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Recovery after Chiari surgery

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Unread 11-13-2008, 11:17 PM   #11
mother&wife
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Quote:
Originally Posted by momof4 View Post
Hi,

I am new here and have been searching for more information regarding recovery after surgery.

My story: I had mild headaches with an occasional "big" one for several years but in July '06 they blew up. They became intense daily with very severe headaches every couple weeks. The daily ha intensified to the point that I couldn't handle any noise, movement made it worse and of course light sensitivity increased. After several doctors treated me with no results I was referred to Diamond Headache in Chicago where I took loads of drugs but the headaches continued to worsen. I lost feeling in my fingertips, had increasing difficulty swallowing, the right side of my face sagged, daily toothaches, ringing in the ears, loss of balance, etc.

Against my Diamond's doctor's advice, I found a neurosurgeon that said that I had a "small" chiari and pulsating artery in my spinal cord that needed more room. (I may not be describing this in correct medical terms!) The surgeon is fabulous at surgery and I would recommend him in a heartbeat!

I woke up from surgery in February with a huge relief to my headaches. My struggle has been the recovery. My neck is so weak and I feel that I have come to a standstill. If I am up too long my neck will become sore and feel inflamed in the back to the point that I can't move it at all and it feels like my head will fall off. If I push it to far, I will get a headache although not nearly to the intensity that I had before. If I really overdo it, which means that I don't lay down 3-5 hours of the day and sit at my office desk for about 3-4 hours in the morning or try other activity, I may be totally flat in bed the next day in misery.

It has been just shy of 6 months since surgery and I am starting to wonder if something has gone wrong. The surgeon is caring and intensely intelligent but doesn't seem to like the follow up issues. The nurses will sometimes say that this is normal and sometimes will say that I should be doing better. I am not getting a clear answer. The dr finally authorized physical therapy but limited to only flexing my shoulderblades and stretching my chin in and out. (my chin doesn' go "in") He said no aerobic excersize or any other neck strengthening activities.

What do I do? The surgeon lives about 8 hours away and travel is difficult. He doesn't seem to think that I need to come back. I am longing to become stronger, both in body and neck and am starting to wonder if it will get better. I am healthy, just 39, average weight and no other health issues. I would love to hear your thoughts!

Thanks!
motherof4
Hello, I had surgery my on Sept. 2008 and thank god the surgery had a good outcome. It been 2 months since my surgery and I'm still getting the dizziness,coordination,balance and the headache I get after are extremely bad. My neck and shoulders still bother me, my surgeon tell me that because he had to cut muscles from the neck. When I tell my surgeon about what I'm feeling. All he can tell me it will take time and it might take up to a year before I start feeling better. I'm still on alot of medication and don't seem to help. I'm also taking physical therapy I'm being told that should help me, so let see what happen. Just when i thought things couldn't get any better, I find out I'm pregnant. This should be a happy time for me but I'm scare to go through this pregnancy because then I will taking off all of my medication. I can't imagine going through the pregnancy with chiari. And on top of this I can't go back to work yet. What a girl to do?

Thanks,
mother&wife
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Unread 11-30-2008, 02:02 AM   #12
typicalfam
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Quote:
Originally Posted by momof4 View Post
Hi,

I am new here and have been searching for more information regarding recovery after surgery.

My story: I had mild headaches with an occasional "big" one for several years but in July '06 they blew up. They became intense daily with very severe headaches every couple weeks. The daily ha intensified to the point that I couldn't handle any noise, movement made it worse and of course light sensitivity increased. After several doctors treated me with no results I was referred to Diamond Headache in Chicago where I took loads of drugs but the headaches continued to worsen. I lost feeling in my fingertips, had increasing difficulty swallowing, the right side of my face sagged, daily toothaches, ringing in the ears, loss of balance, etc.

Against my Diamond's doctor's advice, I found a neurosurgeon that said that I had a "small" chiari and pulsating artery in my spinal cord that needed more room. (I may not be describing this in correct medical terms!) The surgeon is fabulous at surgery and I would recommend him in a heartbeat!

I woke up from surgery in February with a huge relief to my headaches. My struggle has been the recovery. My neck is so weak and I feel that I have come to a standstill. If I am up too long my neck will become sore and feel inflamed in the back to the point that I can't move it at all and it feels like my head will fall off. If I push it to far, I will get a headache although not nearly to the intensity that I had before. If I really overdo it, which means that I don't lay down 3-5 hours of the day and sit at my office desk for about 3-4 hours in the morning or try other activity, I may be totally flat in bed the next day in misery.

