Aa
post op questions
Hi everyone. I am new to the forum. I had a 5mm herniation showing on the MRI. My surgery was scheduled for three hours and it took seven. The surgeon said that it was much worse once he got in there.
I guess I am feeling extremely depressed because I am not feeling human yet. Dont get me wrong....the pressure headaches are gone in the back of my head. But I still have the cold hands and feet, the front of my head now hurts, I am still dealing with temperature issues, I am still sick to my stomach, and my heart still races off and on. Oh....and I am sooooo tired.
Maybe I am asking for things to happen too quickly. I don't know. All I know is that I am more depressed now than before the surgery. At least then I could slap a smile on my face and at least function for my family. Now I dont even feel like thinking about putting that smile on my face.
What is wrong with me??? Could there be something wrong, or is all of this normal in the healing process? I was never really told what to expect after. He just said that most people go back to work in a month. Gosh....I can't imagine going back to my job in a week.
Can anyone help???
Please email me:
***@****
I am desperate
Thanks so much!!!
Dani
I guess I am feeling extremely depressed because I am not feeling human yet. Dont get me wrong....the pressure headaches are gone in the back of my head. But I still have the cold hands and feet, the front of my head now hurts, I am still dealing with temperature issues, I am still sick to my stomach, and my heart still races off and on. Oh....and I am sooooo tired.
Maybe I am asking for things to happen too quickly. I don't know. All I know is that I am more depressed now than before the surgery. At least then I could slap a smile on my face and at least function for my family. Now I dont even feel like thinking about putting that smile on my face.
What is wrong with me??? Could there be something wrong, or is all of this normal in the healing process? I was never really told what to expect after. He just said that most people go back to work in a month. Gosh....I can't imagine going back to my job in a week.
Can anyone help???
Please email me:
***@****
I am desperate
Thanks so much!!!
Dani
COMMUNITY LEADER
from all I have seen posted here...yup....I actually had a pressure HA today....not sure y, but I didn't take nething and I am feeling better tonight.
After decompression we will still have some issues, we will always have chiari, so we learn our triggers and try our best to ignore them.
Time helps too : )
"selma"
After decompression we will still have some issues, we will always have chiari, so we learn our triggers and try our best to ignore them.
Time helps too : )
"selma"
Thanks so much everyone for the kind words of motivation. It has been hard. I went and had the spinal. Seemed to help for a few hours. Now the heaaches are back. I am going to get through this though.
So all of this is normal and will go away in time???
So all of this is normal and will go away in time???
Talking about your feelings here where you know others understand is the best therapy for you, so keep doing it!
Also I am going to give you some ways or "tools" to hopefully help you deal with the depression.
First, you have every right to be depressed and need to go through the emotions you are feeling so you can "get them out of your system".
Now, with that said, it is also easy to allow your self to get "stuck" in an emotion, particularly depression. The only way to break the cycle is to force yourself to focus on something positive in your life and or situation. You have to change the way you see things to help your mind heal too.
For example I have a client who has to eat a very restricted diet. He told me today "I can't eat anything" I told him to start telling himself "I GET to eat.....whatever it is". So if you can't find something positive CREATE something positive.
I was dx'd with breast cancer 2 yrs ago. Rather than looking at it as "I have a potentially fatal disease.....Im going to lose my breasts and my hair...." I chose to look at it as "Wow at all the new people I will get to meet that otherwise wouldnt have. I am going to get new, BIGGER breasts (lol) and my hair might grow back curly (which it did)."
All of this takes practice and it wont change over night. But when you are at your lowest, you MUST find or create something good. Every day it is a little easier and before you know it, your mind is as healthy as your body!
My motto: "It's not whether my cup is half full OR half empty....I am just glad to HAVE a cup!"
Also I am going to give you some ways or "tools" to hopefully help you deal with the depression.
First, you have every right to be depressed and need to go through the emotions you are feeling so you can "get them out of your system".
