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Permalink Reply by Candy Wilson on December 14, 2011 at 4:56pm

Hi Tom...thank you so much for responding and sharing what you have been through.  And thank you for your prayers, too!  I am a person of faith, with that faith being in the Lord Jesus.  We know that He has a plan in mind and that He has a purpose for all of this, if nothing else than to bring glory to Himself through it all.  

Wow, in some ways it might be better to not have time to really think about it like was the case with you.  Now I get to dread the surgery! (ha ha)  No, but seriously, I do have a great NS named Dr. Mickey.  He is vice-chair of neurosurgery at UTSouthwestern which is this huge teaching hospital in the Dallas area where I live.  He has been doing this for many years and has a great reputation.  And also, the guy happens to be a really nice person too. 

So how long did your recovery time take, like how long before you could get up and go do fun things, drive, ride around, go out to eat with your wife and family, etc etc  Is your personality still the same?  Do you still feel as smart as you did before?  I know you said you had to modify some things...like what for example?  The reason I am asking is that I lead a really active life and the thought of not being able to do what I do now is really depressing.  I am a musician, and I want to still be able to play my music.  I love exercising and working out, especially doing Zumba, which is sort of like dancing and aerobics combined.  I also love sports, and if I can't go to games and climb to my seat in the stadium, that too would be very depressing. 

Do people look at you differently now that you have had the surgery?  I found that at church for example, in 2009 when I told people I had been diagnosed with 2 brain tumors, people treated me differently, like I was really delicate, or they took pity on me, or that something was really wrong with me.  I know they mean well, but I feel like I've become "Brain Tumor Girl."  You know what I mean?  I mean how many times does your normal person run across someone with a brain tumor?  Not real often.  So when you do, it's like "Whoa!!!!  A Ba--rain tumor!!!"  You know what I'm saying?  Wow. 

That being said, I do have lots of support from people who just love and care about me, no matter what and won't treat me like I'm a weirdo with some dread disease or something.  Especially my husband Pete! 

Anyway, thank you for listening and giving me your feedback as I get used to the idea.  Sigh. 

You live in Canada?  Wow.  Eh??  ha ha ha  I get flute tips from a lady named Jennifer Cluff who lives in Canada.  She was principal flutist of the Vancouver Symphony for years and plays so well.

Take care, Candy  :)

 
Tom Moran said:

Hi Candy, welcome, and happy you found this site.  Your story sounds so much like mine.  Biggest difference is they didn't catch mine until emergency surgery was required.  My right leg was dragging, cognitive deterioration, tremors, speech problems...  So yeah, get the surgery.  You will be you!!  Every recovery is different depending on tumour type, size, location etc...so many variables.  Will you have some post-surgical deficits?...possibly is the only answer.  I have several but like somebody told me on the golf course this summer, "you are on the right side of the grass"!!  Yeah, I was able to golf but like many things with some modifications and not always the same as before.  I am 15 months out of surgery for removal of two meningiomas in the falx and things are still changing some.  Still looking for my "new normal".  You have been with your NS for a couple of years to I am assuming you are comfy with him which is very important...after all he is the one who will be "cracking your head open" and messing around inside!  Everything happened so fast for me that there was no option to investigate anything about brain tumours, surgery etc.  Your concerns matter today and in the future, please remember this.  Don't be scared to speak up, question, advocate for yourself and most especially reach out to those who love you for support as and when needed.  I am scared of the answer to where would I be without them.  You are already showing good wisdom and courage in your approach to this.  In the end, listen to your NS and trust in his knowledge and skills...also if you are a person of faith prayers are always good so some of these your way kid!!

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Permalink Reply by John Kerastas on December 16, 2011 at 12:55pm

Dear Candy,

The idea of brain surgery is overwhelming. A whole range of emotions come bubbling up that you wish you didn't have to address.  At the same time, your surgeon is right - its easier to deal with this now than later.  I wish I had learned of my meningioma tumor earlier than we found it. By the time we found it, it was as big as your fist...which made the surgery longer and the recovery longer.  It also meant that my terrific neurosurgeon couldn't remove all the tumor. It takes some courage to say "yes" lets do it, but you sound like somebody who can say "yes".  After surgery you will be changed, but you will be in a better place than if you don't address it. It sounds like a "no win" situation - but you are really taking the "winning" path.  You need to accept the idea that this is a preemptive move to keep you as healthy as possible.

