GBS and Brain Tumors?
AnonymousJuly 19, 2010 at 12:34 am
Hello Old Friends:
Although I have been absent from the message boards for several years all of you have never been far from my heart.
My daughter was dx when she was 3 with GBS Miller Fisher Variant. She recovered with some residual effects. When she was 12 she was dx with H Pylori bacteria and then at 16 she came down with mono. Needless to say this poor child has had her challenges and through it all she fought with such a positive attitude to get over every health challenge. She graduated HS with honors and was on the dean’s list. She is currently in her second year of college and again has maintained straight “A”‘s, dean’s list and her school wants to help her obtain some of the prestigious scholarships.
She is now in for the challenge of her lifetime as she was dx last year with 2 brain tumors, one in the pituitary gland and the second in the back of her brain. The pituitary tumor has begun to grow and she will have surgery next month. Has anyone else suffered further neurological problems or similar issues to my daughter and experienced brain tumors?
AnonymousJuly 19, 2010 at 10:36 am
Welcome back to the forums. I will keep MiracleBaby in my prayers. I sent you a private message.
I too don’t come here often since Frank’s passing away. In the last 5 years I haven’t kept up with any medical news or breakthoughs, so I don’t feel qualified to answer many questions anymore.
I do think of everyone here all the time and I keep praying for a cure.[/B]
AnonymousJuly 20, 2010 at 12:58 pm
Dear Brandy and Jessica:
Thank you for your support and kind words, it helps immensly. As a divorced mom who has always been my daughter’s primary parent it helps to have this forum, friends and support as often times we feel cut off from the world and have no one to speak to.
I will keep you posted as to her status.
AnonymousSeptember 1, 2010 at 8:53 pm
Well we are 2 weeks away from the removal of 1 of the brain tumors that she is suffering from. They will go through her nose and drill a hole giving the Neurosurgeon access, he will then remove as much of the tumor as possible but because we found out it is sitting on her carotid arteries and her optic nerves he will not be able to remove it all, she then will need to return for the gamma knife radiation. Her surgery is scheduled for September 14th and she begins school on September 23.
Natalie is bound and determined to begin school on time, which I pray to God she is able to do as it will occupy her mind. However, if she is not able to; the school has a wonderful program through the disabled student association where note takers can sit in her class on her behalf and take all of the notes, etc. needed. She is also going to email her professors.
Right now I am having such a hard time emotionally dealing with this. I am unsure that I have what it takes to go through any more of this heartache with her. I know that I will find it if I need to, but this is so hard to watch your child go through all of this pain and suffering. I wish that it was me and not her. 😡 😡
AnonymousDecember 7, 2010 at 3:18 pm
Natalie’s surgery became a very difficult procedure and was much more involved than we were told it was to be. The tumor in the pituitary gland was sitting directly on her optic nerves and on her corotoid arteries. Consequently they could only remove the inside of the tumor. What should have been a 2 hr procedure turned into 6 agonizing hours. Of course I was constantly worried about the possibility of her GBS returning after undergoing such an invasive, intense procedure.
After a six day stay in the hospital, we finally were able to go home. She had to undergo Gamma Knife radiation and that made her feel extremely tired.
She started UC Irvine on time and has since become eligible for 2 additional scholarships and has received her schools endorsement to be nominated for Glamour magazine’s top 10 college women of the US. She is a teacher’s aid for high school students, received a grant to be a research assistant and is interning for an extremely famous photographer in Hollywood. Oh and has also added a second major. Her desire in life is to help children who have undergone emotionally difficult situations through Psychology and art.
Of course, her eyesite is still effected (brain tumor and MFS) so I get to drive her from Irvine to Hollywood and back again 2 x’s per week, but am happy to as we get that time in the car, just the two of us to talk. I am so incredibly proud of her accomplishments and look forward to all of her successes.
Thanks for everything and all of your good wishes.
AnonymousJanuary 19, 2011 at 9:20 am
Cathy, Sorry to hear the troubles Natalie is having, maybe I can be of help. I have CIDP which is the chronic form of the acute form GBS. Several years ago I also had a brain tumor on my optic nerve. It was called a menigeoma. I was on the table for 5-1/2 hours on Wednesday so surgeons could place a PVA capsule in the local blood vessel/s to reduce bleeding and so the operating surgeons could observe the tumor under a fluoroscope. On Thursday I was on the table for 10-1/2 hours. A “tunnel” was made through my sinuses and the entire tumor was removed successfully by 2 surgeons using scalpels – which I still find amazing. Next week I get my yearly MRI to make sure the tumor has not returned.
Cathy, the medical folks can do miracles today. The Gamma knife has given many patients a second chance. However, there exists yet another device called a linear accelerator or LINAC. At this writing there are only 5 in the USA that I am aware of. One is currently being installed in North Carolina. Here is a blurb taken from the Jefferson Hospital LINAC website :
“Linear accelerator (LINAC) machines have been proven to be a
safe, effective treatment option for patients with inoperable brain
tumors in dangerous locations, such as the optic nerve and brain stem”
You may want to do research on this to find the nearest one to you. This may be helpful if Natalie’s tumor returns (and hopefully it doesn’t). It may also be helpful for you to know, I shared a lab with 5 others for a total of 6 and 3 of us developed brain tumors (as did several others in the same building). These numbers give me a different perspective and viewpoints to draw on. I was speaking to an ex co-worker who told me he his tumor had started to grow again and he is going to Jefferson (Phila. PA) and getting LINAC treatments. He choose this option over the gamma knife for good reasons. I too may one day need to utilize the LINAC, hopefully not.
I pray, I gave you another option and did not scare you. With the exception of one person most of my co-workers and myself have enjoyed productive lives after the tumor removal. I looked at it as just one more speed bump of life.
AnonymousFebruary 25, 2011 at 10:30 pm
Thank you so very much for the information and I will definitely look into the LINAC procedure. Natalie’s Endocrinologist is afraid the tumor is growing rather than shrinking as she is continuing to have headaches and feels sick to her stomach all of the time. Your ordeal sounds horrible, how were you able to cope with such intense surgery? I must commend your strength, you are a true inspiration.
She has developed Acromegaly now as her growth hormones are too high, they want her to start on Sandostatin for the next year to try to lower her growth hormones. My concern is that it is a chemo drug and she is so young I pray that it does not bring with it the normal problems that chemo drugs cause.
That was a whole other ordeal as the Sandostatin costs $5,000 per month, her father dropped her from his health insurance and refuses to add her back. We had to petition the drug company to provide it to her for free, which they finally approved her for the once a month dosage. Thankfully!
Thank you for the information and I will research the closest available machine to us, I am hopeful it is in the area she goes to school as they are supposed to be #1 in the US for new and advanced therapies.
February 26, 2011 at 10:11 am
Could you please check your private messages:)
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