Now, even more confused ... and in tears....

[ppearl214]

I've been in communciations with Dr. Brackmann at House Clinic... he emailed me wonderful information on AN's, procedures, etc.... I think his feeling regarding me (based on my MRI notes and talking to me... my MRI films are arriving at his office tomorrow....) is for a Middle Fossa procedure.

So, I've sat here and read all the lit that he emailed me... describing many of the different surgical procedures (this incision, that incision, expose this, expose that, etc)....some noting cons against radiation, some in graphic details of procedures, etc.

I'm overwhelmed... and in tears. 

As many of you know, I have an appt upcoming on the 24th with my local brain neurosurgeon.... I'm trying to also see about other opinions (my dad taught me well to C.Y.A and cover all bases).  But, I'm so overwhelmed with this all.

I think the reality of this "thing" in my head is starting to hit me.  (FYI note, I lost a sister to a malignant brain tumor back in 1969 -- now I know this is benign, but 2 siblings with different kind of brain tumors, well, a stigma is already there, ya know?)

I've been in "wait and monitor" mode for just under a year but the AN grows at a slow but steady pace. I know decision time is coming up...

For those of you that are in "wait and monitor", how do you deal with the stresses of trying to figure out what to do and what is best?

For those of you that have gone through any process, how did you deal with the stresses and how did you come around to your decision?

I know each situation is specific to each individual.  I understand I have to do something about this before it gets worse (currently 6.7mm x 9mm with other complications as well -- ie: Chiari I)

I guess... how do you "keep it together"?  I've got a great support mechinism in my family and friends and those co-workers that know... but, really starting to lose it here.

Thoughts? Any and all accepted... and please let me thank you in advance for all of your help and support!  I truly appreciate it.

[Kathleen_Mc]

Pearl: This is indeed a very difficult decision. The doctor's you have seen, do you trust them? How many opinions have you had? I think the more the more confusing it is. I didn't discuss with my sergeons the approach they were going to take, the first time around there wasn't time for any such thing and the second time around I truely trusted the doctor to do what it takes to get it all out and I didn't care which wasy he went about it (besides everything was lost the first time around anyway). What do the doctors say they would have down if they were the patient?
In the end it comes down to what you are comfortable with but I don't think it is necessary to read the actual operative procedure, just think about the end result, if it is saving remeaining hearing that is the goal or no facial damage tell the doctor that and let him deal with how to do it.
I found the five years I spent being monitored and thinking about all this very stressful and I feel so much better now that it's out. I have afriend who eachi time she goes into the O.R. she makes them put a monitor on the facial nerve and stop without damaging it, hense never fully removing it, I couldn't handle it just get it out I say but to her her face is too important.
Each of us have our own goals in this. Kathleen

[Boppie]

Take control. Make a list of your needs and priorities. Make a gut felt decision based on your trust of a doctor. You are a strong person.  You've been waiting and have gotten answers from some of the best, I think.  Once you make a decision you will feel much, much better and in control. 

On the bottom line, I have always asked my doctors "What would you do if I were your own sister, mother, daughter".  This has worked for me.

[targa72e]

Hi Pearl,
You are not alone. As I have read the post on this forum over the last 8 months I think what you are feeling is normal. Making a treatment decision seems very difficult for everyone. Having a tumor that is small is good because the out comes are typically better but hard because there are more options and more evaluation of priorities. I can say that for me having my sixth month follow up MRI was the hardest part so far, it somehow made my condition more "real" but it also allowed me to move forward. I was finally able to set back and look at what was important to me and what my priorities were. For me I had two priorities: put this whole experience behind me and try and save what hearing I had left. Try and think of where you want to be in the future and how best to get there. Best of luck.

John
5mmx5mm right side, waiting

[ppearl214]

Thank you all (including the private emails I've received) for all you share.... I truly try to stay upbeat and do have a great deal of mental strength, but as my dad and sister said to me last night... "it's been 9 mos since the diagnosis and you haven't released tears yet, so you are certainly allowed to shed some tonight".... so, I did.....