All the best,

John

PS - Feel free to visit my blog - http://johnstumor.blogspot.com/ - to learn more about what happened to me.

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Permalink Reply by Amanda on December 17, 2011 at 11:08am

Hi Candy! I had energency surgery so I don't know what it would feel like to have to mentally, emotionally and spiritually prepare for surgery...I will tell you what I know to be true....you are stronger than you can even imagine....the body is built to heal and can do incredible things....a sense of humor is essential...and, most importantly, you are not alone. Having faith is important, too. My four-year tumor-versary (oh yeah, it gets celebrated!) is in March. I promise you things get better. Be patient with yourself. Try not to get attached to timelines...your own or the doctors. Just take it day by day, moment by moment...there will be good things, too! When I was disharged from physical therapy, she suggested that I learn something new, challenge myself....so I began to learn how to play guitar....music is so healing and I never would have started otherwise! Blessings, Amanda.     

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Permalink Reply by Debbie Higgins on December 17, 2011 at 7:52pm

Hi Candy,

I just wanted to write and say that I am a 2 year survivor of surgery to remove what they could of my brain tumor. It is very overwhelming, but like you, I have much faith and wanted Jesus to be glorified through it all....and He was!  The surgery is really not as bad as you would think. My surgery lasted less than 2 hours, I was in ICU for less than 24 hours and in the hospital a total of 5 days. It is painful for a few weeks, but stay on top of it with your pain meds and ice packs. I was very fortunate not to have any complications at all.

Recovery does take a while, and each person is different. I have had no personality change and I have the same abilities as before. I had to have 30 radiation treatments as well, so I had a lot more fatigue and hair loss than one usually has from just surgery alone. I would say a 12 week recovery period is to be expected, with 6 months until you can get back to full throttle with your exercise. But again, it varies with every person, could be more, could be less.

Please do not wait until it is causing you many symptoms and an emergency. Mine was an emergency and it was very hard on my family. It sounds like you have a great support system and a lot of faith. That will help get you through it. Good luck!

Debbie

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Permalink Reply by Debbie Higgins on December 17, 2011 at 7:53pm

I agree with you Amanda, true words!

Debbie

Amanda said:

Hi Candy! I had energency surgery so I don't know what it would feel like to have to mentally, emotionally and spiritually prepare for surgery...I will tell you what I know to be true....you are stronger than you can even imagine....the body is built to heal and can do incredible things....a sense of humor is essential...and, most importantly, you are not alone. Having faith is important, too. My four-year tumor-versary (oh yeah, it gets celebrated!) is in March. I promise you things get better. Be patient with yourself. Try not to get attached to timelines...your own or the doctors. Just take it day by day, moment by moment...there will be good things, too! When I was disharged from physical therapy, she suggested that I learn something new, challenge myself....so I began to learn how to play guitar....music is so healing and I never would have started otherwise! Blessings, Amanda.     

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Permalink Reply by John on December 17, 2011 at 9:55pm

Hi Candy,

Sorry that you are going through this. I was in your shoes just several months ago. Initially I had thought about doing the wait and see approach, but my circumstances was such that my first biopsy was inconclusive and then I started to have mini-partial seizures. These two things prompted my decision to have the craniotomy. The craniotomy served two things. First, it would determine on more definitive terms what type of tumor I had and two, it would decrease the chances of having a grand mal and potentially more consequences down the line. It didn't help either that the neurologists I saw told me that the location of my tumor was in prime real estate to cause acute episodes. Luckily I never did have a grand mal before my craniotomy and haven't had one yet. 

But yes, I had the same thought as you when it was first suggested that I have the craniotomy. However, because I had had a needle biopsy, my worry soon was less about the craniotomy itself and more about the recovery afterwards. What helped me in stressing less about the craniotomy itself was because I found a neuro-surgeon that I really trusted and believed in. This is important I believe and I'm glad it seems that you've found someone that you trust. It goes a long way in making the circumstances we've found ourselves in be more bearable.

