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    Old 04-04-2019, 12:27 PM   #1
    Blathanna77
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    Brain Biopsy

    Hi,

    Following my numb thumb post, I think it may be of benefit to me to have a biopsy. This is something I feel very strongly about. I feel Biopsy could rule out a lot of things for me and even shed light as to what is the cause of my illness.

    To put it short, I was told by the neurosurgeon that he understood my need for answers, that he would be more worried about having someone to give the results to than he would be about the procedure itself. He told me it may be inconclusive but also that it might shed light. I went with hope that at least he was willing to do the Biopsy, that its not like the old days as he said, and that I would be fine. He did say biopsy carries a risk, and I suppose they have to outline these risks to their patients.

    The other thing is my neurologist did tell me way back when I asked about biopsy that he would have no problem telling a neurosurgeon to do biopsy for me, and also understood that it may shed light as to why I am ill .

    It then all got messy. What I thought was going to go ahead, didn't pan out, but instead it became not only my neurologist totally against Biopsy, but the neurosurgeon as well. What happened is they discussed it and it was the neurosurgeon who wrote to me to tell me, he would not be doing the Biopsy having told me twice at two separate appointment's that there was no problem at his end to do it and even spent as he said himself over 40 minutes looking at one particular MRI at one of our appointments, I asked about one particular bright spot if that would be an area he would Biopsy, and he said, not that area, as its responsible for movement. Just to clarify there is a big enough bright spot in the location my neurosurgeon told me is in an area responsible for movement. He said it would be the frontal area of my brain that he would Biopsy.

    The other thing is, infective was listed on my MRI report. This MRI was done at the request of my neurosurgeon. It never was listed in previous MRI reports going back as far 2014, and I had many many MRIs during that time period, as many as two or three a year. So I do wonder why it was listed round the same time I was pressing for Biopsy, and I think anyone would wonder why then and never before.

    I really feel Biopsy is worth doing because I want to know if it shows something or not. I don't want to be wondering why infective is in a report and whether it is a possibility why I am ill. Infective means, likely to infect, that's what the dictionary says, but that's what I'm wondering about. Did it once infect, and then stabilized and did not progress, or is it possible it can reactivate, is it a process that's happening.

    Do I have these symptoms as a result of something going wrong, that stabilized. I have reports where stable and no progression is listed. I do not know in what context, stable and no progression is referring to.

    I am ill, I've had run ins with neurologist's and radiologist's all because there have been some oddities that remain oddities and I am very much in need of getting to part of the puzzle that's missing. I feel Biopsy could possibly figure out why I am ill and I see nothing wrong with asking for it considering there is a chance it could provide that missing piece of the puzzle. There is also a chance it may not, but I think my symptoms are down to something on my brain that is a process and not a normal process, whatever that is.

    My symptoms didn't just appear the way they did for nothing. There are no answers, but I think there is an answer and Biopsy could very well be the closure I'm looking for.

    I am going around as if drunk every day since I got those morning headaches back in 2014, I'm not convinced at all, that those headaches were in any way normal because they were diagnosed as migraine and no MRI was done until eight months later, when from the onset of those headaches and then all the rest, went wrong I ended up in hospital being tested for a particular neurological condition. By all accounts it is not the cause of my symptoms, but something is and I have this strong gut feeling that something went wrong when I was getting morning headaches and look where I've ended up, a drunken drowsy person I never was, before the headaches so for me it makes perfect sense, the headaches were a sign of something going wrong whatever that is.

    Another thing, my past GP told me, seeing two on pen and finger test is a red flag, and that she was baffled as to why that was happening to me the same time as the headaches and still it remains, that I see two.

    I just wanted to give you guy's an idea of what I'm trying to achieve, biopsy is what I want and I am going to continue to fight for it because of being told it can be done, infective and my symptoms all is just in need of clarification.

    What do you guy's think? I know its invasive, but the part that I'm trying to figure out is why my head feels sickly all the time.

    I don't see I'm asking for too much just another avenue to explore. So many things just do not add up for me and it isn't my fault, things are said and then taken away, or that reports are saying stable and no progression, infective, that word is in my report for a reason I believe.