Each and every one of you are correct.   I have laid out my priorities and have "blueprinted" with my dad each and every step I need to take to achieve the ultimate positive outcome.... I know (due to other complications with my health) that I will never be 100% healthy, but as it pertains to my AN..... trying to preserve as much of my hearing as possible and to remove the AN is the ultimate goal. 

John, you are absolutely correct by noting that the smaller it is, the more options available and I know that although the options are numerous, I think that is what is causing the overwhelming feeling.

I focus a great deal on my work (sell computer chips for int'l company), I focus on my home environment and lord knows, my dog (a Pug) makes sure I get out and get some exercise when I take her for our 1-mile strolls (balance is slightly off but need to keep the leg muscles strong).  As my dad and sister reassured me last night, they noted that I'm doing everything right.  I guess that due to the internet, it gives us a world of research to be done and maybe with all the research I have done, that is what makes my head spin.  But, have limited the locations of research now and will wait for my appt.  I guess that is all I can do right now, including what you all have noted.

In another thread, I noted that you all rawk.  You all are true inspirations to me in knowing that this "thing" in my head can be handled.  I've said thank you many times out here and once again, I note it to you all for your wonderful support. 

Phyllis

[shoegirl]

Phyllis,

There is nothing easy about all of this.  Just do the best you can, do your homework, make sure you have talked to everyone that you need to and then talk to them again.  Don't be afraid to ask lots of questions of your doctors.  At some point you will make a decision and hopefully you will find peace in it.  I can tell you that I am so relieved to have had treatment.  Cyberknife was really easy for me, but it was having the decision and treatment done that gave me relief.  I can only look forward now and hope for the best.  I have lots to be thankful for and having CK overwith allows me to see all of those things more clearly now.  I think having these tumors will always give you something to worry about in the back of your mind - no treatment is 100% guaranteed.  Make the best decision for you and take time out to care for the rest of you too.

I am not anti-surgery.  I think everyone needs to do what is best for them, but I am going to ask you anyway - have you consider Cyberknife, Gamma Knife, or other forms of radiation?  Everyone has their reasons for choosing one versus the other - some have no choice due to the size or location of their tumor.  If you have any questions about the radiation treatments available there are lots of members whom I am sure would be happy to answer any question you have.

Best Wishes! Suzanne

[antoinette]

You will get used to the stress with your will not to damage your health more than it is. Stress always seems to create more dizziness, louder tinnitus, and quite an increase of these frightening stabbing pains in the cranium.
By forcing yourself to calm down, to trust the future and whatever treatment you have chosen, you will soon feel the difference.
Some people have to wait a lot longer than the appointment date, it becomes easy with practice. But, I know that the first wait, between the scan and the first MRI confirming the AN, that wait almost drove me crazy with stress and fear.That was 9 years ago. I am still waiting. Courage, and all my wishes.

[Kathleen_Mc]

Antionette: Not everyone gets "used to the stress", I was "monitored" for over five years and I never felt at ease with it and it was only due to the psychological effects of having a brain tumor that was having periods of growth that I had the regrowth removed (there was no physical need at this time), I truely believe if it had been on my arm and I could look at it by myself frequently to know how it was doing I would have been alright but I couldn't "settle down" and be reassured I was going to be ok (mind you this is a regrowth I'm talking about and the orginal tumor was all but killing me when found). We must remember we are all individual and what stress some people can "deal with" others can't. Kathleen

[ppearl214]

Suzanne, Antoinette and Kathleen, you all make solid points.... Some handle stress better than others.....and yes, there is a lot to be thankful.  We try to make the best of what we have to work with..... I do some stress relief (gawd bless my boyfriend in London -- he sends me terrific bubble bath for relaxing that you can't seem to purchase here in the States, so I now live for bubble baths to sit, soak, ponder and relax).....

