Watching and Waiting

[Dawn]

I would like to connect with others who are advised to watch and wait and have a discussion about dealing with the ticking time bomb.  I'm sure I'm not the only one who struggles with the stress of waiting to see what sensory loss comes next and wondering if watching and waiting really is the right approach. 

I think I would benefit from hearing from others who are in the same situation. 

A short bit about my situation - C1-C1 intramedullary tumor (hamartoma vs pilocystic astrocytoma vs hemangioblastoma vs ependymoma - wow, that's a mouthful!) Discovered in 2011.  Size is 16 x 10 x 9 mm with 3 mm growth in 3 years.  Symptoms are intermittent numbness and burning in arms and legs and constant intense pain in the back of my head.  No motor dysfunction thankfully.  NS strongly advises against surgery and believes the tumor has "adhered" to the cord and risk for paralysis, death and at the very least making all of my symptoms much worse too great a risk.  Advises that I be grateful for the function that I have (which I am) and hope tumor doesn't grow. 

[Peace and love]

Hello Dawn, all the best...

If 3 mm growth in 3 years, it means that yr not going to get paralyzed in seconds, I believe it take time (gradually). However doing a surgery after wait and see is different than doing it suddenly. I have been victim for wait and see for 5 years. If I do my surgery now
, I believe that its fine since I fed up from being in pain for last 5 years 24/7. I have reason to do it (not like if I did it from first day of diagnose). Wait and see is good to decide if you want to live with pain or you want the risk of change.
If you do surgery without wait and see, you will not feel the taste of glory if surgery succeed, and if it fail you will keep saying I wish that I that I go thru wait and see.

even god only now and can predict when we will die, but also doctors nows the risks of this tumors(I think it will affect breathing)
so since, you have to think twice and be optimistic.

Good luck

[Mike]

Dam it Dawn, I’ve been talking to you for hours and hours. There is no way I can type that much with one hand. You don’t want to join this club!!! Sure you paid the entrance fee and one day you’ll be just like us. My advice is to get off your duff and live life to its fullest. Get out there and go parasailing or rock climbing or even caving. Once you have the surgery you won’t be able to dance, roller skate or even ride a motorcycle. I’d trade bodies with you in a heartbeat and my surgery was a success. (Boy my words sound pretty harsh, sorry) I’m 50 years old and now poop my pants.

[Dawn]

Wow. Love the harsh words, seriously. After my 2nd opinion with Dr Rhines I am feeling much more satisfied with the watch and wait plan. I just needed a better medical team providing information and options for me. My previous team, well, to put it plainly - sucked. So Mike, you will be happy to hear we are going camping, biking and kayaking in 2 weeks.

[Mike]

Dawn here is something to ask your doctor for your surgery
When I had the surgery the doc put a meter on my big toe. He said he cut until it went off.
I don’t know if this is normal practice for this type of surgery.
I guess I have it good compare to most everyone else on this board.
I still work full time and do aerobics. No pain. I’m just slower now, my balance is off.

[redaquadeb]

 Hi. I too am in the "watchful waiting" mode and have been for almost 3 years now. I have an intermedullary ependymoma @ C2, which is very slowly growing and presents minimal symptons that I can definately live with for now. For the first few months after I was initially diagnosed, I was an emotional wreck - for weeks I could focus on nothing else but my tumor, and it was incredibly emtionally draining.  I never missed even an hour of work, but I have to admit that it was hard to keep my head on straight on some of my worse days, especially as I neared my next MRI.
  I've since come to terms with my situation, and, as others have said, I live each day to the fullest (no joking: I really do run almost daily, I swim, I ride my bike, I hike, I kayak, and yes, I even ride my motorcyles!) What this experience has taught me is that one can never take anything for granted, so, I also got myself a dog and then bought my retirement/vacation home; had I not been digagnosed with this horrible disease, then I would have waited years to get both! I no longer obsess about my tumor, but I do think about it daily. I know how hard it is to live with this potentially fatal, or at the least, life-changing object in my spinal cord, but I've learned to live with that knowledge, at least for now, rather than fight it everyday.
I don't know if this helps others at all, but this is how I cope.  I'd love to continue the conversation!