    Do you guy's see this how I see it, biopsy could tell me more. I'm not blaming anyone, I just want to know why I'm ill and if something can be done to help the drunken drowsy me because no one is going to like being ill every day and its becoming unfair that biopsy was about to happen and then wiped out from under me, then psychiatrists and meds that nearly drove me crazy.

    Its really important to me that biopsy should happen especially when my illness is not getting better. I'm concerned. What do u guys think?

     
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    Old 04-05-2019, 03:43 AM   #2
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    Re: Brain Biopsy

    The risks of a biopsy are very high...if two doctors have advised against it, I would listen to the doctors.
    In the meantime, go see another neurologist and ask for a second opinion on what is wrong- not asking for a biopsy.. normally people do not push to have their heads biospied and you asking for this is a red flag in itself. Talk to the doctor about finding out what is wrong, not asking for a very invasive test which holds all sorts of risk.
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    Old 04-05-2019, 11:14 AM   #3
    Blathanna77
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    Re: Brain Biopsy

    MSNik,

    Thank you for your reply. I don't think it is a red flag, I asking to try and get more information about why I am ill. The neurosurgeon had no problem to do biopsy and told me I would be fine. He understood why I was asking for it, as too did my neurologist, whom was the one who told me he would not have a problem asking my neurosurgeon to do biopsy. I obviously believed them both.

    Things then changed, they went back on their word and decided between them that even though there is a chance Biopsy could possibly figure out why I am ill, it was not important enough to do the Biopsy for them, but it really is for me and I do think if someone is ill enough they will try anything even biopsy to get some information especially when having seen several neurologists, they do not know why I am ill. What if it is something they have not come across, that's also a possibility I think, when they do not know why I am drowsy and drunkenness woozy in my head, so it can be an area explored Biopsy I think because there is a chance it may shed light.

    It may also not shed light but that's why there's only one way to find out, have the procedure done. There is also infective listed on my last MRI report, a new possibility that was never in numerous previous MRI reports, so for me personally I wonder why it popped up same time I was asking for biopsy. The neurosurgeon did his own MRI, and that word was in that report. Am I to just think this is nothing just a word listed or is it possible this is an important piece of information regarding my symptoms, and that if biopsy had gone ahead, is this the result that may come back.

    I think its very important for me MSNik, to try and get biopsy, seeing that I am five years ill and the neurologists do not know why. It isn't normal to see two or feel drunk all the time, there is no point in just leaving things and not try to do everything I can to get closure for me.

    I do not have a particular neurological condition that was thought it could be but it isn't, so that's ruled out. Several neurologists ruled that out. What if it is something that can infect or did infect in the past, which left me the way I now am, or if it reactivates, what then. A biopsy would tell me the type of infective process. The name of it.

    Infective is not a common listing on a brain MRI report. I've had oceans of MRIs. I know something is just not making sense or adding up, another reason why biopsy could possibly clear a lot of things up for me.

    Life itself is a risk, none of us knows from one day to the next but if something is wrong with you and they don't know what it is, that's when they need to look deeper. In my case, whatever stabilized and isn't progressing, infective, I want to know the name that caused my illness and its prognosis.

    A neurologist one time said my prognosis was good. He didn't elaborate further than that. What does it mean when a neurologist is looking at your MRIs and tells you, your prognosis is good. Is he looking at nothing or something. I felt it was something. What am I to make of my symptoms, and their cause, I believe a biopsy could be the right thing to do to help me understand what this is. What if I was infected with something, don't you think I have a right to know what type of infective process happened and left me drunk every day probably for the rest of my like and should it resurface, I have a right to know the name of that. Why else is it in my report. There is a reason it was added same time as Biopsy was being pushed for, so I'm not convinced it was put there unless that was going to be the result of biopsy. The way I'm feeling it is something that could be the reason. Infective. Anyone would be concerned about this on a brain MRI report, especially when they are feeling very ill.

     
    Old 04-05-2019, 02:52 PM   #4
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    Re: Brain Biopsy

    Dear Blathanna,

    Really I don't see anyone denying that something is wrong. If there were a viable reason for a brain biopsy you can believe that one of the doctors would have already ordered it. You can trust that to be true. Refusing the biopsy is not just to torture you or deny you proper care. Fear is the number one least reason to get a brain biopsy.