Now, with that said, it is also easy to allow your self to get "stuck" in an emotion, particularly depression. The only way to break the cycle is to force yourself to focus on something positive in your life and or situation. You have to change the way you see things to help your mind heal too.
For example I have a client who has to eat a very restricted diet. He told me today "I can't eat anything" I told him to start telling himself "I GET to eat.....whatever it is". So if you can't find something positive CREATE something positive.
I was dx'd with breast cancer 2 yrs ago. Rather than looking at it as "I have a potentially fatal disease.....Im going to lose my breasts and my hair...." I chose to look at it as "Wow at all the new people I will get to meet that otherwise wouldnt have. I am going to get new, BIGGER breasts (lol) and my hair might grow back curly (which it did)."
All of this takes practice and it wont change over night. But when you are at your lowest, you MUST find or create something good. Every day it is a little easier and before you know it, your mind is as healthy as your body!
My motto: "It's not whether my cup is half full OR half empty....I am just glad to HAVE a cup!"
If it's any consolation you are describing exactly how I felt at 3 weeks post op...In fact if you looked back there is my initial post when I found this forum and I'm sure it sounds just like yours!!
At that point...I was still in so much pain, unable to do much, dealing with lots of headaches, ear pain, facial pain and that extreme pressure feeling...it goes on and on...
I think the worse thing is that is was so much different than what I was expecting...I had read all those stories about ppl coming out feeling amazing but from my experience that is the exception NOT the reality.
The good news...if you are patient and listen to your body...it will get better...I see in your other thread that you are having a LP so hopefully that will shed some light on it..
The "true Chiari" vs what?? I'm not sure what that means either...but I am guessing what it means is that it was most definitely blocking the CSF flow..
I am very interested in the epidural information you posted...I had 3 C-sections...1 epidural and two spinal taps...and I definitely got worse with each child. In fact, I remember with my 2nd feeling the tube scraping down my spine...wasn't a nice feeling..
Coincidentally, now that area of my spine where they do the taps..hurts continually and I have just found out I may have a cavernous hemangioma there...I am wondering if there is a connection...
It is very interesting to hear what you said about the vacuum effect.. I am assuming that your NS is not saying that your Chiari is "acquired" but that it was made worse by this?
Carolyn
At that point...I was still in so much pain, unable to do much, dealing with lots of headaches, ear pain, facial pain and that extreme pressure feeling...it goes on and on...
I think the worse thing is that is was so much different than what I was expecting...I had read all those stories about ppl coming out feeling amazing but from my experience that is the exception NOT the reality.
The good news...if you are patient and listen to your body...it will get better...I see in your other thread that you are having a LP so hopefully that will shed some light on it..
The "true Chiari" vs what?? I'm not sure what that means either...but I am guessing what it means is that it was most definitely blocking the CSF flow..
I am very interested in the epidural information you posted...I had 3 C-sections...1 epidural and two spinal taps...and I definitely got worse with each child. In fact, I remember with my 2nd feeling the tube scraping down my spine...wasn't a nice feeling..
Coincidentally, now that area of my spine where they do the taps..hurts continually and I have just found out I may have a cavernous hemangioma there...I am wondering if there is a connection...
It is very interesting to hear what you said about the vacuum effect.. I am assuming that your NS is not saying that your Chiari is "acquired" but that it was made worse by this?
Carolyn
It took me months and months to start to feel human again, despite most of my pre-surgery symptoms going away.
Be gentle with yourself. It's going to take a while to feel better. When you're up to it, get some physical therapy too. I had to do this for my neck and it helped a lot.
The "3 week" recovery isn't based in reality. You had major brain and spine surgery, and all those neck muscles were cut.
I was very depressed too.
It's all ok and part of this.
Try seeing if you notice a tiny improvement in a WEEK, not tomorrow. Each day is too short to see any real difference.
We're here for you.
Tina
Be gentle with yourself. It's going to take a while to feel better. When you're up to it, get some physical therapy too. I had to do this for my neck and it helped a lot.
The "3 week" recovery isn't based in reality. You had major brain and spine surgery, and all those neck muscles were cut.
