Hippocampus tumor

Hi @pattiboatwright,
There are several members I'd like to connect you with. Please meet @myminnie @jkenser and @heatherdeuel who have experience with tumors located in a temporal lobe. @tracyknabel's husband has a tumor that also encompasses the hippocampus. She understands the challenge "watch and wait" treatment and struggling with the sense of doing nothing, as do @ladycat and @eleanor1931seminara1931. Please also meet @dawn_giacabazi.

Long distance caregiving is never easy. This must be very difficult for the whole family. Is your son able to continue with work since the diagnosis?

Thank you for the referrals and the note.
Tyler had to stop working. He has applied for short-term disability and I hope that he is approved. Meanwhile we are supporting him as best we can. He has been seen by the top doctors at UCLA brain tumor Center and I understand that it is highly ranked among adult neurology. When we learned that it was in the hippocampus, that became a game changer. We have inquired about laser thermotherapy (LITT), they say the tumor is too large for radiation.

Hi @pattiboatwright,

While we wait for some insight from other members, I wanted to let you know about this neuroscience update, which details work done by researchers at Mayo Clinic in conjunction with colleagues at the University of California, San Francisco (UCSF): http://mayocl.in/2nQgOKe

I know that it must be so difficult for a parent to see their child go through this, so please feel free to ask us any questions...the Connect community is here to help.

@pattiboatwright
I had my follow up appointment with my neurosurgeon yesterday at the Mayo clinic in Rochester. He is one of 4 neurosurgeons in the world that specializes in temporal lobe surgery. I thought of you and your son while I was there and made it a point to ask him if he would be able to surgically remove a tumor that was entangled within the amygdala and hippocampus.. His exact words were "yes absolutely." I told him that you were told it was inoperable and he said that is because not a lot of people operate in that area but he does. He recommends you reach out to him for a consult. I can tell you first hand after just having my right temporal lobe removed 3 months ago by him, that he is absolutely amazing. I would highly recommend him to everyone that has a tumor in their temporal lobes. I too, was told my tumor was inoperable and now I am tumor free thanks to this fabulous neurosurgeon. His name is Dr. Terrance Burns and he is at the mayo clinic in Rochester. I hope this information helps you and your son. I am praying for you both. If you have any questions feel free to call me anytime. I private messaged you my number.

God bless you!!! I'll try to reach my son immediately! Will keep you updated!

Hi pattie. I didnt have a tumor in my temporal lobe, but in 2001 i had my right temporal lobe, hippocampus, and amygdala removed due to epilepsy. I have been seizure free and med free since. I have not experienced any bad side effects from the surgery. I also had my surgery at the mayo clinic in rochester performed by dr. W Richard Marsh. Any questions feel free to ask.

It's been a long time since I've visited this site. Update: Tyler's condition continues to deteriorate. We sent his medical records to Dr. Mitchel Berger at UCSF, Dr. Terry Burns at Mayo Clinic and both responded they thought they could get the tumor without damaging his memory. Tyler won't accept this. Also sent his latest MRI to Dr. Marcos Marcella in Phoenix and he said he didn't see anyway to take the tumor without also taking the hippocampus and causing much collaterial damage. It's all so confusing with conflicting reports!
Tyler refuses to be seen by any of us. His sibilings surprised him over Memorial Day and it was a diasaster. He screamed for 5 hours. His anti-seizure medicine (aptiom) is no longer working, he lost his insurance Oct. 31 (I did purchase the Cobra plan but will be limited on how long I can afford this) and he never answers his phone or texts anymore. I know his short term CA disability will end Jan. Maybe that will force him to come home when he has no money. Last we spoke he was going to try to work for free from home for his former employer to see if he could "handle" it without seizures. He stated that if he could, he would return to work. He has refused to apply for SS disability.

Hi there, you have been given wonderful information on this site but I haven't heard much on your son's level of comfort. I suffered an extreme traumatic brain injury 7 years ago, I have and do experience symptoms similar to your son's and I am a nurse. Please be advocate for your son and his level of comfort. What has worked well for me is medical marijuana. There is a very wide range of flowers that manage pain, and do not affect me mentally. This treatment option had also proven effective in managing seizure activity. Best of luck!

Thank you for your concern and reply. I am sorry for your difficulties. Tyler says he has a constant headache and his seizures are multiple times each day. For pain he says that he take hydrocodone mostly. He has other pain med scrips including morphine and will use it as necessary. I spoke with him Wed. night and he states he has stopped all anti-seizure meds. He has seen a small increase in the # of seizures daily but it's negligible compared to how he feels otherwise. He feels better overall without the anti-seizure med. We also discussed marijuana. He said he had taken a hybrid which had the THC and CBD but he didn't like the high feeling. He said he wanted to get just the CBD oil but he has a hard time leaving his house. I found some at a local health food store and I put it in the mail to him yesterday. I'll let you know how it works. You mention a "wide range of flowers". What is this? Thank you for your help.

the flower is the plant. Your husband can definitely use the oil, but there is a hybrid plant that he could use or he could cal add well and he would not feel that"it of control" feeling that the THC product tend to make some folks feel. Best of luck, D