    Are you aware that there is a huge list of nutritional deficiencies and or benign non-dangerous possibilities that can cause your symptoms, and any one of your symptoms may not even be related to any of the other symptoms?

    Without more information than is known, what part of the brain should be biopsied? What if they biopsy one part but a problem area is on another side of the brain? Then nothing would be known, right?

    Are you really afraid your issue is from a tumor? Fear by itself just does not create reality. "What if" encompasses every possibility that ever existed. 'What if' exists only in the thought life. It is not a brain issue. It's an emotional issue. I mean this in the kindest way possible ~ have you gotten any mental health help for your emotional state?

    Doctors have an obligation to not just try anything no matter how dangerous it is. They have an oath to do no harm. The oath is not to humor the patient no matter the danger.
    I'm sorry hon, they just have no obligation to do so.

    If you want you can see if you can find doctors that know nothing of your past doctors and see if you can get a fresh perspective.
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    Old 04-05-2019, 06:07 PM   #5
    Blathanna77
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    Re: Brain Biopsy

    yayagirl,

    Thank you for your reply. Infective is written on my brain MRI report. It only appeared when I pushed for Biopsy. Its not a regular word used in brain MRI reports unless something is seen to be likely to cause infection.

    I think it is important information why I am ill. Why would a radiologist write infective on my report to the neurosurgeon. It was never in any of my previous MRI reports.

     
    Old 04-05-2019, 09:20 PM   #6
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    Re: Brain Biopsy

    Dear Blathanna,

    From what I have read, brain infection is discovered from spinal fluid, not from a brain biopsy.
    A word without knowing the reason for using the word is still just a word with no reason behind it. Certainly none of us on the internet can guess why the radiologist even mentioned the word. Ask that radiologist. It could have been written merely because the scan was linked to your worry over possible infection.

    Drowsiness and drunken wooziness in the head are very vague symptoms that can be from a long list of probabilities such as from eating or drinking too many carbs, sugar overload, 'silent' migraines, sleeping too much, sleeping too little, not enough exercise, and a long list of other things. Are all of those issues perfect in your life? If not there is no reason to do a biopsy.

    There are some serious common symptoms from an infection in the brain. Look up those symptoms, then tell your doctor if you have any of them. Even symptoms would not mean you have a brain infection, though. Symptoms can also be for other reasons. So far none of the doctors that have been involved see any reason for a biopsy. Stressing out over 'possible' unknowns does nothing good for your health.

    If you want to pursue a brain biopsy you can do that by finding a doctor from a completely different medical group then make the request. Though insurance may not pay for it.

    Hugs,
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    Old 04-06-2019, 09:47 AM   #7
    Blathanna77
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    Re: Brain Biopsy

    yayagirl,

    Thank you for your reply. A radiologist listed infective on my report along with inflammation, small vessel disease. What I do not understand is the word infective, being put in this particular MRI report, this is the MRI my neurosurgeon asked for. Infective was never in any previous MRI reports so same time as I was trying to get a biopsy this infective word comes into the picture so what am I supposed to think, only it perhaps would have been the outcome of biopsy should it have gone ahead.

    I don't know why else it would be on my report. The radiologist wouldn't list this unless something is likely to infect, I mean would infective look different to inflammation or small vessel disease?

    Sorry yayagirl, but I just don't find it a coincidence that infective appears on my MRI report same time as Biopsy is being thought of to do by my neurosurgeon and neurologist. I could be ill because of this. This could be the answer.

    Likely to infect, is not good is it, especially on my brain, it either infected and stabilized, and this is why my head feels the way it does, or its a slow process, dormant but can reactivate, its the type of infective that biopsy could provide what type and where its at, or likely to do if it infects.

    I find it just all so unusual. Things are not making sense. I'm ill and I can't be blamed for trying to get a biopsy when no one knows why I am ill, and if it is an infective process, would Biopsy identify its name and even if they cannot do anything for me, at least I would know why I am ill.

    Its not a common listing yayagirl on a brain MRI report. Why is it on my report, biopsy could tell us why.

