ANA Discussion Forum
Archive => Archives => Topic started by: ppearl214 on February 08, 2006, 06:55:30 pm
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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.
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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
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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.
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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
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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.ÂÂ
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.ÂÂ
Phyllis
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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
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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.
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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
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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)?ÂÂ
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.)
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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
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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
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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
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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
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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
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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.
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Phyllis,
Happy Birthday and Valentines Day! I've been following your discussion and wish you well and peace of mind in your decision making. I live in the Burlington, Vt area and have been referred to Albany Medical Center in NY for a 2nd opinion/consult for my AN. No one is really giving me much info on the exact size and location, but my PCP has been the most helpful. I've been doing reading and researching on the web and I'm leaning more towards CK treatment for my "small" AN that is located in my right ear internal auditory canal and cochlea. The thought of brain surgery scares me to death. I'm most interested in preserving what hearing I have left. The doctor I am going to see is Dr. Steven Parnes. My appt is in 2 weeks which will be 5 months since diagnosis. I'll be sure to give you feedback on my appt. Albany isn't that far from you. I wanted to go to MEEI, but my insurance co. said no because they were not" in network." I just don't know if I could fly to CA for brain surgery. Suppose there was a complication or question? Does the doctor there have an 800 tel.#? I think my husband would say I was crazy to even think of doing that. How have other people dealt with the long distance thing?
sally
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Pearl,
I would never try to lead you to a decision. That is a personal thing that you will know when you have made the right one. It will wash over you with the most peace you have known in a long time. I was scheduled to have surgrey with Dr. Brackman Nov. 8th. Talked to him many times on the phone. I was turned down by insurance and then had to reschedule. HEI made me a cash deal that we could swing. However, in the mean time I went on the Cyberknife Patient Support site and started talking to the doctors there. The answered every bit as quickly as Dr.B. I had a conusult with one of them and then was sent to the neuro-surgeon who does surgery and CK and GK. It was her opinion that I was a candidate for any thing at that point. She had moved here from the West Coast and was very familiar with a lot of AN's.
My deciding factor was when I ask her what she would do or what she would suggest for a dear member of her family. She said go with what you feel in you gut. Research and get through all of the rumors and do the research that was published in the last few years. Not over 5 years old. she told me forget about radiation causing cancer, failure is only about 1-2 percent different than surgery. Go to more than one doctor that does both. A surgeon is going to say surgery and a radiation doctor is going to say radiation (not so in my case he said this is how the stastics come out and you will make the decision, just be armed with the facts). The neurosurgeon did say she is doing less and less surgery on the AN's and so are the other doctors in her office. She said if she had a AN in an area was easy for radiation to do its job, that is what she would do. If I had of had hearing then I would have a better chance of retaining hearing with CK.
After talking to Dr. Brackmann again and him telling me I would be making a mistake. I knew the neruosurgeon was right. Go to someone else that had experience in both. The second neurosurgeon said he did not see why anyone would go with surgery before they tried radiation. The failure is small and there is little chance it would mutate. Even the old "I just want it out of my head" line was not the end all and be all. CK is just as accurate as surgeons knife. I took another month and finally decided to try CK.
So far so good. Lost a tiny bit of har. A couple of tiny little uncomfortable twinges. No pain. I am not far enough into this to know what the outcome is going to be. I have every reason to think it will work. I feel good, am working 10 hours a day and balance is getting better.
I thought I had found peace when I scheduled surgery. I think I was just resigned. When I changed and went with CK I went to sleep and slept like I hadn't in months. Got over the fear that had kept me paralized for months and started planning my life. I have AIED and Cochlear Hydrops in my good ear that threatens to take my only hearing ear at any time and I could not deal with so many things going on at once.
Youe will find your peace if you go to a doctor that does both and let them help you with your decision and you will feel a weight lifed by knowing you have done your best.
Sandy
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I can’t agree with Sandy more.
We consulted with 4 Neurosurgeons and 1 ENT for my husbands AN – two of which performed both (one GK and one CK). Two of the doctors who did not practice radiation both advised that we get an opinion from someone more knowledgeable about it. The two doctors that did both advised against radiation because of the size and location – so obviously it made our decision for surgery much easier. His surgery is next Thursday.
We prayed for insight on making the right decision and it was made obvious to us – I pray the same for you and that you feel the peace and calmness with whatever you decide.
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Hi all.. figured I'd check in and thank you all for the thoughts... (Sally, thanks for the wishes as well... bday was rather quiet).
Headaches are getting worse and in tears most of this week. Did speak to my Primary tonight and asked for her thoughts on what she would do if she were me. She really tried to look at it from a common sense standpoint and gut reaction... her thoughts were radiosurgery first, and if it doesn't work, then go to surgery (her thoughts... start less invasive then graduate to invasive if need be). Her first concerns were preservation of hearing and facial nerve... shared with her what Dr. Brackmann told me. Told her I have appt with my local brain surgeon next week (the one she referred me). So, still no "gut" feeling at this time, but....
Sandy, you make a very valid point and I thank you for sharing this with me/us. As of today, I remained confused, have finally stopped crying (I think they make my headaches worse) and am off for a long holiday weekend so I can sit back, get hold of Beth Israel re: their CyberKnife and meet with my surgeon next week. Hope to have a decision by then. My primary agreed that the time has come for a decision, so weighing out all options.
So, that's my update. Hoping you all enjoyed Valentines and are doing well today... and as usual, how do I try to say thank you to you all? I have no clue... but.. just to say thank you.
Be well all... will keep you posted.
Phyl
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You will be alright! My An was radiated in fall of 2000 and I am great. I only experience a little trouble hearing in restaurants where it is noisy(need to turn my head with good ear to the speaker). My tumor was 2.1 CC and it has shrunk more every time I get an MRI which now need not be until 2007. The worst time was making the decision. Those docs that want to surgically remove are so convincing. The radiation treatments that I received were daily for 28 days and that was it. The only short term side effect was headaches which stopped after 6 months. I still have 40% of my hearing in that ear and NO other side effects. I just got back to life. I wish you luck with your decision. Do not throw out the radiation choice too hastily. I think like me so many of us who have chosen that method move on and are not here to post. I am sorry I have not come back to give encouragement to you and others who need it before now. I am just fine and you will be also! K
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K,
Thank you. Your words of encouragement are so appreciated. I'm thrilled to hear that you have been doing very well and the procedure you did looks to be successful.ÂÂ
I guess my question re: radiosurgery is..... if Dr. Brackmann at House Clinic is telling me that he feels my hearing (which is bottom of the "normal" range) would remain (give or take by 10% of what it is now) and my facial nerve (having more frequent facial numbness the past few weeks) would be ok... then if I have the radiosurgery done (looking at CyberKnife locally), are the risks greater that my hearing would become more affected as well as my facial nerve vs. having the surgery done?
I've placed a call to Beth Israel/Deaconess about 1/2 hr ago and waiting for the call back now. I know they can better answer this but curious how this weighed into your decision (or anyone that has had the radiosurgery done)?
Feeling like it crunch time now. I'm not looking to make a hasty decision... but really trying to arm myself with as much educated/professional data as I can. As my dad said to me last night... this is one of the most difficult decisions in life I would have to make. Ain't that the truth....
Best wishes to you all today...
Phyllis
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Phyl,
be careful of stats. I had Middle fossa and lost a lot of my hearing. I was told that I'd lose about 25% of my hearing which i have but that is tested via machine and noise. The crunch is conversation in a normal environment not in a sound proof box. From the posts I have read radiosurgery seems to provide much better results re hearing.
Larry
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Larry, thank you! Very important info as this is what I've been trying to find out... you are priceless! Thank you! :)
Phyl
Phyl,
be careful of stats. I had Middle fossa and lost a lot of my hearing. I was told that I'd lose about 25% of my hearing which i have but that is tested via machine and noise. The crunch is conversation in a normal environment not in a sound proof box. From the posts I have read radiosurgery seems to provide much better results re hearing.
Larry
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Hi Pearl,
I think that when you crunch all the numbers that the statistical information on hearing and facial nerve preservation on small tumors the numbers are about the same. In the end I think you have to pick what you are most comfortable with
From the house web site
Middle Cranial Fossa Approach
Preserving anatomical continuity of the nerve means that the nerve is intact and was not disrupted by the surgical procedure. Even with an intact nerve, the functional abilities of the nerve may not be complete. However, results from our series over the years have shown excellent results in terms of functional outcome of the facial nerve. In a recently reviewed series of over three hundred and eighty (380) patients who underwent a middle fossa-type approach at the House Clinic, ninety-five percent (95%) of these patients maintained excellent facial nerve function after surgery. Only five percent (5%) suffered minor weakness of the facial nerve function. Preservation of facial nerve function is dependent to some degree on the size of the tumor that is removed.
Hearing preservation is the major reason we use this approach in appropriately selected patients. Our hearing preservation rates described in five series from 1989 to the present demonstrate preservation of hearing to within 15 dB speech reception threshold (SRT) and 15% word recognition score (WRS) in between 59% and 71% of operated patients.(5-8) Our most recent published series demonstrated 60% Class A or B hearing according to the reporting guidelines of the American Academy of Otolaryngology-Head and Neck Surgery and we have seen the same success in the management of NF2.(5,9) These results compare favorably with those of recently reported gamma knife immediate post-treatment hearing preservation results.
The middle cranial fossa approach provides an unobstructed view of the entire IAC and its contents. This allows complete tumor removal under direct vision. In a review of 500 cases with several years of follow-up, we identified only one case of residual tumor (0.2%).
From Pub Med on gamma knife
Hearing preservation after gamma knife stereotactic radiosurgery of vestibular schwannoma.
