Survived a Pterional Craniotomy and a Brain tumor removal.

[missy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Cheryl, I am glad you are making progress and that you have "graduated" to the next level. That is all very heartening news. Sending you continued well wishes. I know it is challenging and I know it is hard to be patient as you just want it to be all over so you can be your old self again. (((Hugs))) and dust for continued progress with minimum pain. And I hear you on wanting everything to stay in it place. That is my fear too LOL. Hopefully all the plates and screws will stay put just like they are supposed to!

 

[PattyCo]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Missy and Cflutist, PS's own bionic women .

Cflutist my mom does something on the computer called Luminosity and it is an interactive program that helps improve mental skills. Here is the link http://www.lumosity.com/landing_pages/796?gclid=CMGbor-D18QCFQgyaQodMCsA4g . She says that as you play it, it will learn what your weaknesses are and provide extra stimulation to those areas. Being in her 70's, hers are memory and she swears that Luminosity has helped her with it. She says it is so fun to do, too.

 

[CRYSTAL24K]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Just thinking about you and hope that you are doing well!

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Just thinking about you and hope that you are doing well!

Crystal24K - Just woke up from a 4-hour nap to see this, thank you for your concern.

I am too embarrassed to admit that I had three pity parties this last week where I just sat there crying uncontrollably.
The Physical Therapist said it was okay to have pity parties, but not to have them in public She says that I am progressing well, in fact she said that after working with many brain surgery patients that she would have thought that I was at the 5-week mark instead of my 3-week mark after knowing my actual craniotomy date.

I am just tired of my pain: my aching temporalis muscle that hurts even more when I chew or talk too much (although dear hubby loves my silence). Because of the location of my walnut sized tumor, he had to cut and re-attach it.

There are shooting pains at the incision site that happen just out of the blue. The site on my scalp where the neurosurgeon took the graft from my pericranium (the layer of my scalp closest to my skull) to cover the hole left from the excised tumor (that was attached to my dura layer) is extremely tender. Just gently running my fingers through my hair stubble feels like thousands of pins poking at me.

Then there are the throbbing headaches from within my head that come and go. The discharge notes say that all this stuff is to be expected and is NORMAL.

Crystal, did you feel these things too? Or am I just being a big baby?

Neurosurgeon said it could take 8 weeks to recover from the surgery, while the PT said the other day that it could take 6 - 8 months to completely feel normal again. My impatience in the matter has got me extremely frustrated.

I am trying to wean myself from the Percocet/oxycodone. The original prescription was for up to 12 pills per day. I was averaging 6 - 8 daily when I first got home, but am now at 4 - 5. I've tried substituting OTC Tylenol at bedtime (thinking that my brain should be sleeping) but sometimes still wake up in the middle of the night with a headache. Some of my FB friends think that I am trying too hard in this department and that I should just take the pain meds when I need them. The Advice Nurse agrees with them and says I should be proactive and not "chase" the pain. I just don't like the big C side effect of narcotic pain meds which is why I want to get off of them ASAP.

Enough venting.

On a happy note, I did eat a small HPD Dark Chocolate candy bar today.
Wink encloses them as a small gift if you buy things from him in the cold months. I was saving it for a special occasion and thought Easter would be a good time to eat it. I took delivery of my CBI diamond in December so I got the chocolate. I took delivery of both bracelets in the summer, so no chocolates.

Happy Easter everyone, hope you all had a wonderful day.

 

[momhappy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Awwww…cflutist, you are certainly entitled to vent - you've been through so much. Big huge hug to you!!!! I hope that you continue on your road to recovery. Keep us posted with your progress

 

[CRYSTAL24K]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Sending you tons of hugs, CFlutist!

My most memorable pity party was on Thanksgiving- about 4-5 weeks post surgery. My father, at the doctor's instructions, required me to come down to sit at the table for dinner. When Thanksgiving came around and I was summoned for dinner, I cried. I bawled. I refused to come downstairs. No one brought me any food, and after a long time sulking, I reluctantly came down to the table to eat. Super embarrassing. I wish I could forget that. I didn't feel like celebrating Thanksgiving (my favorite holiday to spend visiting and celebrating with friends and family), I wasn't feeling or looking the way that I wanted to and I was sad. I was frustrated and angry because I knew that my family had to change the massive dinner that they throw annually to just immediate family, because of me.

CFlutist, you are doing great. I cannot stress that enough! You have a can-do attitude that is admirable! Your reports from your check-ups are fantastic! You are a fighter and you are doing a great job.