Like Tom, I am still in the process of finding my new normal. I find that taking one step at a time on my road to recovery is the approach that works for me. Currently, I am undergoing radiation therapy treatment and therefore it's my focus right now. Once it is done, my next step will be to piece back things together the best that I can one thing at a time. I'll be honest and tell you that I haven't been able to do some of the things I want at the level I want to. Sometimes I forget though what a major trauma my brain has gone through and forget that it needs time to sort itself out. I need time to sort myself out. It can be frustrating, but understanding that my recovery will just take time alleviates this frustration. There will be some good days and some bad days, but time is key.

Overall, although I can't ride my mountain bike at the moment, will be missing this year's ski season, can't hike for too long, have anxiety problems in big crowds, and trouble processing too much audio and visual stimulation, I am still me. I do realize that like anything, we are always changing and adapting ourselves based on our experiences. I'm not sure how this experience will affect me, but I believe that at the core, at my base, I am still the same. I've told myself, like any other experience I've had, just deal with it as best I can and move on. If I sound a bit stoic, it's because I am by nature, good or bad...ha

As Debbie stated, recovery can be different for each person. For me, the physical recovery (i.e., the point where I had no more pain) from the craniotomy itself took about 3-4 weeks. I had to take steroids and vicodin to control the pain from the incision and cranial pressure. However, another member here only had to take Tylenol! to control her pain which was great for her. Just make sure to be honest with yourself and let people know what you need during recovery. As Tom stated, you're your own best advocate.

Anyway, my first biopsy was an emergency so I had no time to think about it. My second biopsy (i.e., craniotomy), I did have time to think about it. On some level, I felt that it was kind of like that film, the 25th Hour, where each passsing day was a count down to going to prison. In my experience, I've realized that a lot of things will come down to just being comfortable with whatever decision is made because brain tumors can be such an inexact thing. There are no definitive rights and wrongs. So what helped alleviate some of my concerns my craniotomy came closer and closer was making myself more comfortable in my decision to have it done. I did this by, as previously mentioned, being my own best advocate in doing as much research as I can, bouncing ideas and issues between my neuro-team and I, and of course reading other people's experiences which is in itself reassuring and comforting.

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Permalink Reply by Ed on December 18, 2011 at 8:17am

Hi Candy,

Everything said is good advice, I had MRI's 3 and 6 months apart for almost 3 years then went to a Drs' appt in Jan 07 and he said that I should have surgery. I'm thinking sometime in the summer but he says no, in about 3 weeks. Yikes, so my wife and I look at each other and talk about it for about a minute and gave the go ahead. Recovery is different for all so don't get depressed when you look or hear about other people and how their doing. Don't try and fool yourself though, there will be pity parties, good days and bad ones. Think about YOUR recovery, it will happen. I ran a marathon 10 months to the day after surgery.  Our daughter - 21 - told me I looked like Frankin Daddy and was disappointed because my scar it bigger than hers. Kids...

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Permalink Reply by Rebecca Ann Baldridge on December 23, 2011 at 5:22am

Hi Candy,

So glad you found this site.  I am originally from Dallas and am very familiar with UTSouthwestern.  As a matter of fact...my NS who is now in Chicago is from Texas and was  a teacher at UT Southwestern, so you can only imagine that when I met him I totally fell in love with his amazing Southern accent.  I felt like I was talking to my grandpa!!  I found out August 2010 about my brain tumor and on 9/1/201 I met with Dr. Hunt Batjer at Northwestern University in Chicago and scheduled surgery for 9/9/2010.  I had also been to Loyola University and met with their head of NS--he's the one who confirmed I had a brain tumor.  I had all the same feelings as you have....what will happen, will I be myself?  I will say this, after hundreds of people praying for me and finding the strength somewhere deep inside I knew this would be the right thing to do.  I had surgery on a Thursday morning, was in ICU for one night, transferred to a regular room and released on Monday by noon.  I actually made it home to get my daughter off the bus that afternoon.  My surgery was over 4 hours, and I was blessed they got all the tumor and do not have to EVER get another MRI again.  The did my surgery prone (I was laying on my stomach) and my scar goes from the bottom of my neck up to the middle of my skull.  With my hair grown in, you can hardly see the scar. 

