Hippocampus tumor

Posted by pattiboatwright @pattiboatwright, Mar 17, 2017

My 31 year old son was diagnosed Nov. ’16 with a temporal lobe tumor by MRI. Further testing shows it is also in his hippocampus. He has had neuropsych testing and WADA test at UCLA Brain Tumor Center. He has been told the location makes it too dangerous to biopsy so we don’t know if it’s benign or malignant. He suffers seizures and is taking Aptiom in an effort to control them. He also has major depression, anxiety and headaches. His team says any procedure including LITT would present more collateral damage than value to his life. Can anyone here comment? Do we need to be doing anything else? They want him to “watch and wait” and return for an MRI in June to see if it’s growing. I’m just terribly uneasy about this whole situation. Perhaps this is the best approach but I’m 3000 miles away from him and struggling with “doing nothing”. Thank you for any replies.

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?

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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.

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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.

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@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.

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@jkenser

@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.

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

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@jkenser

@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.

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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.

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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.

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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!

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@saryn14

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!

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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.

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@saryn14

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!

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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

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I purchased Tyler CBD oil and sent it to him. He says it has not helped with pain or seizures. He is now using morphine but going off it one week each month as advised by his healthcare professional to give his body “a rest”. There must be something else we can try! I can’t bear to hear him in pain and he still refuses to see me. I have asked him for a photograph- maybe one with some of the Christmas gifts I sent- but he says no. I think his appearance must be changing and he just doesn’t want me to know.

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@pattiboatwright

I purchased Tyler CBD oil and sent it to him. He says it has not helped with pain or seizures. He is now using morphine but going off it one week each month as advised by his healthcare professional to give his body “a rest”. There must be something else we can try! I can’t bear to hear him in pain and he still refuses to see me. I have asked him for a photograph- maybe one with some of the Christmas gifts I sent- but he says no. I think his appearance must be changing and he just doesn’t want me to know.

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Patti, this must be so difficult for you to not be able to help your son. My heart goes out to you and I wish you strength.

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Hi patti my name is chris . I too have a benign tumor/ whatever it is .. in the middle of my right hippocampus. They first found it in 2007. I also have epilepsy. The doctor said it might be because of this benign tumor. same thing here they told me that they couldn’t get a biopsy cuz it’s too dangerous. I’m also in watch you wait. The size of 5mm. I get a M r i every 6 months. the biggest thing is I have short term memory problems. I learn to live with it. that’s about all I can do.

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@chris70l

Hi patti my name is chris . I too have a benign tumor/ whatever it is .. in the middle of my right hippocampus. They first found it in 2007. I also have epilepsy. The doctor said it might be because of this benign tumor. same thing here they told me that they couldn’t get a biopsy cuz it’s too dangerous. I’m also in watch you wait. The size of 5mm. I get a M r i every 6 months. the biggest thing is I have short term memory problems. I learn to live with it. that’s about all I can do.

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Chris, thank you for your reply. I’m sorry to hear of your tumor. I will be thinking of you and will always appreciate anything you can share. Tyler recently totaled his car- he shouldn’t have been driving anyway. He had a new MRI on Friday and should hear the results on Tuesday. He refuses to apply for SS Disability so I’m very concerned with how he will live when his short term expires. Maybe that will be what it takes to bring him home.
I pray for your health and happiness. Patti

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So sorry to hear the news. I hope hes alright.

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