ANA Discussion Forum
General Category => AN Issues => Topic started by: Yardbird on December 10, 2008, 08:23:53 pm
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Hi,
This is my first post. My name is Joel, and I live in Los angeles, California. I have a left-side acoustic neuroma, medium sized, that I had treated with Gamma Knife in early 2006. Although I think the tumor's growth has been effectively halted, I have other serious post-treatment issues that I'll post about later. But here is my question for now:
I was recently diagnosed with congestive heart failure. I won't expand on that. I'll just say that my cardiologist has suggested it might be prudent (as in potentially life-saving) for me to have a combination pacemaker/defibrillator implanted in my chest. The d*** Cheney Special. I'm considering this, but I'm especially troubled by the fact that, according to the doctor, I could never again undergo an MRI. Of course, periodic MRI scans are required of me still at this point, and nowhere have I heard it suggested that a CT scan would suffice. But is my assumption correct? Is MRI the only approved, useful scan for the AN patient? Or would a CT scan provide sufficient information to a neurologist, neurosurgeon or oncologist about my tumor?
Thanks in advance for any helpful information.
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YardBird,
First of all, welcome to the place none of us wish we had reason to find. Welcome anyhow, because you've found a great place for support and answers to many questions (like you posed).
I'm not 100% positive, only your treating AN doctor will know for sure, but I think that a CT scan will suffice. An MRI with contrast has been dubbed as the "gold standard" for diagnosis of an AN, but I've also heard that a CT scan can detect them also. My hunch is that a CT scan will provide the doctor what we needs to monitor the progress of GK treatment / tumor.
I would suggest that you contact the doctor that's treating you (or did treat you) for the AN to make sure that if you go ahead with the procedure of having the pace maker installed that a CT scan will suffice for his needs. Certainly, you aren't the only person to have something that prevents an MRI being done so there must be an alternative. He would know what that "alternative" is..
Good luck to you, and please let us all know what you find out. Someone else may be in need of that information one of these days.
Regards,
Brian
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Dear Bryan,
Thanks for your reply. It's very sensible. I will ask an appropriate doctor. I'm not exactly being "treated" by one in any way, and have multiple and very heavy problems of head pressure/throbbing and never-recovered balance that no one including the doc who treated me and then six more neurologists and neurosurgeons have diagnosed. But it's about time to find someone to check how my tumor's doing, and when I've chosen that doctor I'll ask them. I was just hoping someone knew about this MRI conflict so that I could decide about the heart treatment soon. But again, thanks for responding. I am no stranger to online resources, and was on an acoustic neuroma mailing list soon after my diagnosis, and there I learned my first things about acoustic neuromas and how to research and consider treatment options. But that's for another post in which I'll introduce myself apart from this cardiology issue.
By the way, no problem, but my handle is really just as I typed it: yardbird. You may remember it as the name of a Brit rock group of the 60s, but that isn't the connection. it was the nickname of the great alto saxophone master Charlie Parker. That's where the rock group took its name from, as a tip of the hat. Hope that's clear? Again, thanks for replying to my post.
Joel
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According to House Ear Clinic, yes a CT scan will work:
"The CT Scan has proven to be effective in locating acoustic neuromas, although small tumors that are still confined to the internal auditory canal may not show up on standard CT Scans."
http://www.houseearclinic.com/acousticneuroma.htm
An MRI with contrast is the best, but I it sounds to me like you will be okay monitoring a treated AN with CT scans, especially if they use a contrast dye. Got to keep the ticker ticking!
Steve
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My husbands brother just had one of these put in the end of Nov. He is 51 and had a heart attack of unknown cause at age 28. He has a volume problem of some sort. Never expalined it well but his dr says he has potential for another MI and the defibrillator may be what saves him.
We went and saw him the eve of it as was in hospital overnight and was feeling well. He is not an ANer. I got to read his instruction book. The no MRI is in it but most activities will be allowed. Medtronic made his. He is wearing a sling to remind himself not to be raising his arm for some time while it heals. You also can't wear your cell phone right over it. He has to go back at 2 mos and they will sedate him and do a jolt of it to make sure it is working. He never had kids till he was 40 and 41 so has to stay in the best shape he can. His wife is the one who had the brain aneurysm the year before my 2001 surgery and I spent time with her while in ICU and was a very scary time. She was lucky to have done fairly well since. Cheryl R
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I agree go with the CT scans instead ... congestive heart failure is a much bigger problem than AN .. so in my opinion .. I would get the defiber, because the chance of a AN regrowth is smaller than heart problems ! of course talk to your doctor about it....
