Newly Diagnosed With Meningioma: What can I expect with surgery?

Posted by christinehigdem @christinehigdem, Thu, Jul 2 6:02am

My journey started with a massive headache and nausea that wouldn’t stop. “Stress at work” and a migraine was what the NP at my local small hospital said was causing the problem. After 4 days of not being able to think, move without pain or eat, I went to the emergency room, where they threw all the drugs at me for migraine but nothing helped until they gave me steroids. I asked if there was a test or scan they could do that would show if I had a bleed or something at the small hospital. They did a CT and found a meningioma about the size of a navel orange behind my right sinus going down to the base of my skull behind my ear. The NP in charge of my care said that I am my best advocate! Transferred to the larger hospital an hour away via ambulance ride, but they had a stand-in on call neurosurgeon since our area only has one specialist, which was very unhelpful. After three days in the hospital getting the symptoms under control, the neurosurgeon rescheduled my initial appointment twice due to personal reasons and vacation. I had decided to research myself, and found that Mayo has the best care available, so after a whirlwind week, I was seen for the first time in Rochester. I’m scheduled for angiography to map the vessel inclusion next Tuesday and craniotomy on Wednesday to remove the tumor. The difference in attitude and how I’ve been treated at Mayo has been INCREDIBLE. Still anxious and more than a little scared about what happens next. What can I expect?

Hi @christinehigdem, thank goodness you knew that there was more going on than migraines. I can imagine that you've had a whirlwind tour through appointments, tests, and consults. I'm tagging fellow members @kmart @mkjames @mrector @lindajean @cacoon6 @jmb73 @julie1976 @cindyt63 and @jill333 who can share more about their experiences with meningioma and treatments, including surgery. You may also be interested in this discussion:

– Left Frontal Meningioma surgery recovery https://connect.mayoclinic.org/discussion/left-frontal-meningioma-surgery-recovery/

Are you at Mayo Clinic now? Do you have someone with you?

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Dear Christine, I was diagnosed with a similar meningioma and underwent surgery for the removal in 2018 at Oregon Health Sciences University in Portland, OR. They were terrific. I think you have made a wise move in seeking care at a facility where specialists do this kind of surgery frequently and the attitude toward you is caring. What to expect after surgery? I was placed in the ICU for 2 days after surgery, then moved to a regular neurosurgery recovery area for another 4 days. The next part is what I did not see coming. I was discharged to another hospital closer to home that had an intensive physical therapy program. I was there for just over a week, and then discharged for ongoing outpatient therapy. I started that program with physical speech, and occupational therapy. I quickly proficiencies the Occupational therapy, but continued with the other 2 therapies for 3 more months until I achieved the goals they set for me which, in my case, were driven by Medicare. So, I did not anticipate the 3 months of therapy. Because neurosurgery patients are regarded as having a high risk of falling with potential serious consequences from a fall, I was required to use a walker for 2 months after surgery before graduating to a cane. That part was difficult for me, as I have always been very active. My surgery resulted in leaving a small part of the meningioma in place, because surgical removal might have blinded me in my right eye, as my optical nerve was encased in the tumor. Therefore, I was requested to come in for followup MRIs, initially at 6-month intervals (I am now on 12-month intervals) to check on whether the remnant has begun growing again. I am very fortunate in that my recovery has been totally uneventful and pain free. The strongest pain med I was on after surgery was Tylenol. But, I am told that this is not typical, and may be different for you. I hope this information is helpful to you. Be strong and positive, as you are in good hands. I wish you well in your journey. Alll my best to you, Fiddlinchuck.

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@colleenyoung

Hi @christinehigdem, thank goodness you knew that there was more going on than migraines. I can imagine that you've had a whirlwind tour through appointments, tests, and consults. I'm tagging fellow members @kmart @mkjames @mrector @lindajean @cacoon6 @jmb73 @julie1976 @cindyt63 and @jill333 who can share more about their experiences with meningioma and treatments, including surgery. You may also be interested in this discussion:

– Left Frontal Meningioma surgery recovery https://connect.mayoclinic.org/discussion/left-frontal-meningioma-surgery-recovery/

Are you at Mayo Clinic now? Do you have someone with you?

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I am home now, 7 hours away. My husband and I head back again on the 4th for preop testing and blood work on the 5th. Angiography on the 7th, and Craniotomy on the 8th. It is amazing how quickly it all was put together. I walked into Mayo on Tuesday with no answers and left two hours later with a fully-planned schedule. Still finalizing plans but feeling better and well taken care of!

