Author Topic: THE YELLOW FLAG  (Read 21032 times)

MDemisay

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Re: THE YELLOW FLAG
« Reply #30 on: July 08, 2013, 05:11:54 am »
Follow up time newbies,

Anticipation of news good or bad cannot be put off forever. Wish me luck, it simply cannot be that bad. I do want to find out if it is a good outcome, however! My appointment is for this afternoon! Cellular death on the subatomic level to Dead Irv is the good news that I'm anticipating!

Follow up should not be put off, in that respect, I am overdue!

Apologies all,

Mike

Ps. Life sometimes gets in the way of self, I have been worried about the health of another!
« Last Edit: October 22, 2013, 01:41:27 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

nftwoed

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Re: THE YELLOW FLAG
« Reply #31 on: July 08, 2013, 07:27:29 am »
Mike;
   Please give Irv my condolences at the loss of his life. Irv gave it a good try but his DNA was scrambled.

Palace

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Re: THE YELLOW FLAG
« Reply #32 on: July 08, 2013, 10:35:52 am »
I would like to start a thread, "What extraordinary pleasure or pleasures did you do for yourself post-TX?"  I don't want to get thrown off the forum however, it would just be a fun thread.  We wouldn't necessarily "learn anything much."  ;-)
« Last Edit: July 08, 2013, 10:23:47 pm by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

jsanders1379

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Re: THE YELLOW FLAG
« Reply #33 on: July 08, 2013, 11:02:21 am »
Palace, I think that's a great idea! We're leaving in about an hour for a 2-day, 1-night in Vail, Co (3 hr drive from  here0 Will get to hear a free Bach cello suites concert in a little mountain chapel....first trip I've felt like taking since GK 5/7/13. great idea to temper all our concerns with a few (non- AN) celebrations!!
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

MDemisay

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Re: THE YELLOW FLAG
« Reply #34 on: July 09, 2013, 08:42:54 am »
Dear newbies and friends who have been following this post for a long time:

It brings me great pleasure to announce this Eureka!!!!

I think Dr.Sisti and I have done it finally put Dead Irv out of his misery! I feel as if a great burden has been lifted!!!

You decide, I will provide 3 dates where CT With and Without contrast were given:

1.  October 2011  ---- 1.8 X 1.3 cm Verrazano Radiology Imaging  (Staten Island)

2.  June 11, 2012 ---- 1.9 X 2.7 cm New York Presbyarian  Hospital Gamma Knife Imaging Center (NYC) (done on the date of Gamma Knife)

3.  June 11, 2013 ----  1.8 X 1.3 cm Verazzano Radiology Imaging (Staten Island)

The report said no signifigant changes were seen. But that is just report numbers 1 and 3. Verrazano Radiology remains unaware of report number 2! If you take into account those 3 reports, that says to me there WAS a signifigant change!

It is important to follow up isn't it?!!!

Anyhow, my neurologist remains unconvinced (due to "variability of testing sites" we shall see what my Neurosurgeon Dr. Sisti says when I meet with him later this month!


Mike
« Last Edit: October 22, 2013, 01:41:48 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Palace

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Re: THE YELLOW FLAG
« Reply #35 on: July 09, 2013, 11:08:29 am »
Mike & AN Gang:


Please excuse this very brief response to your latest post, Mike.  I'm going out-of-town today for an MRI (without contrast) of my rt. elbow)

I'd like to see a written report of your brain after having "an MRI with contrast."  When will you have this next and where?  It seems necessary.

The importance of an MRI series with gadolinium should ease your mind even further if the results consistently show shrinkage of the tumor.

I know the burden to which you are referring and yes, we all congratulate you.

I've had fibroid tumors and now this clicking/popping with a 12mm foreign-body shows in my rt. elbow.  It could be a bone-spur or tumor.

I had recent X-rays of my rt. elbow and that isn't sufficient for a complete diagnosis or clear images. 

You might have to travel far for the proper MRI machine and use contrast.

You Mike, have been through the usual mental torture over the AN issue and need complete and proper follow-up just as we do.   (and those of you on "wait and watch")



Palace

« Last Edit: July 09, 2013, 11:11:36 am by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

MDemisay

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Re: THE YELLOW FLAG
« Reply #36 on: July 09, 2013, 02:20:54 pm »
Dearest Palace,

Would that I could have an MRI.

 But I can't!

 I have upwards of 70 metal clips already in place in my brain from a 1974 surgery on 3 AVM's. Everybody knows what metal does in an MRI! That is why you cannot wear a watch or chain in one.

  You are sweet to have thought of me though! My personal experience with brain surgery was life saving early when that kind of thing was brand new. They had to operate, I would have died otherwise!