While I was going through recovery, I just holed up in a room at my dad and step-mom's home in LI. I had days where I felt fantastic and thought, this recovery thing is so easy and I am so bored and I can't wait to go back to work. I also had several days where I was mentally, physically exhausted and sick and tired of laboring to do things that used to be so simple. I also had several days where I thought what was the point, why even try pushing myself or doing my exercises- but my support team really helped me and forced me to keep my spirits up.

I had those same feelings and looking back on it now, several years past recovery these memories which are so present and glaring to you are dim and hazy to me. All of this to say that what you are feeling is normal and yes, it will pass, so no- there is nothing wrong with your feelings.

It took me about 8-12 months to feel normal. I was functioning at a normal level at about 6-8 months, but I didn't feel normal until about a year after the surgery. I was always questioning my brain and second guessing my decisions, but everything was fine. It just took me a while to trust my new and improved brain!

I did not try to wean myself off of the pain killers. I took them as prescribed. When my doctors recommended that I stop taking them, I stopped taking them- no problem.

Your recovery journey is unique to you and you are doing a terrific job!

 

[Sundial]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

What an ordeal you are going through Cflutist, I think you are entitled to the occasional meltdown. It sounds like you are making excellent progress with your recovery though and that you are receiving good care so things will get better and better. Sending you healing dust and virtual hugs!

 

[momhappy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Just checking in to see how you're doing, cflutist?

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Just checking in to see how you're doing, cflutist?

Well I had two meltdowns this week.

First, I've posted in the past that we volunteer at the local Police Dept. doing crime analysis.
I was embarrassed at our monthly PD Volunteers meeting this week. They hand out pins for service anniversaries (it was my 3rd year) and call out names one by one where you are supposed to walk up front, shake the hand of the LT who hands you your pin and then remain up front for the group photo. They called my name, I got up to walk up there with my hiking pole, but I lost my balance and stumbled. Because of that my boss asked another volunteer to get a chair for me to sit in until the rest could be called. How embarrassing, I felt like crying right then and there. I did break down and cried like a baby to my boss (she is like a surrogate mom to me) after the meeting relaying my frustration with my pain since my surgery. Then she tells me that she couldn't even get out of a chair for 7 weeks when she broke her arm last year.

Then I ran out of pain meds earlier this week because USPS did not deliver a hardcopy Rx signed by my neurosurgeon until yesterday when it was mailed last Friday (5 business days to go 70 miles within the San Francisco Bay Area). I have been weaning myself from these too.

My PS friends are telling me that I am pushing too hard to be "normal" again so soon. I have been averaging at least 10K steps or 4 miles per day of walking but have also been in pain. Walking that much is raising my BP and heart rate probably contributing to the throbbing headaches I still get. So, I am going to listen to them and dial it back to 2 miles a day, and only on the flat ridge top where we live (and not all the way around the hill with a 231 ft. elevation gain/loss). If that doesn't work then I will cut back some more because truthfully, I'm tired of being in pain. It has taken an emotional toll on me as well.

Thank you all for your continued "dust".

 

[momhappy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Thanks for the update. You've been through soooooo much. And, yes, I agree with the others - it sounds like you're pushing yourself too hard. You need to give yourself time to heal. I'm glad to hear that you're willing to cut back on your walking if need be. Please do take good care of yourself and I'll be thinking of you.

 

[missy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cheryl, yes, you are pushing yourself too hard. One very important fact my PT and surgeon shared with me is that if I pushed too hard during recovery the setback could be hard and long. So please listen to your body and one day at a time and baby steps. It truly is slow and steady that wins this race. Sending continued healing vibes and hugs your way. You're doing great and just take it more slowly and listen to your body.

 

[CRYSTAL24K]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

... please listen to your body and one day at a time and baby steps. It truly is slow and steady that wins this race. Sending continued healing vibes and hugs your way. You're doing great and just take it more slowly and listen to your body.

I agree with Missy's eloquent post.

You are doing such a great job and you are an inspiration to the people around you. Try to go easy on yourself and show yourself the love and tender care that you would give to someone else in your situation.

Sending you tons of hugs and continuing to pray for your healing and well-being.

 

[minousbijoux]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Wow, cflutist, you are a champ! You sound pretty hard on yourself (which I bet you already knew) but it also sounds like you are learning what you are capable of and pushing yourself right up to the limit. Good for you. No wonder you are recovering so quickly. And I get that just because people tell you to "take it easy," or "be kind to yourself," that given who you are it may not be easy to do.

As to your "meltdowns" (which, btw, sound like a normal part of my every day life ), can you reboot with a new perspective and see them more as ways in which you are stretching yourself, your comfort zone, and your brain and therefore, a necessary part of the process?

