Recovery after Chiari surgery

sam2012 · 03-06-2014, 04:17 AM

I suffer to Arnold Chiari Malformation and Hydrocephalus.

I would really appreciate it.

My last surgeries were last year Feb and May 2013.

Thank You,

Take care,

Samantha
South Africa

brainiac · 10-18-2009, 08:11 PM

Quote:

Originally Posted by AllChiariOut

Hi there, I also had my Fourth surgery in August
it has been a very rough road, as far as the recovery everyone is different,I'm having the exact same symptoms you are having, with the exception of every other day I develop a bad headache, I'm thinking of trying Acupunture because the pain Meds are horriffic, please take it easy the symptoms only get wosre if you don't take it easy. I read and agree with one of the other members the Surgeons are pretty much done with you after Post Op follow up, so it's up to you stay on them, I've been off work now for 7 months and from March up to now I've had three surgeries, I hope you the best I'll let you now how it goes with the alternative pain relief.

Living this whole thing has been nothing more than a nightmare to say the least. How are we expected to still be mothers, wives and employees when we can barely take care of ourselves ? I have so many questions and the surgeons office doesn't really have answers.... I had my surgery Sept 3,2008 and my head still at times feels fuzzy like before the surgery. Is that because the swelling inside is still slowing down the spinal fluid? Dis you have any of that. ? Is it normal for your scalp on one side to be numb-like, is it normal when you try to tilt your head toward your left or right shoulder that your balance / off feeling. I don't want to say vertigo - but sort of dizzy... How about walking around- is it normal to still be tired after a bit...? I know it has only been 12 days for me. Yesterday was an excellent day but last night, I didn't sleep much and it pretty much kept me on the couch all day. I think 5 hours wasn't enough for recovery.. what is normal ? what do other people feel ..? I am looking for information or anyone to help or talk to..... seems like there is no one that has had this surgery around here..... any advise would be nice..... THANKS !!!

Hi there, I also had my Fourth surgery in August
it has been a very rough road, as far as the recovery everyone is different,I'm having the exact same symptoms you are having, with the exception of every other day I develop a bad headache, I'm thinking of trying Acupunture because the pain Meds are horriffic, please take it easy the symptoms only get wosre if you don't take it easy. I read and agree with one of the other members the Surgeons are pretty much done with you after Post Op follow up, so it's up to you stay on them, I've been off work now for 7 months and from March up to now I've had three surgeries, I hope you the best I'll let you now how it goes with the alternative pain relief.

abbydabby · 08-22-2010, 11:57 PM

I had surgery for 11.8 Chiari in Nov. 2009...Developed a CSF leak and had to have the whole thing done all over again in Dec. 2009. I still have to lay down several times a day and some days just can't do anything at all. I am terribly off balance...If I tilt my head to one side or the other...my whole body tips in that direction and I have to grab onto something to catch myself from falling!

Quote:

Originally Posted by AllChiariOut

Hi there,

Living this whole thing has been nothing more than a nightmare to say the least. How are we expected to still be mothers, wives and employees when we can barely take care of ourselves ? I have so many questions and the surgeons office doesn't really have answers.... I had my surgery Sept 3,2008 and my head still at times feels fuzzy like before the surgery. Is that because the swelling inside is still slowing down the spinal fluid? Dis you have any of that. ? Is it normal for your scalp on one side to be numb-like, is it normal when you try to tilt your head toward your left or right shoulder that your balance / off feeling. I don't want to say vertigo - but sort of dizzy... How about walking around- is it normal to still be tired after a bit...? I know it has only been 12 days for me. Yesterday was an excellent day but last night, I didn't sleep much and it pretty much kept me on the couch all day. I think 5 hours wasn't enough for recovery.. what is normal ? what do other people feel ..? I am looking for information or anyone to help or talk to..... seems like there is no one that has had this surgery around here..... any advise would be nice..... THANKS !!!

Noggin · 09-12-2010, 07:32 PM

I just wanted to post here for people like me who came on here before their surgery looking for information. All I saw were people who were still having problems or were sorry they had the surgery. I had surgery on 9/2/2010 and a week later I am doing GREAT! Sure, the pain was awful the first 2 days like you would expect, but for the first time since I was a kid, I can take a shower with my eyes closed! Growing up, I would fall over in the shower when I closed my eyes to wash my hair. My desent was 16mm and I had terrible headaches, balance issues, swallowing problems and I would drop things all the time. Now, I am feeling fantastic and so glad I had the surgery. I am so sorry for all of the people who are still having problems and wish you luck and peace soon. When I came on this sight, I seriously gave surgery a second thought because all of the feedback was negative. I'm glad I weighed my options and glad it has all worked out.

pisha · 05-01-2011, 03:39 AM

Quote:

Originally Posted by abbydabby

I had surgery for 11.8 Chiari in Nov. 2009...Developed a CSF leak and had to have the whole thing done all over again in Dec. 2009. I still have to lay down several times a day and some days just can't do anything at all. I am terribly off balance...If I tilt my head to one side or the other...my whole body tips in that direction and I have to grab onto something to catch myself from falling!

had my decompression on the 25th march, 2011, mine was 12mm, i have developed a leak on the inside so there is now a bump on the out side, surgern waiting to see if compression badage will work,

punkies187 · 02-28-2009, 12:58 AM

Quote:

Originally Posted by momof4

I am curious--if anyone reading this has had surgery for Chiari I would like to hear how you've done. It would be interesting seeing some response on this because there is so little information available! Good or bad, please share your story!