 Having an MRI with this much metal would not only scramble my brain but would make the fact that I had an AN totally meaningless because with all those magnets swirling around they would make the grey matter so much mush!

I know you didn't know! Sorry for being so graphic!

Your heart was in the right place!

Mike
« Last Edit: October 22, 2013, 01:42:03 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Palace

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Re: THE YELLOW FLAG
« Reply #37 on: July 09, 2013, 07:43:41 pm »
Hi Mike:


We are all here with our horror stories.

I've got surgeries number 27 and 28 coming-up.  (will put it off until after summer if I can wait)  No, the surgeries are not AN related. (just one)

Yes Mike I passed my licenses for dentistry back in Los Angeles so, I do know what you are talking about.  Hopefully with all the scientific advancements you'll see amazing progress that might help in your future whether it's the watching scans of sorts or otherwise.

In any event, I hope you will be able to enjoy summer, reading and more.

It is nice chatting with you, Mike.



Take good care,



Pal
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

MDemisay

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Re: THE YELLOW FLAG
« Reply #38 on: July 10, 2013, 09:33:38 am »
Dear Palace,

Please forgive me for being so graphic, I was just trying to illustrate for you what would happen to me.

Of course, I was once in the recent past (2012) confused with somebody who could get an MRI (by a clerk who did not know of my metal clips - can you imagine her embarassment ?).

 I know that we all have "our stories" and individual crosses to bear. Please know that we all have the best intentions (or should) and wish the very best for each other, as I wish for you and for all of the newbies and more experienced ones who visit here.

While it is not possible for each of us to know the nuances of our individual stories, it is possible to treat each other with respect, once again, I apologize if I have offended you in any way.

 I promise you, with regard to my own surgery and treatment I have considered and reconsidered every option. All of us here have only one body (and one brain), it is up to each one of us to treat it with a great deal of consideration.

(While I am not a Doctor, I am a currently employed Executive Director of a large multilevel Health Care Facility with a current New York State Administrator's License.)

All the best of intentions and health to you.

Fondly,

Mike
« Last Edit: October 22, 2013, 01:42:24 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: THE YELLOW FLAG
« Reply #39 on: October 01, 2013, 02:30:35 pm »
Folks,


Allow me to bring up once more for the newest newbies my words of wisdom (and just dumb luck) once more that you may better learn to identify your YELLOW FLAGS in yourselves and slow down,  just a wee bit.

 Time is so precious to you all, don't watch and wait too long, it is best to follow your gut here. You may not be as fortunate as to be given so many YELLOW FLAGS as I was!

Fondly,

Mike
« Last Edit: October 22, 2013, 01:42:41 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

