New news, not good news (Crohn's unrelated)

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mccindy

mccindy

Joined
Apr 30, 2013
Messages
1,109
Location
Minnesota
So Friday I had a seizure in my office and woke up on the floor. I went to my staff and they took me to the ER, where I had a CT and an MRI, and then was transferred to Abbott-Northwestern in the Twin Cities. Turns out I have a brain tumor on the outer left part of my brain. It's about an inch in size. They don't think it's cancerous, but they can't take it out or even biopsy it because the part of my brain it is affecting controls the right side of my body and I'll lose some motor control. I have to take anti-seizure medication and can't drive for three months, take a bath alone or go swimming.
Since it affects the right side of my body and my GI symptoms are in my right belly, I asked the neuro if it was related. Unfortunately, it isn't! So I just get to add to my list of things that are wrong with me I guess. WTF.
 
:hug: I'm so sorry, mccindy! Seems like you're having trouble catching a break lately. :(

I hope everything goes well. Please keep us updated.
 
I am sorry Cindy! That is terrible. It seems like when it rains in pours. I am guessing they are going to monitor it? Did they give you anything to help prevent the seizures?
 
They did start me on Keppra. I am supposed to start seeing a neurooncologist too. Sounds like just monitoring with scans for now - I supppose I'll have to have MRIs so often to look at it. It's kind of hard to believe right now!
 
Im so sorry to hear that mccindy. Must have been so scary to find this out :(
Wish I could offer some advice.. I just hope the medication can help to control the tumour's effects.
Xxx
 
Oh my goodness McCindy, you must be totally freaking out! Any ideas about the type of tumor it might be?

I wish you all the best as you go through this. You're such a "rock" on this forum, it's time to support you!
 
Thank you so much. I am pretty scared. The neuro I saw at the hospital called it a "glioma" and said it grew from my own brain tissue. I don't know the grade or anything yet, probably won't until I see the neurooncologist. Google is scaring me!
 
Oh Cindy, that's awful! I'm so sorry to hear it. Sending you a big hug from across the state border.

You mentioned no baths, driving, etc for 3 months - what happens after 3 months?

I'm so sorry to hear you have to go through yet more tests and see even more doctors. I'm sure that is wearing you down on top of everything else. I wish I could help, but I'm here listening anytime you need to talk!
 
Cat - I can drive again after three months if I don't have any more seizures. I'm not sure about the bathing/swimming thing, I think it's okay if I have someone with me. I appreciate all the support for sure, it does help! Hopefully the medication keeps everything under control and I get more information from the neurooncologist soon so I know what the prognosis is and treatment options/details. It's scary right now because I don't know what's going on.
 
SO SORRY to hear about this, I hope it doesn't alter or impair your life too much.

It is terrifying not knowing and I swear sometimes if it isn't one thing it's another, but you will push through.... you are a fighter! :hug:
 
I'm sorry to hear this mmcindy...:ghug:

I totally understand your fear.. My husband was diagnosed with a benign brain tumor 5 years ago ....hes had a few operations but the main thing is hes still here.

Try not to stress.
I hope the medication works for you...:ghug:
 
Hi there,
I send you my love and prayers at this very difficult and traumatic time for you. I hope all goes well for you ,and they can help you feel better. Thinking of you. Let us know how you are when you feel up to being on the forum. Best wishes.:bigwave:
 
mmcindy,
Sorry you are having to go through this, hope the medication keeps everything under control. Sending lots of hugs and support your way.
 
Thanks so much everyone! I'm doubly glad I found this forum, because it sure helps to have extra support even when it's not my belly causing the problems. I see the neuro oncologist tomorrow so I should get some answers at least. I'll keep everyone posted here when I know more, again thank you everyone so much! I'm keeping my fingers crossed that it's benign and treatable.
 
I've got my fingers crossed for you too, and hoping for some good news. Best of luck with the appointment!
 
Hi cindy
I'm so sorry your going though this ,
I know what your going though,
As at the moment I'm going though
Something similar regarding a tumour,
But the support from here and friends
And family will get you though this
I'm sure, be strong .
Hugs to you x
 
bummer in deed....at least you will be a pro at the ins and outs of the medical system. I don't even get asked for my ID anymore when I go to the ER. Welcome to the frequent flyers club....toes crossed that you scans go well
 
Thinking about you and sending hugs and prayers your way...Hope the appointment was ok? Best of luck. :ghug::ghug:
 
thanks so much everyone! I posted a new feed regarding my update. sounds like the tumor is benign, but I do have a few more tests to have done and a repeat MRI in five weeks to measure and see if there is any growth. Fingers crossed that there isn't.... it's very good if there is no growth or activity, it's very bad if there is.
 
Hi there,
I hope you continue to get better news and the tumour remains static. I wish you well again soon. Best wishes. It cannot be easy for you just now.:hug:
 
I did talk to my doctor today too, because I've still been having speech and memory problems. He wants me to double my dose of Keppra to control those symptoms. Ugh! But symptom control is definitely a good thing, I hate the feeling of the memory gaps or not knowing what words I'm trying to say.
 
Wow, that's scary about the memory gaps & speech issues! Has that been going on for long, or did it start after the seizure? I hope the tumor stays the same - no, really I hope it shrinks and disappears! - and I hope the double dose of meds helps a lot without any side effects. Hang in there, hopefully in 5 weeks you'll get some good news and your life can get back to relatively normal.
 
The memory gaps and word issues seem to have cropped up since the seizure. I'm not sure too much about before, I don't think it happened much. for now I just have to hope the meds work and wait for the MRI! Sucks to wait but I have a lot of family and friend visits coming up this month and a vacation so I'll enjoy all of that while I wait. :)
 
The memory issues could be a postdrome sort of effect from the seizure. Look up postical state. I wouldn't think too much into the memory issues unless they continue. I know I get the same thing for a few days after a severe migraine (not that a migraine is near a seizure, but the after effects can often be similar).

Best of luck. Sorry you've got one more thing on top of it all. Hopefully it clears up and can be taken care of.

All the best,

Nathan
 

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