Following Your Gut or Details Do Matter!

[MDemisay]

My AN Friends,


Eureka success! Small successes are vital too! Talk about being snafu'd. Today, I am happy, I can proceed with my Gamma Knife procedure on Monday June 11 and "kill Irv" as I have been wanting to do since February. On or about May 30th I got a call from Dr.Sisti's secretary faxing to my home paperwork which consisted of waiver forms and a lab test. More about the lab test later.

Anyway, it had to be done I had to sign and so did my wife as my witness(on May 30th). Anyway, I faxed the forms back to the secretary.....All was well and good until I remembered the bit about the lab test they wanted a BUN and a Creatinin level on me which I had done at 7:00 am in the morning yesterday. I made sure to make it a rush order the secretary needed it to be in her hand next day(today).

This morning, second thing in the morning, (on a hunch) I decided to follow up at about 11:30 in the morning, I followed up with it and it still hadn't been faxed! I went back into Staten Island Unversity Hospital lab and checked it out with a representative there after about an hour and a half of faxing Dr. Sisti's fax machine 4 times to one machine and once to another remote machine on Dr.Sisti's end. We finally got through!


Moral of the story: Follow your gut in all cases! Down to the tiniest detail because if I had let this one go and hadn't followed up it would have no doubt delayed my procedure and messed me up with my treatment date.

Medical clearance is important, it's a showstopper in most cases!


Now I can proceed to kill Irv, and won't have to delay his date with destiny.

His elimination begins on June 11th. No reprieve! Anyone care to play Taps?


(Older Folks will remember what SNAFU means, it's a WWII reference it means Situation Normal, All F......... Up!)

Mike

I had the last laugh on Murphy's Law in this case!

[millie]

Medical clearance is important is an understatement.  While my husband was getting  medical clearance on his heart for spine surgery, tests revealed he needed a quadruple bypass and a new aortic valve.  So on the day he was to have sine surgery at Hospital for Special Surgery (NYC) he had open heart at Saint Francis in Roslyn (a heart center in L.I.)  Thank God everything is going well now-although as "posties" have posted, he too is very tired after such a huge surgery.
I understand radiation is less invasive but very successful depending on one's a.n. I am looking to you for insight as I watch and wait and decide.  Prayers.  Millie

[MDemisay]

Millie,

As it turns out, my problems stem from a birth defect which caused me to have a stroke when I was 10 years old my family doctor at the time misdiagnosed it as  a concussion and it was masked as one because at the time I had been bicycle racing and had fallen head first over the handle bars. I slept at home for about two weeks in the summertime so it didn't affect my schooling. That was in 1967.

In 1970, I had a stroke which left me unable to talk and unable to focus my eyes very well. For some time after I received speech therapy. But they still could not operate. In 1974, at 17, I had another stroke this one, I had had  my first brain operation (microsurgery) very new at the time. It took them 12 hours with a long process of recovery. Back in the 70's there wasn't the level of physical therapy there is now. So my right hand still remains mostly unusable (fine motor skills-wise).

For a time, my life went along just fine, I graduated college, got married and have been fortunate to have been working in my family business since the mid 70's. I am married for 32 years now and my daughter just graduated college.

Back in 2004, I had to have yet another brain operation for an Acoustic Neuroma. Let me tell you, brain surgery is not easy, I wanted to do everything to avoid it, but I had a large (3.1 cm) tumor, I went to 13 Neurosurgeons and  1 Neurooncologist to have a Gamma Knife consultation. 

It took along selection process, all summer long, for me to decide to have it debulked. I finally had my operation and was in the hospital for the Thanksgiving holiday that year (2004) I thought I was done with this tumor but no, so here I am back again.

Patiently waiting for a chance to deal with the most important part of the human body again, my brain.

Will I finally be able to close this chapter of my life? Who knows, only God! I have faith that I will. I have faith that we will be able to kill 'Irv'!


Finally, let me say once and for all, I'd be a basket case, if it weren't for kind people as yourselves reading my blogs about my frustrations and encouraging me to go forward with my treatment plan. Even if you don't comment, you've read it, that's enough.

