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