Many symptoms still 2 months after meningioma surgery

@rajincajunmom, I'm so sorry to hear you are suffering and are feeling alone but am delighted that you have found Mayo Clinic Connect. We welcome you!
We are a patient to patient based community where it is safe to post questions and concerns about your personal health journey. Please feel free to reach out to any of our members with questions.

I would like to connect you with community member @jkenser, who is just over a month out post-operative procedure. @jkenser, can you please let us know how are you are doing today?
I would also like to connect you with members @pegorr, @lindajean and @barbarabx, please connect and help @rajincajunmom discuss her frustration. Did any of you feel this same way after you had surgery?

While we wait for members to reply, here is a video on brain tumors and skull base tumors. https://connect.mayoclinic.org/group/brain-tumor-support-group/ that you may find helpful. At minute 7:25 they talk about treatment and at 17:55 they talk about resources and innovative therapies.

@rajincajunmom, can you tell us- What kind of procedure did you have done? what type of Brain Tumor were you diagnosed with?

Unfortunately I was allergic to most pain meds so didn't even come home with any, but I did take steriods for a time and also a seizure medicine called
Gabapentin that helped with the pain as well. I'm not good at taking pills and I like to be pill free but if my head gets hurting real bad I take an extra strength excedrin or an aspirin, which usually cuts the pain to manageable. Like I said it's been a while since surgery and I still cannot sleep on the surgery side of my head. It causes an excess amount of pressure. After both my surgeries I also had double vision for about 3 months. I couldn't drive, etc. and wore a patch a lot of the time to avoid nausea,etc.I now have 2 tumors on the other side but am opting for radiation this summer at Swedish Hosp. in Seattle. I really hope you can get your pain manageable but I'm not sure if we can ever be 100% pain free. I am living a happy productive life. I did ask my neuro to push the genius button when he was rooting around he my head, but he said, "That'll cost you extra:-)" I'm really grateful we all have our wits about us, and I'm continually amazed at how many people/children have brain tumors. There needs to be more funding and focus for research. Side note, I talked to my brother the other day and he related to me that last summer he had brain tumor surgery. He didn't tell any of us because he was too nervous. Oddly enough he had meningiomas as well, only his was wrapped around his optic nerve and blinded him in his left eye. Stay strong, you're not alone, we'll walk this journey together because as Audrey Hepburn said, The BEST thing to HOLD onto in life is EACH OTHER! love,peg

Unfortunately I was allergic to most pain meds so didn't even come home with any, but I did take steriods for a time and also a seizure medicine called
Gabapentin that helped with the pain as well. I'm not good at taking pills and I like to be pill free but if my head gets hurting real bad I take an extra strength excedrin or an aspirin, which usually cuts the pain to manageable. Like I said it's been a while since surgery and I still cannot sleep on the surgery side of my head. It causes an excess amount of pressure. After both my surgeries I also had double vision for about 3 months. I couldn't drive, etc. and wore a patch a lot of the time to avoid nausea,etc.I now have 2 tumors on the other side but am opting for radiation this summer at Swedish Hosp. in Seattle. I really hope you can get your pain manageable but I'm not sure if we can ever be 100% pain free. I am living a happy productive life. I did ask my neuro to push the genius button when he was rooting around he my head, but he said, "That'll cost you extra:-)" I'm really grateful we all have our wits about us, and I'm continually amazed at how many people/children have brain tumors. There needs to be more funding and focus for research. Side note, I talked to my brother the other day and he related to me that last summer he had brain tumor surgery. He didn't tell any of us because he was too nervous. Oddly enough he had meningiomas as well, only his was wrapped around his optic nerve and blinded him in his left eye. Stay strong, you're not alone, we'll walk this journey together because as Audrey Hepburn said, The BEST thing to HOLD onto in life is EACH OTHER! love,peg

Unfortunately I was allergic to most pain meds so didn't even come home with any, but I did take steriods for a time and also a seizure medicine called
Gabapentin that helped with the pain as well. I'm not good at taking pills and I like to be pill free but if my head gets hurting real bad I take an extra strength excedrin or an aspirin, which usually cuts the pain to manageable. Like I said it's been a while since surgery and I still cannot sleep on the surgery side of my head. It causes an excess amount of pressure. After both my surgeries I also had double vision for about 3 months. I couldn't drive, etc. and wore a patch a lot of the time to avoid nausea,etc.I now have 2 tumors on the other side but am opting for radiation this summer at Swedish Hosp. in Seattle. I really hope you can get your pain manageable but I'm not sure if we can ever be 100% pain free. I am living a happy productive life. I did ask my neuro to push the genius button when he was rooting around he my head, but he said, "That'll cost you extra:-)" I'm really grateful we all have our wits about us, and I'm continually amazed at how many people/children have brain tumors. There needs to be more funding and focus for research. Side note, I talked to my brother the other day and he related to me that last summer he had brain tumor surgery. He didn't tell any of us because he was too nervous. Oddly enough he had meningiomas as well, only his was wrapped around his optic nerve and blinded him in his left eye. Stay strong, you're not alone, we'll walk this journey together because as Audrey Hepburn said, The BEST thing to HOLD onto in life is EACH OTHER! love,peg

