ANA Discussion Forum
General Category => AN Issues => Topic started by: Gloriann on May 02, 2008, 01:56:58 pm
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For those of you who have had surgery to remove an acoustic neuroma, like I had in 2001, how does your doctor handle going over the follow up MRI's with you? Does he just glance at it and tell you it's just scar tissue or regrowth of the tumor? Or does he actually take the time to show you (point to if neccessary) the spot where the surgery was done?
I have not had any physician take up much time with me on these MRI's and now they are saying the tumor is back. Last night I sat here at my computer trying to see something that looks like a tumor on the computer disc I have of my last MRI and all I see is scattered whiteness, not a formed tumor like I saw prior to surgery, so I can't help but wonder if this is just scar tissue. If so, why has it increased in size?
It's a shame to leave the doctors office with unanswered questions.
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Gloriann -
I just had my first post op MRI about 2 1/2 weeks ago, but I don't know the answer to your question. My doc and I decided we'd go over the results of my MRI in early June when I see him to get my BAHA processor. In the meantime, because I didn't want to wait until June to find out my results, I emailed him and asked him to confirm that the results were "good". After he responded to my email, I stopped by the hospital and picked up a copy of the radiology report and a CD of my films.
Although my MRI showed no regrowth or other issues, I still plan to bring the report and the CD with me to my appointment in June and ask my doc to review them with me. IMO, doctors should take the time to review MRI results with patients - especially if that is what their patients want. I also think that if you leave a doctor's office with unanswered questions, no reasonable doctor would object to you calling him or scheduling another appointment to discuss your concerns. My doctor always says to call if I have questions - and believe me, I have.
As far as trying to find your AN on the computer disc, I know exactly what you mean. When I was first diagnosed with my AN, I picked up the films from my MRI and looked and looked, but couldn't see any tumor. When I met with the neurosurgeon prior to my surgery, I asked him to show me on the films where it was. Interestingly enough, it was right in front of my nose - big as life - but it wasn't obvious to me until he pointed it out ::)
Jan
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Thank you, Jan, for replying to my message.
This neurosurgeon told me he only saw scar tissue on every MRI done after my surgery and he never did any comparisons to any previous MRI's. On my last trip to see him, 2 yrs ago, I asked if he was going to compare that MRI to the last one and he told me he did not have to. He also told me that I did not ever have to have any more MRI's done or come back to his office.
I was SHOCKED when I obtained a copy of the MRI report a few weeks later and read that there was a recurrent tumor that had been growing in size since 2004. When I called the doctors office to ask him about this he said he did not agree with these reports. I got copies of all my records from his office and took them to another neurosurgeon in another city, closer to my home. He has seen me twice in the past 2 years and he agrees with the radiologist, that there is a recurrent tumor which is growing.
I am a little disappointed in this new doctor who does not point to anything so I can understand what he is talking about. Now he wants to do Gamma Knife to make the tumor stop growing, but until I can actually see something that looks like a tumor I am hesitating to have this done.
I had a nice talk two years ago with the radiologist who has written up the MRI reports here in town on all my MRI's, so I am going to contact him again to see if he can spend some time talking to me about how he came to the conclusions he has.
I am one confused person right now.
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Hi, Gloriann:
I believe that a patient must have complete confidence as well as a good relationship with their doctor, especially AN patients, who often have post-op issues. Whether surgery or radiation is their treatment, re-growth is always going to be a concern...and a valid one. That your current doctor has disappointed you by not 'walking you through' your MRI scan is problematic. You are right to be put off by his lack of specificity and to hesitate on a GK procedure until you feel you have a clear idea of what kind of re-growth you have. The radiologist you referred to should be able to give you a more explicit explanation of what the scans actually showed, one way or the other, but frankly, your doctor should have offered you that information. You shouldn't have to try to find your AN on the MRI scan, like looking for clues to a mystery, because that is what your doctor is supposed to do. I would insist on a full explanation - in 'layman's terms'- of my MRI scan from my neurosurgeon, but fortunately, he gives me that information without my asking.
Confusion should not be part of your AN diagnosis. I really hope you can receive the information you seek, whether from the radiologist or the surgeon.
