Aa
Back again - HATE CHIARI!!!
Hi all,
I know it's been awhile since I've been here and I haven't posted in some time. My son is now 22, decompression at age 16 in 2009. Since 6 or 8 months postop, he's had problems off and on. Some symptoms have been scary, but they have checked it out and find nothing major, and try conservative methods. I am fine with this, we have an excellent NS (he did not do the original surgery) now, finally for the last several years. I am just so angry and sick about it right now - I'm usually positive about it - but I HATE this (swear words!!) Chiari!!!!! I am so tired of watching him struggle and fight to live a semi normal life! It's just really getting to me today and I just needed a safe space to rant and vent. As you all know, there are few places where this can be understood fully.
His symptoms come and go, the NS this isn't unusual, people will have ups and downs with it. He listens carefully and always has my son's best interest in mind which I SO appreciate.
My son is scheduled tomorrow, early, for another MRI of Cspine, to check for possible syrinx. He has had increasing pain in his hands, numbness, tingling, some loss of strength. I sat there and watched as we all realized that he has a general loss of sensation....in his hands, arms, chest and back. He could not tell hot or cold, sharp or dull. When he saw NS a couple weeks ago, they started him on Gaba. He's at max dose now and it's only minimally helping with the problems. He sees the NS after they do the MRI. He was working in landscaping, fighting through the pain every day to hold onto the job. He lost his job, later they said he had "limitations" - I know, he can probably file a claim on that. What's most difficult is that he is also about to become a first time dad.
ALL he wants is to be able to work and support his new family. My heart just breaks and I have to say it to someone, I have to stay strong for him, my family. I don't even know whether to hope they find something so it can be fixed, or to to hope there is nothing....but sometimes that is even harder; there are no answers. They've talked about possible scar tissue issues, but the NS doesn't want to do a second surgery unless absolutely necessary, which I understand and agree with. It's a regular MRI and if they don't see anything, I'll ask about a CINE.
The first NS that did the surgery said this would "fix" it. He didn't say there could still be problems, I thought it would be fine. Afterwards, when the problems started, that NS didn't really want to hear it. It was like he did his part and that was it. And, yes, that NS IS a chiari specialist.
I've cried silently, hiding it, and really just needed to let it out. I thank you if you have read through it this far. I'm sorry I only pop up when there's a problem; I always intend to be here more often. I am grateful that there is a place to go when it's just too much to bear anymore. I will be okay, it's just in this moment I needed to reach out. (I do have some support at home too, just needed to rant a bit) Thanks again, love to you all.
I know it's been awhile since I've been here and I haven't posted in some time. My son is now 22, decompression at age 16 in 2009. Since 6 or 8 months postop, he's had problems off and on. Some symptoms have been scary, but they have checked it out and find nothing major, and try conservative methods. I am fine with this, we have an excellent NS (he did not do the original surgery) now, finally for the last several years. I am just so angry and sick about it right now - I'm usually positive about it - but I HATE this (swear words!!) Chiari!!!!! I am so tired of watching him struggle and fight to live a semi normal life! It's just really getting to me today and I just needed a safe space to rant and vent. As you all know, there are few places where this can be understood fully.
His symptoms come and go, the NS this isn't unusual, people will have ups and downs with it. He listens carefully and always has my son's best interest in mind which I SO appreciate.
My son is scheduled tomorrow, early, for another MRI of Cspine, to check for possible syrinx. He has had increasing pain in his hands, numbness, tingling, some loss of strength. I sat there and watched as we all realized that he has a general loss of sensation....in his hands, arms, chest and back. He could not tell hot or cold, sharp or dull. When he saw NS a couple weeks ago, they started him on Gaba. He's at max dose now and it's only minimally helping with the problems. He sees the NS after they do the MRI. He was working in landscaping, fighting through the pain every day to hold onto the job. He lost his job, later they said he had "limitations" - I know, he can probably file a claim on that. What's most difficult is that he is also about to become a first time dad.
ALL he wants is to be able to work and support his new family. My heart just breaks and I have to say it to someone, I have to stay strong for him, my family. I don't even know whether to hope they find something so it can be fixed, or to to hope there is nothing....but sometimes that is even harder; there are no answers. They've talked about possible scar tissue issues, but the NS doesn't want to do a second surgery unless absolutely necessary, which I understand and agree with. It's a regular MRI and if they don't see anything, I'll ask about a CINE.
The first NS that did the surgery said this would "fix" it. He didn't say there could still be problems, I thought it would be fine. Afterwards, when the problems started, that NS didn't really want to hear it. It was like he did his part and that was it. And, yes, that NS IS a chiari specialist.
I've cried silently, hiding it, and really just needed to let it out. I thank you if you have read through it this far. I'm sorry I only pop up when there's a problem; I always intend to be here more often. I am grateful that there is a place to go when it's just too much to bear anymore. I will be okay, it's just in this moment I needed to reach out. (I do have some support at home too, just needed to rant a bit) Thanks again, love to you all.
COMMUNITY LEADER
Keep me posted on a date , I will post a prayer thread for him.....
