Postponed Again!!

[kiwi]

ok well this is just getting ridiculous, I was told by my ENT that if I do nothing about this tumor I will die, I saw him on the 15th Dec 2009 and he said early Feb for surgery, then he postponed it to the 16th Feb.....now I just got a call to say 16th March.  I just burst into tears.  All my plans are now in tatters.  I could just scream.

Jacqui

[opp2]

I'm so sorry Jacqui. I wish there were something else to do. I know how you feel, almost. Big hugs for you as you fume away.

[Shelley G]

I can only imagine your frustsration!! There were  few times I would have liked to do damage to the physicians that I dealt with- my ENT told me not to worry about my AN, his words were that it wouldn't kill me- well- almost, but it didn't- but no thanks to him. Hang in there, as long as your symptoms are not getting worse- if they are, then make some noise!!

[kiwi]

My symptoms hoave got worse and that scares me...I hope its not getting bigger, I am so tired of this.  The pressure in my head is causing some problems, when the pressure builds my left eye seems to have a moment of blindness and my hearing in my good ear fluctuates in and out.  I cant believe I have to put up with this for another 5 weeks now.  My whole family is upset with the change again.  There is nothing I can do so I just have to calm down and just get on with it.

Jacqui

[pjb]

So sorry to hear about your surgery being postponed again I cannot imagine what you must be going through my surgeon made a comment for insurance purposes he suggested for me to go to the Emergency Room if your symptoms get too bad maybe you should think about going to the Emergency Room just a thought....

Best Wishes,

Pat

[sues1953]

Kiwi

I am so sorry to hear about yet another postponement!  Why is your Dr. putting your surgery off again?  I think I would scream if I were you, it's not going to change anything but it could release some tention.  These tumors usually grow slowly so I am sure that your life isn't in immediate danger.

I can certainly relate to want to get this thing out of my head (3.2 cm diagnosed 12/4/09) I am still working on finding the right surgeon and getting my insurance to pay for it.  I do think that since I have been diagnosed I have become more aware of the symptoms and they seem worse.  Sometimes I think my mind is really working overtime on this.  It is hard to think of anything else  Is this the only option you have as far as surgeons go?   It would be making me a little nervous about a Dr who keeps changing the surgery date.

Hang in there!  Hopefully soon we will be posties and able to get on with our lives.

Sue

[james e]

I had my heart surgery set back a month, and it just crushed me. I had a hole in my heart repaired, and the part that was being put in my heart requires a specialist from the manufacturer be present for the surgery. He had a change in his schedule and could not be there. It felt like the end of  the world. I had gone through the mental planning...my family had done the same...we were all set to go. That was six months ago, the surgery was successful, and I work out every day lifting weights, all muscled out...not bad for a 60 year old man. I am fully in your camp. My best advice is to accept that this has happened to you, and it is not the end of the world. Acceptance is the key word. Every day in your life is important. Don't let this worry away your happiness for the next month, or how ever long it will take until your surgery  takes place. Your family at home and OUR  family here will help you through this.

[Debbi]

Hi Kiwi-

I feel your frustration!  My surgical date moved twice and I really thought my head was going to blow off at one point (frustration, not tumor!)  The thing to remember is that if the surgeon thought you were in imminent danger, they wouldn't postpone the surgery.  I hope that this is the last date change for you, as I know how awful it is to get ready and then have everything change.

I think I would be a little cautious on going to the emergency room.  The surgeons who treat ANs are extremely specialized and I am not sure they would necessarily be available in an ER situation. Just a thought. 

Debbi

[pjb]

Hi Kiwi-

I feel your frustration!  My surgical date moved twice and I really thought my head was going to blow off at one point (frustration, not tumor!)  The thing to remember is that if the surgeon thought you were in imminent danger, they wouldn't postpone the surgery.  I hope that this is the last date change for you, as I know how awful it is to get ready and then have everything change.

I think I would be a little cautious on going to the emergency room.  The surgeons who treat ANs are extremely specialized and I am not sure they would necessarily be available in an ER situation. Just a thought. 

Debbi

I only stated that because if it is in the same hospital I am sure that they would call in the AN surgeons having a symptom of blindness is a little scary especially if it just started and an option to think about if it does get worse.  It was just a thought I would rather be safe especially when it comes to the eyes.

Pat

[kiwi]

Thanks for your replies.  I have screamed and cried and told all my family who basically said "you gotta be kidding." 

Unfortunately things work a bit differently here.  We dont get a choice here about surgeons as the majority of us just get allocated ENT specialists annd neurosurgeons.  I know who my ENT specialist is but I have no idea who the neuro is.  I was first put off because there was someone more ill than me but this time it is because the neurosurgeon who my ENT wants to work with is not available till then.  I guess if the ENT wants to work with the Neurosurgeon he feels comfortable with I am not going to argue.

Most people go through Public hospitals here in which we dont need insurance but it leaves you with no control and no choice.  I have insurance which is great for the small things but it gets me no extra perks in this case as mine is more urgent than most things.  I have insurance but are refusing to pay because they said I haver a pre-existing condition because I spoke to my doc in 2007 (before I got insurance) about having a blocked ear which she thought was just a blocked eustachian tube following the bout of flu I had just had, but according to my insurance I should have known it was a tumor....go figure.

The hospital I am having surgery at is a bout 5 hours from here so the emergency room at the hospital here probably wouldnt do much for me except feed me painkillers.  I will just carry on and make the best of this awful situation and if they move it again Im not sure how I will react.

Anyway thankyou for your support, I know I can always count on this forum.  Thankyou so much.

Jacqui

[sues1953]

Jacqui

I think that is a good reason for your surgeon to postpone your surgery, it would show me that he wants to do the very best for you.  It is just unfortunate that you have to wait, it is so hard.

I don't really understand how your healthcare system there works but I
m thinking our system and the way it works now is going to change soon.  There are so many here that have no insurance.  I am fortunate that I do have insurance but it is the kind that tells me where I have to go, I am in the process of protesting that so I am in the waiting mode as well.

Good Luck, may the time pass quickly and you will be tumor fee before you know it!

Sue

[Lynn Mc]

Jacqui,

I can't believe this has happened to you again!  I guess the ENT wants what is best for you.  Hopefully the 5 weeks go quickly.  Enjoy your dogs and horse.  They are wonderful for the soul.   Hopefully the Magic Scarf will be a comfort to you.

Thinking of you,

Lynn

[suboo73]

Jacqui,

So sorry to hear your surgery was postponed yet again.
I do agree with others here, that hopefully your ENT is making a good choice to wait for the neuro he normally works with.

I imagine that stress is not helping your situation...
As difficult as it might be, try to relax as much as possible until your surgery day. 

Prayers that your symptoms are minimal until then and your date comes quickly!
We are here for you.

More prayers for you and your family.

Sincerely,
Sue