All Blog Posts (206)

Hello everyone new to this site

Hi, my name is Kelly and I'm 4 months post op from 10 hr brain surgery to try and debulk part of my Meningioma.  They were able to remove some of the bottom half but had to leave a "carpet" due to it being attached to the 4th cranial nerve.  There is also a portion of the tumour that is inoperable.  I speak to a radiation oncologist on tues in regards to dealing with that.  I suffer from double vision because of damage to the nerve, I can't drive and am having a hard time with feeling like…

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Added by Kelly Marshall on May 23, 2013 at 7:44pm — 1 Comment

Ganglioglioma

I am a 37 year mother of two who suffered with headaches for years. Last year on April 20, 2012 I was sent for a brain MRI where they discovered a golf ball size tumor in my left temporal lobe. Literally three weeks before I went for the MRI was when my headaches changed to a localized pain on the top of my head that only felt relief when applying pressure to the top of my head. The tumor was pushing on the midline of my brain and they doctors were amazed I was not having seizures. Following…

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Added by Kelly Lee on May 2, 2013 at 7:37pm — No Comments

New survivor

I just found this site for benign brain tumors. I had a meningioma removed in January, 2013.  I am now back at work after a pretty uneventful recovery.  I did have some issues in the ICU with hallucinations and such.  But my memory is still pretty good, my sense of smell returned, and I have even lost weight.

My tumor was found after I fell while visiting family.  I was a little tipsy after some wine, and fell off the bed. I ended up with a very swollen head, and 2 black eyes.…

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Added by Norma Trent on April 28, 2013 at 11:31am — No Comments

Hi everyone!  I'm also new here.  I just wanted to know if anyone noticed any changes going on with memory, moods, balance and family members since the removal of their tumor. It will be two years i…

Hi everyone!  I'm also new here.  I just wanted to know if anyone noticed any changes going on with memory, moods, balance and family members since the removal of their tumor.

It will be two years in August that I had a menigioma tumor removed.  They didn't remove all of it because it was attached to my sinuses and damage could of occurred.  I did, however, have an MRI done recently and they said that it looks like its shrinking.

I'm having problems with…

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Added by Susan Sonnenberg on April 20, 2013 at 11:20am — 1 Comment

Headache, some dizziness..etc...

As I am new to this, I am not sure exactly what to post so I will just simply give my story...

August of 2011 I had an MRI because I was having vision problems.  I was driving and I started seeing things as if I were looking through a fish bowl.  All watery/wavy.  And was experiencing dizziness as well as a headache.  I thought it was a migraine of sorts.  I guess NOT

Well..because I got no results after numerous calls to my MD.  I went in for a regular check up just before…

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Added by Lisa on April 20, 2013 at 9:11am — 2 Comments

Ah well.

I had my last MRI on valentine's day, (I love MRI's! No joke, they're a breeze!) to see if radiation shrunk it at all.



My NS said it didn't. I'll most likely have this "squatter" for the rest of my life, and it'll probably just keep regrowing reeeeaaally slowly. I might have another surgery later in life, or more radiation or chemo. It could be worse, but I was really hoping it'd leave.



I had to leave my last year of high school, and I have to learn to drive again before I… Continue

Added by Hanna Leigh on February 16, 2013 at 10:53pm — 4 Comments

Benign to Malignant

I guess I have graduated from this website.  Andrew's tumor is now officially malignant.  He has few options.  One is temozolmide to prolong his life but not to cure.  We have had a shock for sure but are ok at the moment.  He have been fighting a good fight for 16 years.  My husband is an amazing man.

Added by Betsy Macdonald on February 12, 2013 at 2:30am — 6 Comments

What it's like to have a grand mal (tonic clonic) seizure

I wrote this account one week after having a grand mal seizure, and two weeks before having brain surgery to remove the tumor that caused it. The seizure began in my frontal lobe, then generalised and became a tonic-clonic seizure, according to my neurosurgeon. At the time I was still having seizures every few days, and just the act of writing about the first seizure in such detail almost brought on another one. I initially planned to keep this account private, but after two months, I’ve…

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Added by Jess Hill on February 8, 2013 at 3:00pm — 3 Comments

MEMORY and WHO WE ARE

Memory has been an interesting issue for me following a temporal lobectomy hat laso removed most of my right hippocampus to remove a tumor.  David Levintin wrote a reamable piece about a friend with a tumor ond the relationship of memory tosense of self.  Here's an interview with him ....

 

The Self That's Left When Memories Fade

January 24, 2013 ... Read Daniel Levitin's Atlantic piece "Amnesia and the Self That Remains When Memory Is Lost.". Our memories and experiences…

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Added by Susan Goodwin on January 26, 2013 at 12:16pm — 3 Comments

Attention All Keppra Users

I am a Registered Nurse and tumor survivor. I have noticed that quite a few of you have mentioned you are taking only Keppra for seizures, as I am. But I feel I should let you know that Keppra is intended as an adjunctive therapy, meaning it should be used along with another anti-seizure medication. Alone it is not as effective as a treatment for seizures. If you are taking Keppra only and your seizures are not controlled consider discussing this with your… Continue

Added by Shelby Melton RNS on January 7, 2013 at 5:24pm — 8 Comments

Please Help!