Hang in there <3
Grandbaby due in early Jan, but I think it will be December. So right around the same time as yours :)
This started to get bad just before he found out, so I don't think it's that. Plus it's been an on and off issue since he had the surgery, it's just this time is particularly bad.
NS did state there is very little flow at the back, near the chiari. I plan to look into this a bit more, but he's already decided he wants to go forward with it. He's just tired of living with this and I understand, but it's scary.
This started to get bad just before he found out, so I don't think it's that. Plus it's been an on and off issue since he had the surgery, it's just this time is particularly bad.
NS did state there is very little flow at the back, near the chiari. I plan to look into this a bit more, but he's already decided he wants to go forward with it. He's just tired of living with this and I understand, but it's scary.
COMMUNITY LEADER
Aww so when is your grandbaby due? Ours will be the beginning of Nov,
It is such an exiting time.....and I can only imagine how stressful for you as well not knowing how your son is doing and what is causing the symptoms.
Maybe it is stress related....new baby and all???
So.....no syrinx, which is good. Except it pretty much leaves us with likely scar tissue. They did do a CINE, which they've never mentioned before. I asked about it and NS did say there is lack of CSF in the area. Not much flow.
Basically it comes down to exploratory surgery. They can't image the scar tissue, but from what I saw, does appear to be low or blocked CSF; something is in the way. NS also mentioned that many NS's would look at this and say it's fine because it can't be seen, doesn't mean it doesn't exist. We've tried everything and it just grows worse. He was very clear about the risks of this type of surgery. Scar tissue could be wrapped around major blood vessels etc... and the risk of complication goes from 1% or 2% on the first surgery, to a 5% risk on the secondary. He just cannot know until he goes in and looks.
We're going to take a little time to think about it. Ultimately, he's 22 and an adult, he will have to make that final decision. This crap is hard. I just wish it were more clear cut, it would be easier to decide what to do. I'm just wrung out today. Thanks for listening.
Basically it comes down to exploratory surgery. They can't image the scar tissue, but from what I saw, does appear to be low or blocked CSF; something is in the way. NS also mentioned that many NS's would look at this and say it's fine because it can't be seen, doesn't mean it doesn't exist. We've tried everything and it just grows worse. He was very clear about the risks of this type of surgery. Scar tissue could be wrapped around major blood vessels etc... and the risk of complication goes from 1% or 2% on the first surgery, to a 5% risk on the secondary. He just cannot know until he goes in and looks.
We're going to take a little time to think about it. Ultimately, he's 22 and an adult, he will have to make that final decision. This crap is hard. I just wish it were more clear cut, it would be easier to decide what to do. I'm just wrung out today. Thanks for listening.
Hi Selma
He was in high school when he had his original surgery, so he wasn't working at that time. Since high school, he's worked in various jobs. The landscaping he loved, although it was hard, but the symptoms started just before his job did, but it may have aggravated it. He only had the job about 2 months.
He had a complete spine I think a year or two ago, but that would be a good question about full spine MRI, right now it's already scheduled so they won't change it now. I think NS thinks it is in the Cspine because of where symptoms are this time.
I've posted in here about the original NS too. He's one that does do low level chiari surgeries, which is fine. It was just the aftercare that stunk.
Thanks for the response Selma. Just knowing someone out there gets it, that is helpful. And congrats on your grandbaby - it's our first too, so exciting!
He was in high school when he had his original surgery, so he wasn't working at that time. Since high school, he's worked in various jobs. The landscaping he loved, although it was hard, but the symptoms started just before his job did, but it may have aggravated it. He only had the job about 2 months.
He had a complete spine I think a year or two ago, but that would be a good question about full spine MRI, right now it's already scheduled so they won't change it now. I think NS thinks it is in the Cspine because of where symptoms are this time.
I've posted in here about the original NS too. He's one that does do low level chiari surgeries, which is fine. It was just the aftercare that stunk.
Thanks for the response Selma. Just knowing someone out there gets it, that is helpful. And congrats on your grandbaby - it's our first too, so exciting!
COMMUNITY LEADER
Hi Sheri, welcome back but so sorry for why you are back......
I had my surgery in "09 as well and am much older then your son, but I never could have gone back to a job like that. How long post op did he go back to work?
There is no real "fix" since Chiari is a congenital condition....and yeah unfortunately there are some "specialists" out there that are no better then some without the experience a " specialist should have....
If it is scar tissue, it may have caused a syrinx to form, and with the temp. issues with his hands is a tell tale sign of a syrinx....so do make sure the MRI is of the complete spine and not just the cervical spine and brain.....just in case it is not due to scar tissue but may have been there all along and just missed b4.
I really think some see it as a cash cow and jumped on board and opened up clinics thinking they would have a revolving door of patients...not sure this is where your original Dr fits in, but over the years I have seen far too many pulling this on unsuspecting people just wanting to have less pain and be able to live a semi normal life what ever that may be.
Congratulations on the new grandbaby...I too am expecting a grandbaby....my daughter's first.
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