BACKGROUND: To evaluate the hearing preservation rate and to determine its prognostic factors after gamma knife (GK) stereotactic radiosurgery (SRS) in patients with vestibular schwannoma, the authors used a prospective study design to analyze these patients. METHODS: Between December 1997 and January 2002, 25 patients with vestibular schwannoma with serviceable hearing were enrolled in the current study. The median tumor volume was 3.0 cc (0.16-9.1 cc). The prescription dose was 12.0 +/- 0.7 gray at an isodose line of 49.8 +/- 1.1%. The tumor control rate and complications were evaluated by focusing on hearing preservation and its prognostic factors. RESULTS: Based on radiologic study, the tumor control rate was 92% during the median follow-up period of 45 months. The trigeminal and facial nerve preservation rates were 95% and 100%, respectively. Thirteen (52%) of the 25 patients preserved serviceable hearing and 9 (36%) patients retained their pre-GK G-R grade levels after GK SRS. However, 16 patients showed hearing deterioration > 20 dB within 3-6 months and this trend continued for 24 months after the treatment. The maximum radiotherapy dose delivered to the cochlear nucleus was the single, significant prognostic factor of hearing deterioration. CONCLUSIONS: The authors concluded that a more sophisticated strategy to prevent hearing deterioration during the first 6 months post-GK SRS is necessary to improve long-term hearing preservation.
John
5mmx5mm waiting and watching
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Phyllis,
I'm not sure what facility published the GK study John is referring to but there are a number of other more recent studies with consistently higher numbers for hearing and facial nerve preservation with radiosurgery . I have posted several of them which can be found in the archives of this forum. The study quoted here is limited to the "one shot dose" protocol which historically has results similar to surgery on small AN's and better on meduim to large AN's. The emerging data on FSR protocols on machines such as CK and Novalis is displaying 99% facial nerve function preservation and much higher hearing preservation in the 75% range from pre treatment levels. So I think it is important to segment the protocols when looking at radiosurgery outcomes.
As far as the HEI results on middle fossa approach, I certainly can't refute their quoted results although they are much higher than those I've seen published elsewhere , but I would be curious as to how much peer review went into their method of study.
I would agree with John that , in general , outcomes for radiation and surgery in the hands of a skilled AN surgeon such as HEI for small AN's ( < 1 cm) are probably comparable. Surgery results worsen as the size increases whereas radiosurgery results tend to be independent of size. I'm not sure where the delta is for sure but I generally believe those with medium AN's and few deficits pre-treatment will have better results with radiosurgery than surgery.
Mark
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Thank you John and Mark so very much for the stats and inputs on both the microsurgery and GK/CK/Novalis. For me, I think that knowing upfront that all treatments will run the risk of unpleasant outcomes, especially for a "classic AN" such as mine is soemthing I have to keep in mind and at this stage, I think that regardless of what treatment plan I decide, I know that the risks involved are there and maybe just have to mentally gear myself up for "what happens, happens". My hope, based on the films and reports, is that the hearing and facial nerve will be slightly (if at all) affected and now I'm prepared mentally to deal with it... for me, it's now deciding... do I go invasive or non-invasive? Recovery times? Treatment locations? Etc..... For me, these are the factors I now have to figure out.
You all rawk... I constantly tell you but boy, do I mean it! Thank you! :)
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UPDATE INFO:
Well, here goes!
Met with brain/neurosurgeon (Dr. Eliz Claus at Brigham and Women's) today (they moved up my appt to today vs. this Friday... schedule conflicts). Well, I had myself a shocker! She doesn't see me having surgery but radiosurgery!  :o I nearly fell out of my chair! A surgeon that does not recommend surgery but radiation! Oh, my! She also reviewed my base line hearing test results and felt that since I'm in the bottom range of "normal", although experiencing some tinnitus and some ear "sensitivities", I would be fine.
Well, it turns out that the following is confirmed for the Boston area (she has BIG experience in Gamma Knife since she also worked it in her internship at Yale Medical).
Gamma Knife performed at Tufts University and in RI.
Cyberknife performed at Beth Israel
Proton performed at Mass General (she knows Dr. Martuza well and spoke VERY highly of him!)
Novalis, done at Brigham/Women's where she is. She also noted a "new machine" just in at B&W, but unsure what kind.
So, she feels that at this stage, doing radiation and my chances for preservation of hearing and facial were VERY good (less than 5% chance, although, risks are not to be ignored).
We discussed CyberKnife vs. Gammaknife.  We discussed how CK is more comfortable on the patient vs. GK (she's put in MANY head frames and discussed the discomfort with me of headrames.. and I shared with her about the "masks" used in CK.. who says you can't inform your doctor of YOUR research!?!?!?). Her attitude was 1 dose vs. FSR (granted more patient comfort) is what needed to be evaluated by me.
She knew of the Proton treatment but not as versed. She says Martuza is the man and truly knows his stuff!
We agreed that the Novalis was eh-eh (she even admitted it!) and we needed to find out what the new machine is at B&W
Her concerns are ... since the AN is in my left IAC (but now extending beyond into the CP Angle region), the AN and nerve would have a chance to experience the swelling that goes with radiosurgery. She feels that I could have it done anytime within the next 6 mos, based on it's current size. (Can you all say "YAY! Phyl gets to now go to France with her Brit boyfriend and his family in May??? :) ) She feels the risks of microsurgery would definately cause more harm than good for me and is exceptionally supportive in a decision/choice of radiation. She believes, for me, going non-invasive vs. invasive would be very helpful, beneficial and final outcome would be good. I have to say... how much more honest can one be??? I luff her! :)
So, next step.
1. MRI CD sent to Beth Israel Cyberknife team for review, then we set up consult.
2. B&W Radio Oncology is setting me up for consult (need to find out their "new machine")
3. Check more into Proton since I don't know enough about it.
4. Check into GK at Tufts University (since they are only 10-15 min from my house).
5. Check in with family to give them update
6. Decide what to do and timeframe and then.....
7. Book plane tix to England to see my boyfriend, then continue onto France with his family for " wine country holiday"
I'm not 100% decided on Radiosurgery or to maintain wait/hold (as she eluded to today) but will continue further research into it so I can help narrow down options.
So, that's it... hoping you all are hanging in there... and you know, as always, I send you hugs and can't thank you all enough for your continued support (email/phone/posts). You all truly do rock! :)
Phyllis
P.S. guess what? Another fly in the oinment.. they found a Choroidal (is that how you spell it?) Cyst smack dab in the middle of my brain! Looks real neat on MRI film... NOT, but she said not to worry about it now....
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Phyl,
Great post - very informative. Enjoy your trip and then a blast of radiation and you'll be apples.
cheers
Larry
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Thanks Larry. I'm in communications now with Beth Israel and waiting to hear about my consult appt. Also waiting to hear from Radio-Oncology at Brigham/Woman's for my consult appt there.
Have done some research on Proton at Mass General (http://www.mgh.harvard.edu/cancer/about/providers/radiation/proton/faq.asp) and not sure if it's the way to go for my particular situation. Next step, researching GK at Tufts University (http://www.bostongammaknifecenter.org/).
My boyfriend (Gawd luv him!) is also doing some research (well, heck, since that is what he does for a living/pasttime, why not put him to good use from across the pond, ya know?) about the treatments as well. Looks like I may have treatment before my trip to France.
I told my bosses yesterday to give them the update. Their concerns are "recovery time" and, down the road, as my "outcomes" begin to occur. I tried to reassure them that if I do radio-surgery (I explained the difference between radio-therapy and radio-surgery) that there is not "recovery time" but there may be outcomes to look out for a few months after radio-surgery. They want a note from the doctor stating that I will be able to work. I have a feeling that work will become an issue with them, regardless of how much I try to reassure them. I do have a high profile job and a lot of interaction with Sr. Management as well as customers (my customers are based in Europe and Middle East)..... getting mixed signals at work now. They also want to make sure that if I have "outcomes" (ie: balance issues, hearing issues, etc) that the others in my office are not "affected" by what is going on with me.... *shakes head*.... this is going to be quite interesting.
Will keep you all posted as developments occur.. and wishing you all a terrific weekend!
Phyllis
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Phyllis: They want a note that your co-workers won't be effected by what is going on with you? Like do they think you'll be given off radiation or something???? Tell them to plug you in and maybe they'll save on the electric bill.....idiots! Kathleen
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OMG! Too funny! Thanks Kathleen... I did need that giggle! :)
I think my bosses attitude is.... as long as any potential outcomes don't interfere with my work performance or has other's questioning "hey, what's going on with Phyllis?" since they don't know what is happening, that may be his ultimate concern. Otherwise, I do have an extension cord long enough and more than happy to "shine" for the folks at the office! :D
Phyl
Phyllis: They want a note that your co-workers won't be effected by what is going on with you? Like do they think you'll be given off radiation or something???? Tell them to plug you in and maybe they'll save on the electric bill.....idiots! Kathleen
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Phyllis - LOL! with Kathleen's comment. Can imagine your co-workers saying "Wow! Phyllis sure has a glow about her today".ÂÂ
My heart goes out to you, the waiting part of this whole thing is the hardest part. Keeping you in my thoughts!
While reading your post regarding the steps you are taking care of, just wondering if I can tag along on #7? Nothing like a good bottle of wine to help you forget your troubles.
Take care and have a wonderful trip!
Matti
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Matty,
You are too funny and yes, you can tag along on #7. Spoke to his folks today and we are trying to plan the trip, all based on what decision I make (which treatment and when). If I do go with radiosurgery (which, it does look like I'm leaning that way), I'm sure I'll be able to power up every computer in our office... and the printer... and the copier... and the coffee maker! Now, if I can only light up my boss' smarts, ya know? :)
Phyllis
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Phyllis, It seems that you are getting very comfy with the radiation, great! There was no recovery time for me in 2000. I was able to continue without a hitch in a very high profile, stressful position. The headaches I mentioned awhile back did not prevent me from getting things done. Yes, I did have facial numbness BEFORE the radiation and the tip of my tongue felt numb too but after and ever since, none of that! I have just kept on with my life but feel a bit guilty that I did not check back here to help others know that after radiation you just move on with living and forget the whole ordeal! The decision for action is the toughest and as others have assured you there will be peace once you make yours and get started. I can recall that once I decided I could not get started quickly enough! Five years and a few months later only a little trouble hearing in crowded rooms and tinitus which I started with. Go for it! The hardest part workwise for me was that I needed to travel every day for 28 days about 1 hr each way. The treatment only took 20 minutes. The mask and headgear looked scary but were not uncomfortable to handle. I did experience very slight vessle disturbance on my chin but I have rosacia and it could just be from that. I think I am the only one that noticed that. What my doc used made sense to me because he said many lower doses minimized the risk of hearing loss and facial nerve impact. I am sure these past 5 years further advances have been made. My best to you with your final choice. K
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Phyl,
If you decide on radiation treatment, I suggest that you go to work with a geiger counter, give it to your boss (with a serious look on your face) and suggest that you best keep this in the office just in case I infect everyone with radiation!!!!
