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!

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!

Catching Up!

I've been a bit slack with this whole blogging thing...so 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 weeks...so 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

Yo Gabba Gabba!

My appointment with Dr Number 5 went really well! 

At first when she walked into the room she said the strangest things and I was so worried she was going to be a nut job but she actually turned out to be amazing! After she asked all the standard things that pain specialists have to ask - does your pain make you feel depressed? No... Do you think about suicide? No... Do you sometimes think you would rather die? NO!!!! - she examined my arm and its function, pin-pricked me up and down my arms to test my nerve sensation, and in the end prescribed me Gabapentin. The Gab will target my nerve pain, and she said once we have that under control we will deal with any residual pain.

She started me on 100mg which is the smallest dose, and for the first few days I was just on on one a day, just at night, to see if it helped me sleep and how I dealt with the side affects. It did help somewhat, but I'm still feeling pain. Today I graded up to a pill at lunch and one before bed, and I will do that for a couple of days before grading up to the full three-a-day prescription. I haven't really had any side effects yet, besides today feeling a bit 'delayed'...hard to explain but I felt like my actions were constantly a beat behind my thoughts...if that makes sense?! I have a feeling when I see her again next week she may increase my dosage, however, as it hasn't knocked the pain completely. 

She also wants me to try yoga or pilates or similar to strengthen my muscles, as I have the start of some muscle wasting in my left shoulder, from using my left elbow less. I'm going to try Aqua Zumba on Thursday, so that should be good for me, and fun too!


I have quite a bit of swelling and pain today, this is such an up and down journey. The pain doctor hit the nail on the head last week when she told me 'this is going to be like running a marathon - there will be ups and downs, but my job is to try and make it run alot smoother.' PVNS really is a marathon, with so many ups and downs. But I'm trying my hardest to focus on the ups, and make the best of the downs!

The 5th Ingredient

I had my 8 week post-op follow up with my surgeon today, and he was so upset to hear that I have been having so much pain already. He said if it wasn't completely crazy to open me up every 8 weeks, scrape the tumour out, and sew me back up again, then he'd do it as it gave me a few weeks relief. But as that is most definitely not an option, we need some way to manage my pain.

By the end of November I should have an appointment time for my 3 month post-op MRI and then my oncologist will decide if I qualify for chemo. Hopefully with some treatment, my tumour will shrink enough that I have pain relief. But while we wait for treatment, and in the long term, there needs to be some sort of a plan in place for pain.

So in comes the 5th 'ingredient' - a 5th doctor added to my team. I've been referred to a chronic pain doctor - initially to hopefully start me on some sort of a regime that keeps my pain under control enough that it doesn't affect me day to day, and allows me to sleep well each night while we figure out the next step in treatment, but also to work with my long term because - as my surgeon said - we need to face the facts that this condition has no cure, and my pain is going to be ongoing to various degrees for the rest of my life. 

Seeing the words 'no cure' in the referral to my new pain doctor was a little hard...it's something I know, but seeing it in black and white just makes it so real. This tumour isn't going anywhere. 

Fingers crossed some clever scientist makes a break through soon!

In the meantime, I have an appointment with Dr-Number-5 Friday next week, so we will see what she has to say - I have high hopes that she can help make a huge difference to my day-to-day life!

Kylie xoxo

Imaginary Boogiemen

The funny (and by funny I probably mean annoying) thing about PVNS is that the symptoms often flare up out of the blue. Super inconvenient for someone like me who is constantly on the go!

One of these annoying, out-of-the-blue attacks happened this Saturday night just past. I'd had the dull ache that often goes hand in hand with a PVNS tumour on and off for a few days, but mostly I'd had a good couple of weeks with my elbow. However, on Saturday night all of a sudden I started getting severe spasming pain in my joint, right through my nerves through to my wrist and fingers.

I took Endone when I went to bed but even that barely touched the pain, which continued throughout my broken sleep of the night. It was so severe at one point I was completely overcome by nausea, and also was convinced that someone was trying to get into my room! It was such a relief to finally be able to settle myself down at about 6am and sleep through until 10am. 

By the time I got up I was feeling much better, until lunchtime when I reached across the table to grab some food off a plate and white-hot pain shot through my elbow. I jerked it back like I had been burnt, and burst into tears - the shock of the intense pain literally took my breath away for several minutes.

However, there's a choice that must be made when choosing how to deal with these symptomatic periods. We can either live constantly on edge, waiting for the next pain to come, or we can focus on the time we have feeling good. 

That's the motto I try as hard as I can to live by - 

Don't live in fear of the bad days. Make the most of the good days!

Kylie xoxo

The Limbo Stick

There are a few things I have discovered about PVNS in the 3 months since my diagnosis and one of those things is that there is a lot of 'limbo' time involved in the process. Time spent just hanging around waiting to see if it is going to get better or worse, and to see what treatment is going to be needed next.

However, a lesson I have learnt that goes hand in hand with this is that you cannot under any circumstances spend this limbo time wallowing in your own self pity and allowing anxiety and worry to consume you - you just can't!

After a week or so of many emotional teary moments, frustrations and feeling very down, a big chat with my incredibly patient and wise best friend snapped me back to my happy, bubbly positive self and made me determined to spend my limbo time making the most of life.

In the spirit of living life to the full, here are some photo's of my best friend and I after Friday night's performance of Legally Blonde the Musical at the Lyric Theatre in Sydney, meeting my all time favourite performer and idol Lucy Durack, as well as David Harris and Rob Mills:

Yes, I have PVNS.

But PVNS does not have me!!!

Kylie xoxo