Aa
Any head relief
So I go for surgery on Thursday. I just wondering if anyone can tell me if the surgery helps with the pressure and pain in my head? I already have nerve damage to by left side but I am looking and hoping for relief for my head more then anything. I am nervous about this surgery. Looking for stories of how other people coped and the surgery results.
COMMUNITY LEADER
Thanks CW....no need to thank me....so glad to see u on here....miss u so much.
sis
No need for thanks Lora, though I do appreciate it. You see many of us have been through what you are going through. It was others who reached out to help me that helped me to not give up.
As for mental acuity. Patience, it takes time. It's been ... wow... just over 4 years since my initial surgery. Just in the last few months I've began to get glimpses of the photographic memory that used to be there. Memory is still not what it used to be though it does still seem to be getting better. Even now it seems keeping that positive frame of mine and staying calm seems to aid a great deal with mental acuity.
BTW- Hang on tight to selmaS! She is the one who initially helped me to realize things can get better. :-) Thanks again selmaS [lil sis].
CW
As for mental acuity. Patience, it takes time. It's been ... wow... just over 4 years since my initial surgery. Just in the last few months I've began to get glimpses of the photographic memory that used to be there. Memory is still not what it used to be though it does still seem to be getting better. Even now it seems keeping that positive frame of mine and staying calm seems to aid a great deal with mental acuity.
BTW- Hang on tight to selmaS! She is the one who initially helped me to realize things can get better. :-) Thanks again selmaS [lil sis].
CW
COMMUNITY LEADER
I have to echo what Chiari Wolf stated we are all different and will have different outcomes, so just bcuz CW and I had no pressure post op does not mean u will feel the same.....
And even tho someone may develop other issues post op does not mean they are not happy to have had surgery either.,...
It is a individual decision, and for most regardless of how they do post op, if the surgery restores CSF flow then it was successful...if there is still pressure then it may be a related unDX'd condition....
I have no regrets having had my surgery and would do it again....
Wishing u all the best.
And as CW said positive thoughts for positive results <3
Thank you Lisa
It sure feels good to talk to someone who is experiencing and has experienced the same thing. But I sure hope you feel better soon because I wouldn't want anyone to go through this. As much as I try to explain to my family and friends about how I feel they all still look at me and don't understand. They support me and love me but having the ability to talk to someone who has walked in my shoes sure is comforting. The words you wrote about your NS saying most people saying its not as bad as they expected is comforting. I am scared about the surgery. I just cant imagine that having a chunk of your skull cut off by your brain is a good thing. I am h
It sure feels good to talk to someone who is experiencing and has experienced the same thing. But I sure hope you feel better soon because I wouldn't want anyone to go through this. As much as I try to explain to my family and friends about how I feel they all still look at me and don't understand. They support me and love me but having the ability to talk to someone who has walked in my shoes sure is comforting. The words you wrote about your NS saying most people saying its not as bad as they expected is comforting. I am scared about the surgery. I just cant imagine that having a chunk of your skull cut off by your brain is a good thing. I am h
Thank you so much for taking the time to answer me. I am glad that you recovered and pulled through your surgery. It was a relief to hear that the pressure, mental acuity, and fog was better. I find myself slurring my words and not being able to focus on anything myself plus my mind and brain hasn't been sharp like it use to be but my doctor never told me that it was a condition of the deformation. They just discovered the problem 10 days ago and I go for surgery this week so I am fortunate that I can get some relief soon. I am so looking forward to getting my mind back and the pressure release but from what I am reading on this site tells me that there are a lot of problems still ahead. Thanks so much on the advice about staying calm... I am working on that and will definitely take your advice.
Lora....
