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So Scared

Posted by @jkenser in Brain Tumor, Dec 27, 2016

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


Posted by @colleenyoung, Dec 27, 2016

Hi @jkenser, I'm glad you found us here at Connect. I can imagine that this is a very scary time for you, and all happening so fast! I'm tagging a few members from the Brain Tumor group to join this conversation and to be by your side as you meet with the neurosurgeon at Mayo tomorrow. Please meet
@cynaburst @kariulrich @upartist @jasonkwellls @parker80138 @user_che69bc66 @heatherdeuel. Heather's daughter had a tumor in the right temporal lobe. Everyone else in this group knows first hand what it is like to get MRI results that show a growth. We're here to support you, and you are in the hands of the best medical experts in the world.

Jkenser - what questions are looping in your mind? Can we help you get ready to for your appointment tomorrow, and perhaps calm the anxiety at least a little?


Posted by @kariulrich, Dec 27, 2016

@jkenser I understand the watch and wait mode! Always waiting for the next pin to drop. I do not have a same tumor as you, but I do have a pituitary ademona, a small brain aneurysm and avm. (These are all located in the brain). I have been monitoring them all for several years. Please know you are not alone, we are here for you. Take a deep breath. Now get out a notepad and write down all the questions that come to mind. I know this is happening so fast and your mind must be racing, but the better you are prepared for your appointment the better choices you will be able to make. Do you have someone going with you? Take one moment at a time and keep taking deep breaths when you get overwhelmed and scared. One question you might want to ask is how does a tumor on the right temporal affect you? What kind of symptoms can you expect and what are the treatment options? There are no stupid questions so ask away until you fully understand. You will be in my thoughts. Please remember again, you are not alone.


Posted by @rosemarya, Dec 27, 2016

@jkenser, I know how to watch and wait, and I know the fear when life turns upside down, and I know how to pray. I will remember you tomorrow in my prayers. Rosemary


Posted by @cynaburst, Dec 27, 2016

I hope that your appt. at Mayo helps you understand about your tumor and the implications. Wishing you the best.


Posted by @heatherdeuel, Dec 27, 2016

Praying for you as you wait for your appointment. My oldest daughter had a tumor removed from her right temporal lobe. If you have any specific questions, please do not hesitate to ask! (She is doing well. Medically, great... But there are some side-effects from the surgery.)


Posted by @colleenyoung, Dec 27, 2016

Welcome back to Connect, Heather. Thank you for writing to JKenser. Your offer to answer questions means a lot, as I'm sure you know.


Posted by @jkenser, Sat, Jan 7 at 5:46pm CDT

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 =)

-Jessica Kenser


Posted by @dawn_giacabazi, Dec 27, 2016

Sending many prayers. I have also been in a watch and see waiting game. Such a horrible position to be in. I pray your wait is over soon. I go back next month.


Posted by @hopeful33250, Dec 31, 2016

@jkenser Wishing you well. Keep us posted and let us know how we can help and pray for you! I'm sure that your appointment at Mayo will answer a lot of questions, I understand that Mayo has a great staff of doctors! Best wishes and keep in touch! Teresa


Posted by @amkaloha, Sat, Jan 7 at 10:17am CDT

Just read this but will be praying that you get the answers you want.


Posted by @hopeful33250, Sat, Jan 7 at 12:06pm CDT

@jkenser I hope that your appointment went well at Mayo. When you have time, please let us know how you are doing. Best wishes for the new year!


Posted by @jkenser, Sat, Jan 7 at 5:39pm CDT

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.


Posted by @lindalb, Tue, Jan 17 at 12:28pm CDT

So glad all went well for you ! Keep us updated xo


Posted by @hopeful33250, Sat, Jan 7 at 7:08pm CDT

@jkenser Thanks so much for the update! I'm so glad that all went so well for you. Keep us posted as you continue to heal. At Mayo Connect, we care.