If you have one of those all encompassing white suits that would be good to. You may need to look for another job but the few minutes of facial expressions from your boss might be worth it.
Larry
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K and Larry, thank you! I do like the idea of the geiger counter and just want to know this.... if I will be able to "run" all office machinery due to radiation, will I get a raise since I'll be saving them energy costs??? :)
Thank you all so very much.ÂÂ
Update!
Beth Israel called.. they have reviewed all notes and films and confirmed I am a perfect candidate for Cyberknife (no wait and hold but time to do). Booking an appt with their "team" (Dr. Ekkehard Kasper/Neurosurgeon, Dr. Eric Wong/Neuro Oncologist) in the Brain Tumor Clinic. Dr. Mahatavan did the "read" and confirmed, CK is for me.
I'm actually at peace with this. I think knowing things are FINALLY being narrowed down and a "course of action" is putting put into place. Now, I still have to meet with the Brigham/Women's team and waiting for a call back from them. They nurses aid up there told me B/W was also looking at getting CK machine, but still don't know what their new "machine" is. Also, need to call Tufts to see about the GK.
So, all in all... holding together well and honestly, if it weren't for you all, I know I'd be in worse emotional state.... so, will use different language (this time) for all you do... domo arigato gozaimasu, mahalo, danka, merci beaucoup! :)
Phyllis
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Phyllis,
I haven't been on the msg. boards for several days. I am still laughing. Your employers sound a lot like mine. A few weeks after I was diagnosed I finially had to tell my boss that is was in no danager of falling on the floor and having a fit. If I did it would only be from frustration and not the tumor.
I had CK 1/5/6/ three sessions. I took the next week off to pamper my self. I was very tense before the first treatment. The afternoon after treatment one I went to lunch with my husband and daugher then my daughter and I hit the after Christmas shoe sales. Three pair that day.On day 2 of treatment I went to lunch and then my daughter and I bought more shoes. Then the week end came and I went to two movies and an estate sale. Monday third and final treatment. A friend and I went to the casino to play on the slots.
Now it is almost two months and the only thing that has happened to me that was not there before treatment is I lost a small amount of hair for about two weeks. My head felt a little hot for a few days after treatment. My balance changed a little. It did not get worse just different. No hearing to lose. No headaches, slight upset tummy after first treatment. Could be stress.
I went back to work the next week and the first day was a real trial. I made every mistake a person could make. It took about a week to get into the swing of things. They are still waiting for me to glow, or foam at the mouth or have some strange reactoion. I had some memory problems before treatment and they are about the same. Tinnitus is better. I do have some slight very quick stabbing pains on the AN side of my face. It is over before you could blink. The doctor said it is because the tumor was very close to the trigiminal nerve and it could be the swelling caused by radiation. It is so quick it is just almost not real.
What I want to say is so far, so good. One month check up was good. I don't even have the foggy brain thing for days now. I do not want to get too confident yet. Isn't it amazing how a neursurgeon can calm your nerves when they know the outcomes from radiation and surgery? My neurosurgeon. Does both and did not think I should go the surgery route first either. Yea!! I was scared spitless of it and can't say I was looking foreward to it. You go girl.
Sandy
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Good on you Phyl,
Now with decision made, forget about the options, recovery time etc and enjoy your life.
Larry
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Sandy,
OMG, you got me laughing now! You are sounding like Imelda Marcos! How many pairs of shoes do you own now and did you win any $$ on the slots??? :) Ya know, I'm getting the same feeling from my boss... am I going to foam at the bit? Convulsions? Will I run amock in the office, pulling at my hair and shutting off all computer related equipment? Will I throw the glass coffee pots around if someone doesn't shut off the machine when the pot is empty? (hell, I do that anyway!).
I cannot thank you enough for sharing with me your "after affects" of the treatment! I'm hoping I'm not going to lose any hair (it's one length, down to my hips) but heard I could lose maybe a quarter-size underneath, that my remaining hair would cover it. Any and all you have described to me is so so helpful (I know that individual experiences can differ, but what you noted is truly helpful to me!)
So, when I have my treatments done, want to come to Boston to do lunch, shoe shop (I need some new fashion boots) and hit Foxwoods for the slots?  :)
Larry, thanks hun! I'm actually feeling a bit more of emotional ease.... I think it's now, "ok, bring it on, let's get it done and book my tix to the UK/France". It's nice to have a light at the end of the tunnel and in all honesty, it's one of the key factors helping me to keep my stress levels down. Hun, I am living life, the glass is always 1/2 full and it's time to rock 'n roll! :)
Phyllis
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I fell asleep at my desk the day after my radiation. The boss actually poked me with a ruler and said "you ok?" Like I was a body that he found in the park or something. Ugh, work...
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well, it's easy enough to close my office door and sleep and have a co-worker wake me at 5pm to get me home..... :)
Thinking of just taking that week off (depending on how many treatments and how they are spread apart). I'm lucky that I have sick pay (actually, have 2 weeks of sick pay available), so should I take advantage of it?
*shakes head in disgust over boss' reaction*
lovely......
I fell asleep at my desk the day after my radiation. The boss actually poked me with a ruler and said "you ok?" Like I was a body that he found in the park or something. Ugh, work...
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Reminds me of the Seinfeld episode where George is looking to take a nap at work, so he has a carpenter come in and build a sleeping compartment under his desk, set-up with an alarm clock, pillow, and blanket.
matti
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what? no tv under the desk? Ok, who's gonna build this thing for me under my desk and will they be on hand to make sure I'm awake at appropriate times? (ie: when the radiation-fearing boss walks in to find out why his expense reports were not processed, to answer the phone to tell my Israeli customers that the shipments they are trying to track actually shipped 1 month prior or... to make sure I use the bathroom at appropriate times and no have an "issue" while sleeping under my desk?)
Heck, I think I'll just take the time off to play it safe... from the way things are sounding, sounds like it may be a good idea.
Phyl
Reminds me of the Seinfeld episode where George is looking to take a nap at work, so he has a carpenter come in and build a sleeping compartment under his desk, set-up with an alarm clock, pillow, and blanket.
matti
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Hi Phyl, I haven't been around for a while and want to tell you I am so sorry I wasn't available when you needed support. I am very impressed with your determination to find the right treatment for you. I believe you are going to come through this just great. I can not imagine the fear you must have felt when you were first diagnosed, considering that you lost a sister to a brain tumor. Terribly sad and heartbreaking.
I think its just great reading the radio-surgery stories in here. I so wish I would have felt safe with that treatment but, alas, I will never know for sure if I made the right decision or not. I do have to say tho that my recovery is coming around so much better that I thought possible in the beginning. My level of paralysis is at House-Brackmann score of 2. I was a 6 when I came home from the hospital. It just amazes me reading the stories of people going out to lunch and going on vacations immediately after treatment...How truly wonderful!!! It has been almost seven months since my surgery and I am just now starting to resume my life. I started back to school a few weeks ago..its very tiring but I feel so much better getting out and gaining back my life.
Anyway, I really just wanted to tell you I think you are doing great. Hugz 2 you All, Sherry ;)
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Sherry,
Thank you so very much for the hugs and wishes! I'm hanging as tough as I can and in communications (off-line as well as online) with folks that either deal with CK or have gone through it. I have heavily weighed options for micro-surgery vs. radiosurgery and when my NS here in Boston told me she didn't want to cut and to go with radiation, I almost fell off my chair! Like you note about making the right decision... is any decision truly the right decision in this kind of scenario? We are all so individual in treatments, reactions (physical and emotional), thought processes in how to go about choosing, etc. You did what was best for you and look... you are back in school and coming along fabulous! My hope is that... if I continue on the decision path of CK, that it will be the best decision for me. I learned a LONG time ago that doctors are certainly not Gods and have learned to run like hell if they think they are. I'm not drowning myself in research but trying to be as well-informed as I can be. Trying to keep my family calm in light of everything is really the tough part... but, one of my sisters told me the other night that she is very proud of me and my handling of this situation. That was a nice warm/fuzzy at a time that I need it.
You may have not been around lately, but I'm sure you have been sorely missed here. And I thank you so much for the words of support and the hugs! Back atcha! :)
Phyllis
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UPDATE:
Ok, nerves are FINALLY beginning to set in and I don't think a Gray Goose martini, straight up, shaken/not stirred, extra olives is going to help. Reality setting in that this time next week, final decision will be made and course of action will be mapped out.
This coming Monday, meet with Beth Israel CyberKnife team. My best friend is coming with me and Mark, can't thank you enough for the encouragement and questions I didn't think of until I spoke to you.  The moral support of everyone here is fantastic and I KNOW that I wouldn't be able to get through all this without you.
Next Thursday, next audiology test at Brigham Womans in the morning, meet with neuro-oncology team at 1pm. Now, they have Novalis (ehhhhhhhhhhhhhhhhh..... Dr. Claus and I still have our issues with it as it pertains to me), but will still meet with them to hear them out and TRY to find out what new "machine" they have coming. Having difficult time trying to find out.
Been binging on chocolate (my poor waistline... I lost it... anyone find it for me???). Hard to focus at work but still harrassing my Europe/Middle East customers just enough for a good laugh. My family have been WAY too supportive (I think they forget I'm an adult and actually able to think for myself, even with a growth or 2 in my brain!) but they really do rock!
So, this weekend... binge eating, working out with my personal trainer (who is also a physical therapist, so will discuss with him what we need to do to keep my legs strong, blah blah blah... he's such a sadist!), and trying to keep nerves intact.
So, with that, I just want to wish everyone TGIF and a terrific weekend... and if you see an emotional, long haired, green eyed woman with a 1/2 Boston accent-1/2 Southern accent roaming around here looking blank faced... just nudge me along... I'll be fine! :)
Have a great weekend all!
Phyllis
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Phyl,
I just wanted to tell you I just love your sense of humor and your positive attitude! Glad things are starting to work out on your decision making progress!
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*slips batty-one a $100*
thanks for the nice words... the money I owe you... shhhhhhhhhhhhhhhhhh......
(thanks hun!)