I know that in life, waiting is always the worst.... waiting for a raise/salary increase at work, waiting for the birth of a baby, waiting for the perfect man to arrive in a woman's life (ok, girls, giggle with me on that one! )..... but when it comes to knowing that there is something inside of your head and having to make these kind of decisions... I have found that posting here and emailing/chatting with others here that go through the same thing as me has been a tremendous help.... so, I thank you all... but, the reality is... I have to make this decision and at this time, it's either denial inside of me saying that "naw, this thing isn't going to grow, it'll all be fine, no worries, continue to sit and wait"...... or it's "dammit, not another decision regarding my health!" ....or "what the heck do I do?"  Do I go to a counselor so I don't burden my family with my worries since they are worried enough about me?  Do I try to focus more on my work (which is nearly impossible since I'm a workaholic as it is)? 

I know I have to make a decision soon.  I hear pros and cons for surgery for removal. I hear pros and cons for radiation treatments.  All I know is that I'm scared to death of making this decision.  I don't mind taking risks in life but I also know that making this decision, there is no guarentee of outcomes for any of the procedures.  I like guarentees.... but when a decision like this has to be made, knowing that no guarentee can be made... then do I just cross my fingers for luck and can only pray for good outcome?

I'm scared... just as you all have been or currently are.....I'm a strong person but I guess I just never realized that I would have to make this kind of decision at any point in my life and now that I have to... well.... I'm scared.

If it wasn't for you all, I know I'd be in worse shape than I am now... you all are terrific, I continue to say that, you all have proven it to me.. thank you all for sharing here....



(P.S... just saw my horiscope for today... guess it's time to heed it...
Quickie: You can overcome intimidating details. Just take everything a little bit at a time.)

[Kathleen_Mc]

Phyllis: What does your "gut" tell you to do? Sometimes it comes down to that, not what the facts tell us but what we feel best with given having already been educated with "the facts", for example I was offered gamma knife for the regrowth and I had read up on the procedure for many years...even before I knew I had a regrowth and my husband and I had discussed it and were going to "pay" for me to have gamma knife if treatment became necessary before Canada had one (go to the U.S.) but in the end it didn't sit well with me, I knew what I was going to feel like post-op from surgery and was not as anxious about having surgery again as I was about having gamma knife.
I guess earlier generations had it easier in these matters, at least in one perspective, they were told by the doctor what would be done and that was that.
Kathleen

[ppearl214]

Kathleen, thank you... ok, let's try to answer the ultimate question.. what does my gut tell me?  Boy, I'm going to answer this as brutally honest as I can.

My gut says, if it don't belong there, cut it out... my gut says that I don't want to endure brain surgery (stigma from my sister's issue).  My gut says that neither is full proof.  My gut says radiation may bring on worse issues than I started with. My gut says that surgery may also bring on issues that I just don't think I can deal with.

My gut... honestly has no clue.  It's honestly numb.  I can usually rely on my "females intuition". I can usually keep a solid, clear mind in "take a step off, take off blinders and weigh things appropriately".  Right now, Kathleen, I wish I could answer the question.  To me, for all procedures, it's damned if I do and damned if I don't.  Thus, confusion... massive confusion.

I know modern medical technology has come a long way since 1969 and my sister... I always told myself she helped to be a "forerunner" in today's treatments of brain tumors.... I just never thought I'd be living proof of what I always told myself.

Kathleen, thank you.  And to you all... and for the emails... I thank you.