grace

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Re: THE YELLOW FLAG
« Reply #40 on: October 07, 2013, 02:14:41 pm »
Beloved ANA  friends, I have hesitated to respond since I have been through 200 hrs + of research and  several visits to all the specialists who have been telling their opinions to me... as fragile as I was   am   I have to comment on what I just have read these past few pages... Holistically speaking, yes these are red yellow flags and how we react and what we change is how we live or exist. As a health & preventive professional  that was pushed out of my faculty position because of catching the admin who was my former Patient  in an affair w/ drugs and on and on never got my position back and 5 more tragic things happened after that all  within 3 month then I was left alone  empty nest and no local work for my husband so  this has been a long run, I was here for all 24/7 then w/o the teaching position, caregiver, wife & mother -w/o the money , party and making dreams happen 1700 resumes later... this  now I am just being  not doing, I realize the gift f time yet too much alone is an extreme yet I am a people person. I  now  don't like to drive much ? Anyone else feel this way. I DO but I push to get all done while I am out so I can be still afterwards.. Not that this changes this outcome but tumors grow from nurturing old hurts.. I did tell this story too many times -not the first 2 yrs but after 1700 applications w/o ever getting rehired,,, then this fullness off balance an headaches/migraines had me check into the ENT who left a phone message as if talking about the weather left the AN and other misdiagnosis - wow ... changed my world... yet I now after almost a yr am going to have the MRI to hope it has not grown. I have stopped- smelled the roses as well as pray. I want to have a roommate to enjoy our lake house since I live alone 90 % of the time and it is not healthy plus to share is a great thing quietude by nature and share a common an experience   with someone who really understands... and help and if interested  can co-write or assist on one of my 5 books, One is to our core AN group - why ? To address the few comments said above, Yes we do have to make a change but often jumping into surgery is NOT the answer, Take it from a researcher in this matter. I have asked and written the best of the field in AN surgery and they were honest enough to tell me that I was right in asking where are the long term studies? THERE aren't any long term studies on these radiation procedures especially. 5 yrs is hardly gold science to tell patients to go ahead with. I have an analogy  with the cyberknife or gamma or whatever name that they want to give radiation. I take x-rays in my field and also can simply say it how it was described to me from 2 of the top MD's . When you radiate the AN or anything in this high dose it makes the cells sticky  so if ever you need to get a surgery to remove it the stickiness of the cells are so close to the nerves needed for vital facial and hearing and balance functions that the removal is much harder microscopically. To visualize this. think of a piece of plastic wrap over a container and after you microwave it then it shrinks so much you see it looking sticky. That is similar but it is our actual brain / ear / facial nerve cells frying. After this I took a long break from DR's. The info was too black to white n their difference in treatment from the sane AN  specialists  WHY???? and I am the real person who feels the outcome. My questions to those of you who got any of the procedures done.... Does it take away the underwater feeling? Did you  come out with worse hearing or no hearing all together/ What is the best thing since the surgery besides getting it out of my brain? How any got headaches after or need more OT/PT to learn to use balance, or how to swallow? I have talked to people and read this for a while. I am now depressed knowing that I have not read but one happy positive outcome but even that one said he/she lost hearing of the ear worked on.  I hope to hear back as I have so much to give yet for the first time I am alone truly alone in my life on the lakeside of CT, I have not wanted to tell people so as not to be judged as I have not been in a good space for a while. Thanks to others posting here I guess depression is part of it plus it being such a change every Sept. no class full of students and nobody to hear all about prevention, I thought the whole world  wanted TO HEAR AND LEARN HEALTH AND PREVENTION, I WAS WOKEN UP 2 YRS AGO WHEN NOT ONE OF MY RESUMES WERE RETURNED. Our healthcare system I just realized we have a sick care system  not a wellness care system and although I pay a lot for my own insurance (615.00)a month -I only can get drugs & surgery - not any preventive care - massage , craniosacral release, swimming, ect... I hope to see   it different but after years of teaching  like DR Oz with a lot more on helping all students learn what was closest to them  to find the cure not mask it and I helped them use gold science by asking them to ask the right questions and going to the masters not the practices. The Cyberknife and all equipment must be paid for a the comment above was stated.. Unfortunately ,, Medicine has become a huge greedy business,,, as heart wrenching and as many years it has taken me to do this.... I now have to be sure if I get cut or fried to hopefully feel better after and pray  there won't be mistakes as this has been enough for me to handle. You posting this means a lot to me. I hope you know that, Your words are always inspirational, God Bless You all and  I hope t get responses...  Grace

MDemisay

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Re: THE YELLOW FLAG
« Reply #41 on: October 21, 2013, 08:39:00 pm »
Dear Grace,

My, that is a lot to handle! I would suggest taking it easy for a while and going easy on yourself. This condition can get you down in and of itself nevermind the multiple issues that you must be dealing with! If you need someone to talk to you can PM me if you like!

For now, take it easy on yourself and try to deal with things one at a time...Otherwise you will be overwhelmed!

Praying for you. I have found meditation helps along with directed prayer.

Mike
« Last Edit: October 22, 2013, 01:43:15 pm by MDemisay »
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: THE YELLOW FLAG
« Reply #42 on: August 07, 2014, 01:27:28 pm »
Hi friends,

Remember me?  It's time for all the newbies to learn what I learned the HARD WAY. Through reading this you are forwarned NOT to be "like Mike", each and everytime I overlooked my symptoms........I should have realized that 1 + 1 + 1 =3 but it made no sense!

Take a good look at your symptoms if you have them and if something doesn't add up get it checked out. Not many people are as fortunate as I was to have so many YELLOW FLAGS.

Here's hoping an old dredged up subject does some good. If you have read this already, pass on it, if not PASS IT ON!

Mike


1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: THE YELLOW FLAG
« Reply #43 on: August 20, 2014, 12:15:07 pm »
To All the Newbies aboard for the first time Welcome to your Personal Journey, (we are all here together like it or not)

I am not trying to preach or to impress anyone! Believe me, I do not want you to go through what it seems has been a long journey for me, hopefully by taking time to think about yourself and pay attention to yourself, you can avoid the obvious mistakes I made in not listening to what my body was trying to tell me all along.

Yet, I don't know your circumstances, it helps to "listen" with your awareness of your own body, if something doesn't "feel" right, it probably isn't. Take time out and get to a quiet spot and plan your next move.

Without taking some quality time for yourself out of your possibly fast paced life, you are bound to miss some YELLOW FLAGS.

Out of Concern,

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!