It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere

Lynne Miller Female Milbank, SD United States: Share on Facebook Share on Facebook Share Twitter

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Pseudomeningocele
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Started this discussion. Last reply by Lynne Miller Oct 4, 2009.

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Profile Information

Who are you?: Survivor

What type of tumor do/did you have?: In 2008 was diagnosed with an Epidermoid Brain tumor located in the posterior fossa. My surgery WAS A SUCCESS at Mayo Rochester on 08/04/09.

What kind of info do you want from this site?: One day at a time...

What state or country are you located in?: Others with similar experiences.

How did you find itsjustbenign.org? Please be as specific as possible.: South Dakota

Latest Activity

Lynne Miller replied to Becky's discussion Tingling Sensation

"Hi Becky, I have this happen to the whole top of my head too. It is sometimes so strong it feels like there is a TENS unit attached to my skull. I also have the right side of my face fall asleep and sometimes just from my nose to my chin. I had my…"

May 10, 2010

Lil Kozussek left a comment for Lynne Miller

"Lynne, I had fluid fluctuation in my head for months after surgery... But then all at once (within about a week and for no apparent reason) about 5 months post surgery, the fluid buildup started to decrease rapidly. I don't know what happened…"

Nov 30, 2009

Beth Rosenthal left a comment for Lynne Miller

"Hi Lynne. You are truly brave for showing your stitches. I just put mine up. Our experiences seem more real, once you can see them. For me, anyway. Just want to say that you're an inspiration. I hope that you enjoyed Thanksgiving."

Nov 29, 2009

Lynne Miller updated their profile

Nov 25, 2009

Lynne Miller's Blog

I am back in the hospital

I am back in the Hospital St Mary's at Mayo Clinic. I sprang a leak through my incision on Wednesday night, so first thing Thursday morning we headed back to Rochester and I was admitted. My head was restitched and a lumbar shunt or stint was insterted. From then the nurses have been draining 10 ml every 2 hours and planning on clamping it shut tomorrow morning to test me for 24 hours. I got a second leak before this could happen though. The doc was called in to stitch the rest of my neck this… Continue

Posted on August 23, 2009 at 9:09pm — 8 Comments

I look 12 in my pigtails!!

We checked in at Mayo at 7:30 Tuesday morning, and then waited until 12:30 for them to take me into pre-op to get me ready. I remember waking up and seeing that it was 10 pm. The nurse told me I was in ICU for 24 hours and that everything went well. I was woken up hourly during that stay and remember one time complaining about a loud noise. It was the CSF relocating - it may sound like the heart beat- but I didn't like it so I went back to sleep. No numbness or tingling in my arms,hands, face,… Continue

Posted on August 9, 2009 at 9:30am — 3 Comments

as ready as I am going to be

I spent the weekend with family, cleaned house, had those hard to approach conversations with my husband (Dennis). What are my wishes if...? What if...? I had to explain to my daughter not to be afraid if I don't recognize her when I first wake up...this is only because I had that experience when my own mom didn't know who I was when lung cancer spread to her brain...I was 27 then and terribly traumatized by that. I hid most of my symptoms from my dad and siblings because of the pain we all… Continue

Posted on August 2, 2009 at 11:00pm — 1 Comment

Where and how much of my head will they shave?

The location of my tumor is in the 4th ventrical between brain stem pressing into the cerebellum. If anyone had a tumor removed in a similar location, where did they shave and how big of an area?

Posted on July 28, 2009 at 8:43pm — 10 Comments

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At 8:07pm on November 30, 2009, Lil Kozussek said…: Lynne, I had fluid fluctuation in my head for months after surgery... But then all at once (within about a week and for no apparent reason) about 5 months post surgery, the fluid buildup started to decrease rapidly. I don't know what happened but I'm wishing that for you. I too was shocked at my memory loss... and I have to say that if one more person tells me that they feel the same way too, I will have to hurt them. This memory loss was not a gradual thing for me... it was as though I had aged 10 years in one month. I have no problem believing that this state of mind would have been normal for me at some point in the future but I used to pride myself in catching errors and spelling things correctly and carrying on a conversation without losing my thoughts and words in the middle of a story. Now at times its embarassing.
Things will get better for you. You are still recovering... even if people have forgotten. The surgery you had was not just an apendectomy... They were in your brain!
How many followup MRI's have you had?
Take care and let me know how its going....

At 4:04pm on November 29, 2009, Beth Rosenthal said…: Hi Lynne. You are truly brave for showing your stitches. I just put mine up. Our experiences seem more real, once you can see them. For me, anyway. Just want to say that you're an inspiration. I hope that you enjoyed Thanksgiving.

At 10:01pm on November 18, 2009, Lil Kozussek said…: Hi Lynne,
How's the fluid issue? And are your headaches getting any better? I'm 8 months post surgery now and I must say that things are getting closer to what I think used to be normal. No more fluid and no more headaches but it took this long. Now I only have to work on my neck muscles.

At 7:39pm on September 21, 2009, Tracey Burton said…: just chcking on you :) how are you doing these days? are you feeling any better?

At 10:18am on September 17, 2009, Lil Kozussek said…: Gosh! How long has it been since your first surgery? (Sorry for not keeping track but I find that I get so gobbled up in this website that I just can't find my way around easily ... its like I have to research people before I know what to ask). I'm 6 months post op and just last week got a terrible headache for the first time in about 2 months.... I am pretty sure it was related to fluid but I don't have a shunt. I find that lying down is hard when my head hurts... but when I elevate it on about 4 or 5 pillows, it seems better. The nausea and dizziness is totally related to pressure I think and it gets better.... but sometimes slowly. And this might sound really stupid but I think that my cup of coffee really helps with pressure. What other complications are you experiencing?

At 9:51am on September 17, 2009, Lil Kozussek said…: Lynne, what is going on with the CSF leak? Where is it leaking... at the incision site?

At 10:21am on August 15, 2009, Tracey Burton said…: no its not sad.. its reality- i will be talking and laughing one minute then just but out crying.. then be joking around again.. i consider myself a fruit cake lol... im so glad your healing fast.. im back in school for nursing and i think its a horrible idea for me to do that because of other peoples problems that i have to deal with.. but what i usually do is remember that there is so many good things going on with brain tumor medicines and surgery ... im in the same boat as you.. but we are strong woman .. and strong woman survive

At 9:25pm on August 14, 2009, Tracey Burton said…: just checking on yah... how did your appointment go?

At 1:27pm on August 4, 2009, Anna-Stina Takala said…: I wish you good luck!

At 10:25pm on August 3, 2009, Lynne Miller said…: Well...I am in Rochester!! Had my pre-op evaluation and my scheduled report time is 7:30 am. My surgeon is Dr. Lanzino.