I was very depressed too.
It's all ok and part of this.
Try seeing if you notice a tiny improvement in a WEEK, not tomorrow. Each day is too short to see any real difference.
We're here for you.
Tina
COMMUNITY LEADER
Well, in thinking this over, could be that u indeed have a true chiari in that ur skull is smaller , but that the epidoral caused a much bigger herniation .....so u kindda got a 2 fold issue???
No worries...rant all u need to here, we all understand.
in the healing process u do go thru stages...depression is one of them....increased pain is another....stay on top of ur meds right now take when they r due so u r ahead of the pain, not trying to fix it after it starts....
Keep on trying to get the neck moving...sit in a high backed soft chair and slowly turn ur head...the support of the chair helps...and use heat b4...B4 u start and after...the heat helps loosen the muscles.when moving keep the shoulder that is opposite of the direction u r turning to stays flat against the chair or rise up to assist the turning......
It all takes time : )
"selma"
No worries...rant all u need to here, we all understand.
in the healing process u do go thru stages...depression is one of them....increased pain is another....stay on top of ur meds right now take when they r due so u r ahead of the pain, not trying to fix it after it starts....
Keep on trying to get the neck moving...sit in a high backed soft chair and slowly turn ur head...the support of the chair helps...and use heat b4...B4 u start and after...the heat helps loosen the muscles.when moving keep the shoulder that is opposite of the direction u r turning to stays flat against the chair or rise up to assist the turning......
It all takes time : )
"selma"
Join my club of confusion as well. The dr was the one who said that I acquired the chiari. His assistant was the one that said that I had a true chiari. I don't go back to see him and have an MRI until July 6. Believe me...I am going with a ton of questions written down. Sorry for the confusion....I am confused as well.
And my depression is getting worse. And it is because of the way I feel. My forehead is killing me. Like the pressure has moved from the back of my head to the front. Above both of my ears hurt and my ears ache like I have earaches. I still cant turn my neck. My muscles are so stiff and tight. I am sooo tired. Hands and feet are still cold. Face is still hot. I just dont feel good at all. And the dr says that it will all go away in time.
I am three weeks post op today. I would have thought I would be better thats all :0(
Sorry for the confusion.
And my depression is getting worse. And it is because of the way I feel. My forehead is killing me. Like the pressure has moved from the back of my head to the front. Above both of my ears hurt and my ears ache like I have earaches. I still cant turn my neck. My muscles are so stiff and tight. I am sooo tired. Hands and feet are still cold. Face is still hot. I just dont feel good at all. And the dr says that it will all go away in time.
I am three weeks post op today. I would have thought I would be better thats all :0(
Sorry for the confusion.
COMMUNITY LEADER
Hi...sorry but I am confused, which is easy for me...u said ur dr told u u had a "true chiari" and then u asked about acquired chiari....which did u have?
It is possible to have chiari and then have an epidural cause the symptoms to exacerbate....
LP and epidurals r not the best things for chiarians unless the dr performing it is aware and is sure to draw very slowly and not cause and issue like urs had.
But yes it is possible to acquire chiari, but a true chiari I felt was congenital...so that is y I am confused.
"selma"
It is possible to have chiari and then have an epidural cause the symptoms to exacerbate....
LP and epidurals r not the best things for chiarians unless the dr performing it is aware and is sure to draw very slowly and not cause and issue like urs had.
But yes it is possible to acquire chiari, but a true chiari I felt was congenital...so that is y I am confused.
"selma"
My neurosurgeon is Dr. Raymond Sekula. And yes he is an expert from Allegheny General in Pittsburgh, PA. He has been wonderful. And his assistant Ann has been amazing. I have felt at ease this entire time I have been with him.
I guess I am just getting frustrated. I had spoken to a few people that had the decompression surgery and felt amazing after. Like two weeks after. I guess when you have those expectations, you kinda feel let down ya know?
The NS keeps telling me to give it time...that things will improve. He said that mine was a "true chiari." What does that mean?
