ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: BRS89 on November 04, 2012, 12:08:16 pm
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This board has been very helpful to myself, and obviously others, who need to lean on the experience of others to cope with something quite scary to them. I have spent the past few years fretting, worrying, studying, contemplating, all the different things that are happening to me physically, or could happen to me when I have my surgery early next month. And it seemed like the worst thing I would ever have to overcome.
Until October 22, 2012. I was rushed to the hospital in an ambulance for the first time in my life, and spent a week in cardiac ER. After an angiogram, echo scan, and CT scan; a 4.5 ascending aortic aneurysm was found on my aorta above my heart. From an active 44 year old football coach, who has never smoked, doesn't drink, never has taken drugs, and slim and athletic with quote, "the blood pressure of an 18 year old", to a life threatening situation that I inherited from my illustrious DNA at birth, but never knew. This is the same thing John Ritter passed away with.
They do the same thing with aneurysm's as they do with AN's. They wait until they reach 5.0cm and then do open heart surgery to repair. The reason, more death's occur on the operating table than dissect and burst before 5.0cm. Playing the odds.
Now my doctors are discussing what needs to happen as we prepare for what I thought was the surgery event and recovery of my life next month. Instead, this AN surgery is feeling very incidental to what my real challenge is going to be in future, if I am lucky enough to make it there.
I thought I had it pretty bad. I felt that I was really unlucky getting an AN for reasons no one could tell me. But, now getting the news of the AA for no reasons at all as well, it feels quite certain I have made Mother Nature pretty angry at some point along the way.
I have a great wife and son, and have always felt blessed and lucky, I didn't need any reminders to appreciate them. But, I didn't think it could get worse than an AN in my prime working years. I was wrong.
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Oh my! Thank goodness you caught the aneurysm soon enough! Some of us on this list have had other medical diagnoses that put the AN into perspective. Will you proceed with the AN treatment or put that on hold for now? What a shock this all must be to you and your family, especially since you are such a healthy man. My thoughts are with you and your family.
Karen
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Hi Karen,
I meet my AN surgeon this Thursday to finalize the AN surgery for after Thanksgiving. This has been a big shock to the family, but you are correct. Many who have the AA do not know it until it is too late. I have the chance of at least monitoring it and hoping it maintains. Another watch and wait scenario. It is just so odd to be laser beamed on the AN and then get something that makes the AN a secondary thought. Thank you for the thoughts, they are appreciated. Raising my son was the only wish I ever made.
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Brandon .....
You certainly did not need this additional stressor in your life.
If it is any consolation, my husband also has an ascending aortic aneurysm (AAA in medical shorthand) of 4.3 cm in size. It has stayed that way since first discovered three years ago (with a magnetic resonance angiogram for other reasons). He underwent an emergency appendectomy the end of June with no ill effects. He was, of course, monitored very closely during and following surgery. He feels fine and is determined not to live his life in fear ..... not an easy thing to do, I realize.
Did you decide to go with the doctor in Ft. Worth for the AN removal/treatment?
Many thoughts and prayers.
Clarice
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Please let us know how things go for you. :)
Karen
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Brandon ~
Your post is challenging in the sense that it helps all of us (AN patients) put our situation in perspective, and I thank you for doing so.
Although 15 years your senior and not really 'athletic',' I'm also in good health (22.5 BMI) and viewed my AN as an impertinent intruder that I wanted gone ASAP. I got my wish and was blessed to be spared hardly any complications from the debulking surgery or the radiation that followed (as planned). However, during my AN experience (discovery, hospitalization, recovery) I tried to remember that (a) I had enjoyed a relatively long life (I was then a lad of 63) with almost no medical problems and, (b) it could be worse. I was thinking cancer but an aortic aneurysm would have just as daunting.
Of course I wish you great success with your upcoming AN surgery and hope that your AA doesn't pose any problems, then or later.
Jim
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Clarice,
Dr. Tom Ellis is who will be doing the surgery here in Fort Worth. He is consistently voted a top neurosurgeon here, and I feel he can do the job.
The positive things said here matter greatly, I think those still in the storm would all agree. Thanks. My hurdles I still have to jump.
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Thanks, Brandon .....
You know you will have the collective support of many on this forum!
Keep us posted as the surgery date approaches.
Continuing prayers .....
Clarice
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Brandon,
This certainly is a lot to deal with and I can't even imagine how you feel. I'm 43 and have a great family: a wonderful wife and two great sons, 13 and 12. So, I do completely understand your comment about being there for your son. Having important people in your life that rely upon you is a powerful motivator to get better.
The only advice (inadequate as it is) I can give you is to keep taking things one step at a time and focus on what you can control. It sounds like you are doing that by moving forward with your AN surgery. Get that one done, including a successful recovery, and then pivot to this new hurdle.
Best of luck to you with your surgery after Thanksgiving. My surgery is scheduled at the House Clinic on the 13th. I am hoping to be able to fly home (Maryland) on my oldest son's 14th birthday, 11/23. That is what will be my motivation after surgery - to get home to see him blow out his birthday candles.
Best wishes,
Ken
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You both sound like loving fathers. Your kids are fortunate to have you. Take good care of yourselves. I agree with trying to take one day at a time.
Karen
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Surgery - January 23rd.
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Brandon,
I'm glad you got your date set and I hope it helps you put your mind at rest a little bit.
I have been thinking about you as I have been recovering in la after my surgery.
Focus for me like you, has been my family. My wife made a picture video of my boys for me to watch and although it is only 5 minutes long, I haven't made it all the way through yet b/c of tears.