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Phyl,
As we say down under "she'll be right mate". Just keep thinking of all the fun times you are going to have after all this is over and lets not forget the geiger counter at work. perhaps you could take it in after you see the guys on Monday.
Anyway, keep laughing. Just on that note. I actually listened to a woman who specialises in "laughter" a wee while a go. She says that when you are down in the dumps, no matter where you are or what you are doing, think of something really funny that has happenned to you and break out into forced laughter. That will get you going and peobably eberyone else around you will start smiling and wondering whats this woman on about? Just keep laughing.
Actually, I could picture you and Cakes walking down the street laughing like a couple of mad women having everyone else in fits.
Go get 'em.
Larry
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Larry where in australia?
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I was born and bred in Melbourne but have been living in Sydney for the last 6 years. It's a great place, climate would be similar to Florida. Autum (fall) and Spring has temperatures around mid 20's, winter around 20 but does get cold at night and summer is hot - in the 30's. All measured in celcius. To convert double and add 32.
Larry
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Larry where your ears burning? Phly and I were just talking about finding me a man in melbourne austraila lol I'm from melbourne fl when I'm signed into yahoo I get some strange messages from down under lol I bet it's pretty there plus you guys have roos lol
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Sorry gals, this down under guy is taken. Mind you, I'm damaged goods now anyway - old age and teenage girls have aged this battle weary body to a pulp.
We do have kangaroos but they are considered a pest. They are well marketed as a tourist thing but the farmers hate them.
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Funny you should say "damaged goods" thats how I feel. Surely you have friends down under that aren't taken? lol Teenage girls? OMGoodness! You are battle weary lol I have a teenage boy he's bad enough but the girls seem worse.
How can something so cute be considered a pest? Actually saw a panda attack a man on tv yesterday...rotten little buggers ;D
My niece named my dog "joey" as she thought he resemebled a baby kanagroo...he's a lasa aphsa lol
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gawd, willl you 2 get a room somewhere!?!?!? ;)
Larry, thank you hun for the kind words. And yes, aussie ears must have been burning cuz we were certainly talking about the land down under as I have numerous dear friends in Sydney area. Trying to get there sooner than later (in my winter/your summer, of course!)
batti-one... you are priceless my dear. And thank you so so so so so very much for all you have shared with me. :)
Ok, I'm now officially a nervous wreck. 12:40am Sunday night and my CK consult is tomorrow. My best friend is accompanying me to the appt (my dad said he would call ship-to-shore tomorrow... told him to have a few drinks for me instead). My cheeky bloke is trying to give me a LOT of support and my dog (my pug, Beanie) has been curled up with me most of the weekend. I think she senses something is up.
Will check in with you all tomorrow to let you know what they say. And to top things, I got a zit! A damn zit! Can you tell my nerves are getting the best of me?
Will check back in tomorrow post-consult. You all have a great day! :)
Phyl
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phyl - We're all with you today. I Know how you are feeling, deep breaths...ÂÂ
Hey Beanie, take good care of mommy!
sending you a hug!
matti
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Phy,
You know we're all rooting for you today! Remember it's good news Monday!
M
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UPDATE:
Ok, where to start?
Met with CK team at BI. OMG, I am impressed! SUPER impressed is more like it.
Well, radiologist read my films and found the report states my tumor at wrong size. It's slightly larger than the report BUT... it grew lenghwise, not height! There is room in the IAC for the nerve and tumor to swell for radiosurgery! He then tested me for hearing, balance (gawd, I failed that miserably... Kate, gawd bless her, was ready to jump up and do the heel/toe test for me. I couldn't do one step), reflexes, etc. He sat me down and started to talk to me about options (micorsurgery vs. radiosurgery). Well, needless to say, I blew him away with my research! :) (Can't thank you all enough for all you have shared with me, as well as my NS and primary care dr). So, he saw I did my homework and I said, " forget all that, talk to me about CK". He gave me my hearing retention chances, facial nerve, course of treatments (recommend 5 consecutive days and that's it) and discussed immediate and long term affects (permanent risks and temporary affects). Then, met with Neuro-oncologist. He started the conversation the same way as the previous dr and I said the same "cut to the chase here, talk to me about CK". He was rather impressed I did my homework as well.
So, all in all, they both feel I'm a perfect candidate for CK, that it should not wait and since the tumor has room to swell and is still small enough, they see it as a VERY viable option for me.
So, I meet with BW on Thursday to see about Novalis and will hear them out.
BTW, BI can start my treatments in the next 2-3 weeks. Doubt my cheeky bloke would be here for it (should that be my final decision) but hey, can't have everything.
Will further update after this week's appt at BW.
Hoping you all are having a good day today and feeling ok. :)
Phyl
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Yeah! I'm thinking cheeky bloke can get after treatment when you'll really need a lift! So tell him to get busy working on it!
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Glad to hear it all went so well for you Phyl.
My thoughts have been with you all day!
You were impressed with them, and without a doubt, they were impressed with you. Way to go!
Keeping my fingers, toes and eyes crossed that your cheeky bloke can make it here. Do you want Battyprincess and I to call him? ;)
Take care and thanks for the update
matti
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Phyllis,
I would rather go to Paris. Will in the fall or early next spring. Never bought shoes in Paris. Last time I was there they were just coming out with the long pointed toe shoes. Thought they would never go over here. Can't go over with me, I have big feet.
I have never been to Boston. If they have shoes, sales and a casino, I am all for it. Pamper your self and take a week off. Your boss will not want you back if you are still glowing and foaming. He/she will never know you are pampering yourself.
Won a little on the slots...my reward for being a good girl during CK. Hey, seven pairs of shoes in two days is not bad.
Have you set a date for the CK yet? You are going to do great. You need me in Boston to hold your hand and help you shop and go to the casino I'll be there. (;).
Sandy
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Sandy, you rawk! Thank you! Yep, those pointy toed shoes are awesome (did get me a pair last Sept in London!) but the french fashions.. gotta have it. Ok, shoe shopping, slots and lunch during um.... "treatment" week sounds great to me! :)
I'm 98% sure of the CK. Been talking to Dr. Medbury as well and still owe him drinks for the heads up on CK that he has given me! Will still meet with BW re: Novalis so I'm not ruling out anything and trying to remain open minded, but for me... based on all data and info re: my case, CK is looking the way to go.
Sandy, you are on! :)
Phyl
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Phyl - Good luck tomorrow!
Hugs to you!
matti
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You rawk hun! Thank you! :-*
Hearing test at 11:15am, clinic meeting with neuro-oncology team at 1pm. They will discuss Novalis with me... but... but... I got word through my loverly grapevine today that .....hmmmmmmm.. for those of you interested or researching... Brigham Woman's has a Cyberknife machine on the purchasing books. FYI.
Huggles back atcha matti!
xoxo
Phyl
Phyl - Good luck tomorrow!
Hugs to you!
matti
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Go get Phyl,
Pleased to hear that even with a little growth, CK is available.
Larry
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Thanks Larry. Yep, there was some more growth (seems pretty rapid to be based on the annual avg's quoted to me) but hey, I'm ready to rock and roll and it's time. I'm mentally (I think...) prepped but just ready to do something about this and get it overwith.
Decision time this weekend. Anyone gamblers around here? (pffffft, silly question, eh?)
Ok, place your bets on which treatment I will do? Now, granted, we have pretty well ruled out microsurgery, but as for radio-surgery, will it be:
1. Proton
2. GK
3. CK
4. Novalis
5. continued wait and hold
6. Say screw it and just go drinking
Phyl
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I reckon in this order.
6, 7, 8, 9.
I take it that 7-9 will be along the same lines as 6. Sounds much better that the other options.
Larry
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I'm with Larry..somehow I'm thinking 6 will be first lol
when you come to maybe 3 lol
If I leave now I might be able to join you for happy hour lol ;D
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Phyl - Was hoping you would be checking in to update us, but I know you have alot on your plate right now. Hope it all went well yesterday. We're thinking about you!
matti
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Yeah matti, Phyl's been real quiet the last few days...do you think she started with #6 and forgot what number was next?
Phyl please know we're all here for you when you're ready for us!
Put down the cheeky bloke!
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Hi all,
sorry if any of you were or have been worried about me. As you note here, just lots on my mind and really, REALLy trying to weigh things out.
UPDATE:
Had my hearing test done yesterday (my 6-month follow up from my baseline done last Sept). AN (left) ear hearing is diminishing again, losing another 2 decibels. Has now dropped below the bottom of the "normal" level. Oh, well. Also starting to experience more symptoms, especially the "vertigo"... mild/tolerable but noticeable.
Well, I did meet with Brigham Woman's Radio-Oncology dept yesterday. It was, shall I say, an interesting appt. I commend them over there for the care that they provide and they're genuine concern with their patients. I was VERY impressed with who they are and what they do and what they provide. What left me feeling weird was the conversation with the Director of Radio-Oncology. A wonderful man, truly knows his stuff. He was trying to convince me that "conventional radio-therapy", and that the 27-day treatments would be good to save my hearing. Needless to say, I had to share with him my lifestyle issues/concerns. He then said he could do a 5-day course of treatment on me. He did say that micro-surgery should not be done on me (as did my primary physican, my *OMG!* neurosurgeon, 2 radio-oncologists and my gut). I admire what they have done in the world of LINAC treatments (as it originated with them), we discussed "accuracy" of the Novalis vs. other radio-surgery treatments, etc. A good 2 hrs spent there with interesting discussion.
After my appt, I then stopped upstairs at my neurosurgeon's office. Left a message to have her call me (haven't heard anything yet but I know she's been busy). Also put in a call to my primary care physician who has referred me to the best of the best in Boston. Did speak to her tonight and she let me bounce a few things off of her. She's VERY supportive and understands my concerns. She certainly did help me with this final decision.
Everyone I have met with has confirmed, also, it's time to treat. No more wait and hold.
So, as I shared with one or 2 of you here, when I have these kind of stresses or decisions in my life to make, I get quiet. So, thanks for understanding during this "quiet" time for me.
DECISION:
Yes, the final decision has been made. So, do I tell you now or let you all continue to place your bets? Option #6 is a given, as well as 7, 8 and 9.  Hmmmmmmmmmmm....
ooops, time to walk the dog..... ;)
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I'm all for 6...not sure about 7,8 and 9 since we have clashing handcuffs lol
Just know we're here to support whatever decision you make!
