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Discussion in 'The Mainboard' started by dblplay1212, Mar 19, 2019.
Best of luck man, hope today goes well.
EEG was great, seizure doc is upping her meds to go with her weight change. He isn't happy with the pathogen report saying he wants a second opinion so they at sending it out to do a much more thorough one but it will take awhile to get the results. Labs in Sept and MRI in Oct
Sorry if this has been answered but why is there a month between each test?
Feels incredibly weird bumping this thread after the chaos of the sterling thread. We are waiting for the results of new pathogen report, he has her blood work next month then MRI in Oct. They think instead of the mass causing the seizures it was the opposite that the seizures caused the mass. We shall see any way we all need something to smile so here.
Definitely need some good vibes I got an MRI on my neck after it was giving me fits for 2 weeks, and turns out I have a bulging disc that is pressing against a nerve, so I have out patient surgery on the 12th. My soon to be fiancee has her colonoscopy on the 4th hoping to find out why she has her fainting spells/ incredibly low iron levels.
Saw the bump and immediately hoped this thread wasn't Sterling'd
Yeah that thread is fucking wild
That baby girl is cute as hell
Thank you and she knows it too.
Whose baby is it really?
I had 3 bulging discs in my neck and 1 herniated. Get the surgery before that happens because believe you me no one is ready for that kind of pain.
Yeah both my mom and dad have had this surgery. Tuesday because of the storm I had a bad migraine plus the pain from the disc and it was affecting my ability to do my job, so surgery was a no brained.
Got started on Halloween this year. Surgery was a success they are glad they didn't wait they said the disk was much worse than they expected.
Going on 3 months seizure free
Saving up now but yeah my 24 year old gf can't wait
All seriousness, congrats.
Thanks can't wait hopefully by the end of the year though this surgery is small set back.
You should be able to do it sooner than later after that doctor apologized and gave you $14,000...
5 months seizure free today
That's awesome to hear man
Hell yeah! Great stuff
Her 2nd opinion pathogen report came back. She has an MRI in Oct to make sure they got everything.
Ganglioglioma is low-grade tumor of mixed cell type. It is a type of brain tumor that contains properties of both glial cells (responsible for providing the structural support of the central nervous system) and neuronal cells (the functioning component of the central nervous system). It is very rare.
Ganglioglioma occurs most commonly in the cerebrum (the part of the brain that controls motor, sensory and higher mental function), but may occur in any part of the brain and spinal cord.
In rare cases, ganglioglioma may undergo transformation into a higher grade, more malignant tumor.
She had her MRI on Tuesday because of poor scheduling and work we won't get to meet with her seizure dr or neurosurgeon until Monday to discuss the results. The Last few nights have been scary no seizures, but she has been waking up out of a dead sleep screaming and crying in what sounds like pain while pulling her hair near her scar. Praying beyond words that this MRI is clear.
Will be thinking of her and you all. Keep us posted.
Praying for you man, I hope you get an all clear.
Well, we have a big decision to make. The MRI showed there is small amount of the tumor left. We can either have them go in and remove the rest using the same way they did it in March, or since this is usually a very slow growing tumor we could play the wait and see with scans every 6 months, but the neurosurgeon said it could be years before anything changed, but it could bring back her seizures. We are going to meet with the brain tumor specialist hopefully next week.
They said they confirm in benign which is a relief.
Praying for your little girl, BR
Seizure free streak ended today, she is throwing up so that is probably why, but her face turned white and lips turned blue.
Roo being Skye for Halloween we have her appt with the pedatric hematology/oncology clinic on Wed.
Today is the day, sadly I'll be at work, but momma and nana are ready to get as many of the as the specialists can give us answers hopefully I'll have a good or detailed update on what we are dealing with later tonight.
Just still a small tumor and they will do a follow up in mri in Jan then every 6 months. No surgery right now they said this rarely grows, so just keep on her meds and if she starts getting seizures again then use that as a big red flag.
Roo wishes y'all a Merry Christmas and is 9 months seizure free.
Today marks the anniversary of when we started noticing something was possibly wrong with Roo. What a year and what a test for first time parents, but with amazing support from family and friends we got through it, and I can't thank y'all enough for all the love , support, and prayers. Merry Christmas ya filthy animals
Congrats BlazingRebel that’s fucking cool
Happy New Year gents from my family to y'all's
She has her next MRI on Jan 29th. She is in the 98th percentile in height.
This week needs to hurry the fuck up and be over. We have little ones MRI on Wed to see if the tumor has grown, and if everything is the same we won't have to worry about it for another 6 months plus. I'm getting my arm that I broke re-xrayed because it has been killing me on Friday as well as the anniversary date of that stupid fucking morning is on Friday as well. I'm going to see my primary tomorrow to up my anxiety meds as well as maybe get something else. Anyway rant over glad im only working 4 days this week because my mind is a fucking mess.
God fucking damn this week every god damn year. If my pharmacy manager wasn't so considerate and knew what I was going through I would have probably been fired or put on leave. I almost walked out because i was such a head fuck.
haha! wtup bro ?
how is the wife and the job ?
oh that's right hes working !
one for my guy and stevie !
Beyond happy to report no change since the last MRI, next MRI will be in 6 months. will update more on my lunch break
Next step is seizure dr in February where we can possibly start weaning her off her meds.
I was afraid clicking on this thread because i knew you had a follow up this week. so glad to hear you had a good visit.