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Disappointing 8 week follow up


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Hello again!
Thanks to all who gave me such a warm welcome here. A few days ago I made the trip back to Philadelphia for my 8 week follow up. I was hoping to set a date for the craniotomy and to move forward in this process.
Unfortunately, I found out that first need another angiogram, which I am very frightened by.

 

The last one I had was done while I was still in a coma so I don't remember it but I also don't look forwar to it at all. I also found out I need to schedule another dr apt with the neurosurgery team!
My brain/ memory issues are so bad that my husband had to follow me around all day like I was a child just to make sure that I didn't forget anything or get lost.

 

I guess that I had my heart set on getting the surgery s cheduked to get my skull put back together and it all just seems like such a long process now! Thanks again for listening!
Mandie

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Mandie,

 

It's frustrating for you, but they might be weighing out the pros and cons.  I wont tell you to cheer up as if it was me I'd feel scared also

I was out of it and remember nothing also.  Phew !!

 

Keep strong and things will turn out right for you xx

 

Good Luck

Love

 

WinB143  xx xx  Bet hubby is scared,  mine was when I had shunt in as he didn't know if it was the right thing (and it was in my case xx).

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Mandie, I know all this feels scary for you, it's all new to you and it's natural to be apprehensive about the unknown.  However, angiograms are not that bad.  I've had two now, both of which I was awake and aware. My only regret is that I couldn't see the monitors with being short-sighted as I would have found that quite fascinating.  

 

They may be able to give you something beforehand to help you relax. The bench I was laid out on was the most uncomfortable part and whilst you have to remain still, you do have a head gadget to help with this. I don't recall them being at all painful and if dye is to be used, they will forewarn you and they should explain how that may feel at the time.  Take plenty of nice thoughts with you, a previous holiday or something you've enjoyed - perhaps imagine yourself on the beach - if you can keep your mind occupied during this, it will soon be over.

 

I know from previous experience that I have become too anxious about these things - the waiting and not knowing can be quite draining but you will get through this - it is all designed to make you better and that's what you want.

 

Best wishes,

Sarah

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Hi Mandie, like Sarah I have had two angios, one awake and one I was out prior to coiling surgery. The one awake I was very nervous about, so I came here and everyone put my mind at rest somewhat. The worry won't go away completely but as sarah said its actually quite interesting if you can find your curiosity.

There will be a lot of people in the room, there will be amazing bits of kit moving around your head and don't laugh but a bikini trim may be prudent!, LOL. Everyone was lovely during mine, they explained I may feel warm in the head when the dye goes in or get flashes of light and I did but honestly the worry about it was far worse that the actual procedure.

Hardest part? Lying still afterward, so take some good music or podcasts to listen to as you can't do much else.

Making sure they know exactly what their plan is going to be for you is a good thing, frustrating I am sure when you want things done and to move forward but this is part of moving forward, they need to chart things and every neuro surgeon I have met is slightly OCD so not surprising they want to know what the landscape is before more surgery.

Good luck. Keep us posted.

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Mandie

 

Like Daffs I have had 2 agios. One awake and 1 know nothing about. I will say the one I was awake for was fine, went really quickly. My only complaint was that I could not see the screen properly and that the person doing it was speaking so quietly I could not hear him. I had no pain and my only concern was someone pressing on my groin for 15 mins after to stop the bleeding - I wondered what they were up to. 

Good luck, you will be fine xx

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Hi Mandie,

Where in Philadelphia? I was at Jefferson and had a fabolous dr. I had three angios and they will put you to sleep there. Nothing to be worried about. I hope all is well. If you are at Jefferson, you are in great hands!

Iola

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