It has been just shy of 6 months since surgery and I am starting to wonder if something has gone wrong. The surgeon is caring and intensely intelligent but doesn't seem to like the follow up issues. The nurses will sometimes say that this is normal and sometimes will say that I should be doing better. I am not getting a clear answer. The dr finally authorized physical therapy but limited to only flexing my shoulderblades and stretching my chin in and out. (my chin doesn' go "in") He said no aerobic excersize or any other neck strengthening activities.

What do I do? The surgeon lives about 8 hours away and travel is difficult. He doesn't seem to think that I need to come back. I am longing to become stronger, both in body and neck and am starting to wonder if it will get better. I am healthy, just 39, average weight and no other health issues. I would love to hear your thoughts!

Thanks!
motherof4
Hope this helps: I, too, have four children and I feel for you. After two years of frustration after a " failed" Chiari surgery, the best thing I did for myself was to fins a massage therapist... One with extensive training in our conditions. I wished SO MUCH that I began this right away following my surgery because my muscles were so tight and locked in place that it took her a long time to re-train them to relax. Living in WI before didn't help.. The cold ABSOLUTELY KILLED ME!! Hope this helps!! There will be a ASAP conference in Madison, WI in July.. PLEASE.. LOOK INTO IT.. It'll be INVALUABLE!!! see ASAP site!! Lauri
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Unread 12-04-2008, 08:18 AM   #13
Bethanne1012
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I am sorry to hear that you are not doing better. I recently had my decompression done on 11/10/2008 and even though I am still just shy of a month after surgery I am doing a lot better. I have found these sites that might be helpful to you. Type in Chip's Chiari Page in your search engine. This page has helped me a lot and they also have a support group. Try also typing in Chiari Malformation Institute in your search engine too. They are a hospital in New York that does ONLY Chiari Malformation procedures and may be able to help you. I don't know where you are located, but it's worth a shot maybe just to get some answers. Maybe your doctor just had not done enough of these procedures too and cannot help you. Have you tried searching for a surgeon in your area that is top notch in this field or has done quite a lot of them? I didn't know that my town even had a support group until I looked and found quite a lot of people who have had this done. I thought I was very much alone in my journey until I started searching. Now, I don't know what the months ahead have in store for me, but I am going to keep the faith that I WILL get better each and every day, even though sometimes I think I will not. I have to as I have two beautiful children that need me. I wish you luck on your journey and if you have anymore questions or anything please don't hesitate to contact me.
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Unread 02-28-2009, 12:58 AM   #14
punkies187
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Quote:
Originally Posted by momof4 View Post
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.
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Unread 03-07-2009, 07:41 PM   #15
cyberrosa
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Quote:
Originally Posted by punkies187 View Post
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
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Unread 05-12-2009, 12:15 AM   #16
punkies187
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so its been 7 months after my surgery. i went back to my doctor today i told him that ive been out of no where throwing up, i have stabbing pain in my arms that come and go i have some pain in my neck and back. none of my feeling came back still numb. i have to go back in a week to take another mri but for the pain and stuff he wants to put me on neurontin i was wondering if anyone has taken it and how it worked for them please let me know thank you.
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Unread 05-16-2009, 01:51 PM   #17
betty21
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i had surgery last year in april - my recovery has been awaful - i still dont feel recovered and i wish id never had the surgery! i have had just so many problems and the effect on me and my life is just huge - ive not been able to go back to work since the surgery and dont thinkn my work will ever have me back now!

i hope things get better for you - im tired of all this now - i wish every day i could turn back the clock and never have the surgery
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Unread 05-20-2009, 08:06 PM   #18
squirrel154
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Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please

thank
Laura
Quincy,MI
Chiari 9.4mm


Quote:
I am new here and have been searching for more information regarding recovery after surgery.

My story: I had mild headaches with an occasional "big" one for several years but in July '06 they blew up. They became intense daily with very severe headaches every couple weeks. The daily ha intensified to the point that I couldn't handle any noise, movement made it worse and of course light sensitivity increased. After several doctors treated me with no results I was referred to Diamond Headache in Chicago where I took loads of drugs but the headaches continued to worsen. I lost feeling in my fingertips, had increasing difficulty swallowing, the right side of my face sagged, daily toothaches, ringing in the ears, loss of balance, etc.

Against my Diamond's doctor's advice, I found a neurosurgeon that said that I had a "small" chiari and pulsating artery in my spinal cord that needed more room. (I may not be describing this in correct medical terms!) The surgeon is fabulous at surgery and I would recommend him in a heartbeat!

