Aa
surgery
Hello!
today I got my MRT result and it said I have Chiari 1 Malformation. My tonsilar herniation is 3 mm, supposedly that's rather "good"... and I don't have a syrinx.
anyway, what I wanted to know is... do I definitely have to get surgery? is there any way around? I am really worried and I am so afraid of surgeries in general... what can go wrong? I've heard you can even get paralized through a surgery... I am totally new to all of this... I can't really adapt myself to this new situation... I don't really know what's going to happen, how severe this really is and if this can really affect my life in the longrun.
I am just really afraid, to be honest. so any information would be greatly appreciated, because I can't get a hold on my doc right now, it's friday evening so... yeah, that means at least two more days filled with uncertainty :(
today I got my MRT result and it said I have Chiari 1 Malformation. My tonsilar herniation is 3 mm, supposedly that's rather "good"... and I don't have a syrinx.
anyway, what I wanted to know is... do I definitely have to get surgery? is there any way around? I am really worried and I am so afraid of surgeries in general... what can go wrong? I've heard you can even get paralized through a surgery... I am totally new to all of this... I can't really adapt myself to this new situation... I don't really know what's going to happen, how severe this really is and if this can really affect my life in the longrun.
I am just really afraid, to be honest. so any information would be greatly appreciated, because I can't get a hold on my doc right now, it's friday evening so... yeah, that means at least two more days filled with uncertainty :(
COMMUNITY LEADER
I do not want to mislead u, and I think u misunderstood...but u said u did not have a syrinx...and unless u had a full spinal MRI, there is no way to know that for sure, many drs only look at the cervical spine for a syrinx....
Plus, a syrinx is not the root of symptoms if u have chiari...I did not have a syrinx, but had major CSF blockage and required surgery.....
If u had a syrinx and if left untreated, it could get large enuff to cause perm nerve damage and possibly paralysis...All major surgeries there r risks...each person the risks will be diff as we have no idea how we/our bodies will respond to the surgery.But, some have lost their lives after this surgery, one from heart failure, and this was a young woman with out previous heart issues...another was a 20 yr old girl....and one young man...sometimes it is a lack of knowledge and experience with chiari on the side of the dr and the staff of the hospital...this is y we stress finding a true chiari specialist, this is a NS that deals with only chiari and chiari related conditions.
AS far as what is important....get what u can...blood work and all ur MRI and xrays u have had done to date...this allows the drs to compare.... and see if u might have something else going on...which it does sound like u do.
Once u find a dr that specializes in chiari u will have a better idea as to what is going on , until u do u may get mis information.
"selma"
Plus, a syrinx is not the root of symptoms if u have chiari...I did not have a syrinx, but had major CSF blockage and required surgery.....
If u had a syrinx and if left untreated, it could get large enuff to cause perm nerve damage and possibly paralysis...All major surgeries there r risks...each person the risks will be diff as we have no idea how we/our bodies will respond to the surgery.But, some have lost their lives after this surgery, one from heart failure, and this was a young woman with out previous heart issues...another was a 20 yr old girl....and one young man...sometimes it is a lack of knowledge and experience with chiari on the side of the dr and the staff of the hospital...this is y we stress finding a true chiari specialist, this is a NS that deals with only chiari and chiari related conditions.
AS far as what is important....get what u can...blood work and all ur MRI and xrays u have had done to date...this allows the drs to compare.... and see if u might have something else going on...which it does sound like u do.
Once u find a dr that specializes in chiari u will have a better idea as to what is going on , until u do u may get mis information.
"selma"
Hello and Welcome,
As Selma mentioned the herniation size is neither good nor bad b/c that is not all that they should look at. Many people have small herniations but have a lot of overcrowding in their skull so their symptoms can actually be worse than someone who has a larger herniation. So when you get that appt. make sure you ask if there is overcrowding. Did they mention anything about that on the MRI report? In my case, my NS was much more concerned with the blockage from my brain squished up against my skull than the herniation size. The problem is, a lot of NS that may not be really knowledgeable in Chiari and may just make the decision to dismiss it b/c of the size. So in your case, you may need to really dig for a good NS to see.
I don't know if there is a lot of significant evidence on whether depression or anxiety can be trigger by Chiari but I do know that most of us have dealt with it in one form or another. To me, having pressure built up in the brain could put pressure on all parts of the brain, so who knows what could happen? I know with me that my anxiety and depression level has gone down since surgery and the only time I really feel it is when I have a bad day and that gets me down. Or when I overwhelm myself. So I think it could be a possibility that just feeling the way you do from the effects of Chiari could be triggering it.