Posted by @blindeyepug, Sat, Jan 14 at 9:17pm CDT

@jkesner I am keeping you in my prayers. So, so sorry you are dealing with such a difficult situation. Please know people care and you are not alone.


Posted by @rosesareredmylove2016, Tue, Jan 17 at 7:04am CDT

@jkesner: So happy for you that surgery went well. It will be 3 years March 10th 2017 that I will have had my brain surgery. It was a very scary time, an unsure time, But as is life. It went well. I had a 3.4 centimeter tumor on my left side brain stem causing Hydrocephalous. the Tumor itself was Begine. It has although grown in size since my surgery.I deal not with headaches, but with imbalance in my daily life. Some days I feel my head is floating..Some days it feels like there is a roaring waterfall inside my head...All after effects from surgery and loss of hearing on my left side. I thank The Good Lord each and every day for his Blessings in my life.. Could be much worse,,,


Posted by @hopeful33250, Tue, Jan 17 at 8:12am CDT

@rosesareredmylove2016 Thanks for sharing your story of surgery and recovery. Perhaps others in our group would be interested in learning more about the type of benign brain tumor you had, did the pathology report give it a specific name? Once again, thanks for sharing, I applaud the exceptionally positive attitude that you share! Blessings to you. Teresa


Posted by @rosesareredmylove2016, Tue, Jan 17 at 1:24pm CDT

Hello @hopeful33250:
Very nice to hear from you. My Tumor was a Scwannoma.Its a begine tumor.1 in 100.000 people get them.Its been a journey. It was non cancerous.Thank the LORD... Although I am left with no hearing in my left ear and imbalance issues. Every day is different. I am well and try to be positive each and every day...


Posted by @amkaloha, Tue, Jan 17 at 3:30pm CDT

I was happy to hear that all is well. It is interesting to hear your tumor was a Scwannoma, as that is what they call acoustic neuromas. I had one done by Gamma Knife Radiation in 1997. The good news is that they do not grow back and usually shrink as we get older. I also was left with no hearing in my left ear and imbalance issues, but that is a small price to pay for what could have been. Sending you blessings and prayers.


Posted by @cynaburst, Tue, Jan 17 at 10:46pm CDT

Just a point of clarification...though the majority of acoustic neuromas (also called vestibular schwannomas) usually do not grow back, sometimes they do. Therefore, most doctors recommend continued follow ups every so often forever. I had my tumor surgically removed in 2002, and I continue to have scans every five years or so even though I am 15 years out.


Posted by @rosesareredmylove2016, Wed, Jan 18 at 6:23am CDT

hey @cynaburst.
Yes you are sooo right. Its been 2 years since my surgery, and I have been having a MRI once a year to see if the tumor is growing, and although my Surgeon said they rarely grow back...HaHa...Mine is growing, so now I watch for signs effecting my balance, eyes or other issues its growing could cause..Saying Vestibular Swannomas never grow back is like NOT true.....


Posted by @amkaloha, Wed, Jan 18 at 9:37am CDT

Rosesareredmylove - do you think it could be shrunk using Gamma Knife radiation? It's not as invasive as surgery and I know at the Gamma Knife Center in Providence, RI, they did this. I had mind done there and it has been shrinking every year. Now I only have MRIs every 5 or so years and it is still shrinking. Just something else to throw into your idea cart! Wishing you well as always.


Posted by @rosesareredmylove2016, Wed, Jan 18 at 2:03pm CDT

Hi @amkaloha:
I've been told if the tumor continues to grow back. I will have the option of spot radiation to remove it from my brain stem..The issue is., its resting on my nerves and my surgeons are hesistant at this point..

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Posted by @hopeful33250, Tue, Jan 17 at 2:06pm CDT

@rosesareredmylove2016 Thanks for the additional information about the tumor. Getting these rare tumors can be quite a challenge, I know. I appreciate your sharing. Best wishes and keep in touch with Mayo Connect.

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