The great waiting game....MRI of Brain - update

[Rogue1677x]

I didn't have brain tumor on my 2024 bingo card, but then again, who does?

So after finding I've got a brain tumor on February 26th this year, I was able to get a fairly quick telephone consult with a neurosurgeon in Boston. He ordered a new CT scan, done on March 1st and MRI done on March 4th.

Now comes the wait. And I'm not a patient person. The scans both indicate a meningioma, which he discussed on tge phone, as well as some extra bony growth inside my skull.

There's one line I made the mistake of googling and that was "leptomeningeal enhancement which likely shows dissemination".

Moral of that story, never Dr. Google...it's a dark and twisty rabbit hole.

Anyways, my fingers and toes (and eyes) are crossed for good news, but I don't have an appointment with the neurosurgeon until March 25th.

 

[TinkAgainU]

Anyways, my fingers and toes (and eyes) are crossed for good news, but I don't have an appointment with the neurosurgeon until March 25th.

Sending you hugs - March 25th would feel like an insanely long time to me too. Been there, done that. Hang in there, friend, and know (even though we don't know each other) I'm pulling for you!

 

[Rogue1677x]

Sending you hugs - March 25th would feel like an insanely long time to me too. Been there, done that. Hang in there, friend, and know (even though we don't know each other) I'm pulling for you!

Thanks so much!

 

[WDWEPCOT]

I’m praying for you !!! Google although I love it is NOT your friend right now stay off of it no matter how bad you want to get on it!! Busy yourself with other things I know it’s hard but I’ll help the days go by quicker
Sideboard story might help you I had to have spinal surgery and I had to wait 30 days and the doctor was so kind to tell me that if I fell down I would never get back up again those were the 30 of the longest days of my life I was so afraid I would fall and I had been falling a lot I was so afraid somebody would bump into me and knock me down I can’t tell you I wanted to be wrapped in bubble wrap or just sit in a chair or something for the next 30 days because I was so afraid something would happen and I would be paralyzed sometimes doctors need to just shut their mouth and other times they need to make appointment sooner so people stop stressing!! Moral of my story we get through it one day at a time - sometimes one minute at a time !!!
Know that the DIS Peeps are here for you !! It’s an awesome community of wonderful caring people !!!
I am wishing you all the best in the world and I hope you have a very blessed outcome!!

 

[Rogue1677x]

I’m praying for you !!! Google although I love it is NOT your friend right now stay off of it no matter how bad you want to get on it!! Busy yourself with other things I know it’s hard but I’ll help the days go by quicker
Sideboard story might help you I had to have spinal surgery and I had to wait 30 days and the doctor was so kind to tell me that if I fell down I would never get back up again those were the 30 of the longest days of my life I was so afraid I would fall and I had been falling a lot I was so afraid somebody would bump into me and knock me down I can’t tell you I wanted to be wrapped in bubble wrap or just sit in a chair or something for the next 30 days because I was so afraid something would happen and I would be paralyzed sometimes doctors need to just shut their mouth and other times they need to make appointment sooner so people stop stressing!! Moral of my story we get through it one day at a time - sometimes one minute at a time !!!
Know that the DIS Peeps are here for you !! It’s an awesome community of wonderful caring people !!!
I am wishing you all the best in the world and I hope you have a very blessed outcome!!

I can relate to the bubble wrap but only because I'm such a klutz.

I told my boss and a coworker about the tumor and they were great. My boss joked that he figures I'll use it as an excuse to make snarky comments to other people and get away with it...he's not wrong.

 

[WDWEPCOT]

Go for it !!! When else when you get a free card for that ??? Gotta use what you got I was left with a sometimes twitchy arm I can’t control if it smacks you or spills my drink on you !!

A sense of humor helps !!!!

 

[SpaceMan5]

@Rogue1677x I can so relate to what you are going thru. My DD24 was diagnosed with the same type of brain tumor. It all started last August with an eye doctor visit because she was experiencing some double vision and end with a successful brain tumor removal on the day before Thanksgiving.

One surgeon said to play the wait and see game. We got a second opinion and he said if it was my daughter, I would operate now. Reason, if the tumor continues to grow you will lose your vision and you will have lack of motor functions in the upper body due to the location of the tumor

Not gonna sugarcoat it but the recovery phase was grueling. Maybe I felt that way because it was one of my kids and no one wants to see their kids suffer. And I realize everyone recovers differently and she could have been on the extreme side.