As for the tethered cord and the other stuff....I don't think so. I had an hour in a half MRI and all it showed was my herniation and my CINE test that showed that my CSF fluid was almost completely being blocked.
It all happened pretty fast. I think that after eight long years of going to dr after dr, we were thrilled to have a dx. Even if it meant brain surgery. I mean....people thought that I was crazy....going to all these docs.
And has anyone heard of acquiring chiari? He said that when they were poking and prodding me trying to place my epidural for my csection (took them over an hour), that they created a vacum in my spinal canal which pulled my brain down. Hence....the reason for my symptoms starting the day after I had my daughter.
I would really like to know how people did after their surgery? What I should and shouldn't be doing, etc. All my husband will allow me to do is go for a small walk and then back in the recliner I go. It is quite depressing.
I am so glad I found this forum.
Thank you,
Dani
I guess I am just getting frustrated. I had spoken to a few people that had the decompression surgery and felt amazing after. Like two weeks after. I guess when you have those expectations, you kinda feel let down ya know?
The NS keeps telling me to give it time...that things will improve. He said that mine was a "true chiari." What does that mean?
As for the tethered cord and the other stuff....I don't think so. I had an hour in a half MRI and all it showed was my herniation and my CINE test that showed that my CSF fluid was almost completely being blocked.
It all happened pretty fast. I think that after eight long years of going to dr after dr, we were thrilled to have a dx. Even if it meant brain surgery. I mean....people thought that I was crazy....going to all these docs.
And has anyone heard of acquiring chiari? He said that when they were poking and prodding me trying to place my epidural for my csection (took them over an hour), that they created a vacum in my spinal canal which pulled my brain down. Hence....the reason for my symptoms starting the day after I had my daughter.
I would really like to know how people did after their surgery? What I should and shouldn't be doing, etc. All my husband will allow me to do is go for a small walk and then back in the recliner I go. It is quite depressing.
I am so glad I found this forum.
Thank you,
Dani
Dani- I think recovery depends on each person, Have you spoken to your NS about all this? If you are depressed please let your NS know. Ive had my surgery in October 09, and i am still healing however i was one who suffered complications so healing is a bit longer. Anyway this surgery is not a cure, basically think of it as a patch, some people benefit from it while others continue to have issues, as selma asked is your NS knowageable in Chiari?
wish you all the best but please contact your NS as soon as possible!
take care and take one step at a time.
wish you all the best but please contact your NS as soon as possible!
take care and take one step at a time.
COMMUNITY LEADER
HI and welcome to the Chiari forum.
So u r 3 weeks post op?...I am just over a yr post op and not back to work...now I do have a few other issues going on so do not judge by me.
There r stages to recovery and being depressed is one of them.
Did u get checked for other issues?Syringomyelia, tethered cord, EDS...ect?
My surgery was to be 3 to 4 hrs and was closer to 8!....there is no way for them to really know until they get in there.
I am sorry but the TOS does not allow personal info on the public forum.....but we do have a private messaging system here...click on the persons name and u will have the ability to send a note ( everyone can see) or add to a thread.( public) or send a PM (private message) only the person u send it to can see it.
I am happy to have u join us, so sorry for the reasons u had to seek us out.
PS- was ur NS a chiari specialist?
"selma"
So u r 3 weeks post op?...I am just over a yr post op and not back to work...now I do have a few other issues going on so do not judge by me.
There r stages to recovery and being depressed is one of them.
Did u get checked for other issues?Syringomyelia, tethered cord, EDS...ect?
My surgery was to be 3 to 4 hrs and was closer to 8!....there is no way for them to really know until they get in there.
I am sorry but the TOS does not allow personal info on the public forum.....but we do have a private messaging system here...click on the persons name and u will have the ability to send a note ( everyone can see) or add to a thread.( public) or send a PM (private message) only the person u send it to can see it.
I am happy to have u join us, so sorry for the reasons u had to seek us out.
PS- was ur NS a chiari specialist?
"selma"
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