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I just wanted to say thank you to EVERYONE on this board... for hugs, support, giggles, shoulders, etc.
I will be having the Cyberknife done at Beth Israel, week of April 3, 5 doses. After ALL the research, appts, talking to folks, etc, I made my decision last Friday, I'm at peace with my decision and I'm ready to rock and roll! :) And, for those of you that chose #6 (and subsequent numbers thereafter), you all are winners! Belvedere Martini, double, straight up, shaken/not stirred, extra olives anyone? :)
Truly, thank you all for ALL the support. Let's get this baby zapped and time to plan France! :)
xoxoxo to you all.
Phyl
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Ohh that drink sounds so james bondish...will sean connery show up for one? If so count me in!
Know we're here for you! Heck matti and I will even come stay with you think you can tolerate the antics? lol
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Phyl - I am sure you are feeling a great sense of relief and a whole lot of exhuastion. It is such a roller coaster ride, full of emotions and decisions. You know we are all here for you!
Yes! Batty and I would love to come stay with you. I hope you like reality tv, cause we sure do! Oh! and we really couldn't/shouldn't drive you anywhere during the pm hours. We"ll bring lots of treats for beanie.
Hugs to you!
matti
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Way to go Phyl.
It's a huge relief to make the decision. Now just look forward.
Larry
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I am ready to rock and roll! :D Everyone that has been speaking to me can't get over the positive attitude and "Let's Rock" attitude. Yep, I'm ready... and, btw, have chocolate ready on April 2. I think I'm gonna need it. :-X
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batty and matti, you both just rawk! If I had space, I'd have you here in a heartbeat! (I'm in a 1-bed apt with Beanie.. and trust me, she ain't given up my bed!)
It's so kewl to know you all... have I told you that lately? :) :-*
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Phyl you'll have to supply your address so we can show up..er I mean send you chocolate...real would def. be better than cyber chocolate right? ;D
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Cyber choccies work batty-one! Just lost 10 lbs, my sadistic personal trainer is trying to help me keep my energy levels up and with *coff* proper diet, I'll be fine...
but, send it to: Glowing One, c/o Beth Israel Hospital Radio-Oncology/Cyberknife kewl treatment, Boston, MA, whatever postal/zip code will accept the shipment.
xoxo
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*walks in all sluggish, dark circles under eyes from lack of sleep, hunched over*
Someone... please... feed me chocolate. My nerves are fraying and I've got 2 more weeks of wait and hold... :'(
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Oh, I hope your nerves aren't fraying... That'll make it that much harder for the cyberknife to miss them! ;)
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Oh, I hope your nerves aren't fraying... That'll make it that much harder for the cyberknife to miss them! ;)
gawd, I luff you! :)
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Well, Phyl, I bought you a couple pounds of the really goood dark stuff but mmmmmm I mmmmmm couldn't...mmmmmm... help...mmmmm...my..mmmmmmmmmmmmmm..SELF!!!mmmmmmmm!!!
Oops! there's something on the couch--Grandbaby in diapers was here....let's see...
I don't know if it's chocolate or not but I'm not about to taste it!!!! :P
Captain Deb 8)
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well, darlin' Capt'n Deb, if the CK doesn't make me nauseous, your post just did! oy. :-X
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Phyllis....concentrate...breathe.....Matthew.....chocolate......Matthew.....chocolate.....you will now feel very sleepy.....chocolate.....Matthew......your eyelids are getting heavier....chocolate......you're getting sleepier......Matthew.....chocolate......ahhhhhhhhhhhhh
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HEY!
We can take the "Phonebooth from Hell" on the boat, fill it with chocolate, put Matthew in the parachute harness,attach it to a halyard, and take turns dipping him!
Hows that 8)
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Hey gennysmom, With that advice to Phyl, make sure she isn't near those handcuffs!
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OMG, now that is an interesting visual!!!!!!!!!!!!!!!
Phyllis....keep the trance up....chocolate....Matthew.......handcuffs.......
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I'm laughing my hiney off after an exhausting day....thanks...Dipping matthew in phone booth from hell..Yeah baby now we're talking. Of course I like white chocolate better.....should be see if he taste better with white, milk and dark? I mean we def. want to get the right combination don't we?
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*stares at computer monitor, bleary eyed*
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CHOCOLATE!!! That's one of my hobbies along with eating it, I mold it. Lots of fun especially when I mold the "anatomically correct" chocolates :o
Sheryl
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S-H-E-R-Y-L!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :o :o :o :o
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my best friend Kate just had me on the phone... I told you all about her, right? Oh, yeah... I did....doh! ::)
Kate is taking my treatment week off from work, driving me into Boston every day for 9am treatments (means, we have to be up at 5am daily), will be sleeping over every night... leaving her husband and boys (age 15, 17, 19) at home. Told her about you all... she's rather impressed with you all (yeah, yeah, I told her the truth) and reminded me about unconditional friendship. Now, she is executor of my will but I have a sneaky feeling she's not trying to get rid of me all that fast.
I AM a lucky woman!
Thank you Kate! Love you! :) :-*
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Sheryl is definitely coming on the cruise with us. Please bring supplies.
I remember reading in an old groupie book, maybe the one by Pamela Desbarres, that there was a time in the 60's-70's that someone was going around making actual molds from famous folk. Hmmmm......
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Sheryl would def. appreciate out cruise humor after that revelation! Gee and here I was thinking I'd send you the candy molds I never use anymore...mine are tame compared to that lol
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We could "Plaster Caster" Matthew, (entire Matthew that is, not just parts) make a mold of him, add some bunny ears and a tail, and makel life-sized chocolate Matthew Easter Bunnies, sell them on eBay and make lots of fun tickets ($$$) for our cruise!
Hows that for creative thinking?
Captain Deb
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Then we could all have a piece of matthew to call our very own lol ;D
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Actually, we could sell the chocolate Matthew bunnies to finance treatment for a few of the wenches who still have these buggers in their heads! Isn't that why we're all here?
(Just trying to keep from being banned from the forum--read my post about my silliness filter being compromised. Think my naughtiness filter has been affected, too.)
Captain Deb 8)
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Captain Deb I think you were naughty before you even knew about your AN...heck can you say all the really dumb things we've done and wished we didn't were because of an AN? sounds good to me lol
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ABSOLUTELY![/font]
Captain Deb
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I put myself in a drug-induced coma...er...sleep last night. I think I'm functioning now... although I've already been warbly, tripping and such but I think it's due to lack of coffee....
*head falls forward, missing keyboard*
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Aha! CD!! So you are educated about the plaster casts!!! I wonder where those all ended up......
Thank goodness Phyl missed the keyboard today. I've been using a nice little nightcap of Bailey's to get to sleep this week. Works great. No drugs yet :(
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Bailey's works! :D Sounds like I need to buy a round for everyone for all the support.
BTW, I think I'll pre-position a pillow on my keyboard for future safety. :)
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I alway found Bailey's to be a Functional and Labor-Saving Device!
Especially for my morning coffee. Don't have to:
trip over the cat while staggering to the fridge for questionably maybe spoiled milk, sniff milk, pour out, cuss cause there's no milk >:( 8)--- or open the cupboard, drop the ant-infested sugar bowl on the floor and run cussing for the broom. All ya gotta do is:
1.Open
2.Pour
Problem Solved
Captain Deb
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Every Christmas I help a friend make anatomically correct gingerbread men. She makes a fortune selling them. I'll send you all one this year.
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Isn't it odd that this thread is called confused and in tears?
Bet there's still confusion, but the tears are from laughing! :D
Capt Deb
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Simple..I like things to be simple since my surgery...Deb makes that sound real simple..only problem is i dont' do coffee so I guess I'd have to do just Baileys.. oh Darn the luck lol ;D
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matti, I'm not going to model for your holiday treats but I know a few guys that will! Dirty dawgs! :P
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FYI... spoke to my cheeky bloke this am..... asked if he would join here (create a profile) so he can keep you all updated during treatment week for me..... I think he will. :)
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I wanna see the models..They must meet bpw approval before they can be baked! ;D
Good for Cheeky Bloke have you warned him what he could be getting into? :-*
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I'd love to hang out here with the Cheeky bloke ;) So nice of you to share him with us.
the holiday treats are of the male persuation. No models yet! Not sure how I would be able to concentrate if there was. It all just started out as a joke, there seems to be a market for it, go figure!
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heard from my cheeky bloke... he should be creating a profile here in the next week.. and trust me... I've warned him about the wenches here... and sorry matti, he's not modeling for this year's holiday treats... he only models for me! :D :P
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Matti Phyl is turning out not to be so fun anymore...Won't let us play with her cheeky bloke..If I had a cheeky bloke I'd let her play with him. See I can say that as I'm never going to have a cheeky bloke lol ;D
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I am TOO fun! :o
*stomps out of thread!*
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BattyP - And just how do you know you will never have a Cheeky Bloke?  ;)
Phyl - Batty is right, don't you remember in The code of the sisterhood of the wenches? It states on page 1, "all for one and one for all".
matti
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This thread puit Bob, Ted, Carol and Alice to shame.
Come on Phyl, share and share alike (for Batty of course, your bloke is not my scene.
Besides, kiddo, just wait until these other wacky wenches start communicating with your man - whooooaaaaa could be some fireworks here. All the secrets will come out to play - we know about the fluffy handcuffs, what else lurks behind that cyber wall.
Stay tuned for the next episode of - need a title girls.
Laz
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How about.............(drumrolll please)...............................................
The "Wacky One-Eared Wenches"
Capt Deb 8)
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I've obviously missed a fun day on this thread!!!
Phyl, I'll be thinking of you all week this and next....many thanks to your cheeky bloke to keeping everyone updated. I hope mine will be as cooperative when it comes my time to rock and roll.
Deb - good call! WOEW!!!!!!!!!! he he he
Larry...you're making the news up here, doing all kinds of damage and they're worried about the reef! Looks like you didn't do much killing tho, just pillaging.
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Gennysmom,
Pillaging huh, thats a Pirate's thing isn't it Capt Deb? who knows, I could be a priate in disguise.