My 15 year old son was diag.with a ganglioglioma Grade 1 and had it resected 1 1/2 months ago. There's not much information that I can discover about long term survival, or insight from people that have had this tumor. Can someone please share with me an experience that is positive ? I just need piece of mind!

Thank you in advance...

I'm obsessing about it.

Mark

Added by MarkSears on January 2, 2013 at 7:31pm — 4 Comments

Is dizziness normal?

I wanted to ask members of this site if they've ever suffered/are suffering from dizziness AFTER surgery?

After my surgery, I get very dizzy looking up or just moving my head too fast...and I can't lie on my back(this might be my fault though, the back thing, I just don't want to try after it hurt the first few times).

I'm not sure if it's because it's too soon after surgery-? It was June 25th, is it still soon? Or is it because it was on my brain stem near my cerebellum (where…

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Added by Hanna Leigh on December 23, 2012 at 9:11pm — 4 Comments

Tears.....

I think I am emotionally tough, and can accept the challenges of life. I had a milestone this week that I will explain later in this entry. When my life became topsy turvy August 12, 2011, I had no time to absorb what was happening. I didn't cry when I awoke with a seizure, slurred speech, and my right side numb. I didn't cry in my first ambulance ride with the lights blinking, I didn't cry when I was told my brain was bleeding out or the transfer to Jefferson Hospital. I didn't cry when I…

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Added by Ann Manzi on December 14, 2012 at 8:29pm — 7 Comments

Anger Management

Does anyone else suffer from bouts of hostility since their surgery? I have a real difficult battle with anger and depression. It feels almost uncontrollable at times. Not in a "I'm going to murder you" way, but in a "get out of my face" way. I hate it. It's difficult. It makes me feel terrible and causes me so much anxiety. And it becomes a vicious cycle because the anxiety causes more feelings of hostility. I feel almost like I have PTSD. Any others out there need good punching bag? ;)

Added by Shelby Melton RNS on December 14, 2012 at 9:46am — 11 Comments

Myh son has an epidermoid cyst. Again.

Greetings! Happy Thanksgiving to everyone!

  I am new here.  My 25 y/o son had two surgeries in July to remove an epidermoid cyst/tumor.  Not fun. Doctors said they "got it all."  I just found out he now has another tumor close to the original, but is a "new one."  He is planning surgery Dec. 21st.  I want him to WAIT.

 

 Is there anyone out there who has experienced an epidermoid tumor?  Thank you.

 

Carol

Added by Carol Phillips on November 19, 2012 at 12:08am — 2 Comments

First time poster

Hi, my name is Liz and I am a recent survivor of a horrible ordeal. I had a seizure in late May, which led to a brain biopsy and diagnosis of Grade 3 astrocytoma. I went to Sloane Kettering for a second opinion. I ended up having a craniotomy to debulk the tumor and new pathology. Because of the new pathology, I was rediagnosed with a benign Oligodendroglioma with no further treatment necessary.



I had a fairly easy time recouping from the surgery (July10th). I am not driving yet… Continue

Added by Liz Gallagher on November 8, 2012 at 9:52pm — 4 Comments

Great MRI but having right side weakness

Hello all. I haven't written in a while and no news is certainly good news. Andrew had a scan in August and the tumor has not grown and may even have shrunk a bit. That was great news but he has had right side weakness that has gotten gradually worse since May. Now, Andrew is at the point where he has trouble walking and has a knee and ankle brace for support and cannot write or do much at all with his right hand and arm. We are really confused about this and don't know for sure the cause since… Continue

Added by Betsy Macdonald on October 27, 2012 at 8:31pm — No Comments

So many stories I could write!

There are so many stories I could write. What a journey this has been and now continues for me. I read just a small amount of stories on here and can relate to some. My story of course is my own. I own it and I hate it. I lost my husband to this tumor. I lost the  hearing in my left ear. Woke up and it was a whole new way of hearing the world around me. I hated listening to music which I had always loved. My voice has changed and made my children cry. They wanted their old Mom back. My laugh…

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Added by Nancy Marie Harkins on October 5, 2012 at 1:10pm — 1 Comment

My tumor is back!

I hate the fact that this tumor is now growing back. I had a resection done and stereotactic radiation treatments. It is now 15 yrs later and it is growing again. I have been told that it is too risky for another operation and no more radiation. I have lots of symptoms and have already begun the self doubt that I had years ago. I am very angry, trying so hard to get a grip on it but it just isn't working.

Added by Nancy Marie Harkins on October 3, 2012 at 1:05pm — 6 Comments

Natural Substance can help reduce tumor size?

Hi everyone,

As some of you know, I have had a miraculous recovery from a brain tumor. Although I know it was essentially God's work, I have also been a patient of natural medicine/homeopathic since news of the tumor growth four years ago. So on that note, I wanted to share an interesting article I came across which mentions Turmeric as an anti-cancer agent (it is also said across other articles that it's basically an anti-inflammatory and very helpful with stomach and overall health…

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Added by Marisa Bairros on September 28, 2012 at 10:31am — No Comments

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