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.

Liked by Leonard, swift

Hello, @susanne1954. Welcome to Connect. Thanks for sharing his information about your journey with the astrocytoma so far and that you are moving toward a biopsy and lesion removal.

I'd like to introduce you to others on Connect who've talked about astrocytoma, like @cleahy85 @lynda1992 @thedawn5 @markelia @jkenser and others. I'd also like you to meet @hopeful33250. Hoping they may have some thoughts to share as you move toward this surgery and also provide some support.

When will you be having this surgery, susanne1954? Also, it sounds as though you feel confident in your decision to choose surgery at this time instead of the radiation option. As I know that having to make such big decisions in the midst of an illness can feel frightening for some, just wondering if you'd have any advice for others with brain tumors about how they, too, can make treatment direction decisions confidently?

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I am sorry to hear that you are going through this. I think surgical removal is definitely the smartest choice. When will you be having surgery?

Liked by Lisa Lucier, Leonard

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Just being told that you have a brain tumor is scary all by itself! You need to find out as much as you can regarding this type of tumor. Ask alot of questions. Like have either of these neurosurgens ever operated on a brain tumor located on the opitc nerve? We're talking about your brain! This is very serious. Please don't jump into having sugery, just becuase that's an option. Research. Educate yourself on brain tumors & brain surgeries as much as you can. American Brain Tumor Association (abta.org) is a good starting point. I had an intraventricular pilocytic astrocytoma. I'm a 27 year survivor!! Let me know if you have any questions. My thoughts & prayers are with you…..

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@lynda1992

Just being told that you have a brain tumor is scary all by itself! You need to find out as much as you can regarding this type of tumor. Ask alot of questions. Like have either of these neurosurgens ever operated on a brain tumor located on the opitc nerve? We're talking about your brain! This is very serious. Please don't jump into having sugery, just becuase that's an option. Research. Educate yourself on brain tumors & brain surgeries as much as you can. American Brain Tumor Association (abta.org) is a good starting point. I had an intraventricular pilocytic astrocytoma. I'm a 27 year survivor!! Let me know if you have any questions. My thoughts & prayers are with you…..

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Thankyou for responding Lynda.
How was your lesion treated?
My thoughts are that if I have surgery we wil know what label we can put on this lesion.
So far I’ve researched meningioma and astrocytoma. Apart from double vision when driving and nausea I have no other effects.
I speak with my neurosurgeon this Monday via phone hookup. I’m a Christian with faith to believe that God has my situation in His hands and am trusting for good outcome. Bless you

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@susanne1954 Hello Susanne,

I am glad that you feel confident about surgery as a good option for you. I would encourage you, however, to talk with the surgeon to know for sure that this is a doctor who is experienced in this type of surgery. (You might ask him how long he has been in practice and how many of these surgeries he has performed.)

It is also always advisable to get a second opinion. In the case of brain surgery, you might consider a second opinion from a multidisciplinary medical center (like a university medical school or a facility like Mayo). These types of medical centers have a lot of research behind their medical practice and that is a good thing.

Have you sought a second opinion yet?

Liked by Leonard

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To @susanne1954 and anyone else who might be considering a second opinion or how to approach a consult with a new specialist, please read the following Connect discussion. Here is a link to this discussion, https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765.

As an appointment with a new doctor can be anxiety-producing these tips on how to prepare for the appointment and also how to approach a new doctor are really quite helpful.

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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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I’m talking to my neurosurgeon tomorrow
I’m going to ask more questions
I can’t understand why after 2 MRIs and 1 CT scan we have no diagnosis
I will limit my driving too in addition to taking ginger for my nausea
I’ll let you know how I go with my appt tomorrow
Cheers

Liked by Leonard

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Please let me know how your appt goes today. Sounds like you'll be better prepared when talking to your doctor. Cheers!

Liked by Lisa Lucier, Leonard

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@lynda1992

Please let me know how your appt goes today. Sounds like you'll be better prepared when talking to your doctor. Cheers!

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Thankyou to everyone who have been so kind to reply
My consult with surgeon answered my questions
We have no accurate diagnosis because the tumour is so small and has no significant characteristics
Surgery will go ahead 7 Jan.
On my original MRI a lesion in my tectal plate was found in addition to lesion on optic nerve
Anyone had experience with a tectal plate lesion. At this stage we are monitoring it and if effects are noticed radiation is the only option.
But for the grace of God go I.

Liked by Lisa Lucier, Leonard

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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?

Liked by Leonard

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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.

Liked by Lisa Lucier, Leonard

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@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?

Liked by Leonard

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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.

Liked by Leonard

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@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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