1. < Brain Tumor

Many symptoms still 2 months after meningioma surgery

Posted by rajincajunmom @rajincajunmom, Feb 3, 2017

I am still having pain since my surgery. I was not told anything about this surgery as far as what to expect. My face is sinking in and the middle of my head is numb. I feel so alone. The doc refuses to give melanin meds and I've been to the ER at least 5 times since the surgery and have also been admitted back in the hospital because of an infection and fever. I am nauseated daily and have difficulties eating

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

Jamie Olson | @jamienolson | Feb 5, 2017
In reply to @jamienolson "@rajincajunmom, I'm so sorry to hear you are suffering and are feeling alone but am delighted..." + (show)
@jamienolson

@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/discussion/mayoclinicneurochat-on-brain-tumors/ 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?

Jump to this post

Things may be tough and when days seem unbearable....just take it minute by minute. I want to provide you with this link in case you need to talk to someone. http://suicidepreventionlifeline.org/

Keep fighting. I'm sending strength and peace your way!

REPLY
pegorr | @pegorr | Feb 5, 2017
In reply to @pegorr "Unfortunately I was allergic to most pain meds so didn't even come home with any, but..." + (show)
@pegorr

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

Jump to this post

Will definitely keep you in my prayers and wishing you all the best life has to offer. All for 1 and 1 for all! love,peg #braintumorwarriors

REPLY
asuzanna | @asuzanna | Feb 9, 2017
In reply to @pegorr "Unfortunately I was allergic to most pain meds so didn't even come home with any, but..." + (show)
@pegorr

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

Jump to this post

You are great. Your persistence is stronger than brain tumours. Contine fighting you are the winner! God bless you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9, 2017
In reply to @pegorr "Unfortunately I was allergic to most pain meds so didn't even come home with any, but..." + (show)
@pegorr

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

Jump to this post

Welcome to Connect, @asuzanna. Can you tell us a bit about yourself?

REPLY
View MoreView Less
Please sign in or register to post a reply.