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Awaiting 2nd MRI for Meningioma: What are possible effects of surgery?

Posted by bonjimhome @bonjimhome, Apr 2 9:57pm

Meningioma in right lower quadrant. If it has grown, what are possible side effects of surgery?

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vernicek | @vernicek | May 18 11:44am
In reply to @mkoch "@vernicek: In response to your question of how my meningioma was removed: I had a craniotomy..." + (show)
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@vernicek: In response to your question of how my meningioma was removed: I had a craniotomy 2 years ago when I was 72. The meningioma was in my sphenoid sinus 1/16th of an inch from my optic nerve. The neurologist I first consulted said there was no way any neurosurgeon would operate in that location. He referred me to a radiation oncologist in San Jose. The radiation oncologist said he would do radiation Mon.-Fri. for 5 weeks. But then he said he was a little concerned about doing radiation so close to my optic nerve and would consult with the neurosurgery department at UCSF. My daughter insisted I go directly to UCSF myself for a 3rd opinion. The neurosurgeon I saw there said it is always best to remove meningiomas if possible and that was his recommendation. I felt nervous about telling him that 2 other neuro docs had suggested that no one would operate in that location. His response was, "I do one or two a week." Then I brought up the fact of my age, 72. He said, "I have operated on 80 year olds." I will add that I have had 3 other major surgeries during my life, two in my 40s and one in my 60s. Waking up from the anesthesia after my craniotomy was the first time I wasn't sick afterward.

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@mkoch My neurosurgeon at the UC Davis Medical Center is from UCSF and has specialized in meningiomas for 20 years. I have referrals to Stanford and UCSF as well but chose UC Davis in Sacramento because it’s close to my home in Davis and the neurosurgeon is highly rated. If necessary after my second MRI, I will get other opinions. I’m 74 without one other health issue and was shocked when the meningioma was discovered. So far, there are no symptoms.

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teonianc | @teonianc | 6 days ago

I had a meningioma that was 5.6 cm and had it removed in 2 sections due to the size. After the 1st surgery I did okay but was a little sick from the meds. I lost a little of my peripheral vision and my walking was a little off. After my 2nd surgery I did a lot better and regained my vision, my walking is back to normal and I’m doing great. I am totally off my medications and my ophthalmologist has released me to be able to drive. My energy level is back to normal and I feel great.

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doyel | @doyel | 6 days ago

Do any of you have extreme exhaustion. I Also have low plattlet count (itp) along with my meningioma and don't know which one causes it

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loujo | @loujo | 2 days ago
In reply to @mkoch "@kkellyjones1954: Is the meningioma literally sitting on your optic nerve? I ask because I had a..." + (show)
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@kkellyjones1954: Is the meningioma literally sitting on your optic nerve? I ask because I had a 2.7 centimeter meningioma that was located 1/16th of an inch from my optic nerve and I was able to have it removed. It's been 2 years and both my follow up MRIs show no regrowth.

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@mkoch I like your answer very much because it is what I am facing right now. Small meningioma very near optic nerve but opinion is take it out now. Did you have a cranio and then recovery?

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loujo | @loujo | 2 days ago

I am frightened and because of loss of my husband, mother and now father, I need to make this decision alone. The first opinion said it was "just" a meningioma so we will do a follow up MRI with contrast in a year. I went for a second opinion because I had been unsteady and there were some mobility issues. The second opinion was at a more major medical center (Georgetown) and after a great deal of studying, the neurosurgeon recommended the craniotomy. It seems the meningioma is very close to the optic veins/arteries. Right now, there is space, but if there is a growth spirt (it is currently 2 1/2 cm) it is a more challenging procedure. This group seems to have been through a great deal, and I do not know if a procedure in my frontal lobe is something to go into and how the craniotomy will impact me and how my brain responds to a surgery in the frontal lobe and if I will have the same emotions (good and bad). For a variety of reasons, there are no family members to discuss this whole thing with and the doctor wants to do the surgery the second week of June. Do I have to write a will? What questions should I be asking the doctor specifically. He has tried to explain but the only risks he speaks about are infection. I always worry when a surgeon makes it seem like it will be very simple and I will not have after effects of losing a lot of advanced education. It seems like there are alternatives, but radiation was not the option he thought was viable. Looking for a mentor/buddy through this. Considering asking for another MRI in July to see if there is growth but not sure if my fear is a reason to put this off.