As @WDWEPCOT said. the Dis community is awesome, lots of great and caring ppl to lean on. I know I did

Please, feel free to PM with questions, thoughts, anything. A good support network is vital.

Thoughts and prayers for you

 

[flyingdumbo127]

Hugs hug, Rogue and a whole lot of caring prayers. I would be blessed to send you some happy mail if you would like. PM me. Please take care and know we all care.

 

[Rogue1677x]

@Rogue1677x I can so relate to what you are going thru. My DD24 was diagnosed with the same type of brain tumor. It all started last August with an eye doctor visit because she was experiencing some double vision and end with a successful brain tumor removal on the day before Thanksgiving.

One surgeon said to play the wait and see game. We got a second opinion and he said if it was my daughter, I would operate now. Reason, if the tumor continues to grow you will lose your vision and you will have lack of motor functions in the upper body due to the location of the tumor

Not gonna sugarcoat it but the recovery phase was grueling. Maybe I felt that way because it was one of my kids and no one wants to see their kids suffer. And I realize everyone recovers differently and she could have been on the extreme side.

As @WDWEPCOT said. the Dis community is awesome, lots of great and caring ppl to lean on. I know I did

Please, feel free to PM with questions, thoughts, anything. A good support network is vital.

Thoughts and prayers for you

Thank you so much for sharing that. I'll definitely message later.

 

[Rogue1677x]

Hugs hug, Rogue and a whole lot of caring prayers. I would be blessed to send you some happy mail if you would like. PM me. Please take care and know we all care.

Thank you!

 

[mommasita]

That is a long time to wait knowing what you do, are you able to place yourself on a cancellation list? My husband reminded me I did not have an “appt”, but as soon as he had a cancellation I was called.

I had brain surgery in 2010, not for the same reason, but for a malformation.
I think I waited a little less, but yes the surgeon wanted his own tests done, even though I had them all just done. Once I did see him, it want long before surgery took place, like within 2 weeks.

I am thinking and praying for you . I know it is a little ahead of the game, but I am stubborn, and signed myself out (against medical advice), please do not do this I ended up right back in there.

I’m also here if you need a chat, loving the love and support on this thread

 

[WDWEPCOT]

Like I said the DIS is full of caring wonderful people !!!

 

[flyingdumbo127]

And YOU are sure one of them, dear WDWEPCOT. Extra Saturday love with prayer to all.

 

[WDWEPCOT]

Ah thank you I wasn’t looking for that I was just stating I’ve received so much love & support from the DIS it’s an awesome community and I’m so grateful to be a part of it !!!

 

[flyingdumbo127]

I know but it is true

 

[Rogue1677x]

That is a long time to wait knowing what you do, are you able to place yourself on a cancellation list? My husband reminded me I did not have an “appt”, but as soon as he had a cancellation I was called.

I had brain surgery in 2010, not for the same reason, but for a malformation.
I think I waited a little less, but yes the surgeon wanted his own tests done, even though I had them all just done. Once I did see him, it want long before surgery took place, like within 2 weeks.

I am thinking and praying for you . I know it is a little ahead of the game, but I am stubborn, and signed myself out (against medical advice), please do not do this I ended up right back in there.

I’m also here if you need a chat, loving the love and support on this thread

Yes, the office has me on a cancellation list. I'm keeping myself occupied with taking my daughter shopping for prom, thinking about graduation gift ideas, etc.

 

[WDWEPCOT]

Prom shopping I think I enjoyed that more than my daughters did !! I hope you have a great time doing it!!! Happy shopping!!!

 

[Rogue1677x]

Prom shopping I think I enjoyed that more than my daughters did !! I hope you have a great time doing it!!! Happy shopping!!!

Thanks!

 

[mommasita]

Thinking of you today @Rogue1677x
Please let us know how your appt went, if you are up to it

 

[Rogue1677x]

Thinking of you today @Rogue1677x
Please let us know how your appt went, if you are up to it

Thanks for checking in. My appointment didn't happen because the doctor was in surgery later than expected so his office will call to reschedule some time today. Hopefully it won't be too far out from now, but you can imagine my frustration.