I had meningioma surgery Jan 4, 2024. Two years ago. My scalp is still numb and the right side of my face feels like I have been shot up with Novacane from the dentist, waiting for it to wear off and it never does. It’s feeling of pins and needles all the time, now at times I feel a tightness like someone is trying to rip off the bandage that does not exist. Every so often a nerve will shoot off by my eye and right temporal side, That area of my face is sinking in. The surgery went well the tumor was removed, as well as, part of my right temporal lobe. I didn’t realize that was going to be removed, guess I forgot, my sons said the Dr told me. He also said nothing will change. I may be a little off to some people but I have seen and felt a big change over the last year, Slight changes creeped up until the last few month the things have magnified. My memory definitely not as sharp as it was, anxiety that I never had, now I do. It’s been showing its face a lot more than ever. My social life is gone, i am kinda fine with that. No one understands and thinks I am just giving them excuses to not do something. I recently had two other surgeries, I have been recovering from them. Haven’t been working for the last 6 months. This has been the time when I am realizing all this is due to the brain surgery. Memory loss, hard time coming up. with the right word for something I am talking about. , Using a cane to walk as I am having increased balance issues, My depression is much worse, I lost my 31 yo son 6 years ago didn’t think I could be more any more depressed, this is a different depression. Noticing some cognitive deficits, now certain foods are starting to taste bad, I love ice cream today it tasted awful, it’s store bought so I will see how it is when I buy fresh from an ice cream place. I have a hard time concentrating, filling out important papers. Have no desire to do anything, my place needs to be organized, my intentions are there, the desire is not so I sit in front of the TV. Don’t have a desire to talk on the phone much or really do anything. The though of going to a party or crowded place raises my anxiety. I want to go back to work hopefully at the end of this month. My reality is not saying this, if I continue on this road I will not be able too. I work with young children with special needs. Would never want to be a liability to the school or not give my best to the children. I will have to decide whether or not I can. I will figure it out as the time gets closer. I look good, that what everyone says, it’s nice, I like compliments the downfall is because I look good they do not believe anything is wrong, They stop there, if they would be a little patient and keep turning the page, they will know.
The cover is nice, first page says a little more, nothing that interests them so they stop there. You need to hear me, see me so I push for them to read on, wow I didn’t see that coming. They are shocked but move to something easy, they push it away, that’s something we are unable to do. I have never gotten back to driving on parkways since the surgery, it’s too stimulating for my head. Haven’t driven in 6 months due to my last two surgeries, not sure if I will be able to drive again. This has been the most challenging. My independence has been robbed from me. This is a lot. For some reason it’s hitting me more now than ever, it’s a roller coaster of a ride. It’s one that God has given me, I follow. As long as He continues to open my eyes each morning to a brand new day, I am Blessed. I am just curious if anyone else has any of these symptoms. I sign off for now, it’s 12:15 am. Going to try to get some sleep, that’s another issue as well. The gift from this is I don’t have to get up to an alarm clock. I get up a lot during the night so tend to sleep in when I can. I would love to get myself on a schedule, Baby steps I tell myself!!!
Thank you for taking the time to read this far. You are here as well as I am , We are Blessed….

@disons
I’m so sorry you are having all this discomfort two years later. I was just diagnosed. Can you share where your tumor was located and what size? Where did you go to have craniotomy?

I had meningioma surgery Jan 4, 2024. Two years ago. My scalp is still numb and the right side of my face feels like I have been shot up with Novacane from the dentist, waiting for it to wear off and it never does. It’s feeling of pins and needles all the time, now at times I feel a tightness like someone is trying to rip off the bandage that does not exist. Every so often a nerve will shoot off by my eye and right temporal side, That area of my face is sinking in. The surgery went well the tumor was removed, as well as, part of my right temporal lobe. I didn’t realize that was going to be removed, guess I forgot, my sons said the Dr told me. He also said nothing will change. I may be a little off to some people but I have seen and felt a big change over the last year, Slight changes creeped up until the last few month the things have magnified. My memory definitely not as sharp as it was, anxiety that I never had, now I do. It’s been showing its face a lot more than ever. My social life is gone, i am kinda fine with that. No one understands and thinks I am just giving them excuses to not do something. I recently had two other surgeries, I have been recovering from them. Haven’t been working for the last 6 months. This has been the time when I am realizing all this is due to the brain surgery. Memory loss, hard time coming up. with the right word for something I am talking about. , Using a cane to walk as I am having increased balance issues, My depression is much worse, I lost my 31 yo son 6 years ago didn’t think I could be more any more depressed, this is a different depression. Noticing some cognitive deficits, now certain foods are starting to taste bad, I love ice cream today it tasted awful, it’s store bought so I will see how it is when I buy fresh from an ice cream place. I have a hard time concentrating, filling out important papers. Have no desire to do anything, my place needs to be organized, my intentions are there, the desire is not so I sit in front of the TV. Don’t have a desire to talk on the phone much or really do anything. The though of going to a party or crowded place raises my anxiety. I want to go back to work hopefully at the end of this month. My reality is not saying this, if I continue on this road I will not be able too. I work with young children with special needs. Would never want to be a liability to the school or not give my best to the children. I will have to decide whether or not I can. I will figure it out as the time gets closer. I look good, that what everyone says, it’s nice, I like compliments the downfall is because I look good they do not believe anything is wrong, They stop there, if they would be a little patient and keep turning the page, they will know.
The cover is nice, first page says a little more, nothing that interests them so they stop there. You need to hear me, see me so I push for them to read on, wow I didn’t see that coming. They are shocked but move to something easy, they push it away, that’s something we are unable to do. I have never gotten back to driving on parkways since the surgery, it’s too stimulating for my head. Haven’t driven in 6 months due to my last two surgeries, not sure if I will be able to drive again. This has been the most challenging. My independence has been robbed from me. This is a lot. For some reason it’s hitting me more now than ever, it’s a roller coaster of a ride. It’s one that God has given me, I follow. As long as He continues to open my eyes each morning to a brand new day, I am Blessed. I am just curious if anyone else has any of these symptoms. I sign off for now, it’s 12:15 am. Going to try to get some sleep, that’s another issue as well. The gift from this is I don’t have to get up to an alarm clock. I get up a lot during the night so tend to sleep in when I can. I would love to get myself on a schedule, Baby steps I tell myself!!!
Thank you for taking the time to read this far. You are here as well as I am , We are Blessed….