Hugs to you.

I am in the SF Bay Area - East Bay if you need help. Would be happy to.

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

It was a month ago today that I underwent a craniotomy and a walnut sized brain tumor removal. I feel better today (but still with some pain) ... even worked for 3 hours this morning at the PD. Measured my new hair growth and it was 11/16 or .6875 inches. Assuming that it continues to grow at the same rate, it will take 14.5 months to reach my normal 10" hair length. That means that I will still look a little strange on our October 2015 cruise, but that I should be almost be back to normal on our April cruise to Hawaii in 2016. I still have a ways to go for my recovery process, but I am grateful for what I have accomplished so far. I would like to thank all of the PS community for your continued support and "dust" during my journey.

Yesterday I had another meltdown:
Just found out that a former co-worker just passed away last night from cancer. Two weeks ago we were exchanging emails about what to do about my hair (she said she went au naturel in the summer but wore a hat in the winter because of the cold). I thought that she was in remission and she didn't tell me that she was battling cancer again. This made me feel so small, here I am complaining about my brain surgery pain when my friend is gone before her time (she had just retired last year). This really puts life in perspective.

 

[momhappy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

I'm sorry to hear that you lost a former co-worker Don't be too hard on yourself - you've gone through an awful lot yourself.

 

[Smores84]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Cflutist,

I admire your strength and am glad that you're healing and getting stronger with each day!

Please ignore my questions if they're too intrusive. I have been researching these questions for my mother who is undergoing craniotomy in 3 days.
- did the symptoms that you were having before surgery improve?
- did your neurosurgeon recommend anti-seizure prophylaxis for your case?
- what about steroids and antibiotics after the surgery?
- Your surgeon was skilled and successful at removing the entire tumor (so thankful!). When does he recommend doing a follow up scan?

Again, please ignore these if they're intrusive or if you're busy.

I am looking forward to hearing more of your continued recovery, it gives me some hope.

Best wishes!

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Cflutist,

I admire your strength and am glad that you're healing and getting stronger with each day!

Please ignore my questions if they're too intrusive. I have been researching these questions for my mother who is undergoing craniotomy in 3 days.
- did the symptoms that you were having before surgery improve?
- did your neurosurgeon recommend anti-seizure prophylaxis for your case?
- what about steroids and antibiotics after the surgery?
- Your surgeon was skilled and successful at removing the entire tumor (so thankful!). When does he recommend doing a follow up scan?

Again, please ignore these if they're intrusive or if you're busy.

I am looking forward to hearing more of your continued recovery, it gives me some hope.

Best wishes!

Based on my research, answers to your questions really depend on the size, location, and type of brain tumor. Best to ask her neurosurgeon. For me I was receiving anti-seizure meds via IV during the procedure along with antibiotics. I did take Decadron (a powerful steroid) for two days prior to my surgery and I did notice that it shrank the tumor by 1 mm in all 3 dimensions when I compared the measurements on my prior MRI report against the Post Op pathology report. For my case I did not have to take oral anti-seizure meds or steroids Post-Op but have read that other patients do need to. Again, it all depends on their individual case.

I did my first follow-up MRI scan the very next morning. I was so doped up on pain meds that I slept through most of it. However based on the location of my incision, I didn't get the foam block near my right ear as I previously got on the other MRI (the incision starts in front of my right ear), so it was very loud and I ended up with a throbbing headache. I see my neurosurgeon in less than 2 weeks for my follow-up appointment and will find out how often I have to do MRI scans in the future.

Good luck to your mom. Sending positive thoughts, prayers and "dust" your way.

 

[sarahb]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cflutist, I hope you are feeling better today, progress I know can be slow, & daily improvements can be minuscule, but progress nonetheless. Having gone through the hip most recently, everyday brings more 'normalization'.

I just finished a face chat with my youngest sister, who has a meningioma above her right ear, which they are removing tomorrow. Understandably she is an emotional wreck. The tumor itself is the size of a golf ball. If it is a grade 1, no radiation, if it is a grade 2, she will undergo radiation.

Your surgical incision looks very similar (as far as location) as to what she's described as her surgeons explanation. I'm wondering what exactly, did they call your tumor? Wondering if it was a meningioma as well.

I've been following your posts & relaying your progress & experiences to my sister. She does not want to see your thread, as she doesn't want to see the pictures. She's really frightened of the surgery, & of the possible outcomes.

I hope your recovery is smooth sailing, at least the HUGE bumping the road is now behind you, & what a relief to find out it was benign, congrats on that front! I keep telling her once she is finished with the surgery, she will find relief & recovery, altho hard, is something she can get through with time. We are praying she has a benign outcome as well.

