SRS appointment

[Alison]

Hi everyone.

I've been waiting for SRS in the UK since diagnosis in August and finally got an apt which was booked for Dec 6th with the MRI the week before. As I have been feeling more dizzy of late and really tender on the AN side of my head I was so glad the date was booked.

But today I've been rung to say my slot is needed for an emergency, so I am now postponed till the 27th Dec (I'm surprised they do it at Xmas) and I've had to re arrange the MRI for the week before.

I'm in the UK and the treatment centre in Bristol only treats one patient a week on the linac machine (electa) and they have too many of us in the queue.

I am prettydistressed about this as having waited 3 months already since the diagnosis and first MRI, I am concerned about growth in the meantime, and now another delay. There is no guarantee it won't get cancelled again and someone I've talked to who was treated there also had this happen. I'm also worried about the weather and travel disruption the more we get into winter, as I have a one and a half hour walk and bus trip to get to the treatment centre and the MRI before.

So having finally relaxed, knowing that the day was due when I could start my "after-treatment life" I now feel the creeping anxiety re-surfacing. It is like being on a knife edge wondering if this will be cancelled too. I was offered the possibility of a different doctor who may get me in quicker but he only "used to do the treatment" and is not the doc I met who does it now, so I stuck with her, Have I made the right decision? Experience counts I think and I don't know anything about this other guy. But what if she cancels again, do I risk someone else I've not met?

Any advice about how to be philisophical about this and stay calm?! Looking on the bright side at least I'll not be numb from the headframe for Xmas day, not that it matters, there is only me and my son, so no wild parties!

Alison

[arizonajack]

It would help to know the size of your AN in August, what your symptoms were prior to August and how long before August were you experiencing them.

Meantime, I'm going through a similar bureaucracy with my Veterans Administration health care.

I'll give you my timeline.

December 2011 - Almost complete loss of hearing right ear.  Some tinnitus. Some balance issues. Advised primary care physician and was referred to Audiologist.

February 2012 was first available appointment with Audiologist. Audiogram confirmed hearing loss. Referred to ENT.

March 2012 was first available appointment with ENT. Referred for MRI.

April 2012 was first available appointment for MRI. MRI found right side AN 3x4x9mm. Balance, tinnitus and hearing issues unchanged so decided to Watch and Wait for 6 months.

October 2012 - Second MRI showed growth to 4x4x11mm. Right side hearing completely gone, tinnitus on that side also gone, balance issues no change. Decided to kill it. Believed I was a good candidate for Gamma Knife.

November 2012 - After a month of hassling with the VA, was advised that paperwork would go through approving the procedure at Barrow Neurological Center here in Phoenix.

Might be another 3 to 5 weeks for the VA to process the paperwork authorizing Barrow to bill the VA.

My Gamma Knife is likely to occur afte the first of the year. So we are in the same boat with bureaucratic delays.

And, yes, experience counts. Stick with the doctor who has lots of experience with this.

As for how to look on the bright side, check this out:

https://www.youtube.com/watch?v=2hqS_lzNIlU

Should be familiar to somebody in the UK.

[Alison]

Hi arizonajack,

thanks for your reply. Yes, I've often resorted to Monty Python's song in times of despair!

I'm sorry you too have had a long wait for treatment. I have been rather naive about treatment in the US usually being quick to get if you have insurance (obviously not quick at all for those with no insurance). Here in the UK it seems you have to be almost an emergency these days before you get treatment and we have a postcode lottery regarding the type of treatment your local primary care trust will finance. Private healthcare is totally unaffordable for the average person here, unless you have a high flying job that includes it. In answer to your question, briefly:

My AN was said to be 14.5 cm when my doc read the MRI (IAC into the CPA) although report said 14mm x 10 x 8. 
April 2009 left sided deafness which doc said was wax. Syringed but no wax found but deafness went away.Then nothing till:
June 1012 extreme dizziness and balance issues, some ear fullness.
Aug 2012 ENT and then MRI 2 weeks later (amazingly quick, unusually but ENT guy suspected AN)


Since then increasing tinnitus and head pains, numbness, twitches on and off, tender head AN side, along with dizziness and balance issues continuing. Still hear OK, but hearing in AN ear less than it was in August. Chance of preserving it receding! I saw the neurosurgeon and the end of September and got my GP to chase up the apt at the oncology centre and had that in October. (Although they had been sent a report in error saying "no treatment required" so good job my GP chased it or I'd have been missed completely.)

I do get miffed by the lack of urgency in the UK regarding ANs and the treatment wait. I expect you feel the same about yours. With radiosurgery obviously the smaller it is when zapped the less there is to remain and continue pressing on the adjacent nerves. I am fearfu,l hearing about some people on here's rapid growth, that it will may get too big to zap!

Alison   

[arizonajack]

In answer to your question, briefly:

My AN was said to be 14.5 cm

I think you mean 1.45 cm.

14.5 cm is about 5 3/4 inches which I think is about the size of a grapefruit. 

 when my doc read the MRI (IAC into the CPA) although report said 14mm x 10 x 8. 

Somewhat spherical about 5/8 inch. I've read that under 2 cm is usually a good candidate for SRS.

April 2009 left sided deafness which doc said was wax. Syringed but no wax found but deafness went away.Then nothing till:
June 1012 extreme dizziness and balance issues, some ear fullness.
Aug 2012 ENT and then MRI 2 weeks later (amazingly quick, unusually but ENT guy suspected AN)

Since then increasing tinnitus and head pains, numbness, twitches on and off, tender head AN side, along with dizziness and balance issues continuing.

Facial numbness and twitching generally means that the tumor (from what I've read) is putting pressure on the facial nerve with runs adjacent to the acoustic nerve.

Still hear OK, but hearing in AN ear less than it was in August. Chance of preserving it receding! I saw the neurosurgeon and the end of September and got my GP to chase up the apt at the oncology centre and had that in October. (Although they had been sent a report in error saying "no treatment required" so good job my GP chased it or I'd have been missed completely.)

I do get miffed by the lack of urgency in the UK regarding ANs and the treatment wait. I expect you feel the same about yours. With radiosurgery obviously the smaller it is when zapped the less there is to remain and continue pressing on the adjacent nerves. I am fearfu,l hearing about some people on here's rapid growth, that it will may get too big to zap!

Alison

Probably a reasonable concern. I've also read about some rapid growth but most of the research that I've done (and a comment from an Otologist) is that they grow about 2mm per year which must be an average because mine added 2mm to the length in 6 months.

Although I don't think even another month or two is going to make any difference for me.

If it was going to take much longer than that I would have opted to use my Medicare and pay the 20% that isn't insured.

Do read up up on possible post-SRS issues so there won't be any surprises.

[Alison]

Hi,
thanks for the info. Yes of course, 14.5mm or not cm Doh! I just hope my little b***er hasn't grown to 2cm or more in the 4mth wait since the last MRI.

The docs like to say 2mm a year, but leapyeartwins and Clarice to name but two of our longstanding members (who have both been very helpful with their replies to my previous posts thanks ) had some rapid growth. The docs always dismiss these cases when I mention it! Bet if it was their brains they'd be a bit less dismissive of our fears!

But we have no choice but to wait and hope. I hear the strains of "Bright side of life" starting up in the distance!

Hope you are well today.

Alison