@disons

It sounds to me likely that you have recovered from the brain surgery but that something else is happening now. Not sure what. (I had an emergency surgery for a bleeding meningioma and it took 18 months for me to feel ok. ) Maybe in your case there were just a lot of surgeries too close together or maybe another correctible problem. And so my thought on where to start is to level with your GP and/or neurologist and see what they say to get some help in moving forward with the rest of your life.

Best wishes to you.

I had meningioma surgery Jan 4, 2024. Two years ago. My scalp is still numb and the right side of my face feels like I have been shot up with Novacane from the dentist, waiting for it to wear off and it never does. It’s feeling of pins and needles all the time, now at times I feel a tightness like someone is trying to rip off the bandage that does not exist. Every so often a nerve will shoot off by my eye and right temporal side, That area of my face is sinking in. The surgery went well the tumor was removed, as well as, part of my right temporal lobe. I didn’t realize that was going to be removed, guess I forgot, my sons said the Dr told me. He also said nothing will change. I may be a little off to some people but I have seen and felt a big change over the last year, Slight changes creeped up until the last few month the things have magnified. My memory definitely not as sharp as it was, anxiety that I never had, now I do. It’s been showing its face a lot more than ever. My social life is gone, i am kinda fine with that. No one understands and thinks I am just giving them excuses to not do something. I recently had two other surgeries, I have been recovering from them. Haven’t been working for the last 6 months. This has been the time when I am realizing all this is due to the brain surgery. Memory loss, hard time coming up. with the right word for something I am talking about. , Using a cane to walk as I am having increased balance issues, My depression is much worse, I lost my 31 yo son 6 years ago didn’t think I could be more any more depressed, this is a different depression. Noticing some cognitive deficits, now certain foods are starting to taste bad, I love ice cream today it tasted awful, it’s store bought so I will see how it is when I buy fresh from an ice cream place. I have a hard time concentrating, filling out important papers. Have no desire to do anything, my place needs to be organized, my intentions are there, the desire is not so I sit in front of the TV. Don’t have a desire to talk on the phone much or really do anything. The though of going to a party or crowded place raises my anxiety. I want to go back to work hopefully at the end of this month. My reality is not saying this, if I continue on this road I will not be able too. I work with young children with special needs. Would never want to be a liability to the school or not give my best to the children. I will have to decide whether or not I can. I will figure it out as the time gets closer. I look good, that what everyone says, it’s nice, I like compliments the downfall is because I look good they do not believe anything is wrong, They stop there, if they would be a little patient and keep turning the page, they will know.
The cover is nice, first page says a little more, nothing that interests them so they stop there. You need to hear me, see me so I push for them to read on, wow I didn’t see that coming. They are shocked but move to something easy, they push it away, that’s something we are unable to do. I have never gotten back to driving on parkways since the surgery, it’s too stimulating for my head. Haven’t driven in 6 months due to my last two surgeries, not sure if I will be able to drive again. This has been the most challenging. My independence has been robbed from me. This is a lot. For some reason it’s hitting me more now than ever, it’s a roller coaster of a ride. It’s one that God has given me, I follow. As long as He continues to open my eyes each morning to a brand new day, I am Blessed. I am just curious if anyone else has any of these symptoms. I sign off for now, it’s 12:15 am. Going to try to get some sleep, that’s another issue as well. The gift from this is I don’t have to get up to an alarm clock. I get up a lot during the night so tend to sleep in when I can. I would love to get myself on a schedule, Baby steps I tell myself!!!
Thank you for taking the time to read this far. You are here as well as I am , We are Blessed….