Jim
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Gloriann -
I agree with Jim. I, too, feel you definitely need complete confidence in, and a good relationship with, your doctor.
Perhaps you should consider getting a third opinion. From what you are saying, it doesn't sound like you are really confident in, or comfortable with, the old or the new doctor. On one hand, you aren't sure if the old doctor is reading your results correctly; on the other, the new doctor seems to be rushing you into treatment when you are not totally sure it's necessary. Maybe a third doctor could shed some light on the situation; it couldn't hurt.
Jan
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Hi Gloriann,
Here in Portland, OR, at Epic Imaging, they have two ENT radiologists. Apparently these are radiologists who specialize in reading MRI's and other imaging films taken of areas in the sinuses, skull base and spine, mirroring the areas of interest to ENTs. My two MRIs have both been read by one of them, and the reports are quite clear about what they see, what makes them think it is a vestibular schwannoma, and what else they see. Of course mine are not post surgery MRIs, but I imagine they have seen quite a few of those as well. I guess my point is that radiologists specialize in reading MRIs, and I have a tendency to trust their readings over other doctors, for whom it is more of a hobby.
Besides that, their language is delightful. "Focal enhancement in the left internal auditory canal is again appreciated." His use of "again" suggests I have had many of these, though it is only the second one. But at least he appreciates seeing it; I would be less satisfied if he merely observed it. His impression, as they call it, is that the enhancement is "compatible" with an intracanalicular schwannoma. Which is as close as any radiologist seems to get to saying "you've got an AN." Then he redeems himself fully, by adding "This measures slightly smaller than on the previous exam," which is of course music to my ears.
I don't think you need to rush either. Take the time you need, and speak to the people you need to, and get clear in your mind about what is going on, what they are seeing, and what, if anything, needs to be done about it. Maybe you can ask for a copy of the radiologist's report, take it home and read it, then go back with specific questions.
Hope you get somewhere with it.
Steve
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Hi Gloriann,
Have you thought about sending all of your films to House? I have not done so myself, but understand that they will examine your films and give you their opinion at no charge, and without too much delay. They are, if not the best facility in the country, certainly one of the best. I am sure that someone else on the forum can chime in with the link, or you can search it yourself.
Steve, thanks for the chuckle this morning!
Tamara
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For what it is worth my surgeon has a neuroradiologist read my post surgery MR's as they have more expertise than a radiologist. My post MR reports from the hospital radiologist in town where I live, say tumor recurrance, but could be scar tissue (not very definative). When I get a phone call from my doctor who performed the surgery he says this is definately scar tissue and the neuroradiologist he has reads this concures. So, be sure who is reading your films as this is just as important they are qualified/experienced as your surgeon is to remove an AN.
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Steve,
I have read all of the MRI reports and copies of them. They read similar to the way you have described yours, but not quite as poetic. Ha! Ha!
I appreciate all of the responses here. I hope to hear back from the radiologost soon and also the neurosurgeaon and/or his nurse.
The radiologist's reports from 2006 and this year seem very definite that this is a recurrent tumor, not scar tissue, and he explained to me two years ago how he tells scar tissue from a tumor, but I can't remember what he said. It was too technical of an explantion for me I guess.
I am disappointed that when the neurosurgeon saw me a few weeks ago and was viewing my MRI film he said something about seeing scar tissue, so I asked him if this is all that is showing up. His reply was, "whatever it is, it is growing." Then he said he could go ahead and do the Gamma Knife "to give me peace of mind" or we could wait another year and do another MRI.
When I got home I kept thinking of all this and a few days later I sent him an e-mail and asked him point-blank if what he saw on the film was scar tissue or the tumor. I reminded him that this is what I have been trying to find out for the past two years and why I came to him in the first place. He replied back saying he did not believe it was scar tissue, but is a recurrent tumor. I don't know why he could not have said that in his office.
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Gloriann,
With a story like that, I think you are a shoe-in for a sympathy reading from one of the cyberknife doctors. They do them free anyway.:) If you can get a copy of a recent MRI on CD (call the lab that did the MRI), and a copy of the radiologist's report, and mail them off, they would most likely take a look. I'm thinking of Dr. Chang at Stanford, or Dr. Medbery in Oklahoma in particular.