    I can't just accept that" just because something is listed doesn't necessarily mean a person has a particular illness." That's the explanation my neurologist gave me when I asked what it meant. He told me last Monday when I asked about it that I don't have an infection. Infective means likely to infect, so is it yet to infect me. I'm going to have to try yayagirl to get biopsy on my own again. They gave me hope they were going to do it, but took it away again.

    This is a really horrible thing whatever I have and I want to know why its not going away and where it may be heading. The worst part is the not knowing why I am ill. I think biopsy was a fair request before infective was listed. It is now an even more fair request because of infective.

    I will try my best to get biopsy. It could really give me closure

     
    Old 04-06-2019, 11:01 AM   #8
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    Re: Brain Biopsy

    Dear Blathanna,

    All you can do is make an appointment with the neurosurgeon and ask why the word is there.

    The word may have been listed merely to state what the test was looking for.
    However the test results showed no infection exists.
    That fact is what you are denying.

    If words by themselves make something real, I will write rich and see if that word changes what is in my bank account. Hmmmm, I typed the word, and checked my bank account but my bank balance didn't change.

    No matter how many times you write that the radiologist wrote infective on your report, you still are just assuming that word all by itself means you have an infection.

    The words infective and infection are two different words and the word could even be a typo for all you know.

    I type many things and believe me words can be found in my typing that that I did not mean to include. That your doctor read the report and ignored that word should inform you that your perception of why the word is there is not right.

    If you don't agree all you can do is change doctors and take your test results elsewhere.
    We can find dishonest people who will tell us anything we want to hear and do whatever test we want, esp if we will pay them. If you have the money find someone to do as you ask.

    It may be that you would recover if you exercise or change what you eat.
    There are loads of possibilities beyond a brain biopsy.
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    Old 04-06-2019, 12:55 PM   #9
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    Re: Brain Biopsy

    Quote:
    Originally Posted by yayagirl View Post
    Dear Blathanna,

    The word may have been listed merely to state what the test was looking for.
    However the test results showed no infection exists.

    That fact is what you are denying.

    If words by themselves make something real, I will write rich and see if that word changes what is in my bank account. Hmmmm, I typed the word, and checked my bank account but my bank balance didn't change.

    No matter how many times you write that the radiologist wrote infective on your report, you still are just assuming that word all by itself means you have an infection, though doctors told you the report shows that you have no infection.

    So the word by itself cannot mean that you do.
    The words infective and infection are two different words and the word could even be a typo for all you know.

    I type many things and believe me words can be found in my typing that that I did not mean to include. That your doctor read the report and ignored that word should inform you that your perception of why the word is there is not right.

    If you don't agree all you can do is change doctors and take your test results elsewhere.
    We can find dishonest people who will tell us anything we want to hear and do whatever test we want, esp if we will pay them. If you have the money find someone to do as you ask.
    yayagirl,

    Your first paragraph is confusing, sorry maybe I am not reading correctly. My Neurosurgeon ordered an MRI. The report came back with infective on it. There was no test to check infective. I didn't have biopsy. What test are you referring to?

    I had a lumber puncture in 2014, infective wasn't listed until last year. Maybe I am confusing you. Would biopsy not be the test to check if there is an infective process contained on my brain that would not show up on any other test. It could mean I have something that is likely to infect.

    My neurologist told me I don't have an infection, and said radiologist's list things but it doesn't necessarily mean a person has a particular illness. Don't think it was a typo error, especially in these type of report's. I could find that out at the hospital where my MRI was reported on.

    I am as much in the dark as everyone else is as to why I am ill. This word infective could be the reason why I am ill. It does make sense to me because of the ongoing drowsiness and fatigue. I may have had an infection in 2014, that stabilized but can reactivate. That's probably what happened. I had real bad headaches back then morning headaches with numbness and the longer they went on without being scanned, the worse I got. Then reports said stable and no progression.

    Its not a common listing on a brain MRI report yayagirl, I doubt its a typo error. What is the test for something that is likely to infect, I would think biopsy, but don't know obviously if other tests would confirm there is a contained infection, that could reactivate. It is starting to make sense to me, that infective is a word that could very well be the answer for my illness.