Will you be able to make any progress on your heart issue while the clock winds down to your successful AN surgery?
Stay positive,
Ken
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Brandon - Thinking of you and your family xx
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Brandon,
I'm glad you got your date set and I hope it helps you put your mind at rest a little bit.
I have been thinking about you as I have been recovering in la after my surgery.
Focus for me like you, has been my family. My wife made a picture video of my boys for me to watch and although it is only 5 minutes long, I haven't made it all the way through yet b/c of tears.
Will you be able to make any progress on your heart issue while the clock winds down to your successful AN surgery?
Stay positive,
Ken
You have been in my thoughts as well. Hoping the recovery is smooth and you get back to doing what you love very soon.
My Dr. had a run of "life threatening" surgeries that bumped some of us less than emergency surgeries. I am on call if things happen that way, otherwise it is January.
The real good news is my heart is fine, but the aorta has an issue that, much like the AN, you wait and watch until it gets big enough to take out. The difference is one can burst, and one won't. That is the whole new arena of fear that is upon me. But, keeping my blood pressure low and eating healthy can potentially help me. It hasn't stopped me, I coached my son Saturday to the Big City Championship in football, in his first year, so we are all smiles today. Tomorrow will take care of itself.
Thank you for taking to time to write me in your recovery phase. I am rooting for you.
Brandon
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You have had so much to deal with, Brandon. Praying together with others on this forum for strength and wisdom and health ...
Mil
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Congrats on the championship. I'm sure you are both ecstatic. My boys both played on their middle school soccer team this year and I tried to make every game. Rooting so hard for something good to happen for them so that we could all just be happy.
Sounds like you are going to have a couple of weeks in Jan and Feb where you can start game planning for the defense of your title next year.
Sounds like you are doing well which is great to hear.
Happy Thanksgiving. Enjoy watching the big boys play on Thursday.
ken
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Surgery - January 23rd.
Hi Brandon;
Yes. How large is the AN and what are your symptoms and age? Is it the 5 cm?
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Surgery - January 23rd.
Hi Brandon;
Yes. How large is the AN and what are your symptoms and age? Is it the 5 cm?
The AN is 2.5cm - the symptoms are considerable one sided tinnitus, some facial tingling, 60% hearing loss on bad side, and some strange things such as mental clarity, remembering a word for something, a bit short term memory lapses, all of which have concerned me as I have a job that requires those things every moment.
I am 44.
I have also been diagnosed recently with an ascending aortic aneurysm that is 4.5cm that will require constant vigilance.
So, with 2 strikes against me, I will go into surgery on January 23rd at 5:30am and hopefully get one challenging event behind me as many of the good people here have done.
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Hi Brandon;
Did you ever consider GK radiation for the AN to avoid surgical trauma? I'm sure by now you've been through MRIs and consults, with a lot of thought/research of you own, however.
The mental clarity and short term memory loss ( dropping a thought or word ) seems likely related to vestibular function. Some report feeling better almost immediately after radiation Tx.
Retaining that bit of hearing seems tenuous at best. Zero, if you have Translab. Would say, however, Translab provides the best facial nerve view of the 3 standard surgical approaches.
Best wishes in all. You have a challenging road ahead!
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Closer and closer.
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Quick question to those in the know.
Is a Transcondylar (far lateral) approach to posterior cranial fossa - a translab or does it mean something else. Just got my insurance approval from Blue Cross and they reference this. I was told by my doctor I was getting a retrosigmoid approach. I have a call in, but was just checking.
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Try and stay busy this week. I took off the week before surgery and took care of all of the leaves in my yard plus a lot of little projects that I had been putting off and knew would drive me crazy if they weren't done and I was sitting around the house unable to do them during the recovery phase. Plus I did some fun things: took the boys out for pizza, got a massage, and saw the James Bond Skyfall movie with the family.
In 1 week you will be doing it and in 2 weeks you will be at home being taken care of by your family.
Stay positive and you will be fine.
Ken
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Ok, barring any last minute stoppages, I am now where many of you were at some distant point in the past.
5am tomorrow, thanks for all the help, especially Ken for the emails.
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Good luck for tomorrow xx
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Praying for you. It will get better. Mil
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Done. Healing needed next. Thanks. update experiences when brain works again.
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Brandon .....
So good to read your post and apparently all went as planned. Rest and listen to your body.
Continuing prayers for a quick and uneventful recovery!
Clarice
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You have arrived on the other side! May you feel supported on your healing journey. I'll be interested to hear the details.
Karen
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H had a doozy. Tumor wrapped around my facial nerve, touching my brain stem, and optic nerve. Lasted 8 hours, but the stud has my face symmetrical - no weakness. He left 5% to monitor the facial nerve that we will watch. I came home last night. Eyes can't focus and feeling wonki-headed, pain in incision, but I am scooting round to gain strength when I can. I feel inarticulate trying to write this, but wanted to say thanks for the Good Works you do. There was no other place to go help me understand what was ahead. Thank you all. I hugged my 6 yr old son today. No better feeling on planet earth.
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Wow! You had some additional complexities. I'm glad to hear you are home hugging your child. We are here and I really want to hear updates if you want to share. Continued healing and caring thoughts coming your way.
Karen
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Brandon,
So glad to see your post. Congratulations on getting back home so quickly. Now comes the hard part of taking it easy and giving yourself time to recover. Hang in there....things happen slowly, but you will feel a little better every day.
Ken