Hi my name is Melissa iam 22 i was diagnosed with chiari In july 2008. One morning i was sick and called in from work i woke up and my hand was numb like i had slept on it. it wasn't going away so i went to the doctor they said it was nothing that i was just sick. i made another app to go see the doctor from that time to the time i finally got to see the doctor some of my sympotms were the numbness in my hand not being able to feel hot or cold headachs throwing up for no reason, loosing balence when i would walk, sharp pain going down my arm like someone was stabbing me the doctors dident know why half of my body was numb they sent me to a neurologest they took a M.R.I. and found out i had chiari from there they sent me to a neurosergen and sept 9 2008 i had my surgery. they gave me a time period of 3 weeks to 6 months to retern back to work, i went back to work nov12 2008. Today is feb 27 2009 half of my body is still numb i dont have the feeling of throwing up anymore and sometimes i loose my balensce. lately my back has been hurting my neck starts getting sore when iam using the computer for a long time but other than that iam doing good i go back in aprl to take another M.R.I. to see how the scf is flowing and to see if i need another surgery. my dr told me that the surgery is to help stop more symptoms from happining it doesent cure the chairi there is no cure for it. the best thing to do is to do alot of reserch on it to help understand more. if anyone has questions please let me know id love to hear your stories.

cyberrosa · 03-07-2009, 07:41 PM

Quote:

Originally Posted by punkies187

Hi my name is Melissa iam 22 i was diagnosed with chiari In july 2008. One morning i was sick and called in from work i woke up and my hand was numb like i had slept on it. it wasn't going away so i went to the doctor they said it was nothing that i was just sick. i made another app to go see the doctor from that time to the time i finally got to see the doctor some of my sympotms were the numbness in my hand not being able to feel hot or cold headachs throwing up for no reason, loosing balence when i would walk, sharp pain going down my arm like someone was stabbing me the doctors dident know why half of my body was numb they sent me to a neurologest they took a M.R.I. and found out i had chiari from there they sent me to a neurosergen and sept 9 2008 i had my surgery. they gave me a time period of 3 weeks to 6 months to retern back to work, i went back to work nov12 2008. Today is feb 27 2009 half of my body is still numb i dont have the feeling of throwing up anymore and sometimes i loose my balensce. lately my back has been hurting my neck starts getting sore when iam using the computer for a long time but other than that iam doing good i go back in aprl to take another M.R.I. to see how the scf is flowing and to see if i need another surgery. my dr told me that the surgery is to help stop more symptoms from happining it doesent cure the chairi there is no cure for it. the best thing to do is to do alot of reserch on it to help understand more. if anyone has questions please let me know id love to hear your stories.

Hi Melissa,
i am a mother of two young boys and a wife age 38.
After reading your post, it sounded as though I had written it. I had my chiari surgery Oct 1st and will have mri done end of March or beginning of April to see how I am doing. I have been doing a lot of reading but everyone is different. I am on nerontin for pain but it doesnt help. I would like to know what can help better csf circulation. I have days i feel better than others. My symptoms that have not gone away are strong face tingling on back of neck, face and ears as though the blood wants to burst out my skin or something is crawling under my skin. When I wake up in morning my legs and arm are heavy as though they weigh a ton and i walk like a soldier.

at any rate, I wish you start feeling better soon and that your mri results show improvent. I will keep you in my prayers and do not give up. take care, Rosa from NY

baledo · 09-19-2010, 10:45 AM

Quote:

Originally Posted by momof4

I am curious--if anyone reading this has had surgery for Chiari I would like to hear how you've done. It would be interesting seeing some response on this because there is so little information available! Good or bad, please share your story!

anyone reading to response, please be patient, never done this before. I had a C1-C-2 Laminectomy & Decompression Chiari w/Doral Reconstruction on June 15, 2010. I was in ICU for three days, barely remember. I went home the fourth day. did everything neuro surgeon told me to do. for the last couple of weeks my symtoms came back but worse. My doctor put me on different types of pain medicine kept telling why am I having all these problems. She kept telling me it was not my Chiari. My last comment to her was I did not say it was. I know she fixed me, but why is she fighting me and telling what is the problem. I am getting an mri and xray on Monday.
my symtoms are tingling on the right side of my head followed by numbness behind the ear then comes the pain of the century. if feels like heavy pressure crawling up my skull. Sometimes I have to lay down for a couple of hours for the pain to stop. Sometimes when I'm work and they start feel sick.

caligirl408 · 05-03-2011, 01:17 PM

Quote:

Originally Posted by momof4

I am curious--if anyone reading this has had surgery for Chiari I would like to hear how you've done. It would be interesting seeing some response on this because there is so little information available! Good or bad, please share your story!

i just recently had the Chiari Decompression surgery on March 7, 2011 and the week after I got of the hospital was the worst week of my life. I was placed back in the hospital on three different occations. The first time was that I was vomitting blood over and over again on my first day home. The second time I was back at the hospital was when I started to lose my vision and balance. The third time i was at the hospital was my fifth day back home i feinted and my blood pressure went down to 98/30. I amd still on the road to recovery cause my surgery is only a month old but, since the surgery, I still am unable to turn my neck. Almost every night its hard for me to get into a position comfortable. But the surgery was also benificial. For the most part, I have not had anymore headaches but lately they have been coming back. Im am only 15 so i hope it helps me eventually.

lchunter · 09-10-2012, 10:39 PM

Quote:

Originally Posted by momof4

I am curious--if anyone reading this has had surgery for Chiari I would like to hear how you've done. It would be interesting seeing some response on this because there is so little information available! Good or bad, please share your story!

I was diagnosed in Feb. of this year. Had decompression surgery in July.
It's September and I am having the worst headaches I have ever had prior to the surgery. The numbness and to going is gone, but my insomnia has gotten worse and ringing in my left ear.Ice Packs, percoet and Valium and being horizontal all day.
I had an MRI today, no results.
I am frustrated and seems that no one understands this condition. Does it EVERgo away?

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