Wow! That's news to me. I have never heard of that as a possibility. I have only been researching for about two years, so I don't know a lot yet. I will ask my neurologist about it though. Let us know what you decide. Biopsy of a brain lesion sounds like risky business, so I'd want sound reasoning from my doctor- and lots of my own research first.
Hi, MAndy and welcome to our little corner of the web. I hope you find the information here useful and the company pleasant. Weekends are a bit slow around here, but the action in responses will pick up later tonight.
Now for your question - I am absolutely dumbfounded by this from. From what I know about enhancing lesions, the enhancement comes from the disease activity forming new lesions and those lesions are only "new" and enhanced with gadolinium for no more than 42 days. After that point they are still there but don't enhance.
What you are saying here totally changes that concept for me and I will definitely have to ask around and do some more research on this idea.. Now if your doctors are recommended a closer look, I think I would be inclined to listen to them After all, they are the ones who have studied these ideas for years and should have a clue.
Please do stick around and let us know what the doctors do next- I am very much interested. And I hope you will stick around for the companionship.
Has the lesion changed at all during the six months ... gotten bigger (or smaller) or changed shape? Have you had any other lesions that initially enhanced, but then quieted down? They may want to biopsy this lesion to be sure it is, in fact, an MS lesion. There are many types of lesions that can enhance on an MRI.
Do you know where in the white matter this lesion is? Some areas are easier to get to and biopsy than others. If you do need the biopsy, just be sure to find a good neurosurgeon - you want someone with alot of experience and a good track record if they have to go poking around in there.... :-)
I can't answer your questions but I've had a brain biopsy and could answer any questions about my own experience, if you'd like.
Adding on a welcome to you. I'm sorry you have to worry about this, but indeed this is not something I've read in the research regarding MS lesions either. Not saying it isn't so, just that if it's this hard to find, and less common, it's not typical.
I hope you are in good hands, with neurologists with lots of patients who've seen typical, and atypical. That way you can trust what steps may be to come.
Take the good folks up on the forum who offer their advice about the brain biopsy, they are here to offer anything they have that may help.
I wish you well in this journey, and that they are able to stop the culprit causing this! Thank you for trusting us to thoughts. You mentioned we can ask anything, so I hope you don't mind I ask when were you dx'd with MS? And, has this been persistent since the beginning? Or, later on in your dx.
Thanks for joining us,
A person very knowledgeable about MS pointed me to this research piece which has the 2% statistic in their results- very interesting to read.
Tammy—thanks so much, that would be awesome if you could ask your neurologist! The more input the better on this one. Thank you.
Lulu—thanks for your thoughts. This is exactly the kind of feedback I wanted. I was wondering if this is as unusual as it seems, based on my research. My neurologist is the one who pointed out that lesions shouldn’t enhance so long, but that was at month four, when he was confident that the plasmapheresis would fix the problem. He has become a little reserved in saying what he thinks is going on…I’m not sure if that’s because he doesn’t know, or if its because he doesn’t want to be an alarmist until it plays out a little further. We’ll see. In my next meeting I am going to tell him to talk straight with me. I definitely trust his opinion, as he is Chief of the Multiple Sclerosis division at Barrow Neurology (how lucky am I?!) But even with that qualification, I think my case is a little baffling to him. Thank you for your thoughts, and for researching and asking around about this—that is exactly what I need!
Rita—Yes, the lesion has changed. It was originally about 28mm and it has grown to 38mm. It has grown into somewhat of a flair shape, but it hasn’t necessarily changed shape, its just spread out. I will try to post a picture on my profile, if I can. I only have the one lesion. The lesion location is “left posterior frontal white matter, extending to involve the left aspect of the corpus collosum.” This location includes the motor cortex, which is the primary reason my doctors have been so cautious about ordering a biopsy. If I do get a biopsy, it will be done by the Chief of the Neurosurgical residents program at Barrow’s. He trains all the other surgeons…so he is someone I trust if it comes to that.
Mike—I would LOVE to hear any and every insight you have on biopsies. I have an appointment with the neurosurgeon for a consult on Tuesday. Any suggestions on what questions I should ask?
Shell—thanks for chiming in, it helps to know that you haven’t heard or read about persistent lesion enhancement. It does seem to be uncommon. As for the diagnosis, I was “diagnosed” (with the disclaimer that doctors knew they might be wrong) back in November 2011. Yes, the lesion enhancement has been constant since then. My symptoms have kind of gone up and down in severity, but I have been sick the whole time. It seems that I may have had a relapse in March, because I was starting to improve so much in February, and then I got horribly sick in March (hospitalized for a week) and still haven’t gotten past it. Not sure.
Thanks to all of you for caring so much and for sharing your input. It really helps me, and it really means a lot.
All my best,
Lulu, that is the exact study I read! It is interesting, isn't it? Academically, this all fascinates me. I just wish I didn't have to be the current case study! haha
I saw the MRI pics you posted - Kind of an unusual shape for an MS lesion. They usually tend to be more circumscribed, but we all know that not everything fits into the "typical" presentation... :-)
It is interesting that despite several courses of steroids, as well as plasmaphoresis, it not only continued to enhance but increased in size. Have they done a PET scan? You mentioned in your profile that the O-bands changed from one LP to another - did they increase or decrease? Have they done any MRIs of your spine?