Mike

If I inspire others to action, about their individual AN stories, so be it. Then I have accomplished something! To everybody: PAY ATTENTION TO THE SUBTLE HINTS YOUR BODY GIVES YOU! Falling off balance is one clue I missed, I fell in the shower while away on a business trip in 1995. While taking a shower in early 2000, I had a fullness feeling in my ear I went to an ENT man who prescribed a hearing aid for me without a CT scan. I lost the hearing aid had a fall in a department store and when I went for a replacement hearing aid my ENT a different one sent me for a CT scan since I couldn't have an MRI. It was my second ENT man who discovered my AN.

So I am here to tell you pay attention to your body,if something doesn't seem quite right to you, it probably isn't!!! Follow your gut! Details do matter!

[millie]

Thank you Mike.
Your words are great support and inspiration. 
Praying for a successful outcome of June 11th.
Millie

[It is what it is]

Great advice!

[Soundy]

had I not listened to gut feeling I probably wouldn't be here... my BB sized AN had been watched for 3 years with MRIS every 3 month for first year then every 6 months... in October 2006 doctors decided that we could go a year til next MRI ...YAY

but in April I didn't feel right...my face felt funny ... not really numb but hot right and hearing was off a little and I had a continual wheeze that was not like my usual asthma wheeze  ...so called neuro and got in for an MRI within 24 hours and found Bennie had been putting on weight and leaning on my brain stem ... told that I had 3 months to do something that when Bennie sat on stem I would just wake up one morning dead because I would stop breathing

so I got things ( including funeral( in order , took my 7 and 9 year old out to buy backless prom type dresses because my youngest was afraid she would not get the experience of going shopping for prom dresses with Mom... ran Day camp from June 5th through 29th , walked in the Relay for life the evening of the 30th into the morning of  first of July and had surgery on the 2nd

the neuro said before the MRI that it was probably nothing to worry about , but had I not listened to that gut feeling I probably wouldn't be typing this right now

none of the issues I had before that last MRI were painful or interfered with my life ...more annoying than anything ...I could have just ignored them ...thankfully gut talked louder

[It is what it is]

Very very scary story!  This reinforces my decision to get this thing out soon.  Thanks for sharing.

[millie]

Hi Soundy, It Is, and of course, Demisay-
What scary stories is right!  I cannot belive you did all that, Soundy, while waiting for your treatment.  I have had an intensifying of my symptoms but put them off first, due to my husband's open heart surgery May 3, and two, because I thought I had to watch and wait six months.  I need to be more proactive.  I am scheduling a new MRI this week.  The doctors said wait Six months, but that was back in Feb, and my hearing is definitely wose or gone in my left ear.  I really don't want to wake up dead!  I do have more feelings of "disequilibrium" -a word I found in another thread which I think is a GREAT words to describe the feeling in the head.  I had been pretty set on having surgery some day, but now I read the gamma knife may be a good option too, as my hearing is gone anyway.  I just want relief from the fullness and disequilibrium-especially the latter.
Watching and waiting with you guys.  And great job and thanks, Demisay!
Millie

[MDemisay]

Your welcome Millie and others out there! Had I not had right sided weakness and balance issues already, I probably would have detected it earlier in my life. I am not one to complain but there are things that a stroke survivor does not detect as easily particularly having lack of sensation in my right side and when it comes to the sole of my right foot, I cannot tell when I have traction and when I do not......of course I could have told myself not to get in that shower in Albany, NY without a bath mat but at the time I had a business meeting to attend and legislators to see.

Three broken ribs did much to stop me, I healed well thankfully, but did I pay attention? Had I payed attention I could have avoided further injury let me tell you I have broken each of my fingers at least twice on my right hand and my right arm twice!

Do I feel  like an idiot? I answer unabashedly, yes! 

The last time I went to see the hand surgeon ( on the repair of my broken wrist) he joked with me "You are a repeat customer, I should give you a discount!"

Obviously, he WAS joking!

I am glad to see my stories are not just slapstick humor but they are also informative.

Mike