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Hi, Yardbird:
As a (distant) fan of the late, great 'Bird', (saxophonist Charlie Parker, who died when I was 12 years old) as well as a nominal admirer of the '60's blues/pop/rock group, 'The Yardbirds' I want to extend both my welcome and my sympathy in regards to the dilemma you're facing of whether or not to have a pacemaker/defibrillator installed to help reduce the possibility of having a heart attack. Obviously, this could well be a life or death situation and the utmost care should be taken in making that decision. I would certainly have the pacemaker installed and would follow the advice of the House Ear Clinic (via my fellow moderator, Steve) and trust a CT scan to pick up any growth in your AN for the foreseeable future. The pacemaker/defibrillator implantation is almost a necessity and the CT scan can do the job of monitoring your AN. Of course, this is only my opinion. I'm not a doctor and I won't suffer any negative consequences if I'm wrong, so this and any other advice you receive here from non-physicians can be ignored. Ultimately, its your decision - but I suspect your doctor will agree with the general consensus. Please let us know what you decide to do....and rest assured that our hopes and prayers are with you as you deal with this difficult and challenging situation.
Jim
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thanks to everyone who's replied to my inquiry. I'm sorry to be posting just a general thank-you note, but I'm a blind computer user who uses what's called a screen reader program. this adaptive technology is far from primitive, and I do email, read the New York Times and much else online, and help to support Amazon owner Jeff Bezos's quarterly profits quite handily. But this forum site, though I can imagine it may be pretty user-friendly if you can see to use it, is a little daunting to navigate by such means because it's very complex to learn your way around by my method. Eventually I may get the layout down better, but until I do, it's kind of awkward.
Regarding my question, thanks. I'm familiar with the House Ear Clinic, and was in fact diagnosed there although I chose Gamma Knife treatment elsewhere for reasons I explained in my original post. But I had never troubled myself to check to see what House said about CTscans being adeequate for following a tumor post-treatment. I'm not crazy about the claustorphobia thing, but I've gotten full sedation for MRI scans and will insist on the same if they are going to put my head into a cT scanner. But I feel reasured that it's not terribly primitive for the purpose compared to an MRI. Thanks so much for helping me digure this out.
By the way, may I reassure everyone that it's not a heart attack I'm worried about. I don't have any of the probems that usually figure into a heart attack. This is congestive heart failure, which is different. The danger here is sudden arrithmia, wild fluctuations in heartbeat that can kill you. That's the reason for considering the combo pacemaker/defibrillator. Hope that's clear? it's a serious problem to have, but it's not about a heart attack.
Thanks again to everyone, and I heard my computer speak a control on the page for cancelling a thread, but I wasn't sure how to use it. So may I say let's end the thread, and will someone do me the favor of making that adjustment? Many thanks. I have another question I must ask of the group, and I'll do that tomorrow. It's a very thorny problem with balance and intracranial pressure, for which I've been able to find no diagnosis or help yet. I will explain it and ask if anyone has had any similar experience.
Thanks again,
Joel
author=Yardbird link=topic=8236.msg88726#msg88726 date=1228962233]
Hi,
This is my first post. My name is Joel, and I live in Los angeles, California. I have a left-side acoustic neuroma, medium sized, that I had treated with Gamma Knife in early 2006. Although I think the tumor's growth has been effectively halted, I have other serious post-treatment issues that I'll post about later. But here is my question for now:
I was recently diagnosed with congestive heart failure. I won't expand on that. I'll just say that my cardiologist has suggested it might be prudent (as in potentially life-saving) for me to have a combination pacemaker/defibrillator implanted in my chest. The d*** Cheney Special. I'm considering this, but I'm especially troubled by the fact that, according to the doctor, I could never again undergo an MRI. Of course, periodic MRI scans are required of me still at this point, and nowhere have I heard it suggested that a CT scan would suffice. But is my assumption correct? Is MRI the only approved, useful scan for the AN patient? Or would a CT scan provide sufficient information to a neurologist, neurosurgeon or oncologist about my tumor?
Thanks in advance for any helpful information.
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