Episode 2 of Wacky one-eared wenches
Capt'n Deb has her wacky wench crew scrubbing the deck dressed in their fluffy handcuffs, superwomen outfits, using a feather duster. The hunks are sitting back on their lounge chairs drinking dry martini's when all of a sudden screaming and cheering is heard on the other side of the ship.
What's that says one of the wacky wenches?
A loud boom is heard and then quiet, the smoke filled air is creepingly quiet and to the crew's horror, Capt'Deb, armed with her newly sharpened feather duster walks to the other side of the ship alone - slowly walking, step by step, inch by inch and then, as if startled, drops her jaw and the feather duster and..... stay tuned for episode 3 when all will be revealed:
What / Who is on the other side of the ship?
What was that loud noise?
I should have changed careers!
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Wacky, Wicked, Wonderful, Wise and Worldly One-eared Wenches! ;D
Captain Deb 8)
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Gennysmom,
A loud boom is heard and then quiet, the smoke filled air is creepingly quiet and to the crew's horror, Capt'Deb, armed with her newly sharpened feather duster walks to the other side of the ship alone - slowly walking, step by step, inch by inch and then, as if startled, drops her jaw and the feather duster and..... stay tuned for episode 3 when all will be revealed:
What / Who is on the other side of the ship?
What was that loud noise?
Laz pooted?
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Hey...
Let's take this back to the good morning thread where it belongs!
Capt Deb
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you all hijacked my serious thread!?!??!?! :o :o :o :o :o :o :o :o :o :o :o :o
btw, MRI, cyberknife planning meeting and CT scan in the morning. Armed with the questions I need to ask and can't stop eating cashews tonight... ya think it's nerves??????????
you all hijacked my serious thread!?!??!?! :o :o :o :o :o :o :o :o :o :o :o :o
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OH Pearly Girly........me and Laz are SOOOOO sorry! We got lost!!!!!!! :-[ :-[ :-[ :-[ :-[
*slinks back over to good morning with head hanging down*
Captain Deb
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Phyl,
My apologies, I got a little carried away coz going through really bad headaches and ... well, apologies again.
Laz
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If you 2 would JUST GET A ROOM! :P :P My thread would be back on track, dang it!!!!!!!!!! ;)
(oh, hell, have fun! I'm laughing my fat butt off and right now, I need the laugh... you stinkers!) :)
xoxoxooxoxoxo
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Pearly Girly,
Will be sending lots of good vibes your way tomorrow and thinking of you all day.  We know how icky and disconcerting going to hospitals can be. (Full of sick people, not sickos, like us!) And scary! Good luck with everything and keep us posted!
Naughty Captain Deb
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Dear Naughty Cap'tn Deb,
You are a hoot! Thanks for the wishes and promise not to bring any cooties from the hopital after my appts. Will check in after pre-treatment planning.
Signed,
The good Fairy-wench... ME! :D
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Yeah, we are with you all the way Phyl, well to your place anyway coz that's where the chockies are:
Laz
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Phyl, good luck tomorrow (today in your part of the country!)....keep us updated!!!! I will be thinking good thoughts and having a huge hankering for cashews (thanks ALOT! >:( ) for ya!!!!
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5:30am now, need to leave here at 6am...... *yawns*... this is too darn early for me! GRRRRRRRRRR!!!!!!!!
Thanks for the wishes all... will let you know what they say when I get back.
xoox
Phyl
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I had to leave my house at 6:00 a.m. to get to my consultation, and had to be in radiation oncology at 6:00 a.m. the following day. Why do they make sick people like us get up at such unholy hours?
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Good luck today Phyl I am sending hugs and kisses your way. :-*  Going for a See's Candy run, want me to pick you up some lollipops? Chocolates?
Matti
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hmmmmmmmmmm... PearlsSO as a new member? Wonder who THAT could be???? :)
thanks all for the wishes.. trying to absorb all discussed today with CK team. My head is swirling and I'll take those See's Lolly's please...
Will update a bit later. Need to absorb my thoughts. Thank you ALL for thinking of me! :)
xoxoxo
Phyl
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FYI... spoke to my cheeky bloke this am..... asked if he would join here (create a profile) so he can keep you all updated during treatment week for me..... I think he will. :)
I resemble that remark ;D
Waves Hi to everyone :)
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kewl! Looks who's here! :P :-*
Update:
Ok, got to BI at 6:30am. oy. Anyway, proceed to MRI. Nice folks BUT.... the earplugs they give me are little, yellow foam plugs to fit inside outter ear (like baggage handlers outside on airport tarmac). Did it fit my ears well, especially my AN ear? NO!!!!!!!!!!! So, the *BANG-BANG-TAP-TAP-TAP-BANG-BANG* of the magnet was FAR from quiet! Oy. After that, I have to kill 1-1/2 hrs, so go for coffee/muffin/check in with office.
Head upstairs to CK Planning meeting. Meet with Oncol Nurse and Radio-oncologist. A LOT of info to absorb. Prescriptions to be prescribed for this, Risks discussed that... waiver forms signed, my questions answered on the procedure itself. I felt soooooooo well armed and informed and I have to thank you all for ALL of your inputs, suggestions, etc... I actually sounded SMART in there! Was given a folder of info I need to read and absorb. Will do that tonight so I fully understand.
Then, I get my mesh/mask made! Bob, the tech, was so kewl! :D We spoke of London, travels, if he could give me a nose job via the mask. I have to say the mask is claustrophobic, but I kept thinking of my last trip to London to see my bloke and his family... it certainly did help to take my mind elsewhere to another place.
Then, Bob brings me down to CT. I have to wear the mask while having the CT scan done. No biggie.
So, all in all, I spent 6 hrs there this morning and now at work. All the coffee in the world is not going to help me today and those that offered See's lolly's... I'll take 'em! :)
So, thanks for the thoughts and wishes.... a mental relief that today is over... now 1-1/2 wks to go.
BTW, the oncol nurse is getting my dr's note for work. I told her what my boss said... can't wait to have her fax it to me.. My interest is piqued as to what it will say! :D
xoxoxoxo
Phyl
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Congrats Pearl; welcome to the wonderful world of radiation!
Did your folder have a "so you're going to die" pamphlet? Mine did. It was a pamphlet for cancer patients who were about to take their first shot from a radioactive blunderbuss. It didn't have much to do with radiosurgery, and it's a good thing I knew that before I read it.
That's hilarious (in a sick sort of way) that your boss is going to be getting a permission slip from oncology. I bet once he gets it he'll feel bad for asking.
What scripts are they giving you if you don't mind? I was under the impression that the CK is more or less painless? Headache medicine?
Best wishes!
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Hey Kilroy!
Nope, didn't get the "you're going to die" pamplet, BUT, I did get a free week of parking at the hospital pass! WOOT for me! :) There was info for living will and health care proxy, but my atty already has all of that on file (I got the copies), so I think I'm all set.
Meds are for tumor/nerve swelling (Decadron, min Rx strength/dose), anxiety during treatment drugs (gotta love the Atavan!) and ...dang, what was it? Memory loss... gawd, I hate that! >:( Will check the prescriptions when I get home. CK is painless... it's the risks and after affects they want to keep in line, nothing more. All med are short term and as I told them today, I am actually ready to rock and roll and get this overwith! Time to move on and plan my trip to UK/France to see my dude!ÂÂ
Oh, btw, I got to go to the CK clinic and see the machine (no one was having a treatment when I was there during lunch hour). OMG! This thing is fabulous! Modern medical technology at it's best (for today's standards... lord only knows 20 yrs from now).
Thanks again for the wishes... I'll take chocolate about now as well. :D
Phyl
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On ya Phyl,
Laz
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Hello land-down-unda! Thanks! Have a great day at work!
Cheers! :)
On ya Phyl,
Laz
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Gidday Phyl,
Pleased that your day wasn't too bad and looking forward to sharing your real inner thoughts through the cheeky bloke!!!!!
I'm already having a great day at the office - Got to work at 8.10am, made myself a cappacinno (packet jobie - they are pretty good), logged in and straight onto this site. been on it for 30 minutes but need to do some work now coz have a mtg shortly that i am running so better be prepared for it - booooooorrrrrrriiiiiiinnnnnnnggggggggg. Would rather spend my day trying to catch up to your posts quantity. I think when you hit 1000 posts you get a free cyber choccie - whoops, don't mention the choccies!
Laz
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We all have to behave now Phyl's cheeky bloke is in the house....
Welcome aboard cheeky bloke..got any cheeky bloke male single friends??? ;D
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batty, no you don't and yes, he does! :) :P
Hey Laz! What a day you are having as well. I'm exhausted (mentally) from this morning and now I get to draft a training manual. You and I are the lucky one's, eh? :)
Phyl
We all have to behave now Phyl's cheeky bloke is in the house....
Welcome aboard cheeky bloke..got any cheeky bloke male single friends??? ;D
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It's a bad day in the sharpe household haven't even made it to work in two days and tomorrow isn't looking too good either :(
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Screw the diet...I am sending batty and Phyl some much needed, stress relieving cyber chocolates and a big hug...
Hello Phyl 's Cheeky Bloke and welcome....Hope you know what you're in for ;)
matti
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Thanks Matti!
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matti, you are too kewl for words! Thanks darlin'! :)
Ok, I'm stressed (as the cheeky dude will tell you)... batty-one needs a bit of support in light of a couple of crappy days... some folks here are having a difficult time with recent diagnosis and set backs....
is it full moon? Sure feels like it. :-X
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They are now trying to track down one of the doctors we were referred to on vacation to see if he'll treat or if I need to go elsewhere. Why is it nothing is ever easy??
Phyl lets go do some shots and get crazy! Maybe blow up a full moon or shoot a few moons if we have to in order to make things cosmically correct again :-*
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batty, I say we run nekked and amock in the threads here, chanting mantras for good health to all and lighting candles of inner peace.....
....or, heck... let's just binge on chocolate! Yep, sounds good to me!
(shhhhhhhhh... cheeky bloke is eating his dinner now... pasta and triple/chocolate ice cream... maybe we should get him on our diet as well.... shhhhhhhhhhhhh)
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How come he's not sharing with us? :(
Sounds like fun..I need a fun diversion!
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You go girls!!!! Just think of it as a prefunction to the cruise!!!! I think shots are a good idea, they do have chocolate liquers you know, you could kill two birds with one stone!
