Groups I FollowBrain Tumor
Activity by @jkenser
I had my follow up appointment with my neurosurgeon yesterday at the Mayo clinic in Rochester. He is one of 4 neurosurgeons in the world that specializes in temporal lobe surgery. I thought of you and your son while I was there and made it a point to ask him if he would be able to surgically remove a tumor that was entangled within the amygdala and hippocampus.. His exact words were "yes absolutely." I told him that you were told it was inoperable and he said that is because not a lot of people operate in that area but he does. He recommends you reach out to him for a consult. I can tell you first hand after just having my right temporal lobe removed 3 months ago by him, that he is absolutely amazing. I would highly recommend him to everyone that has a tumor in their temporal lobes. I too, was told my tumor was inoperable and now I am tumor free thanks to this fabulous neurosurgeon. His name is Dr. Terrance Burns and he is at the mayo clinic in Rochester. I hope this information helps you and your son. I am praying for you both. If you have any questions feel free to call me anytime. I private messaged you my number.
I go to the Rochester MN campus. They are amazing. I'm so blessed to live in a state with such an amazing hospital. They saved my life. My neurologist told me my tumor was inoperable, but boy was he wrong. My neurosurgeon removed my tumor plus some and I was discharged home less than 48 hours later. I am so blessed!
Hello everyone. I am headed back to the Mayo Clinic this Wednesday for a follow up appointment and MRI. I ask for prayers that there is no tumor re-growth and that I receive nothing but great news. I am finally starting to feel like myself again and have gone back to work and school full time. I am so thankful for all of the blessings the good Lord has given me. I am excited to go to Mayo Wednesday and get the all clear. This has been a life changing 2.5 months, but all for the better; I am so blessed. Thank you all for your prayers and support through this life changing event.
Thank you. Colleen there is no way Mayo would have diagnosed my brain tumor wrong right? If they said it is a grade 1 pilocytic astrocytoma then that's what it was right?? I made the mistake of searching the internet tonight which left me riddled with fear and anxiety. I hate that I feel this way =(
Thank you everyone! So I started searching things on the internet again.. Ended up in tears and with extreme fear. Now I am thinking that Mayo maybe got my diagnosis wrong.. Mayo wouldn't diagnose my tumor wrong would they????? That's impossible right??? I think I am losing it. This fear is ridiculous.
Thank you for your response. Funny you should ask about sleep, as I am not sleeping well at all. I wake up a million times a night =( Unfortunately I am one of those people that does not want to take anything for anxiety or sleep because the thought of that makes me anxious.. I am one big mess. I would love to talk with others that have had pilocytic astrocytomas whose surgeries were a success. I am trying to stay away from google as that only feeds my anxiety. Thank you =)
Hello everyone. 6 weeks ago I had a brain surgery to remove a tumor out of my right temporal lobe. They were able to remove the entire tumor (thank the good Lord). I have never had any surgery so I am unsure how I should be feeling. I still feel as though I am walking around in a fog, I am tired and just do not feel 100% like myself. I am also having pretty bad anxiety and am not sleeping well. I am a registered nurse and am also a full time student pursuing my doctoral degree for family nurse practitioner. I have been able to keep up with classwork and have postponed clinical until the first week in March. Well March is coming quick. I am supposed to go back to work on February 20th and then clinical starts 2 weeks after, but I still feel so foggy. I do not know if the fog is from the surgery or from my anxiety. Some days I just want to cry. I am able to start driving again tomorrow which for some reason scares me. Ugh, I just want to feel like myself again. I want my life back! I know I am so very blessed and I should really focus on all of my blessing. My surgery was a success and my tumor was a grade 1 pilocytic astrocytoma (Thank you Jesus). I just find myself so scared still. If anyone can shed some light on how long I will feel like this that would be great. I know we are all different, and no 2 surgeries are the same. I will keep praying for 100% healing, as I know my Lord will not fail me. Maybe I just need to be patient as it has only been 6 weeks? Although, 6 weeks seems like such a long time.
