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Not Lyme Disease, Brain Tumor

post #1 of 40
Thread Starter 
Hi All,
Some awesome TCSers helped me out a few weeks ago with some info on tick-borne diseases, But, it is my utmost displeasure to report the horrible downgrade in my sisters condition.

Over the weekend she had intense seizures and was sent to the neurological hospital at UNC (about 15 min from here). She was admitted but continued to have seizures--she was scheduled for an MRI but since it was the 4th all the technicians were off and she couldnt have one--how crappy is that? So at 5am Tuesday her seizures started going off the chart. Scared she would slip into a coma, the neurosurgeons performed surgery--unplanned and unprepared--and removed 75% of a brain tumor, approx 2cmx2cmx3cm, the size of a medium thumb.

She is in recovery but 36 hours later is not conscious, not breathing on her own (there is a breathing tube) and unable to move her left side. The doc said there is still significiant swelling in her brain. Pre-op swelling was 2cm and now its only 1.3cm--not much decrease. so her brain is swelling down into her brain stem, which increases the chance of permanent brain damage.

I do not know why I am telling y'all this, but I feel this is so much bigger than anything I am prepared to handle. Any advice and good vibes are greatly appreciated.

Thank you!
post #2 of 40

One can never prepare for this type of situation. Just hang in there, and take it a day at a time. If one day at a time is to overwhelming, deal with it hour by hour. Modern medicine is truly a marvel. I will hope for the best for your sister and your family~
post #3 of 40
I am so truly sorry! I hope she makes a FULL recovery!
post #4 of 40
Oh Hannah I am praying for your sister and your family right now! Each day will be a trial for a while but I believe your sister is on her way to recovery. and many prayers coming your way from my crew.
post #5 of 40
sending a prayer
post #6 of 40
Thread Starter 
Thanks MA, Heidi and Erica.
It aint easy, but my cats and TCS are the most supportive and non-demanding things in life right now--so all thanks to them and you all!
post #7 of 40
wow, i dont know what to say. but i hope she make a full and speedy recovery. God bless you all
post #8 of 40
Hannah...I have a Granddaughter who will be having brain surgery soon. I understand what you are going through. I will add your family to my prayers.
post #9 of 40
Sending thoughts of strength and healing...Hissy has it right...just take it one day at a time.
post #10 of 40
I will be holding you and your family very close in my thoughts and in my heart.

Sending healing light and hugs,

post #11 of 40
I can only say that I feel for you and hope you get better news soon. What a terrible thing to happen.
post #12 of 40
Soo very sorry to hear what you, your sister and your entire family are dealing with. Your sister is in my thoughts and prayers.
post #13 of 40
Will be keeping your sister in my thoughts...
post #14 of 40
oh no! I personally know that the UNC hospitals are wonderful, my son had surgery there and they were so wonderful! So I know she is in good hands.

She is in my thoughts, as are you.
post #15 of 40
sweetie, I'm so sorry to hear this news. You're all in my thoughts and prayers.
post #16 of 40
Sending a lot of hugs and healing vibes to you and your sister and family.

Ari says hi to your white kitties!
post #17 of 40
Hopefully she will come out of this okay. I agree that UNC hospitals are excellent.
post #18 of 40
I am very sorry to hear this
Sending lots and lots of healing vibes to your sister.
post #19 of 40
My heart goes out to you and your family. Your sister will be in my thoughts.
post #20 of 40
Many thoughts and prayers to you and your family.
post #21 of 40
Prayers are sent for your sister.
post #22 of 40
Healing vibes are headed your sister's way. She is in my prayers.
post #23 of 40
Thread Starter 
Thanks everyone for your prayers and good wishes and thoughts. My sister has started breathing on her own again, and can nod and use both hands for squeezing. THANK GOD!!!!!!!!!!!!!!!! I know she will be different after this--I will be too. We still dont know what kind of tumor it is, but I feel so much better today knowing that is coming out of post-op recovery ok (even though it took an extra day from what the docs thought it would be).

Hurrah! Thanks everyone. I will continue to keep you updated.
post #24 of 40
Dear Hanna, nobody are prepared to a bad new like this....... you has my thougths and your Sis, has all my prayers tonight....
Sinceresly ...Rigel...
post #25 of 40
Thanks for the update Hannah. Hang in there girl...you have lots of people praying for your sister on TCS.
post #26 of 40
My thoughts and prayers are with you and your family.
post #27 of 40
When I was in nursing school, I observed a brain surgery. They were putting a shunt in, which is a tube to allow fluid to drain off the brain to ease the swelling. I thought it was a sign that person would never recover. Imagine my surprise when the anesthesiologist said that he had a shunt in his brain!

Initially I did not believe him, but he had me feel, and I could feel the tube. He went to school and achieved his goals AFTER his brain surgeries!

I do not remember what he was diagnosed with, but please know that people do recover from very serious brain surgeries!

A good source of information about brain tumors is the American Brain Tumor Association. http://hope.abta.org/site/PageServer

You will need lots of info from the doctors to know what type of tumor, etc, as many of them are very treatable.

Best of luck to your sister and your family. Prayers for a full recovery!
post #28 of 40
Originally Posted by hissy

One can never prepare for this type of situation. Just hang in there, and take it a day at a time. If one day at a time is to overwhelming, deal with it hour by hour. Modern medicine is truly a marvel. I will hope for the best for your sister and your family~

Hannah, this was so perfectly put. I am at a loss for words. I want everything to get better for you.
post #29 of 40

I'm just reading this....your update is wonderful news!!!!! I will still say a prayer for all of you and keep you in my thoughts. She sounds like a fighter!
post #30 of 40
Thread Starter 
Here's the latest . . .
Sarah stopped breathing on her own last Thursday and they had to reinsert the breathing tube, and she stopped responding or squeezing hands at all. They did an MRI (can you believe that they didnt have a good one? When she was admitted on July 4 most of the MRI techs were "off" and the ones there were only doing "emergency" MRIs. How was her case NOT an emergency? She was about to go into a coma!), they found that the tumor was much, much bigger than they thought. Previously they thought they had removed 75% of it. After they got the MRI back they found they had only removed 25% and the remaining tumor was extremely enraged and causing massive swelling in her brain still.

The Chief of Neurosurgery did a second emergency surgery Saturday morning. He is extremely angry that the hospital acted as slowly as it did and told us Sarah is his #1 priority right now. He told us post-op that when he opened the skull her brain swelled right out, rendering the MRI "map" unreadable and thus he had to do the surgery by sight, but he removed as much tumor as he could--about 7 cm x 5cm x5cm.

She is recovering much better now. She can open her eyes, though she can't see (the docs think this is a temporary situation and will solve itself when the swelling goes down). She is breathing on her own now, and has stepped down from ICU to CCU--all the things that should have happened last week. I brought in a little stuffed chick that chirps when you squeeze it and she can move her head and shoulders and kind of dance. And most of all--Im gonna cry--she can outline the shape of a heart when I tell her I love her.

Im so angry that the hospital didnt do an MRI right away--it would have saved an entire week of brain swelling and nail-biting. But Im so relieved that the Chief of Neurosurgery took a personal interest in her and made things happen.

Thank you everyone for your prayers and good wishes. It has made such a difference for me, knowing that so many wonderful people are rooting for her. Thank you thank you thank you!!!!!!! I get so tearful everytime I think about how good people really can be.

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