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Hum, I see Phyll is keeping very quiet about a certain ice-cream parlour, on her main street and on her way to and from work, that does something called Rock'n'Roll Stew, chocolate ice-cream, with (depending on what they fancy to throw in) nuts, sprinkles, gummi bears, marshmallows, etc etc, then you can top it off with hot fudge sauce. Strange I can find no mention of it ;D
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Uh-oh!!!!! He's ratted you out!!!!!!!!! You are in big trouble now and will have to be spanked!!!!!
Batty, you with me? We need to go get some of this concoction!
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yep, he ratted me out... trust me... payback will be awesome if we ever get on the same continent sooner than later! :D
(still trying to get him here for post-treatment "therapy"... been since Dec 05 since I've seen my cheeky bloke and, in light of everything and recent change of events with me, it really would be great to have him here than there... although there is nice too)
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You know I think I saw an airfare special to go to phyl's ice cream store! Let's crash it :-*
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Bring it on! In light of physical issues, emotional issues/stresses... I think an ice cream night is what all of our micro-surgeons and radio-oncologists all recommend about now. :)
You know I think I saw an airfare special to go to phyl's ice cream store! Let's crash it :-*
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PHYL - BUSTED
Right, you know the punishment.
Its walk the plank time under the watchful eye of well, everyone - good story for Good Morning, mmm, let me think about this one.
laz
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*looks at Laz... begins to stare at floor*
yeah... I know... I know...... :'(
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[quote
Phyl lets go do some shots and get crazy! Maybe blow up a full moon or shoot a few moons if we have to in order to make things cosmically correct again  :-*
HEY Phyll and Batty!
One of my favorite diversions to get back at the universe is the "Pressed Ham" You need a glass bottom boat and a mask and snorkle, or just a skylight or a glass hatch of some kind. Really deperately you can use you car window! Just back up to it, and SMOOOSH---Pressed Ham! :o
Hope you all are having a better day than yesterday, and that tomorrow is better than today!
Press on,
Capt Deb 8)
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Yo, Parrot Capt'n Deb... do you know I luff you more and more each day? :) OMG!
Phyl
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I luff U 2 sweetie!
AAAAAWWWWKKK!!!!!
Capt Deb, Parrothead
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You wenches are the bestest!
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can you feel the lurve around here???? :)
Ok, I was eating like a pig yesterday. PMS is bad, nerves are getting worse. Knowing I'm just over a week away from starting treatment is finally getting to me.. .if it's this bad now, I don't want to be around me the night before I start treatments... my cheeky bloke should be glad he's across the "pond" from me.... ugh!
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WOW--I had total PMS the week before my surgery, too. Not radiosurgery, either, the cut-big-hole-in-head-scoop-out-tumor-with-melon-baller-surgerytype surgery! Yucky-poo!
You get to off your diet--you are excused! The diet fairy PARDONS you this week!
Capt Deb 8)
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I missed you all last night!!! Gotta catch up!!! Phyl...hang in there!!!! Between now and 4/3 I declare that nothing you eat will have any calories in it!!!!!!!!!!! All will be well!!!!!!!!!!
Now I just wish I could wave the same magic wand for me!!!! Although, right now, not much other than oatmeal and toast sounds good....so I'm being very good.
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how was the concert!?!?!? details! details! :)
Hanging in there... dad took me to lunch today. Ate like a pig! *oink*. We spoke about the upcoming treatments.. the meds they are putting me on, etc etc. We spoke about my cheeky bloke's support of me throughout this whole situation... dad was impressed (did you hear that my SO!?!! Dad was VERY impressed BUT, he doesn't have us married off yet!)
Symptoms are a bit worse but trying to focus on good things... like last time I saw my bloke, the blindfolds, handcuffs...er... um... *ahem*... nevermind! :D
Anyway, thanks hun for the wishes... the next week of waiting is going to be agonizing, I can tell. Just need to keep the energies up and the stresses down... and couldn't do this without ALL of you! :)
xoxoxoxooxoxoxox
Phyl
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Blindfolds huh Phyl,
What else do you have in that chest at the end of the bed?
Have you asked whether its ok to play with toys during your treatment?
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Laz, I think the docs are encouraging her to play with toys during treatment as part of PT!
Just got off the phone with Phyll--great to hear her voice....Glad to lend an ear (only ear!)Funny how a brush with deafness makes you a better listener!
Take care Pearly Girly!
Love,
Capt Deb
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Thanks folks for looking out for me and loaning good and deaf ears to me this past weekend..... I really appreciate it.
Taking time now to prep for next week. Kate will be sleeping over the whole week so she can take me in for treatments next week, so busy cleaning, shopping, prepping for next week. getting my hair done Wed night and been working out at the gym a lot with my sadistic personal trainer to keep my energy levels up. A lot of focus on cardio workouts as well as muscle strength in my arms and especially, my legs. Will work out with my trainer again tomorrow night. Trying to eat right as well. I'm rocking and rolling but have to admit... the sleep patterns are not good. Think a martini, pre-bedtime may help.
xoox
Phyl
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Hi All
Just another bloke from OZ (Perth) here (G'day Larry). I feel a bit like a guilty eavesdropper after reading this thread! ;)
It's been great reading your experiences Phyl, and of the others here.
Quick bio. 44yrs, AN diagnosed 10 months ago 4-5mm. Next MRI in 2 months and we'll go from there.
First consult with ENT when shown the original MRI was wait (which I'm still doing). When I asked about
options he basically said "surgery", but then he's a surgeon! ::) I did ask about radiation and he said
"well you don't want to melt your brain"! :o
At this stage I had never heard of AN (not true my wife, a nurse, had mentioned it given my symptoms) so I then
spent the next few weeks googling away. Some pretty scary stuff out there! A bit depressed and upset for a few
days as well. Even back then the radiation option appealed to me for some reason, even more so the more I looked into
both options. I then put the AN onto the back burner and didn't think about it much until I booked my
next appt + MRI today for 2 months time. Guess what more googling agin and here I am! :D
I guess I want to be well prepared for this appt with all the right/hard questions to ask. Not sure how I'll go getting
a referral from the ENT to someone for radiation treatment, No worries I'll get one from my GP in needed. From what
I can gather the oncology unit here locally (Sir Charles Gairdner Hospital) are very good with the Sterotatic Radiation.
Anyhoo, just wanted to say thanks for the interesting read. I've also been catching up with your progress on other threads.
I'm guessing that you've finished your treatment now and that things are going OK?
Cheers
Greg
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Hello Greg and welcome! *waves hello to all in the land of Oz!* :)
Thank you for your comments and the read, as well as your update. After I started this thread, I then viewed it as a good opportunity to verbalize my journey through my decision making process and how it worked (or not) for me so maybe others could use it as a working tool in their decision making process. Whether or not I accomplished that has yet to be seen but it does give a glimpse into the frustrations, the running around, the questions, etc, that I have asked along the way.
Your surgeon's comments fall pretty much in line with most. My surgeon shocked the heck out of me by saying she didn't want to operate and to go the radiation process, especially for my age (ugh! 45!), the size/location of my AN (at time of decision, it was 9mm x 7mm, but grew steadily throughout the months, being a bit bigger at time of treatment). I completed my treatment (Cyberknife, 5 doses) 2 weeks ago today.ÂÂ
In the past 2 weeks, I have experienced typical symptoms/after affects, but each day, things are getting better. I'm on the last taper step of Decadron (steroid to help with inflammation of brain/hearing nerve, etc), running into minimal affects now, back at work full time as of mid-this week. I've booked my trip to France to be with my boyfriend and family (they all live in SE London or Shaftesbury/Dorset-England... yep, got me a cheeky bloke - he's also on this site!) and life is moving forward. Seems more folks are concerned about me than me, but hey, I'll take it!
For me, I know I researched and made the best decision for me that I could. My hope is that what options are available to you where you are are viable, easily available and the docs will be understanding and compassionate to your concerns and queries. You are fortunate that your wife is a nurse and I'm sure, with her by your side, you will move forward with comfort and love as this journey continues for you.
But, most of all... welcoming you to this site and this terrific support network of the wenches, your fellow Aussies (yes, Laz, even you!) will help you get through this. I have done many posts here commending the ANAUSA (I even got a personal email from the director expressing thanks for kind words I have shared with them) and the folks here that have shown unconditional love and support during my pre- and post-AN journey. Know that we are here for you too! :)
Friday night your time now! Have an awesome weekend!
Cheers and Ta!
Phyl
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G'day Greg,
Welcome to the club. Now, first things first, ya better not be a weagles or dockers fan??? coz then I will give ya misleading info! (lol)
Thats ok, I won't hold it against you too much. Anyway, there is a lot of good info on this site regarding the different treatments. I'm in Sydney and the only options are surgery or gamma knife. The jury is out whether cyberknife or gammaknife is better than the other - I guess a bit like beta and vhs videos in the early days. I had surger some time ago coz i was ignorant and did what the surgeon said and I am rather annoyed at that coz mine has grown back.
Anyway, as my regrowth is still small (I hope), I am not doing anything coz I am not getting any additional symptoms other than my nasty headaches which i have had since surgery. If the growth starts to get close or impinges onto my brain stem, then i will have gammaknife - NO MORE SURGERY FOR ME.
It is vital you go in armed with a number of questions about the treatments and also the post treatment issues such as the meds, their side effects etc. Actually, this is a common issue and I think maybe we should put a list together and have it stored as an icon on this site that can be added to. I will write to the moderator and see if thats possible. So rather than a thread, it will be a list by treatment type.
In the meantime Greg, do some searches on cyberknife and pick up a few ideas
Larry
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Melt your brain, hehheh, that's rich. Maybe you should ask the surgeon which is worse, having your brain melted or having it stabbed with a spork. Neither one sounds too appealing, so it's a good thing that radiosurgery won't melt your brain and microsurgeons don't use sporks. :)
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sorry.. melting and sporks are not part of my vocabulary, thankyouverymuch! :D
;)
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OMG, Kilroy, I'm on the floor rolling!!!!!!!! They're gonna go get Bob the Brain Booger with a spork! Oh!!!!! The visualization!!!!!!! I better not take any psychotropic drugs or I'm going to go to 7-11 and get a spork myself!!!!! I can see it now, the headlines:
"Seattle area woman hospitalized for shoving spork in ear, due to new HIPPA regulations, we cannot report on her current condition"
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Do they have sporks at 7-11? I know they do in all the local school cafeterias wouldn't want the kiddies to hurt themsevles HA!