I am so sorry you are dealing with so much pain. As a registered nurse, and recent brain tumor surgery survivor I think it would be wise to discuss these symptoms with your medical team. Especially if your sinus drainage is clear and thin as this may be spinal fluid. Also, you may be able to change B/P medication to something you tolerate a bit better. I too have some mild pains from my surgery Dec 30th, but nothing to your extent. I really hope you feel better soon! I too have felt very alone since my surgery, but I promise you, you are not alone. Hang in there xoxoxo
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.
Hello. I actually had surgery to remove a grade 1 pilocytic astrocytoma from my right temporal lobe December 30th at Mayo. I did not know what type of tumor it was until after the surgery. I am 36 years old. I feel very blessed that it was operable and that they were able to remove the entire tumor. My doctor said 9 out of 10 times these types of tumors never grow back. So I am praying that it never grows back. I actually came across another 36 year old female that just had the same tumor removed from her parietal lobe last October and she is doing fabulous. Most research says these are pediatric tumors but apparently they happen in adults to.. That is unless I had the tumor since childhood and just did not know. I wish you all the best. If you have any questions please feel free to reach out to me.
Your story gives me hope! I'm 36 and just had surgery to remove a pilocytic astrocytoma from my temporal lobe Dec 30th. They were able to remove the entire tumor thanks to the good Lord. Now I'm just dealing with extreme anxiety... I pray it never comes back. Thank you for sharing your story. If you have any pointers on how to deal with my anxiety I would love to hear them.
Thank you for writing me. I actually had surgery last Friday the 30th.. Everything just happened so quick. I was in for an appointment Wednesday and scheduled for a right temporal lobe resection that Friday. Surgery was successful, as they were able to remove all of the tumor. Still waiting on pathology, and praying that it is benign and will never come back. I think I am healing okay. I have never had any surgery so I am not sure what to expect. I feel very weak and foggy and the right side of my head is numb, which feels weird. I am hopeful that these feelings go away. I am walking, talking, eating, and know who I am and who my God is so I am very blessed. How is your daughter doing? What type of tumor did she have? I am curious to know how long I will feel "weird." I think just the shock of everything that has happened so quickly and the anxieties that surround that is a big part of why I am feeling so different. I am sure the medications are not helping me. I stopped taking the narcotics and just take Tylenol but am still on anti seizure medications until tomorrow. I have never taken any medication before so that is weird for me. But again, all the glory to God for answering out prayers that this was operable and that Mayo was able to remove it so quickly. I had such a great team of doctors and nurses, they made all the difference in the world. Thank you again for writing me. I look forward to hearing from you =)
Thank you everyone for the prayers. It has been a whirlwind of a couple of weeks. I had my appointment last Wednesday the 28th and was scheduled for a right temporal lobe resection on Friday December 30th. It has been one week since surgery. Thank you Lord that they were able to remove the tumor. I am still waiting/praying for my pathology reports and am praying for whatever it was that it was benign and will never come back. I had the best team in neurosurgery work on me and in such quick time. God literally answered all of our prayers. I am so thankful for everyone at Mayo. Being in the healthcare field myself I can tell you that this experience has forever shaped the way I will practice medicine. Nurses and doctors have so much power over their patients fears, I had no idea how much of a difference they can make until undergoing this experience. I think I am healing well. I have never had any surgery before so am still unsure as to what to expect. I can tell you that I woke up from surgery knowing who I am, and how my family is, which is what I prayed for. I am walking, talking, and eating.. all blessings. The pain has not been too bad although the right side of my head is numb and sore. We are just praying for continued healing and great results. Thank you everyone for the kind words. The Mayo clinic is such an amazing place and I am truly blessed to have gotten in as quickly as I did.
Hello everyone. I have been doing the "watch and wait" approach on a 1cm non-enhancing tumor in my right temporal lobe for the past 2 and a half years. On my MRI last week the tumor enhanced for the first time. I do not know what type of tumor it is because we were just watching it... Now I am headed to Mayo in the morning to meet with a neurosurgeon.. My life has been flipped upside down within a matter of days. Has anyone else had a tumor in their right temporal lobe? I ask for lots of prayers of complete healing for all of us xoxoxox