I woke up from surgery in February with a huge relief to my headaches. My struggle has been the recovery. My neck is so weak and I feel that I have come to a standstill. If I am up too long my neck will become sore and feel inflamed in the back to the point that I can't move it at all and it feels like my head will fall off. If I push it to far, I will get a headache although not nearly to the intensity that I had before. If I really overdo it, which means that I don't lay down 3-5 hours of the day and sit at my office desk for about 3-4 hours in the morning or try other activity, I may be totally flat in bed the next day in misery.

It has been just shy of 6 months since surgery and I am starting to wonder if something has gone wrong. The surgeon is caring and intensely intelligent but doesn't seem to like the follow up issues. The nurses will sometimes say that this is normal and sometimes will say that I should be doing better. I am not getting a clear answer. The dr finally authorized physical therapy but limited to only flexing my shoulderblades and stretching my chin in and out. (my chin doesn' go "in") He said no aerobic excersize or any other neck strengthening activities.

What do I do? The surgeon lives about 8 hours away and travel is difficult. He doesn't seem to think that I need to come back. I am longing to become stronger, both in body and neck and am starting to wonder if it will get better. I am healthy, just 39, average weight and no other health issues. I would love to hear your thoughts!

Thanks!
motherof4
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Unread 05-22-2009, 06:30 PM   #19
hood21
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There is a web site called "WACMA" The World Arnold Chiari Association********Click on onsite info and there is a listing for doctors and you can search by state. It looks like there is only one in your state, but if you are willing to travel you can go to another state. Good luck.
Quote:
Originally Posted by squirrel154 View Post
Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please

thank
Laura
Quincy,MI
Chiari 9.4mm
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Unread 07-19-2009, 10:33 AM   #20
cseegersdc
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Quote:
Originally Posted by momof4 View Post
Hi,

I am new here and have been searching for more information regarding recovery after surgery.

My story: I had mild headaches with an occasional "big" one for several years but in July '06 they blew up. They became intense daily with very severe headaches every couple weeks. The daily ha intensified to the point that I couldn't handle any noise, movement made it worse and of course light sensitivity increased. After several doctors treated me with no results I was referred to Diamond Headache in Chicago where I took loads of drugs but the headaches continued to worsen. I lost feeling in my fingertips, had increasing difficulty swallowing, the right side of my face sagged, daily toothaches, ringing in the ears, loss of balance, etc.

Against my Diamond's doctor's advice, I found a neurosurgeon that said that I had a "small" chiari and pulsating artery in my spinal cord that needed more room. (I may not be describing this in correct medical terms!) The surgeon is fabulous at surgery and I would recommend him in a heartbeat!

I woke up from surgery in February with a huge relief to my headaches. My struggle has been the recovery. My neck is so weak and I feel that I have come to a standstill. If I am up too long my neck will become sore and feel inflamed in the back to the point that I can't move it at all and it feels like my head will fall off. If I push it to far, I will get a headache although not nearly to the intensity that I had before. If I really overdo it, which means that I don't lay down 3-5 hours of the day and sit at my office desk for about 3-4 hours in the morning or try other activity, I may be totally flat in bed the next day in misery.

It has been just shy of 6 months since surgery and I am starting to wonder if something has gone wrong. The surgeon is caring and intensely intelligent but doesn't seem to like the follow up issues. The nurses will sometimes say that this is normal and sometimes will say that I should be doing better. I am not getting a clear answer. The dr finally authorized physical therapy but limited to only flexing my shoulderblades and stretching my chin in and out. (my chin doesn' go "in") He said no aerobic excersize or any other neck strengthening activities.

What do I do? The surgeon lives about 8 hours away and travel is difficult. He doesn't seem to think that I need to come back. I am longing to become stronger, both in body and neck and am starting to wonder if it will get better. I am healthy, just 39, average weight and no other health issues. I would love to hear your thoughts!

Thanks!
motherof4
What you are describing IS weakness of your upper core (head/neck stabilizers) You need to consult with a Chiari specialist at Mayo, where they have excellent and informed neurophysiotherapy and learn more so that your P.T. can have the ability to help you with in safe parameters. You need to be able to strengthen your whole core to be able to stabilize the weight of your head. This can be done with several exercises performed in "neutral spine" position. Look for a P.T. who has extensive Pilates rehabilitation training. You will get stronger! Your Neuro doc is a just that, they tend not to look outside the box, and the P.T, not knowing enough about your condition, is probably overly cautious and staying within the Neuro docs limited box!
Good Luck!
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