GET COPIES OF ALL YOUR REPORTS!! I can't stress this enough...it saved me many times when I was getting nowhere. You will be amazed at what the Drs don't show you!!
You mention that your symptoms cycle and I wanted to say that mine did for a long time too, long enough to convince myself that it was "all in my head" or triggered by stress. But the symptoms always came back, usually more powerful than before until finally they came to stay and I kept getting worse. So keep an eye on your symptoms, keeping a daily journal is a really good idea b/c you may even come up with some triggers (by looking at your daily activities). Never, ever brush off your symptoms...thinking that they aren't significant...I wish I had known that before.
Next thing I noticed is that you have been dx'd with Hashimotos..I have it to and I believe so does Selma (along with a lot of others with Chiari). My symptoms were primarily blamed on that when they first cropped up but it was a big mistake made by my Drs. After surgery, when I finally got to see an Endo she said that I hadn't been hypo enough for long enough to do that kind of damage. To have nerve damage from that you would have to be close to a coma like stage. So don't just accept that some symptoms could be from that, ask to see an ENDO to have that confirmed.
I too, hope that you don't need surgery...no one wants to go through that unless they have to. In my case, by the time it was all worked out, I was beyond it being a choice. It was the best decision I could have made and have got some of my life back because or it. So, definitely look in to everything but push hard to see a good NS so that you have a very clear view of what can be causing what.
Good luck
Carolyn
As Selma mentioned the herniation size is neither good nor bad b/c that is not all that they should look at. Many people have small herniations but have a lot of overcrowding in their skull so their symptoms can actually be worse than someone who has a larger herniation. So when you get that appt. make sure you ask if there is overcrowding. Did they mention anything about that on the MRI report? In my case, my NS was much more concerned with the blockage from my brain squished up against my skull than the herniation size. The problem is, a lot of NS that may not be really knowledgeable in Chiari and may just make the decision to dismiss it b/c of the size. So in your case, you may need to really dig for a good NS to see.
I don't know if there is a lot of significant evidence on whether depression or anxiety can be trigger by Chiari but I do know that most of us have dealt with it in one form or another. To me, having pressure built up in the brain could put pressure on all parts of the brain, so who knows what could happen? I know with me that my anxiety and depression level has gone down since surgery and the only time I really feel it is when I have a bad day and that gets me down. Or when I overwhelm myself. So I think it could be a possibility that just feeling the way you do from the effects of Chiari could be triggering it.
GET COPIES OF ALL YOUR REPORTS!! I can't stress this enough...it saved me many times when I was getting nowhere. You will be amazed at what the Drs don't show you!!
You mention that your symptoms cycle and I wanted to say that mine did for a long time too, long enough to convince myself that it was "all in my head" or triggered by stress. But the symptoms always came back, usually more powerful than before until finally they came to stay and I kept getting worse. So keep an eye on your symptoms, keeping a daily journal is a really good idea b/c you may even come up with some triggers (by looking at your daily activities). Never, ever brush off your symptoms...thinking that they aren't significant...I wish I had known that before.
Next thing I noticed is that you have been dx'd with Hashimotos..I have it to and I believe so does Selma (along with a lot of others with Chiari). My symptoms were primarily blamed on that when they first cropped up but it was a big mistake made by my Drs. After surgery, when I finally got to see an Endo she said that I hadn't been hypo enough for long enough to do that kind of damage. To have nerve damage from that you would have to be close to a coma like stage. So don't just accept that some symptoms could be from that, ask to see an ENDO to have that confirmed.
I too, hope that you don't need surgery...no one wants to go through that unless they have to. In my case, by the time it was all worked out, I was beyond it being a choice. It was the best decision I could have made and have got some of my life back because or it. So, definitely look in to everything but push hard to see a good NS so that you have a very clear view of what can be causing what.
Good luck
Carolyn
Hi there and thank you for the warm welcome :)
oh yes, sorry, of course I meant MRI, it's MRT in german, so that's where I got mixed up ;)
well, I am relieved that it's good I have no syrinx... I googled a bit about it and read that this is what causes most of the symptoms?
no, I only had a normal MRI, but I'll definitely get a Cine MRI now!
I had the MRI because I have migraines with aura. I constantly have these aura like symptoms, where I have like little explosions in my view... it's hard to describe.