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@fiddlinchuck

Dear Christine, I was diagnosed with a similar meningioma and underwent surgery for the removal in 2018 at Oregon Health Sciences University in Portland, OR. They were terrific. I think you have made a wise move in seeking care at a facility where specialists do this kind of surgery frequently and the attitude toward you is caring. What to expect after surgery? I was placed in the ICU for 2 days after surgery, then moved to a regular neurosurgery recovery area for another 4 days. The next part is what I did not see coming. I was discharged to another hospital closer to home that had an intensive physical therapy program. I was there for just over a week, and then discharged for ongoing outpatient therapy. I started that program with physical speech, and occupational therapy. I quickly proficiencies the Occupational therapy, but continued with the other 2 therapies for 3 more months until I achieved the goals they set for me which, in my case, were driven by Medicare. So, I did not anticipate the 3 months of therapy. Because neurosurgery patients are regarded as having a high risk of falling with potential serious consequences from a fall, I was required to use a walker for 2 months after surgery before graduating to a cane. That part was difficult for me, as I have always been very active. My surgery resulted in leaving a small part of the meningioma in place, because surgical removal might have blinded me in my right eye, as my optical nerve was encased in the tumor. Therefore, I was requested to come in for followup MRIs, initially at 6-month intervals (I am now on 12-month intervals) to check on whether the remnant has begun growing again. I am very fortunate in that my recovery has been totally uneventful and pain free. The strongest pain med I was on after surgery was Tylenol. But, I am told that this is not typical, and may be different for you. I hope this information is helpful to you. Be strong and positive, as you are in good hands. I wish you well in your journey. Alll my best to you, Fiddlinchuck.

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@fiddlinchuck — Thank you! Mine isn't near my eye, but it is in my right sinus… the concerns are that it has also involved the large vein at the base of my skull. I pray I have a good surgical outcome like yours! I've already been told they might not be able to take the whole tumor out because of the location and the possibility of nerve damage. Blessings to you as you continue your recovery!

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@christinehigdem

@fiddlinchuck — Thank you! Mine isn't near my eye, but it is in my right sinus… the concerns are that it has also involved the large vein at the base of my skull. I pray I have a good surgical outcome like yours! I've already been told they might not be able to take the whole tumor out because of the location and the possibility of nerve damage. Blessings to you as you continue your recovery!

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Christine, thank you for your kind words, my thoughts will be with you as yo go forward. One additional item that may or may not affect you that I though I might mention is in regards to driving privileges. The day that I was diagnosed, the neurosurgeon on duty told me that it is one thing to drive and not know I have a brain tumor, but quite another to drive knowing of the tumor. He then advised me to not drive. My license was not taken away or suspended, it was all on the honor system, which I obeyed, as there iss a lot at stake, e.g. woould m6 Insurance cover me if I chose to drive and got into an accident? Fortunately, my wife was able to drive me to my out patient therapy sessions, but as soon as that finished, I explored in earnest how to safely and legally resume driving. I ended up retaking my state’s written test followed by the practical driving test, just like a teenager, both of which I aced and resumed driving 6 months after my diagnosis. I also needed my doctor to submit a form attesting that I was physically fit to drive, and I also needed an opthamologist’s concurrence. None of this is simple. I forgot to mention that because of the close association with my optic nerve, regular opthamologist visits were also prescribed after my surgery. This may not apply to you, as you have noted. I have also been placed on the anti-seizure med Keppra, which I take twice daily, and it has worked well for me. I hope that this info on my post surgery experuiences is helpful to you in understanding what to expect. Once again, best of luck to you, Christine, one day you, too, will be looking at all of this in your rear view mirror. Regards, Fiddlinchuckchuck

Liked by christinehigdem

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I am so glad that you went to Mayo to be examined. My neuro-surgeon recommended Gamma Knife surgery and Jill -from this group- helped me through it. Please stay in touch and I will pray for a successful surgery and an easy recovery.

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@fiddlinchuck

Christine, thank you for your kind words, my thoughts will be with you as yo go forward. One additional item that may or may not affect you that I though I might mention is in regards to driving privileges. The day that I was diagnosed, the neurosurgeon on duty told me that it is one thing to drive and not know I have a brain tumor, but quite another to drive knowing of the tumor. He then advised me to not drive. My license was not taken away or suspended, it was all on the honor system, which I obeyed, as there iss a lot at stake, e.g. woould m6 Insurance cover me if I chose to drive and got into an accident? Fortunately, my wife was able to drive me to my out patient therapy sessions, but as soon as that finished, I explored in earnest how to safely and legally resume driving. I ended up retaking my state’s written test followed by the practical driving test, just like a teenager, both of which I aced and resumed driving 6 months after my diagnosis. I also needed my doctor to submit a form attesting that I was physically fit to drive, and I also needed an opthamologist’s concurrence. None of this is simple. I forgot to mention that because of the close association with my optic nerve, regular opthamologist visits were also prescribed after my surgery. This may not apply to you, as you have noted. I have also been placed on the anti-seizure med Keppra, which I take twice daily, and it has worked well for me. I hope that this info on my post surgery experuiences is helpful to you in understanding what to expect. Once again, best of luck to you, Christine, one day you, too, will be looking at all of this in your rear view mirror. Regards, Fiddlinchuckchuck

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@fiddlinchuck Thank you! I wasn't advised against driving, but I took the initiative and gave up my keys to my husband and grown daughter. They've been awesome in running my errands and making sure I have what I want/need. I'm very blessed to have a great family and friends to help, and a support system to call on when I feel overwhelmed. I couldn't imagine going through this alone 💞. So happy to hear that you're in the 'rear-view'… your encouragement is very appreciated!

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