way it made me feel, so I stopped taking it all together right before Christmas. I just don't like the feeling of being constantly medicated, and to be honest, having to remember to take a million pills 3 times a day especially when I'm at work...having to keep an eye on the time, and stop what I'm doing to go take them...was a bit of a challenge...I see the doctor again in 2 we will see what comes of that!

For having not been on any pain relief day to day for the last month, my elbow itself actually hasn't been too bad. A new problem has cropped up which is my main concern at the moment, and that is my shoulder. A couple of months ago, my shoulder started aching around my left shoulder blade, and on top of my shoulder up into my neck. The pain doctor said it was from subconsciously holding my arm different since my elbow surgery, and protecting it. The problem has gotten worse and worse, so since I've been on holidays from work I went back to my physio who worked with my after my surgery so he could take a look at it.

Turns out all the muscles that support my shoulder/shoulder blade have gone AWOL over the past couple of months. The tumour left on the ligaments in my elbow is pulling the ligaments in my shoulder out of line, and my muscles are all shedding away, causing my shoulder blade to be out of place, and bad headaches where they are tensing up in my neck. One little elbow can cause SO many stupid problems!!!

So I've been at the physio twice a week for the past 2 weeks having massage and manipulation, in combination with dry needling, and having my shoulder taped into place. I have more work to be done on it today and then probably twice again next week, and then I go back to work so we will see what happens.


It's just one thing after another with this disease! 

Speaking of...I had my follow up MRI the week before christmas - my first scan since my surgery. I haven't gotten the official results yet, since my oncologist is on annual leave, but the MRI was an experience. I needed contrast scans at the end, but instead of cannulating me at the start, they pulled me out after the non contrast scans - but I had to stay laying in the same position, all strapped down to the table - to inject the contrast. I usually have pretty crappy veins, but that day they were just not going to cooperate - 4 sticks later they still couldn't find a vein, so they took the last 2 sets of pictures without contrast and fingers crossed the doctor is ok with that. The doctor at the MRI centre took a look at the scans and said she could see the leftover PVNS without the contrast so hopefully it will be ok and I won't have to go back for more! She said there isn't TOO much left, it's just the position of what's left causing me the symptoms. So it will be very interesting to see what my oncologist has to say!

Apart from that, I've just been enjoying my time off work and the christmas/new years festivities, and hoping that 2013 will be a MUCH better year than 2012 was!

Kylie xoxo