27 months post diagnosis and a clean MRI

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27 months post diagnosis and a clean MRI

by johngiustino on Fri Jan 25, 2013 04:40 AM

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I got the results of yesterday's MRI back today.Not only was there no sign of a recurrence, but also that enhancement around my surgical cavity showed signs of healing and retreating in spots.  The NO seemed happy to observe this. 

However, they are changing my seizure meds around: there have been a handful of occasions in the last several months where I had a hard time distinguishing comments/or memories from what I thought I may have dreamed.  It sounds odd, but it really confuses me badly and leaves me uncomfortable/dazed. The NO was confident these were auras.

Nevertheless, overall I had a great day.

I write this in the hope it will give others hope.

-JG

RE: 27 months post diagnosis and a clean MRI

by ourVictory on Fri Jan 25, 2013 05:47 AM

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very similar story in months, retreat and no growth  my NO mentioned inactive,but never used the word healing but pleased about the no change lately. Like you say this gives me hope since I am way over my initial prognosis another NO said but still there, I add me too-I am still here and for many more years despite my mild seizures, two three per month lately.

RE: 27 months post diagnosis and a clean MRI

by KrysannTHEmum on Fri Jan 25, 2013 05:51 AM

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Great news!! Thanks for sharing....hope is ALWAYS welcomed!!! I had some seizure activity (simple Partials)the other day and have had alot of anxiety the last couple of days...although I can't tell if it's an aura or a panic attack...weird feelings, like I obsessed over which sweater to wear yesterday, I HAD to find a black one with pockets....I don't have OCD tendencies...but I literally had to talk myself out of tearing apart my wardrobe to find the perfect one....also sudden feelings of panic, like I need to hurry 'cause I'm going to be late...when I am not going anywhere...not seeing my doc for another month...do you think that these may be panic attacks or possibly seizure related from your own experience? I took an extra 250 mg of keppra and it seemed to help in the morning...just not sure if I should try to see the doctor sooner or if this is just part of having seizures. I only had one simple partial last year and had another few the other day... Thanks, glad you had a good dAY!!

RE: 27 months post diagnosis and a clean MRI

by johngiustino on Fri Jan 25, 2013 06:19 AM

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I have frequent anxiety, especially around groups of people.  I often worry that I might get a seizure in front of coworkers or in a restaurant.  Unrelated to that, I sometimes just feel anxious, tense, and, yes, I think I have mild panic attacks.  I take Ativan (no more than 0.5-1 mg/day) when I feel this way.  I would see your doctor.  I used to take Elavil and it really helped with both my physical and mental issues.  However, when I started getting seizures, they took me off it.  Nearly every anti-depressant carries a seizure risk.  You have to balance the risk of each.  I do everything I can to avoid a seizure (I have had a few at work where I had to get taken out by the paramedics) but I do really miss my Elavil.  Talk to your doctor, I don't think taking more Keppra is the answer.  Also, getting out of your normal dosing schedule of Keppra can  give you a seizure.  There are no easy answers, but I bet you can find something else to help your panic attacks. 

Good luck,

JG

RE: 27 months post diagnosis and a clean MRI

by johngiustino on Fri Jan 25, 2013 06:28 AM

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ourVictory,

After a seizure I had a emergency room doctor tell me seizures can result from healing, specifically due to the reconnection of neurons.  I like to think that is the case.  Some support for this is that when my seizures started, things like my interest in listening to music returned.  My NO was always perplexed that after each seizure he could find nothing wrong in my MRI.  I was quite happy he could not, and overall I think the picture is indeed consistent with "healing". I like to think of things in this way, even if there is no direct proof!