    For sure something happened to me when I was getting those morning headaches with numbness, I went downhill after the start of the headaches. The drowsiness and drunkenness has been with me since and its like having a constant flu in my head with extreme fatigue. I shoukd not be ill like this if it were just a common flu, it doesn't stay for five years and there is no point in thinking this isn't a good enough reason to ask for biopsy, even before infective popped up. I need to know if infective is the cause of my illness and if that's the answer, it is in my report. They may have been preparing me for that should Biopsy have went ahead. There is a couple of ways to look at this, opinions etc..., but for me personally because I am ill, I think infective would not be in my report without there being a very high chance that would have been the result of biopsy.

    I'm not sure how I am going to about biopsy until I talk to my GP. I will try my best to get a biopsy, because I am not happy being ill all the time, and with a word like that in my report. I don't see why it only appeared when I was pursuing Biopsy, its just another thing I should not have to deal with on top of being ill, my neurologist and neurosurgeon should not give me hope that the biopsy could be done, and then take it away. That's not fair on someone who is ill. What are the tests yayagirl for infective in a brain MRI report, do you know?

    Its a very serious word in a report if it turns out that is why I am ill, so how do I find out if that's why I am ill.

     
    Old 04-06-2019, 01:12 PM   #10
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    Re: Brain Biopsy

    Dear Blathanna,

    The point is you are asking the wrong people.
    Ask the doctor that wrote the report.

    The info you posted says nothing more than you already know, which is nothing new.

    The report did not state what the word means.

    All you can do is make an appointment and ask that doctor to explain the test message.
    Or take the test result to a new doctor and ask what it means and if he will order a brain biopsy.
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    Old 04-06-2019, 05:11 PM   #11
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    Re: Brain Biopsy

    yayagirl,

    I don't think the radiologist who wrote my report will talk to me because its usually the neurologist who talks about the report. As I've said he said I don't have an infection. Infective doesn't mean infection, but likely to infect, so don't know if I should just go and see the neurosurgeon who did the MRI or see someone else.

    Its not something I feel my neurologist and neurosurgeon want to clarify to me or go ahead with biopsy. I really do not understand why considering it may be why I am ill. Its back and forth and infective is just a word no one wants to say anything more other than radiologist's list all kinds of things and that's all I've got clarification wise from both the neurosurgeon and neurologist.

    The thing is though, if I were to have biopsy if it had gone ahead, I wonder would infective have been confirmed in Biopsy result. I find it all a bit strange because if I do have some type of infective process that happened and can again happen, is it not worth doing the biopsy to give me closure. Why would they change their minds, and leave infective hanging for me with no further information about what it means.

    Am I to just be happy that I know infective can possibly infect and get on with with it, I can't just accept that either cause that's not fair if they know without doing biopsy, what it is that's infected me, and has stabilized. It all just doesn't make sense yayagirl.

    Infective doesn't make sense unless that is what happened and can reactivate. Do they know more than what I'm being told, and did they discuss to have that word included in my report, seen as I was pursuing Biopsy and that way if ever I get a biopsy and infective is the result of biopsy, they will say it was in your report. I'm not sure if this is kind of telling me, what the biopsy result would likely be.

    Maybe my neurosurgeon and neurologist were trying to let me kniw this way, in my report, that this is why you are ill and all is stable now, so Biopsy won't tell anything further. The name of what is likely to infect, is what and why can't I be told that.

    I don't know what to make of it yayagirl, its better for me if I try to get biopsy. I think my neurologist will not allow it even with infective in my report. Its a nightmare trying to get any sense made out of that word by my neurologist other than I don't have an infection, and I will talk to the neurosurgeon, giving me hope it was to arrange biopsy, and just because something is listed doesn't necessarily mean a person has a particular illness. That's it, and he knows I am very ill, he said that as well, so why is he making biopsy difficult for me, when it probably would tell me why I am ill.

    Its not my fault if they say one thing and do another. I want to believe them but its all just become a mess, where biopsy is off the table. I don't think its fair when I am ill to not explain infective and just leave it like that, in a report and that's the end of it. I must go away and be left wondering. I think that's not fair.

     
    Old 04-06-2019, 08:12 PM   #12
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    Re: Brain Biopsy

    Dear Blathanna,

    If you want a different result you have to make an appointment and tell the doctor you want answers then ask your questions.