I have other symptoms too that I thought could come from something wrong with my brain. mainly Depersonalization, I am diagnosed with bipolar disorder and wanted to know if there could be other things that could cause my symptoms. do you think this could be related?
other than that I have alot of symptoms that could be from Chiari. like numbness and tingling in hands and arms, especially a weakness in my arms. dizziness, headaches while coughing, backpains, constant tension in my shoulders, chronic tonsillitis (although it has stopped for a long period now)
also, I am diagnosed with Hashimoto. so many of those symptoms could come from that too. it's kind of unnerving to have so many issues and nothing to really safely pin it down to.
I dunno, as long as my depersonalization symptoms are from bipolar (I was on a med for it for a few weeks and both the migraines and aura and the depersonalisation symptoms cleared during that time) then I wouldn't say my symptoms are at all affecting me.
what kind of risks are involved in a surgery? is it true that you can end up paralyzed??
I'll try to get copies of my MRI, what informations exactly would be useful?? I am not really sure what's important and what's not.
I have googled alot today and I am somewhat calm again... I've read at a few pages now that surgery may not be necessary at all... so... may sound weird, but I pray that my serious symptoms come from my bipolar disorder and that I do not need surgery then.
thank you so much for your help and your fast reply!
best wishes & hugs and thank you again for welcoming me like that :) I too am glad I found this site, I've gathered alot of information from here alone and it's great to know I am not totally alone.
oh yes, sorry, of course I meant MRI, it's MRT in german, so that's where I got mixed up ;)
well, I am relieved that it's good I have no syrinx... I googled a bit about it and read that this is what causes most of the symptoms?
no, I only had a normal MRI, but I'll definitely get a Cine MRI now!
I had the MRI because I have migraines with aura. I constantly have these aura like symptoms, where I have like little explosions in my view... it's hard to describe.
I have other symptoms too that I thought could come from something wrong with my brain. mainly Depersonalization, I am diagnosed with bipolar disorder and wanted to know if there could be other things that could cause my symptoms. do you think this could be related?
other than that I have alot of symptoms that could be from Chiari. like numbness and tingling in hands and arms, especially a weakness in my arms. dizziness, headaches while coughing, backpains, constant tension in my shoulders, chronic tonsillitis (although it has stopped for a long period now)
also, I am diagnosed with Hashimoto. so many of those symptoms could come from that too. it's kind of unnerving to have so many issues and nothing to really safely pin it down to.
I dunno, as long as my depersonalization symptoms are from bipolar (I was on a med for it for a few weeks and both the migraines and aura and the depersonalisation symptoms cleared during that time) then I wouldn't say my symptoms are at all affecting me.
what kind of risks are involved in a surgery? is it true that you can end up paralyzed??
I'll try to get copies of my MRI, what informations exactly would be useful?? I am not really sure what's important and what's not.
I have googled alot today and I am somewhat calm again... I've read at a few pages now that surgery may not be necessary at all... so... may sound weird, but I pray that my serious symptoms come from my bipolar disorder and that I do not need surgery then.
thank you so much for your help and your fast reply!
best wishes & hugs and thank you again for welcoming me like that :) I too am glad I found this site, I've gathered alot of information from here alone and it's great to know I am not totally alone.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I imagine u mean ur MRI..and if ur herniation is 3 mm's that is not good nor bad, that fact u do not have a syrinx is good.
Have u had a CINE MRI?...it is a flow study to look for a CSF blockage?.....If u have a blockage it is more likely without treatment u will develop a syrinx.....
May I ask what ur symptoms r?...y u had the MRI?
If ur symptoms r minimal u may be able to avoid surgery and just have a MRI to keep things monitored....again, that iis if u do not have a blockage too.
Surgery for chiari is a major surgery.....so there r risks involved.
The best information we can give u is to get copies of ur MRI's and the reports...this way u can send them out to true chiari specialists to get an idea what ur situation is.
Try and stay calm, getting stressed will only make u feel worse.
Glad to have u here, but not happy for the reasons u had to seek us out.
"selma"
I imagine u mean ur MRI..and if ur herniation is 3 mm's that is not good nor bad, that fact u do not have a syrinx is good.
Have u had a CINE MRI?...it is a flow study to look for a CSF blockage?.....If u have a blockage it is more likely without treatment u will develop a syrinx.....
May I ask what ur symptoms r?...y u had the MRI?
If ur symptoms r minimal u may be able to avoid surgery and just have a MRI to keep things monitored....again, that iis if u do not have a blockage too.
Surgery for chiari is a major surgery.....so there r risks involved.
The best information we can give u is to get copies of ur MRI's and the reports...this way u can send them out to true chiari specialists to get an idea what ur situation is.
Try and stay calm, getting stressed will only make u feel worse.
Glad to have u here, but not happy for the reasons u had to seek us out.
"selma"
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