Best regards,

JG

RE: 27 months post diagnosis and a clean MRI

by fromuk on Fri Jan 25, 2013 01:22 PM

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so pleased for you john -  the mri results are really good news...hope they get the meds sorted

have a great weekend

very best wishes carla (sister has gbm4)

 

RE: 27 months post diagnosis and a clean MRI

by Randy1958 on Fri Jan 25, 2013 06:38 PM

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On Jan 25, 2013 5:51 AM KrysannTHEmum wrote:

Great news!! Thanks for sharing....hope is ALWAYS welcomed!!! I had some seizure activity (simple Partials)the other day and have had alot of anxiety the last couple of days...although I can't tell if it's an aura or a panic attack...weird feelings, like I obsessed over which sweater to wear yesterday, I HAD to find a black one with pockets....I don't have OCD tendencies...but I literally had to talk myself out of tearing apart my wardrobe to find the perfect one....also sudden feelings of panic, like I need to hurry 'cause I'm going to be late...when I am not going anywhere...not seeing my doc for another month...do you think that these may be panic attacks or possibly seizure related from your own experience? I took an extra 250 mg of keppra and it seemed to help in the morning...just not sure if I should try to see the doctor sooner or if this is just part of having seizures. I only had one simple partial last year and had another few the other day... Thanks, glad you had a good dAY!!

Can someone explain to me what an "aura" is?  I don't understand it in the context of brain cancer.

Also I've had two MRIs this month.  The first was January 4th, got the results on the tenth.  The report said it was possible that my brain was swelling to fill the cavity left over from the resection, or else possibly a recurrence.  So far I still feel OK, I'm tired at times, but today I've already done a mile on my treadmill.  The doc asked me if I were showing any symptoms (exhaustion, dizziness, weakness, etc) I told him no, so he ordered the other MRI (taken January 21st).  This time it was to be a "spectroscopic" MRI, a more detailed look into the area in question.  The MRI was no big deal, I even slept through most of it.  I should have the results next Thursday, but so far I feel OK, and in fact am getting stronger by the day.  When I was in his office I demonstrated my motor skills for the doc and a colleauge.  They said for a man who been through the wringer I appeared to be very fit and strong.  Anyway cross your fingers, wish me luck or whatever works for you.

RE: 27 months post diagnosis and a clean MRI

by Randy1958 on Fri Jan 25, 2013 06:40 PM

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On Jan 25, 2013 6:38 PM Randy1958 wrote:

On Jan 25, 2013 5:51 AM KrysannTHEmum wrote:

Great news!! Thanks for sharing....hope is ALWAYS welcomed!!! I had some seizure activity (simple Partials)the other day and have had alot of anxiety the last couple of days...although I can't tell if it's an aura or a panic attack...weird feelings, like I obsessed over which sweater to wear yesterday, I HAD to find a black one with pockets....I don't have OCD tendencies...but I literally had to talk myself out of tearing apart my wardrobe to find the perfect one....also sudden feelings of panic, like I need to hurry 'cause I'm going to be late...when I am not going anywhere...not seeing my doc for another month...do you think that these may be panic attacks or possibly seizure related from your own experience? I took an extra 250 mg of keppra and it seemed to help in the morning...just not sure if I should try to see the doctor sooner or if this is just part of having seizures. I only had one simple partial last year and had another few the other day... Thanks, glad you had a good dAY!!

Can someone explain to me what an "aura" is?  I don't understand it in the context of brain cancer.

Also I've had two MRIs this month.  The first was January 4th, got the results on the tenth.  The report said it was possible that my brain was swelling to fill the cavity left over from the resection, or else possibly a recurrence.  So far I still feel OK, I'm tired at times, but today I've already done a mile on my treadmill.  The doc asked me if I were showing any symptoms (exhaustion, dizziness, weakness, etc) I told him no, so he ordered the other MRI (taken January 21st).  This time it was to be a "spectroscopic" MRI, a more detailed look into the area in question.  The MRI was no big deal, I even slept through most of it.  I should have the results next Thursday, but so far I feel OK, and in fact am getting stronger by the day.  When I was in his office I demonstrated my motor skills for the doc and a colleauge.  They said for a man who been through the wringer I appeared to be very fit and strong.  Anyway cross your fingers, wish me luck or whatever works for you.