As far as am I myself?  Absolutely yes.  I do get tired easier, but hey,  I have a 5 and 8 year old...they are exhausting too, so I'm not 100% it's from the BT, but it's a good excuse :)  I look at life differently.  Many people don't know their own strength, but when you tell people you had a BT removed, they can see  how strong you are and your will to live!  There are times I feel guilty and a bit depressed, like why did this happen to me, but I truly believe it's in how you look at things.  Will you be doing Zumba HECK YES!  I was a pilates fanatic before my surgery and I was back on the pilates reformer 10/12 weeks after surgery.  I wasn't going to let a silly little surgery stop that! 

I do notice when I'm reading a passage aloud, sometimes my eyes skip around, or my words get jumbled (not sure of a better way to describe it).  You will know your limitations.....but most importantly know how strong you are to first of all, live for 2 years with a brain tumor and now you need to do what the NS recommends, because I can attest to the fact at UT Southwestern, they're one of the bests!!!  I will be praying for you and sending you strength!  xoxo

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Permalink Reply by Candy Wilson on December 23, 2011 at 10:23am

Hi Rebecca, Thank you so much for your encouragement.  You helped me tremendously!  I know it is the right thing to do deep down...I know what you mean. 

My guitar teacher lives in the Hare Krishna temple in Chicago and we do lessons via Skype actually.  I have never been to Chicago but hear it is a really cool place.

Thanks again for your words of wisdom and I hope I can talk to you more about the surgery later.  My plans are to try to have the surgery in April.  We have a trip scheduled to Israel Feb.26 to March 9 that we have paid alot of money for and can't get a refund, and my doc says it's OK to go ahead and take the trip. 

I hope yall have an awesome Christmas and many blessings to you and your family!!   Take care, Candy  :)
 
Rebecca Ann Baldridge said:

Hi Candy,

So glad you found this site.  I am originally from Dallas and am very familiar with UTSouthwestern.  As a matter of fact...my NS who is now in Chicago is from Texas and was  a teacher at UT Southwestern, so you can only imagine that when I met him I totally fell in love with his amazing Southern accent.  I felt like I was talking to my grandpa!!  I found out August 2010 about my brain tumor and on 9/1/201 I met with Dr. Hunt Batjer at Northwestern University in Chicago and scheduled surgery for 9/9/2010.  I had also been to Loyola University and met with their head of NS--he's the one who confirmed I had a brain tumor.  I had all the same feelings as you have....what will happen, will I be myself?  I will say this, after hundreds of people praying for me and finding the strength somewhere deep inside I knew this would be the right thing to do.  I had surgery on a Thursday morning, was in ICU for one night, transferred to a regular room and released on Monday by noon.  I actually made it home to get my daughter off the bus that afternoon.  My surgery was over 4 hours, and I was blessed they got all the tumor and do not have to EVER get another MRI again.  The did my surgery prone (I was laying on my stomach) and my scar goes from the bottom of my neck up to the middle of my skull.  With my hair grown in, you can hardly see the scar. 

As far as am I myself?  Absolutely yes.  I do get tired easier, but hey,  I have a 5 and 8 year old...they are exhausting too, so I'm not 100% it's from the BT, but it's a good excuse :)  I look at life differently.  Many people don't know their own strength, but when you tell people you had a BT removed, they can see  how strong you are and your will to live!  There are times I feel guilty and a bit depressed, like why did this happen to me, but I truly believe it's in how you look at things.  Will you be doing Zumba HECK YES!  I was a pilates fanatic before my surgery and I was back on the pilates reformer 10/12 weeks after surgery.  I wasn't going to let a silly little surgery stop that! 

I do notice when I'm reading a passage aloud, sometimes my eyes skip around, or my words get jumbled (not sure of a better way to describe it).  You will know your limitations.....but most importantly know how strong you are to first of all, live for 2 years with a brain tumor and now you need to do what the NS recommends, because I can attest to the fact at UT Southwestern, they're one of the bests!!!  I will be praying for you and sending you strength!  xoxo

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