The cyberknife support link to doctors is http://www.cyberknifesupport.org/about_the_doctors.html. Send one of them an email, or even start with a question for them on the CK forum: http://www.cyberknifesupport.org/forum/. Dr. Medbery seems to answer most questions there within days.
You are getting waffling answers, and need to get a good solid opinion from someone who has looked at post-AN-surgery MRI's. I'm a little worried that your neurosurgeon doesn't want to find anything but scar tissue, and is not being straightforward about it. I guess that is what is bugging you, too.
Hope you get a more useful answer soon.
Steve
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Hi Gloriann,
I am sorry to hear you are enduring this again. In follow up to Steve's post, there are 2 docs on the CK Patient support board, that treat head tumors (such as AN's and more).... that will read the films. Dr. Medbery, as noted by Steve, as well as Dr. Jerome Spunberg (located in FL). Both are top notch, have no issues reading films sent to them and are both very quick in response (on phone, as I first hand experienced when I sent my films, as well as email or site posting). I would concur with the suggestion Steve has made, as they are impartial to your situation. FYI, Dr. Medbery has been performing GK as well as CK for many years, thus, if your current doc is noting GK, Dr. Medbery can give you terrific insight, as he's very well versed in all treatment protocols (surgical and radio) of AN's.
Just my thought... I have faith that you will do what is best for you.
Phyl
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Hi, Gloriann,
I watched for 9 years my "scar tissue" finally become a tumor and I had a surgery on it (again!) last year. First of all, many doctors expained to me that a real scar tissue does not grow but the tumor does. So, it is important to establish a pattern of growth over the years. That is what the neurosurgeons are looking for. Secondly, the second time my tumor that highlighted on the MRI was no longer a solid mass but was made of bits and pieces, just like yours. It was also attached to the critical structures. I was explained that the original neurosurgeon left them there to avoid damaging these critical structures.
There was quite a bit of disagreement between the original neurosurgeon and the radiologist. The former claimed it was scar tissue, the latter said "residual/recurrent tumor". Then after a few years the pattern of growth was evident and the original neurosurgeon agreed that it was a tumor indeed. He recommended another surgery ASAP but added that "it would not be as horrendous as the first". I waited 9 years instead and had another surgery on it again, this time in California.
I hope this information helps. Good luck!
Eve
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So, it is important to establish a pattern of growth over the years. That is what the neurosurgeons are looking for.
Good point, Eve.
That's probably why most docs recommend you have your MRI at the same place each year if possible.
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I did not even know about Cyberknife, but after reading about it now, it seems like it would be better endured since you don't have to have a frame screwed into your skull. I wonder if it is as accurate as Gamma Knife?
Good news today! I spoke with the radiologist over the phone, the one who has been reading all of my MRI's, and he has agree to meet with me in person this coming Friday morning to look at all my MRI's, since the tumor was removed. He did say that scar tissue actually shrinks as time goes by, so things are still pointing towards a tumor being there.
The story from Jerseygirl sounds so much like mine and what I am afraid could happen to me if I ignore this.
Everything I do depends on the MRI report, so talking to the person who has been reading mine and wrote up these reports should help.
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Gloriann -
I'm happy to hear you will be meeting with the radiologist on Friday.
Sitting down with him and going over your MRI results is sure to shed some light on what's happening inside your head.
Good luck,
Jan
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I did not even know about Cyberknife, but after reading about it now, it seems like it would be better endured since you don't have to have a frame screwed into your skull. I wonder if it is as accurate as Gamma Knife?
Under the category of FWIW ( for what it's worth). Yes, CK is actually slightly more accurate than GK with a total error tested around .8-.9 mm. GK typically is shown to be in the 1.1 to 1.2 mm error range. Total error for these machines is typically comprised of 1) the machine itself, 2) the CT scan and 3) the frame ( GK only). The accuracy difference is not significant in choosing between these two machines but can be in considering other radiotherapy machines where the error range can be from 2-4 mm. Primary difference between CK and GK is not needing the frame and the option to do fractions.
