Many symptoms still 2 months after meningioma surgery
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.
@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?
Hi. Thanks so much for responding. I’m not feeling well today. My appetite has changed as well. I had a non cancerous tumor. It starts with a M. My surgery was 10 hours long. I feel worse now than I did before my surgery
The tumor was 5cm and close to my sinus cavities. One day at work I started feeling bad. Horrible headache and the nausea turned into vomiting. I went to the er after work and a Catscan was done and they found it. I was transported immediately to LSU SHREVEPORT.
Hello! I had my tumor removed 5 weeks ago yesterday. I still have some head pain, but mostly numbness and shooting type feelings from the nerves re-growing. Other than that I am healing well and I feel so very blessed. I am struggling with anxiety as I try to wrap my head around what happened, as it happened so fast. I still cannot believe I had brain surgery. I really hope you start to feel better soon. I will pray for the both of us for 100% healing =)
If you have any questions, or just want someone to talk to that just went through something similar do not hesitate to reach out to me =) Sometimes it helps just to talk to others that have been through it.
@jkenser, thank you so much. I talked to my primary doctor about my Bp medicine. He refused to change it. Getting in touch with neurologist is impossible. Be
Hello, I’m so sorry to hearing you are having such a difficult time. I have had 2 brain surgeries and also radiation. After 6 years I still have some numbness, intermittent pain and pressure. I have realized that I have what is called, “a new normal”. I believe it really helps to talk with others because I know for me, I start thinking something else is going wrong, or I’m the only person going through what I am, and then I realize, I’m not, and that for the most part I’m going to be fine. I’m not sure why it’s comforting to know other people are experiencing the same things I am post surgery, but I think it’s an indicator that this is how brain tumor surgeries turn out, we’re not odd, we’re not complainers, we didn’t get a bad surgery, it’s just how it is. I’m really hoping things improve for you soon, and you’re able to enjoy all the wonderful things life has to offer. Remember, we’re #braintumorwarriors, 1 for all and all for 1. love,peg
Omg! I have the numbness too! I thought I was crazy and that something was terribly wrong. Thank you for sharing your testimony with me. Yes, we are survivors! One question: how long after your initial surgery did you stop hurting and needing pain meds?
It was a meningioma tumor. The procedure was basically them drilling holes in my brain, cutting the bone in the way of the tumor and then getting as much of it out as they could. I was told that they got 95% of it. I just wanna stop hurting, be able to work again, drive again,etc. Yes I’ve had suicidal thoughts because of the pain and not getting anywhere with my doctor or anyone.
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
Thank you. That was so inspiring. I’m not alone. I can’t sleep on my back or my right side either. I had insomnia for a little over a month. Nausea too. Not able to eat and so on. Again, thanks for letting me know that I’m not alone. God bless you. And please keep me in your prayers.❤