    If you need to, make an appointment with the neurologist.
    Or find out who to ask and then make an appointment with that person.
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    Old 04-06-2019, 09:56 PM   #13
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    Re: Brain Biopsy

    yayagirl,

    That's what I tried to do last Monday at my appointment with my neurologist. He just said, you have no infection, and biopsy is risky.

    I am going to talk to my GP next week. I will ask her to ask my neurologist what infective means or if she could refer me to someone who can tell me what infective means.

    I doubt I will get anything clarified other than I don't have an infection. This is the answer my neurologist gave me when I asked about it.

    I might ask my GP if she could contact the radiologist who reported on my MRI to see if he would tell us what he was referring to when he wrote the word infective.

    Its all just very difficult and draining, trying to get anything clarified, and very little explanation is given about things to me. Its terrible because I only want to know why I am ill but no neurologist knows why. That's why I asked for biopsy, and after that infective shows up in my report. It is a neurosurgeon who asked for the MRI, and that report had infective written on it. It was never in MRI reports requested by neurologist's.

    The neurosurgeon and my neurologist, know each other well. They work at the same hospital. My neurologist told me last Monday, only time he might order a brain biopsy is when someone is dying in bed. Before though when I first asked for biopsy, he said he had no problem sending me to the neurosurgeon for biopsy, and thought it could provide information. He found it a catch 22 as well, and felt I was putting pressure on him to allow it.

    I don't know what to make of it all. Its just very upsetting and frustrating. Hope of biopsy going ahead, and then all hope gone because they didn't follow through.

    I'm just left wondering why I am ill. I feel I was getting close to answer when I was pursuing biopsy, but it didn't pan out. Yet infective is just a word with meaning behind it or no meaning behind it, I don't know if I will get any clarification other than what I've gotten so far.

    I will let you know. I'm going to try with my GP and maybe the radiologist who wrote my report. I don't think my neurologist wants anymore to do with me and my request for biopsy, and the neurosurgeon is sticking with my neurologist. My neurologist didn't even examine me at my last two appointments, and when I asked last week if I am to come back, he kind of said no in a way, and just said tell the Secretary to send you out an appointment for six months time, just to keep you on the system.

    I don't know what to make of any of it. I'm ill enough for five years and I feel biopsy is a fair request considering I'm not getting better.

    Thanks for your reply.

     
    Old 04-06-2019, 10:48 PM   #14
    yayagirl
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    Re: Brain Biopsy

    Dear Blathanna,

    I can see you feel very distressed and that you believe if you just could get a brain biopsy that will give you some answers.

    But if those doctors disagree with you, all you can do is see if you can get an appointment with some other doctor. You seem unwilling to go to other doctors.

    If your doctors believe a biopsy is not going to help, we cannot make them change their minds.

    Just because we think we need something doesn't mean it has to happen.
    We cannot make others solve our problems.

    I know how that feels. From a long ago accident I live with physical deformities that affect how I walk and how I feel all of the time. Nothing in this world can change it or make it better. I could ask doctors all day long and they would have to say no, there is no solution for this.

    I would not ask my doctors to try unsafe things or things they disagree with. We cannot make other people do everything we want.

    I live with pain and physical problems that most others do not have. And, many other people have worse problems to live with.

    Hon you can choose to stop fighting against doctors and accept your life as it is and still live a good life.

    Or, make yourself sick with worrying about something you cannot change.
    I can't help you with that.

    The choice is yours.
    __________________
    ~ YaYa ~

     
    Old 04-09-2019, 04:45 PM   #15
    Blathanna77
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    Re: Brain Biopsy

    yayagirl,

    Thank you for your reply. I am writing to my neurosurgeon to ask him can he tell me the meaning of the word infective and if it is has significance or not to my illness.

    Maybe the radiologist who reported on my scan can clarify what it means as well. Its just that I do not know why it is in my report because it is not a common listing on brain MRI reports and I would like it to be explained to me.

    I think maybe that's the best thing to do because it might be why I am ill or not. Its a word that I don't know what it means in my report other than I do not have an infection. Infection and infective are two different things, so if my neurosurgeon and the radiologist can explain why it is in my report, that should help me understand whatever it means.

    I don't know what to make of it. It is either there for something or nothing, but surely they can tell me more about it.

    I will let you know if they explain it or not.

     
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