For inquiring minds ;)
Mark
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i learned early on that if i didnt understand the Dr.s explanations, it was my job to bug them till i did.
the mri stuff and cat scans seemed to me to be a mess. LOL
but the Dr. i have had took the time to show me what the important details were . and that was good especially post surgery........
Steve W...... Seabrook Tx
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I met with the radiologist at the hospital and the tumor showed up very well on his screen! Since he could magnify the image I could see it better than on my computer screen here at home. There is no doubt in my mind now that this is not scar tissue, but is a recurrent tumor.
I took a tour of the Gamma Knife facility one day last week at the hospital, but after reading about all of the risks involved with this strong dose of radiation, I have deceided not to have it done right now and maybe not at all.
One of the surgeons involved with my surgery 7 years ago talked to me recently and said that a second surgery, like the one I had 7 years ago, would really not be any more riskier than Gamma Knife. He said the facial nerve would not be an issue now since it was re-routed with the nerve graft, so they could go back in and get it all this time.
This is "food for thought".
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Gloriann -
I'm sorry to hear you have regrowth. I was hoping it was only scar tissue.
It's good to know that you have the option of GK or surgery. Take some time to think about your options before you make a decision.
Remember we're here to support you regardless of the choice you make.
Jan
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Hi, Gloriann:
While the news from the radiologist was not what we had all hoped for (scar tissue), at least the mystery has been solved. Unfortunately, it's a regrowth. Now the question is: what to do? You appear to be hesitant regarding radiation treatment and leaning toward surgery, which is certainly your choice to make. No matter what others might think or do in this situation, it's hypothetical to them but very real-life to you so that decision (surgery vs radiation) is yours, alone, and we'll support you in whatever approach you decide to take. I would suggest being a bit cautious and not feel rushed into a decision, as it really doesn't seem necessary at this point.
We wish you peace and a good outcome from whatever treatment you decide on. :)
Jim
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Hi Gloriann,
I am glad to hear that you finally got to a clear answer about what is going on. I think watch and wait is a fine plan; I might want that next MRI in 6 months instead of a year, but that is just nit-picking.
There are plenty of people here to discuss treatment options with, if you are interested, and who will support you if and when the time comes to do something.
Meanwhile, take care.
Steve
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I just wanted you all to know that I saw the neurosurgeon on July 11, the one who operated on me back in 2001. This time he took more time looking over my last 2 MRI's. I was satisfied with the way he compared them, instead of only looking at the last one alone, the way he had done in the past. He recommended Gamma Knife to treat this, if it continues to grow. He is not in favor of my having a second surgery, like the ear surgeon had talked to me about in May.
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Gloriann,
Thanks for the updated post on your dx of regrowth. I'm curious to know if a neuroradiologist has been included in the dx and what size do they put this regrowth at? I see you have had nerve grafting and maybe another surgery will be too much for the nerve. How do you feel about the GK treatment? You have to be feeling somewhat more comfortable now that another opinion is considered, but this in no way makes it any easier on you. All my best to you during this time--blessings to you and your family!
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The radiologist who has been reading most of my MRI's has put the regrowth at 10 mm by 17 mm at the present time (in March), but the neurosurgeon got slightly smaller measurements (10 by 15). There was another radiologist who looked at my last two sets of films about a month ago, along with the ear surgeon who operated on me, and their measurements were also smaller.
I was hoping this could still be just scar tissue, but I think we have pretty much ruled that out now.
The ear surgeon told me that since my facial nerve had been grafted and re-routed, it would not be a factor in a second surgery, but the neurosurgeon told me that it would be at risk. Different doctors with different opinions, even if they have worked together.
I am feeling more comfortable with Gamma Knife now because the way Dr Robertson explained it, when I told him I am afraid of the risks, is that when GK first came out they were using too high of a dose of radiation and this caused too many complications. He said now they use less and the complications have gone down from 14 to 1 percent. He said when a person reads in a pamphlet or brochure about possible risks involved they don't see these percentages. I am glad he shared that with me.
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He also told me that I did not ever have to have any more MRI's done or come back to his office.
What the H....? Why would your doctor say that. To me that is a problem .
I am sorry you are having a recurrence. Listen to your intuition. It is so hard when you get so many opinions.
Robyn