Most people can never imagine the pain and pressure we feel in our head. Every day it is still unbelievable to me even. I can tell you my daughter had the surgery nine years ago and she had the same pain and pressure in her head as we do. That was gone when she woke in the ICU along with some other symptoms. She said she felt better immediately. She did have pain from the surgery but she said that goes away and she would gladly go through it again to get rid of the pain if she had to. Now I face the same as her, and you so I understand your concern. I'm sure you have done your research and have suffered immensely. We all have it seems. That's really all we can do. There comes a point I believe where we have to come to peace with this. I'm working on that part, but I hope you can find a way to be there. My NS says most people tell him it was not as bad as they were expecting. You will get through this, have hope :-) Lisa
Most people can never imagine the pain and pressure we feel in our head. Every day it is still unbelievable to me even. I can tell you my daughter had the surgery nine years ago and she had the same pain and pressure in her head as we do. That was gone when she woke in the ICU along with some other symptoms. She said she felt better immediately. She did have pain from the surgery but she said that goes away and she would gladly go through it again to get rid of the pain if she had to. Now I face the same as her, and you so I understand your concern. I'm sure you have done your research and have suffered immensely. We all have it seems. That's really all we can do. There comes a point I believe where we have to come to peace with this. I'm working on that part, but I hope you can find a way to be there. My NS says most people tell him it was not as bad as they were expecting. You will get through this, have hope :-) Lisa
Lora,
You know every rose petal is just a little different. Every bird feather is slightly different from the next. Just as each of us have different fingerprints. Point being that each of us, although having similar medical conditions, will have slightly different outcomes. Thus please take my answer with a grain of salt.
As for my case, YES, the surgery did indeed relieve so much preassure. It was enough of a relief that upon waking from the initial surgery, despite the pain from the surgery itself, I felt much better than before going in. Mental acuity is what I most recall... pre-op I had so much trouble simply focusing on anything. That chiari fog was almost gone right away. I contribute part of that to the pressure being gone. In my case the NS came to my room on the release date and told me that he was amazed I was alive. He explained the pressure from CM and an Arachnoid Cyst on the brain stem was very severe.
Now, about a year later I developed a large psudo and the cyst closed up and began to enlarge again. Being as I also have Hydro they went in to alleviate pressure again. This time the pressure was high enough the NS and Anesthesiologist said when they entered the area I sprayed the OR with csf. Again, almost immediately upon waking up I felt a tremendous relief. Note, this surgery was not necessarily for CM though they did put in the Chiari Mesh. This incident is only mentioned as the type of pressure was the same as what I experienced with CM.
I do hope this helps calm your nerves. Try to remember - A calm assertive patient recovers much faster. Just my opinion, but, I firmly believe this is even more important for a CM patient. Why? Because our CNS is already heavily involved due to the Brain Stem compression caused by the condition. So we already inherently have issues with over active anxiety for lack of a better way to put it. So calm is the rule of the day. Near impossible at times like this... but whatever you have to do to bring your mind to a calm accepting state- It truly will help you recuperate.
CW
You know every rose petal is just a little different. Every bird feather is slightly different from the next. Just as each of us have different fingerprints. Point being that each of us, although having similar medical conditions, will have slightly different outcomes. Thus please take my answer with a grain of salt.
As for my case, YES, the surgery did indeed relieve so much preassure. It was enough of a relief that upon waking from the initial surgery, despite the pain from the surgery itself, I felt much better than before going in. Mental acuity is what I most recall... pre-op I had so much trouble simply focusing on anything. That chiari fog was almost gone right away. I contribute part of that to the pressure being gone. In my case the NS came to my room on the release date and told me that he was amazed I was alive. He explained the pressure from CM and an Arachnoid Cyst on the brain stem was very severe.
Now, about a year later I developed a large psudo and the cyst closed up and began to enlarge again. Being as I also have Hydro they went in to alleviate pressure again. This time the pressure was high enough the NS and Anesthesiologist said when they entered the area I sprayed the OR with csf. Again, almost immediately upon waking up I felt a tremendous relief. Note, this surgery was not necessarily for CM though they did put in the Chiari Mesh. This incident is only mentioned as the type of pressure was the same as what I experienced with CM.
I do hope this helps calm your nerves. Try to remember - A calm assertive patient recovers much faster. Just my opinion, but, I firmly believe this is even more important for a CM patient. Why? Because our CNS is already heavily involved due to the Brain Stem compression caused by the condition. So we already inherently have issues with over active anxiety for lack of a better way to put it. So calm is the rule of the day. Near impossible at times like this... but whatever you have to do to bring your mind to a calm accepting state- It truly will help you recuperate.
CW
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