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jasonl1012 | @jasonl1012 | 2 days ago
In reply to @loujo "I am frightened and because of loss of my husband, mother and now father, I need..." + (show)
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I am frightened and because of loss of my husband, mother and now father, I need to make this decision alone. The first opinion said it was "just" a meningioma so we will do a follow up MRI with contrast in a year. I went for a second opinion because I had been unsteady and there were some mobility issues. The second opinion was at a more major medical center (Georgetown) and after a great deal of studying, the neurosurgeon recommended the craniotomy. It seems the meningioma is very close to the optic veins/arteries. Right now, there is space, but if there is a growth spirt (it is currently 2 1/2 cm) it is a more challenging procedure. This group seems to have been through a great deal, and I do not know if a procedure in my frontal lobe is something to go into and how the craniotomy will impact me and how my brain responds to a surgery in the frontal lobe and if I will have the same emotions (good and bad). For a variety of reasons, there are no family members to discuss this whole thing with and the doctor wants to do the surgery the second week of June. Do I have to write a will? What questions should I be asking the doctor specifically. He has tried to explain but the only risks he speaks about are infection. I always worry when a surgeon makes it seem like it will be very simple and I will not have after effects of losing a lot of advanced education. It seems like there are alternatives, but radiation was not the option he thought was viable. Looking for a mentor/buddy through this. Considering asking for another MRI in July to see if there is growth but not sure if my fear is a reason to put this off.

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@loujo if you’re not completely comfortable with what he’s saying, get a third opinion. I went to three different neurosurgeons, and two of them completely agreed. I would’ve felt comfortable with either one of them. Both of them offered, and scopic minimally invasive approach through the sinuses. My tumor was also 2.5 cm and pressing up against my optic nerves and optic chiasm. I did have surgery, but you should be taking it seriously as our possible complications, including stroke and death. luckily, these are almost always very slow growing and not cancerous so don’t feel rushed into any opinion.

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jasonl1012 | @jasonl1012 | 2 days ago
In reply to @loujo "I am frightened and because of loss of my husband, mother and now father, I need..." + (show)
Profile picture for loujo @loujo

I am frightened and because of loss of my husband, mother and now father, I need to make this decision alone. The first opinion said it was "just" a meningioma so we will do a follow up MRI with contrast in a year. I went for a second opinion because I had been unsteady and there were some mobility issues. The second opinion was at a more major medical center (Georgetown) and after a great deal of studying, the neurosurgeon recommended the craniotomy. It seems the meningioma is very close to the optic veins/arteries. Right now, there is space, but if there is a growth spirt (it is currently 2 1/2 cm) it is a more challenging procedure. This group seems to have been through a great deal, and I do not know if a procedure in my frontal lobe is something to go into and how the craniotomy will impact me and how my brain responds to a surgery in the frontal lobe and if I will have the same emotions (good and bad). For a variety of reasons, there are no family members to discuss this whole thing with and the doctor wants to do the surgery the second week of June. Do I have to write a will? What questions should I be asking the doctor specifically. He has tried to explain but the only risks he speaks about are infection. I always worry when a surgeon makes it seem like it will be very simple and I will not have after effects of losing a lot of advanced education. It seems like there are alternatives, but radiation was not the option he thought was viable. Looking for a mentor/buddy through this. Considering asking for another MRI in July to see if there is growth but not sure if my fear is a reason to put this off.

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@loujo I would look for someone from a major medical Center close to wherever you are. Mayo is always an excellent choice, I believe NYU is number one in the world, and there’s excellent centers on the West Coast as well. Find somebody that does the endoscopic nasal approach and does at least 100 or more per year. There’s a good article that states if they do 100 or more per year, the complication rates drop drastically.

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