Jon and our Victory, congratulations on your clean MRIs, let's keep 'em coming and keep confounding the docs!

RE: 27 months post diagnosis and a clean MRI

by KrysannTHEmum on Fri Jan 25, 2013 09:11 PM

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Hi Randy1958...from what I know and as one who has only had a few seizures, an aura is a feeling that your get before the onset of a seizure...it can be a feeling of deja vous...or your body may feel like it's floating, tingling, flashes of light before you, etc...everyone experiences different things, in some seizures an "aura" is all you get...in other seizures like Grand mals...it comes before the big seizure...it's just a funny feeling...that's what I've been getting...I mainly have a "floating feeling"....

Glad to hear that you are still remaining active and are able to keep this up...I haven't used my treadmill in a while just due to feeling "off" with the seizures and feeling like I may have a seizure...kinda scared to get on I guess. I hope to get back at it soon as well...I usually use kettlebells but they are out for me too right now too, I'm scared I'd drop it on my foot!! I can identify with your "no big deal" approach to MRI"S...we get used to them!!I actually enjoy getting MRI's...I sleep through them and as long as I have a warm blanket, I find them relaxing...lol! Good luck with  your results...hope only good news comes to you!! Take care!!

Krys

RE: 27 months post diagnosis and a clean MRI

by Randy1958 on Fri Jan 25, 2013 09:56 PM

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On Jan 25, 2013 9:11 PM KrysannTHEmum wrote:

Hi Randy1958...from what I know and as one who has only had a few seizures, an aura is a feeling that your get before the onset of a seizure...it can be a feeling of deja vous...or your body may feel like it's floating, tingling, flashes of light before you, etc...everyone experiences different things, in some seizures an "aura" is all you get...in other seizures like Grand mals...it comes before the big seizure...it's just a funny feeling...that's what I've been getting...I mainly have a "floating feeling"....

Glad to hear that you are still remaining active and are able to keep this up...I haven't used my treadmill in a while just due to feeling "off" with the seizures and feeling like I may have a seizure...kinda scared to get on I guess. I hope to get back at it soon as well...I usually use kettlebells but they are out for me too right now too, I'm scared I'd drop it on my foot!! I can identify with your "no big deal" approach to MRI"S...we get used to them!!I actually enjoy getting MRI's...I sleep through them and as long as I have a warm blanket, I find them relaxing...lol! Good luck with  your results...hope only good news comes to you!! Take care!!

Krys

Hi Krys,

Nevr had a grand mal; in fact, the only activity I've had that can even remotely be called a "seizure" was nearly four months ago, when I was still deep in Temodar (400 mg per day for five days).  Basically I slept/ passed out / delirious / take your pick, scared the hell out of my wife, but whateverthehellitwas, it passed on its own, no recurrence.  We told four docs at three different places (well, three docs, the first doc we saw is just a general practioner, basically a pill pusher); we mentioned it to the docs at Loma Linda, I also mentioned the kind of day I'd had up until then (busy as hell and then some, you had to be there, be glad you weren't), and he said a seizure was a possibility, but he took into consideration my case history (even before diagnosis, no seizures of any kind, which confounded the docs, because everyone they'd diagnosed with a tumor had a warning seizure . . . except me), that I had gone nearly 8 months without a seizure, so he said I probably just over did it that day.  The docs in Riverside were in concurrence, but recommended I see a neuorologist, who put me on Keppra, 2000 mg a day, to prevent seizures.  He said I'd probably be on it "indefinitely".  Whatever.

If you have someone at home (I'm usually alone in the day), go ahead and try out your treadmill.  Just start it out at a low speed, and if there are handgrips (mind has them), use them.  I use mine because if the power goes out the TM stops and I don't feel like being thrown into the control panel.  It might improve my looks. 

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