What kind of symptoms have you been having ... did they change at all after the courses of steroids or the plasmaphoresis? What led them to the diagnosis of MS? Sorry for all the questions ... just trying to get a feel for the whole picture...
Please let us know what you learn when you see the neurosurgeon. It's wonderful that you are in the care of so many highly trained doctors - you are definitely in good hands!
I am sorry you are going thorugh this and faciing these decissions.
I not know anything about enhancing lesions for what length of tiime.
I had a biopsy done.
I t took me ovver a month todeciide. I will send you a P.M. iif you have some questions.
I know my dr. doesn't just order a biopsy up for the heck of it.
I hope you are ok today, amo
Sorry I didn't get back to this till today. Hmmmm, questions to ask the neurosergeon..........let's see....
- What exactly is he/she looking for, or what does he suspect the enhanced area is?
- Where on your head will he need to (somebody help me here) open up to get to the target area? (this area will be shaved)
- does he intend to use a hallo (very heavy stainless steel), and if so, will he give you a shot of morphine, or equivilant, as well as local freezing before installing it? The hallo along with a CT image will help accuratly guide the Doctor to the target spot.
- Have the nerosurgeon and neurologist discussed the need for a biopsy and come to an agreement that it's the right thing to do?
- how long after the proceedure will you know the results, and who will contact you?
I' haven't had much chance to think of useful questions you should be asking, but I hope these few suggestions are of use to you.
Don't hesitate to ask if you think of any specific questions for me, either in the forum or via pm.
I hope your appointment goes well. Oh, and write down all the details discussed, it's easy to forget or miss important points.
Rita--thanks for the reply. Yes my oligoclonal band count changed...it was "greater than five well defined bands" on my LP six months ago. And the one from a month ago only said two. Does that happen with MS?
Yes, i've had full c and t spine MRIs twice. No lesions. No PET scans.
Symptoms do wax and wane, but no noticeable improvement after steroids or plasmapheresis. In fact, steroids make me horribly sick, even sent me to the icu. I get extreme muscle weakness, profound fatigue, muscle pains, neuropathy in my feet and legs, dizziness, loss of balance, extreme cognitive impairment at times, fogginess in my head, pressure on the left side of my head (I take Diamox, which fixes this pretty well), joint pain....all of this started back in September 2011. I've had ups and downs in severity, but its been pretty steady for these past seven months. Do those even sound like MS symptoms?
Amo--thanks for the pm :)
Mike, we must have posted at the same time! Thank you so much! I am sure I'll have more questions as I go, but this is a great help. I will let you know how it goes tomorrow. Thanks again for being will to share your experience and insight!
Just wanted to send some good wishes your way, and tell you that you look like a model in your hospital photos-- they could use you in brochures! :)
Good Luck, and let us know what's what.
thinking of you today, Mandy. I hope you get answers to your questions and feel comfortable with your care. Give us an update if you feel like sharing.
good luck, L
I found this paper that might be interesting for you. There are MRI pictures you can compare to your own. Has your neuro mentioned a Tumefactive Demyelinating Lesion? That is the name they give lesions greater than 2cm. Apparently they can be caused by MS, but sometimes they are not. This paper says a biopsy needs to be done to see if the lesion has characteristics of MS or not. I hope this is helpful!
Thanks everyone for your well wishes and support today!
The neurosurgeon says its definitely a suspicious lesion. He says every time he looks at it (he's been in the loop since January), he's tempted to biopsy it. But he said we still need to keep a biopsy as a last resort because its in a very bad spot, deep in my brain, in an area that I use every day. Getting a piece of it could cause permanent damage. He is going to talk to my neurologist and see what they both think, and at what point we should decide this is suspicious enough to risk the biopsy. We may actually be to that point, since we've been waiting six months for this to improve. The neurosurgeon is also going to look at my MRI from today. Sadly, the MRI happened after our meeting, so we couldn't discuss it.
He did explain the biopsy process and protocol. He showed me the size of sample he would take...about 1/4 the size of what he normally takes, he said. It will come right out of my "motor strip" so they would have to work with a smaller sample. The surgeon said one of the biggest risks of any biopsy is not getting any answers. But he said in my case he actually feels pretty confident we'd get an answer. Not sure why he feels that way, but I hope he's right!
We haven't made any decisions yet. He and my neurologist are going to look at my MRI from today and collaborate on next steps. I did look at my MRI films when I got home though. I'm no radiologist, but its pretty clear that I'm officially entering month seven of a large, enhancing lesion. Unbelievable.
Thanks to all of you for your input, suggestions, and support. It really does help! I'll post an update when I hear results from my neurologist.
Take care and thanks!
Mandy, I don't remember reading it in your comments but I sure hope you have lots of support helping you with these consultations and the choices you are being asked to make. I'll continue to hold good thoughts for you and wait for your next update.