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Astrocytoma: Opting for Surgery

Posted by susanne1954 @susanne1954, Dec 12, 2019

An MRI 8/5/19 showed a lesion on my right optic nerve. The effect of the lesion has been evidence since March of this year approx 9mths. Since first MRI in August I’ve had another MRI and CT scan (no diagnosis) and 2 consults with neurosurgeon.
Effects are - I have double vision when driving and when I look out at a 45deg angle.
My surgeon says a biopsy is only way to determine cancerous or non-cancerous. So if I’m having a biopsy he may as well remove the lesion at same time.
I have 2 options - radiation or surgery
At this stage I’m opting for surgery.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 17, 2019

How are you feeling lately, @jkenser?

@lynda1992 - so, you had a total of four brain surgeries — is that correct? How has your recovery gone?

@susanne1954 - You asked about members having experience with a tectal plate lesion. @thedawn5 talked about a young adult son having a lesion involving the right inferior aspect of the tectal plate extending into the superior aspect of the fourth ventricle. Thedawn5 may have some information on experiences with this lesion.

How are you feeling as your surgery gets nearer, @susanne1954?

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lynda1992 | @lynda1992 | Dec 17, 2019

Actually, I had five different brain surgeries between Oct - Dec 1992: 1. Ventriculoperitoneal shunt inserted. 2. Stereotactic craniotomy. Diagnosed with an intraventricular piloytic astrocytoma 3. Ventriculoperitoneal shunt removed due to infection 4. Insertion of external venriculostomy drain 5. Stereotactic fenestration of the septum pellucidum. Was then treated for unilateral hydrocephalus. My recovery was going great until 2014. I had another grand mal seizure. After being seizure free for over 21 years! I saw a doctor at Mayo Clinic and his diagnosis was: head trauma, brain surgery and/or scar tissue. I'm taking 30mg of phenobarbital a day. That seems to doing the trick. Thank you for asking.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 18, 2019
In reply to @lynda1992 "Actually, I had five different brain surgeries between Oct - Dec 1992: 1. Ventriculoperitoneal shunt inserted...." + (show)
@lynda1992

Actually, I had five different brain surgeries between Oct - Dec 1992: 1. Ventriculoperitoneal shunt inserted. 2. Stereotactic craniotomy. Diagnosed with an intraventricular piloytic astrocytoma 3. Ventriculoperitoneal shunt removed due to infection 4. Insertion of external venriculostomy drain 5. Stereotactic fenestration of the septum pellucidum. Was then treated for unilateral hydrocephalus. My recovery was going great until 2014. I had another grand mal seizure. After being seizure free for over 21 years! I saw a doctor at Mayo Clinic and his diagnosis was: head trauma, brain surgery and/or scar tissue. I'm taking 30mg of phenobarbital a day. That seems to doing the trick. Thank you for asking.

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@lynda1992 - that is quite a list of surgeries.

Since you mentioned having a grand mal in 2014, if you've not yet met @jakedduck1, he has a lot of experience and knowledge related to seizures.

Have you experienced any side effects with the phenobarbital?

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lynda1992 | @lynda1992 | Dec 19, 2019

I'm usually exhausted by the end of the day. My short term memory stinks. (I don't know if that's from the phenobarbital or the surgeries.....) I can be irritable at times. I believe, though, that I'm not any worse off than most people! It's important to have a positive attitude. I won't let the past interfere with the future. I'm going to reach out to @jakedduck1.

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Leonard | @jakedduck1 | Dec 19, 2019

@lynda1992
Mercy gracious, sounds like you’ve been through the mill. I doubt you’ll ever know for sure whether the source of your symptoms are from the surgery or the Phenobarbital since both can cause them. Anticonvulsants can definitely cause drowsiness, lack of energy, irritability and memory issues. I’ve been taking Phenobarbital for 50 years and I am still affected by those side effects. I didn’t think 30mg Phenobarbital was still available. So you take 30 mg once a day? Have you had your level checked? At 30mg I’m curious what your level is.
Has your doctor increased your dosage since your seizure? Your certainly right about a positive attitude. Positive attitudes have so many undeniable health benefits, including lower rates of depression which plagues many with Epilepsy and can lower seizure thresholds.
Best of luck to you,
Jake

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lynda1992 | @lynda1992 | Dec 20, 2019

I take it once a day. Yes, I've had my levels checked. It's low. No, it's never been increased it. Which is fine with me! I I feel enough like a zombie......

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Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 5, 2020

Hi, @susanne1954 - wanted to check in with you and see how your surgery went? How has your recovery been so far?

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biljana | @biljana | Jul 23 5:43am
In reply to @lynda1992 "The 1st doctor wanted to get a biopsy of the tumor. They would need to insert..." + (show)
@lynda1992

The 1st doctor wanted to get a biopsy of the tumor. They would need to insert a needle into my brain to get that sample. When the pathologist said I could die on the table, I could be paralized on my right side, I could have an eye problem, speech problem or a short term memory problem, I freaked out. My doctor them gave me the option to see someone at Mayo Clinic. Of course, that's where I went. The doctor there was 99% sure the tumor was benign. I ended up having a stereotactic craniotomy. The tumor was benign! My doctor said any microscopic pieces left behind should flush out in my spinal fluid. I ended up developing hydrocephalus, so I ended up back at Mayo Clinic. Had three more brain surgeries followed by antibiotics twice a day for three weeks.

Like I mentioned, do your homework. Get another opinion. Surgery should only be done if it's the last resort. Limit your driving. Better yet, stop driving for now. Can you take something for the nausea? Please don't rush into having surgery. It just sounds like there's still a lot of unanswered questions. Thanks for listening.....

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Dear,
my daughter who is 2.5 years old was diagnosed with astrocytic spinal cord tumor.
The tumor was detected by MRI imaging, after which neurosurgeons in Belgrade (Republic of Serbia) immediately performed the operation. We didn't have more than 3 days to make a decision whether or not to agree to the operation. We agreed because the doctors suspected that it was a malignant tumor and that the operation was urgent. After the operation, our daughter was left without the ability to move her legs, nor the ability to control her sphincters. Also, the tumor was not completely removed by surgery.
Now we are looking for a hospital and doctors who would take over to operate and remove the remaining part of the tumor.
Can you give us a suggestion of a doctor in the hospital where you were a patient?
Thank You !
Best regards!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 30 9:33am
In reply to @biljana "Dear, my daughter who is 2.5 years old was diagnosed with astrocytic spinal cord tumor. The..." + (show)
@biljana

Dear,
my daughter who is 2.5 years old was diagnosed with astrocytic spinal cord tumor.
The tumor was detected by MRI imaging, after which neurosurgeons in Belgrade (Republic of Serbia) immediately performed the operation. We didn't have more than 3 days to make a decision whether or not to agree to the operation. We agreed because the doctors suspected that it was a malignant tumor and that the operation was urgent. After the operation, our daughter was left without the ability to move her legs, nor the ability to control her sphincters. Also, the tumor was not completely removed by surgery.
Now we are looking for a hospital and doctors who would take over to operate and remove the remaining part of the tumor.
Can you give us a suggestion of a doctor in the hospital where you were a patient?
Thank You !
Best regards!

Jump to this post

@biljana, this is such a scary time for you and your family. If consulting with experts at Mayo Clinic is an option for you and your daughter, here is how to inquire as an international patient:
http://mayocl.in/1mtmR63
Mayo Clinic International Patient Services https://www.mayoclinic.org/departments-centers/international

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