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sporks are now all the rage! Got to get me one! ;)
Question all.... headaches are coming on frequently now.. last taper stage of decacrap... you all experience this when you were post-treatment and going off the med?
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Ptthh, headaches don't begin to describe my experience with coming off the decadrugs. Could be from the cyberknife too. You never can tell...
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"I'm melting, I'm melting, look what you and your silly dog have done to me" said the wicked witch in the Wizard of OZ.
Now the great truth has been uncovered, it wasn't the water , she had radiosurgery!
Welcome to the board Greg and good for you to be researching your options and not taking as gospel the ramblings of the first surgeon you talked to. You can certainly do a lot a research before your next meeting but I don't think you'll be able to educate/ convince a physcian who makes that kind of statement. The man is clearly an idiot in my opinion.
I would seek out someone who does radiosurgery to better understand if that is a good option for you. I would send this clown back into the outback in search of Kangaroos carrying sporks ;D
Mark
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Jeez, guys, I'm really glad no one used a spork to get at MY tumor! I believe they scooped it out with a melon-baller instead.
Captain Deb 8)
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They used a jack hammer and shovel on me!
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My blast from Capt'n Kirk's phaser gun (hopefully) worked for me!
UPDATE:
Ok, 2 weeks post treatment, last taper stage of Decacrap. 2mg/every other day (Monday, then Wed then THAT'S IT! YAY! Maybe I'll get to sleep now!). Headaches are coming on and supplimenting with Ibuprofen 3x/day to help keep swelling down. Dizziness and balance issues more prevelent at night. Did drive at night for the first time last night (Thanks Capt'n Deb for helping to steer the ship down the waters with me!). Have been experiencing a "disconnect" feeling, especially at night. Facial numbness intermittent, crickets still chirping in ears, mostly at night but definately make their appearance known during the day as well.... but overall, still hanging tough in my usual Phyl fashion.
Am curious if any other radio (or surgical) Posties have experienced the "disconnect" feeling (almost like taking cold meds during a cold).... thoughts? Suggestions?
Hoping you all are having a good weekend. BTW, 5 days until Cheeky bloke! Hey Sue, I need help cleaning my house... ;)
xoox
Phyl
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I"m thinking Cheeky Bloke will over look any dirt! But if sue shows up make sure you point her my way when she's done at your place ;D :-*
Yes, I can relate to the disconect feeling. It's like my brain and my body don't communicate anymore sort of a surrreal feeling. Maybe it's just wishful thinking this isn't really my life right now LOL
I didn't know Capt Deb could help me drive at night...Geesh and here I've been rushing to get home by dark or having my 15 year old (who's learning to drive) drive me around!
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Hi Phyl,
If I may jump in here, I have just read all of your posts and must say you must be proud of yourself for all you have gone through.  Now that you have gone the CK route, just tell yourself that this was the right decision and go forward with it.  Do not look back and move on.  Things will only get better!
I am 9 months post CK and I went throgh all of the decision makng issues you did.  I was on a "watch-and-wait" for my then 3mm AN since 2002.  I met with doctors who wanted to do mid-fossa surgery and who bashed any form of radiation, went to Mayo Clinic in Rochester and discussed GK, went to John Hopkins and to see about FSR there.  After much research, for I am VERY analytical, I opted for CK mainly because I wented the best chances for hearing preservation, and felt it was the most "high-tech".  By the time I had my CK treatments in 2005, my AN had grown to 5.5mm.
After 9 months, my hearing is still unchanged, maybe a slight high frequency loss but, still my last hearing test last month still shows 100% word recognition, and my hearing is still considered normal.  My only symtoms now are tinnitus, which I have had since 1989.  And my 6 month post CK MRI showed no increase in size.
So, tell yourself you made the right decision, because you did, feel good about it.  Life for you will only get better now.
BTW, I live in Minnesota but I have a sister who lives in Boston, (Quincy). I go there often.  Nice city and top notch medical facilities!
Regards,
John H.
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Hi Phyl,
You've been in my thoughts alot as you have move forward on your AN journey. I've been wondering how things are going with the Chiari? I think I might have shared (but then again maybe not) that my youngest daughter has Chiari type 1. She's very symptomatic, but holding her own.
Lots and lots of headaches. Anything in particular working for you with the Chiari, or is it just on the back burner?
Hugs to you
Raydean
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Hey Sue, I need help cleaning my house... ;)
xoox
Phyl
Sorry Phyl, that energy spike is long gone!! I'll be done with decacrap Tuesday night. I don't know how long the effects last, but I'd sure like a good nights sleep also. Three naps don't cut it. I'm tired out from no sleep, I guess. So I was coming up with my malpractice lawsuit plan early this morning (see Malpractic thread), then afterward maybe we can keel haul him on Capt. Deb's boat. Avast, Dr., I'm coming after ye!
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Sue about a week after the decacrap is out of your system be prepared for the crash and burn lol acutally I took it a lot longer so not sure if you'll have that or not. All I wanted to do was sleep. I think I slept constantly for 2 weeks after I came off that stuff ...geesh..so I guess you're not coming to clean my house after phyl's ???
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Sue...glad you're hanging in there. It got to 70 in the Seattle area today, hope it was as nice down south of me for you! I need some Decadron induced wench to clean my house too. Put me on the list someone.
Actually, I'm watching with much interest with this Decadron thing as I'll have my fair shake at it soon. I now have much empathy for all the poor birds I gave Dexamethazone shots to at the rehab center.
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Thanks everyone for your responses. I guess this may have come up before but currently in OZ there
are no GK or CK machines (please correct me if I am wrong on this). The Federal Govt committees
are still looking into it (don't hold your breath!).
Locally in Perth we have "traditional" headframe type SRS:
"Currently at the Radiation Oncology Department at Sir Charles Gairdner Hospital we have three
megavoltage linear accelerators each treating about 55 patients per day from 7:30am until 6:00pm.
All machines can deliver 6MV energy X-rays and one can deliver a more penetrating 18MV X-rays
which is more suitable for deep-seated areas e.g. within the pelvic area. Two of the machines can
also deliver five different energies of electrons. Electrons are used for more superficial (closer to the
surface) tumours such as skin cancers. One can be set-up to deliver X-rays to very small precise
volumes in the head region. This is called stereotactic radiosurgery/therapy."
Won't know anymore I guess (such as how many ANs they've treated and post treatment stats)
until I actually get a referral to go see them.
Hmmm, looks like now I need to checkout post treatment drugs as well with this decadron talk!
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Greg,
I know your fellow Aussie, Larry, has looked into the radiosurgery option down under so he can answer more accurately than me, but I'm pretty sure they do have GK. At this point there is not a CK placed anywhere in Australia to my knowledge but it would be beneficial if the government looked into that for the benefits it gives for full body treatment as opposed to just cranial tumors.
Mark
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Hi John! Oh, thank you so very much for the encouraging words! It's those that have also had CK done that are on the path of wellness a few steps ahead of me that help keep me going! Know that I am very much at peace with my decision and know, for me, it was the best thing I could do. Hearing success stories like your's really helps me keep my chin up as I deal with the immediate (hopefully temp) issues at hand. I thank you so much for sharing this with me/us.
Hey Raydean! OMG, the Chiari. I had not forgotten about your daughter at all and please tell her that her Chiari sister in crime sends hugs and hellos. I can tell you that, as of today, I have a difficult time telling what is bringing on the headaches. Getting the headaches in the occipital area, so could be post-CK swelling or Chiari. I know my legs are a mess right now and need my cane more often than not. The last MRI still show the Chiari as being mild but there, no syrinx (or however you spell it), so I'll take that! Next MRI is May 8 for post-CK but they also take a peek at the Chiari as well to make sure nothing has gotten worse. Keeping fingers crossed it stays that way.
Sue... sleep. Gawd, we both need sleep!
Hi Greg and welcome! I agree with Mark about Larry being a terrific Oz reference as he has researched much in teh area. All this talk of decadron, etc... please remember it's temporary. A couple to few weeks. Trust me, in a month from now, I'll look back and say "gawd, I actually carried on about it!" when it passed by in no time.
Sending you all huggles... and btw, Cheeky Bloke is cleaning the fridge when he arrives! He does a great job of it, but I have to say, out of this recent AN journey, he really is the Rx that this AN patient needs right now.
oxox to you all!
Phyllis
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Am curious if any other radio (or surgical) Posties have experienced the "disconnect" feeling (almost like taking cold meds during a cold).... thoughts? Suggestions?
Phyl
I wouldn't be surprised at all if the "disconnect" was from the decadron. When I was on it, I compared it to the feeling you get when you take way too much DXM (cold medication). Nothing else even came close to describing it... Be sure to let us know if you reconnect after you're off the junk for a while.
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Hi Everyone, I have that disconnected feeling too. Its mostly when I walk or when I am tired. It does feel very surreal. Hope you all are doing well. Luvs, Sherry
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oh, I'm off the junk this Wed and cannot wait!!!!!!!!!!!!!!!! :D
Sherry, agreed! When I'm tired is when I really notice it... especially at night, walking the dog (10pm or later). VERY weird feeling....
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Greg,
The treatment that I will probably be having, if my growth gets bigger (better not ya b....ar or else!) will be gammaknife. Well, the machine they use in Sydney (Prince of Wales) is a Linac machine but the process is very similar and is a sub-set of gammaknife treatment. I understand that it is also done at Royal Melbourne. Apparantly, Dr Smee at Pronce of Wales is the guru here and is widely respected. I can remember someone posting a compliment from Dr Chang in the U.S, if my memory is right - who knows.
Anyway, he's a pretty good guy, very open, drew the graghs, outlined the procedure and was full on with info without me asking. I have learned a few more questions to ask since being on this board though, including the afterwards bits.
A positive is that he does it under Medicare - free, yes free. You can see him as a provate patient or under Medicare but I found that he gave me more time as a private patient.
There is a very basic website tyhat hasn't been updated for years at www.ausrs.com.au. You can always call him I suppose.
Laz