Phyllis: What does your "gut" tell you to do? Sometimes it comes down to that, not what the facts tell us but what we feel best with given having already been educated with "the facts", for example I was offered gamma knife for the regrowth and I had read up on the procedure for many years...even before I knew I had a regrowth and my husband and I had discussed it and were going to "pay" for me to have gamma knife if treatment became necessary before Canada had one (go to the U.S.) but in the end it didn't sit well with me, I knew what I was going to feel like post-op from surgery and was not as anxious about having surgery again as I was about having gamma knife.
I guess earlier generations had it easier in these matters, at least in one perspective, they were told by the doctor what would be done and that was that.
Kathleen

[Kathleen_Mc]

Phyllis: Are you single or married (in a committed relationship)? What does your family think? Are they educated in all of this? My husband was 100% behind my decision and that helped, he helped me sort out all of the questions and that was really important because if anything were to "go wrong", no matter which route I went, it would have affected the entire family. He knew something had to be done, he commented that even initally on awakening in NICU he could see a great bruden had been lifted from me when I awoke and knew I had come through the surgery without any lasting deficites beyond what I had already going in and he had seen the psychological stress I had been enduring for over 5 years and although he is less of a worrier and more prone to worring when needed he knew I couldn't go on as being "monitored".
Rather than look at it as which is the better option what is it that you dislike the most about each and pick the lesser of the two evils.
Kathleen

[ppearl214]

Thanks Kathleen!  I am single, living in Boston with small dog.  My father lives locally here in Boston.  My boyfriend lives in London England.   My best friend of 40 years is here in Boston as well.  My mother and all remaining sisters live in Atlanta.

I know my dad will travel with me wherever I decide to have treatment (if not locally here). My best friend has told me that regardless of where and what procedure, she will travel as well.  My boyfriend, needless to say, doesn't have the travels as easy but is also ready to hop a plane to be wherever I am (gawd, is that love or what?)

I'm trying not to dwell on things too much, but also trying to be well informed so I can make the best decision. I've received some marvelous posts and emails here with sharing stories of radiosurgery vs. microsurgery, all with good points and not-so-good points. What I think I will do is take this weekend as a quiet weekend to sit back and really, truly weigh things out....  I think I'm armed with enough info, but now time to truly weigh it out, ya know?

You all are terrific... and thank you!

Phyllis: Are you single or married (in a committed relationship)? What does your family think? Are they educated in all of this? My husband was 100% behind my decision and that helped, he helped me sort out all of the questions and that was really important because if anything were to "go wrong", no matter which route I went, it would have affected the entire family. He knew something had to be done, he commented that even initally on awakening in NICU he could see a great bruden had been lifted from me when I awoke and knew I had come through the surgery without any lasting deficites beyond what I had already going in and he had seen the psychological stress I had been enduring for over 5 years and although he is less of a worrier and more prone to worring when needed he knew I couldn't go on as being "monitored".
Rather than look at it as which is the better option what is it that you dislike the most about each and pick the lesser of the two evils.
Kathleen

[ppearl214]

UPDATE:

Dr. Brackmann from House Clinic has reviewed my MRI and just called.  He feels that I'm a perfect candidate for the Middle Fossa procedure and would love to do it on me.  Said the IAC is the only part affected right now and feels he can save my hearing (within 10% of it's current ability) and that the facial nerve would be fine... he sees that (if he were to do it) that I would be out there for 10 days, back at work/normal life within 3-4 weeks.  Based on my age (big, whopping 45 tomorrow) that he sees this (based on the current size and affected location of growth) to be quite successful should I decide to do this. Spoke to my dad with this update.... he would be willing to join me out at House should I decide to do it.

My local brain surgeon's office called today... had to reschedule the appt for the 24th to this week.

Still researching CyberKnife at Beth Israel/Deaconess in Boston.  They have a fab team of radiologist that work with the surgeons.... waiting for a call back

So, as you can see, the data is coming in and now preparing myself mentally to make this decision.  Having a terrible headache tonight and have been in bed since 6pm, but hoping that this will alleviate soon.

Just want to say thank you so so very much to all those that have emailed me with rock of gibralter words of encouragement, as well as all of your posts.... I told Dr. Brackmann I heard about House from here and the great support that you all provide.  He was impressed... as am I.

Happy Valentine's Day all!  .... and thanks again!

Phyl

[Larry]

Phyl,

Good luck with your decision. Sounds like you are narrowing it down now. From all posts here, House seems to be right up there with the best of them.