 

[Catmom]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

I am so sorry to hear about your co-worker and friend. You are such a strong lady and I greatly admire how you are handling this. I am so happy it was benign for you. Please take it easy and don't push too hard. We want no set-backs!

 

[Smores84]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Cflutist,

Thank you so much for answering my questions.

I will be keeping you in my thoughts everyday. I greatly admire how you conquered this with courage and grace. You've got lots of us cheering you on!

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cflutist, I hope you are feeling better today, progress I know can be slow, & daily improvements can be minuscule, but progress nonetheless. Having gone through the hip most recently, everyday brings more 'normalization'.

I just finished a face chat with my youngest sister, who has a meningioma above her right ear, which they are removing tomorrow. Understandably she is an emotional wreck. The tumor itself is the size of a golf ball. If it is a grade 1, no radiation, if it is a grade 2, she will undergo radiation.

Your surgical incision looks very similar (as far as location) as to what she's described as her surgeons explanation. I'm wondering what exactly, did they call your tumor? Wondering if it was a meningioma as well.

I've been following your posts & relaying your progress & experiences to my sister. She does not want to see your thread, as she doesn't want to see the pictures. She's really frightened of the surgery, & of the possible outcomes.

I hope your recovery is smooth sailing, at least the HUGE bumping the road is now behind you, & what a relief to find out it was benign, congrats on that front! I keep telling her once she is finished with the surgery, she will find relief & recovery, altho hard, is something she can get through with time. We are praying she has a benign outcome as well.

Sarahb,

Yes pathology came back with a Grade I meningioma. My neurosurgeon said that it was in a favorable position, but was too large for Cyberknife targeted radiation, hence the craniotomy instead.

I totally understand how frightened your sister is. Although I've had 3 prior surgeries, this was by far the most frightening of all due to the long laundry list of complications, and what those complications could have been. Everyone is different and I totally respect your sister's wishes, but I was the complete opposite of her. I immersed myself in researching everything that I could (kind of like buying a diamond on PS). Although difficult to stomach, I watched YouTube videos of craniotomies. I knew that I would get my head shaved but not how much (didn't even discuss that with the neurosurgeon because I wanted him to take what was necessary for infection control), what the Mayfield clamp was and that I would end up with a divot on my forehead and 2 other puncture wounds on the back of my head. My surgeon told me of the temporalis muscle soreness post op (but I didn't realize that it would make eating such a chore, great way to lose weight though). What I didn't know was that he would take a graft from my pericranium to cover the hole left in my dura when the tumor and its attached dura was cut out and sent to the lab (some surgeons use synthetic dura to close that hole).

I don't know your sister's age, but she may not have any of the problems, or less severe occurrences of what I am experiencing Post-Op as I am in my late 50s. Good luck to her, sending you and her positive thoughts, prayers, and "dust" as well.

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

I am so sorry to hear about your co-worker and friend. You are such a strong lady and I greatly admire how you are handling this. I am so happy it was benign for you. Please take it easy and don't push too hard. We want no set-backs!

After talking to another friend, it turned out that her breast cancer was in remission for many years. But returned last year and spread to her liver. She was battling it with chemo and radiation, but her liver just gave out.

Fellow fancy yellow diamond lover, I need to figure out a way to wear my Tiffany Fancy Yellow diamond ring again. I wore it daily from March until December but stopped wearing it after I received my CBI diamond in a RHR. I could stack it, but don't want to do anything to scratch up either ring.

 

[cflutist]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Cflutist,

Thank you so much for answering my questions.

I will be keeping you in my thoughts everyday. I greatly admire how you conquered this with courage and grace. You've got lots of us cheering you on!

LOL, I just don't post of the almost daily meltdowns and crying sessions that I have been having. My neighbor thinks it is because my I recovery is not proceeding as I would have liked (think super achiever and Type A personality) and that I am being impatient. The in-home PT was telling me to cool it also.

But thank you all for the compliments and encouragement. I would rather be posting about a new piece of jewelry in SMTB but truthfully that is the last thing on my mind right now.

 

[CRYSTAL24K]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

I am so sorry for your loss! Sending more hugs and well-wishes your way!

 

[Tekate]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cflutist: Hello, I've been reading your journey.. a pity party? you deserve it, as pain is terrible.. the problem with narcotic pain relievers is you need more and more.. you could move down to vicodin which isn't as strong rather than just tylenol, I never had much luck with tylenol to help with pain.. I like Aleve.. but that is for joint pain and pain from surgery.. I wish you a speedy recovery and am very much in awe of your strength.. Daily it seems like the pain is there but over time one realizes that the pain has subsided... You are a wonderful woman. Peace to you.

 

[arkieb1]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hugs and continuing dust for your recovery. You are an amazing super strong, determined woman, really pushing yourself when most people who have survived an ordeal like this would be in bed in a ball in a mess, I am going to join the chorus of voices and say please take it easy and be kind to yourself, despite it being super frustrating allow your body time to heal.

 

[sarahb]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cflutist, I hope you are feeling better today, progress I know can be slow, & daily improvements can be minuscule, but progress nonetheless. Having gone through the hip most recently, everyday brings more 'normalization'.

I just finished a face chat with my youngest sister, who has a meningioma above her right ear, which they are removing tomorrow. Understandably she is an emotional wreck. The tumor itself is the size of a golf ball. If it is a grade 1, no radiation, if it is a grade 2, she will undergo radiation.

Your surgical incision looks very similar (as far as location) as to what she's described as her surgeons explanation. I'm wondering what exactly, did they call your tumor? Wondering if it was a meningioma as well.

I've been following your posts & relaying your progress & experiences to my sister. She does not want to see your thread, as she doesn't want to see the pictures. She's really frightened of the surgery, & of the possible outcomes.

I hope your recovery is smooth sailing, at least the HUGE bumping the road is now behind you, & what a relief to find out it was benign, congrats on that front! I keep telling her once she is finished with the surgery, she will find relief & recovery, altho hard, is something she can get through with time. We are praying she has a benign outcome as well.

Sarahb,

Yes pathology came back with a Grade I meningioma. My neurosurgeon said that it was in a favorable position, but was too large for Cyberknife targeted radiation, hence the craniotomy instead.

I totally understand how frightened your sister is. Although I've had 3 prior surgeries, this was by far the most frightening of all due to the long laundry list of complications, and what those complications could have been. Everyone is different and I totally respect your sister's wishes, but I was the complete opposite of her. I immersed myself in researching everything that I could (kind of like buying a diamond on PS). Although difficult to stomach, I watched YouTube videos of craniotomies. I knew that I would get my head shaved but not how much (didn't even discuss that with the neurosurgeon because I wanted him to take what was necessary for infection control), what the Mayfield clamp was and that I would end up with a divot on my forehead and 2 other puncture wounds on the back of my head. My surgeon told me of the temporalis muscle soreness post op (but I didn't realize that it would make eating such a chore, great way to lose weight though). What I didn't know was that he would take a graft from my pericranium to cover the hole left in my dura when the tumor and its attached dura was cut out and sent to the lab (some surgeons use synthetic dura to close that hole).

I don't know your sister's age, but she may not have any of the problems, or less severe occurrences of what I am experiencing Post-Op as I am in my late 50s. Good luck to her, sending you and her positive thoughts, prayers, and "dust" as well.

Thank you for taking the time for your response Cflutist--I recall those earlier days of recovery & everything it seemed was such an effort. I do appreciate it.

I agree, knowledge can be helpful, understatement of the year, said tongue in cheek. She's just beside herself right now, & I too, would have chosen to read, become educated, would have felt much more in control, settled etc etc (insert whatever response) with knowledge about the procedure, recovery, & potential outcomes. I like being PREPARED. She's a different bird, & chooses to follow a different path. She's in surgery right now, so am waiting for updates as they become available.

I am so worried for her, as her personality does not handle emotional stress well. I am praying today goes well & recovery is smooth for her. I just have to keep telling myself she will get though it. You asked, she's 49. In perfect health--so she's got that going for her.

Cflutist, as much as you want to get on down the road to full recovery, please take it slow, & remember, you will get there--maybe at a different pace than you'd prefer, but you WILL get there. You hang in there & take care of yourself.

Now, I must get to my PT exercises I have a laundry list to do, & also walk--with cane--4-5 houses on my street, ideally, 3x a day. The limp has gotten better, but its just so slow....

 

[Smores84]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Hi Sarahb,

I am keeping you and your sister in my thoughts and prayers - sending hugs and healing vibes to you guys!

 

[marcy]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

Cflutist, I am sorry to hear about your friend and co-worker. Hugs to you.

 

[luv2sparkle]

Re: Survived a Pterional Craniotomy and a Brain tumor remova

I am so sorry about the loss of your friend. That is a heavy blow. I think your progress sounds pretty darn good, you are definitely moving in the right direction! Please don't beat yourself up about meltdowns. It happens, and it will pass and not a single person will hold one thing against you or even remember it. Your scar looks like it is healing beautifully as well. Thank you for the update. You are in my thought and prayers.