Recovery after Chiari surgery

[momof4]

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

[razzle51]

yu always need to go back . especially after surgery . and then a MRI every year . I would highly suggest you make the trip to see him.

[momof4]

yu always need to go back . especially after surgery . and then a MRI every year . I would highly suggest you make the trip to see him.

Thanks for your reply. My struggle is that he doesn't seem to think that I need to go back, so if I do will he think I am crazy? Do you know if it is normal to be this weak? Should I still need to lay down several hours a day? Am I just being impatient? I appreciate your advice. :)

[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!

[razzle51]

Like I said you need to get into see him . You are paying him. Dont worry about what he thinks . This is your life.
I think I responded to your post on another board .

I had surgery in 1999 . It stopped the headaches completly . I still deal with Syrinx . With some adjustment to meds and no PT . I cant imagine why drs tell there patients to go to PT. I am doing quite well . Little B12 for energy also B6 helps too . I basically did my PT per my way at home , slow moving exercies to get the neck unstiff from surgery . didnt drive for about 6 weeks .
Seriously think about seeing the dr. or go to your PCP and tell him or her whats going on. you need to get up and move.

[bovinebrainy]

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...I understand your anxiety about this condition and the aftermath of surgery. I am 42 and had a decompression with a laminectomy, craniotomy with duraplasty in 2001, when I was when I was 35.
I think that recovery is different for everyone who has this condition and has the surgery...because the symptoms vary so much from one person to another. It took me several months before I gained strength, and I had terible pain and soreness in my neck and shoulders. Physical Therapy can help if you have a good neuro-PT who will focus on slow strengthening of the muscles that support your spine.
Your head is like a bowling ball, and when you have your neck muscles cut, it severely weakens your ability to hold that bowling ball up. The frustration comes with the lack of professional knowledge about this in the medical field.
IT is very difficult to find a neurologist who really understands the full scope of what we go through.The neurosurgeon is pretty much done with you once he does the surgery and sees you for your post-op visits. Then you have to find a neurologist who can monitor and treat your symptoms.
Find a neurologist to see...bring your records, surgical notes, etc. and explain your symptoms. Try the WACMA site for a list of dr. names.

It is a frustrating battle with the added twist of sometimes looking pretty healthy...therefore people think you are fine and can't understand what the problem is. Don't give up...keep going back til they do something for you. You may always have side effects and symptoms... arm yourslef with knowledge and get as much info as you can.
Best of luck....

[hood21]

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 had my decompression surgery on July 23, 2008. My recovery has been OK. I was up and walking 3 hours after I got out of recovery and was home 2 days after. I have done as I was asked by the Docter. Taking it easy and not overdoing it. I ended up with a small infection at the bottom of my scar 2 weeks later. Small amounts of drainage and medication I was doing ok until last Tuesday. I had a large amount of drainage and called my surgeon, he advised me to be checked out in the ER at our local hospital (He is 3 hrs away) It was found that I had CSF leakage and was transported to the hospital where I had the surgery. It seems my body doesn't like the under stitches and rejected every one of them. He restiched it with hopes of not having to put in a drain. I am home as of yesterday and I have the upmost confidence that all will end well. Recovery can be tricky and just getting to this point has been a long journey for me and my family. Many things can effect the out come. Good thing is the Migraines are gone and the Vertigo so as far as I am concerned the sugery was a success and I will get through this little ruff patch.

[razzle51]

I had surgery in 1999. did quite well , in hospital 3-4 days , home and rested for 6 weeks . buit went back for post op and removal of stitches 10 days after surgery . then in a year had a MRI to check things and now have MRI every 2 years . you really need to get checked out.

[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 !!!


I just had my decompression surgery on July 23, 2008. My recovery has been OK. I was up and walking 3 hours after I got out of recovery and was home 2 days after. I have done as I was asked by the Docter. Taking it easy and not overdoing it. I ended up with a small infection at the bottom of my scar 2 weeks later. Small amounts of drainage and medication I was doing ok until last Tuesday. I had a large amount of drainage and called my surgeon, he advised me to be checked out in the ER at our local hospital (He is 3 hrs away) It was found that I had CSF leakage and was transported to the hospital where I had the surgery. It seems my body doesn't like the under stitches and rejected every one of them. He restiched it with hopes of not having to put in a drain. I am home as of yesterday and I have the upmost confidence that all will end well. Recovery can be tricky and just getting to this point has been a long journey for me and my family. Many things can effect the out come. Good thing is the Migraines are gone and the Vertigo so as far as I am concerned the sugery was a success and I will get through this little ruff patch.

[hood21]

.:grouphug::grouphug::grouphug::grouphug:
The numdness on the side of your head is normal. My surgeon said that a main nerve has to be cut through to get to where they need to do the work , so tha tis normal. As far as tring to be a wife, mother, and employee....You need to become the child for a while and let others do your duties. My husband was home with me for 3 weeks after and stayed with me the 4 days I was readmitted. Do not over do it, you will only risk your heling or possibly worse. Vertigo was one of my symptoms and after the surgery I had a little trouble with the dizziness for a few weeks and it got better. I am symtom free of that anf only minor headaches and I think that is from the nerve coming back in my head.
Please for your health take it easy. I would get my boys off to school and sleep for the next 5 hours. I had times where sleep was impossible to do, ask your Doc for somethng to help. Do a little more each day and rest when you need to. Enlist your children. Mine are 8 & 10 My husband is in the military and works 5 hours away and home on weekends. When he went back, my boys helped alot. Weight limit was 5pds. Gallon of milk is 8......they would get my laundry to the basement I would wash and dry it and they would haul it up stairs when they got home to get folded and then they would take baskets up for us to put away. If they are old enough to learn to cook, heres a good chance to get them started. They can help boil water and help you get things off the stove and out of the oven.
If they are into sports use parents and coaches to help get them to and from practice. I do not live near or on a military facility, but I did have alot of help and offers to help during my recovery from Friends, neighbors and my husbands military buddies. Don't be proud, Your recovery is the most important.
I live in Pa and will offer any advice I can, but you make that Docter know your concerns and don't let him leave without the answers you need.

[mother&wife]

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

[typicalfam]

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

[Bethanne1012]

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.

[punkies187]

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]

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

[punkies187]

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.

[betty21]

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

[squirrel154]

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


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

[hood21]

:grouphug: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.
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

[cseegersdc]

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!

[razzle51]

Mayo is not the place to go . They turn away people with Chiari . They are still in a study phase of learnign chiari . so that place is a big no no.

[Cindy Miller]

There are some similarities in your case and mine. My Chiari symptoms also "blew up" in July 06'. My surgeries (I had 3--decompression, one month later my surgeon went back in to repair a dural tear, another month later I had shunt surgery because of hydrocephalus) took place in March-May 07'. It was a year before I felt semi-normal and I still have a very weak neck. If I overdue it (lifting, bending over a lot, etc.) I'll get headaches again similar to the pre-surgery headaches, just not as intense. It's frustrating as I like to be busy and don't like depending on my husband to do all the lifting, etc. I can tell you that your neurosurgeon is not the person to talk to and you have to find the right neurologist-my first one wasn't helpful at all. I have recently gone back to physical therapy only because I had a bad flare up with headaches and neck pain. I found an excellent PT who has been better at reading my MRI's and explaining things than any doctor. He has been a PT for 21 years-experience is important! I have a syrinx (post-surgical) in the top of my spinal cord but I've gone from lots of numbness in hands, feet and legs to almost no symptoms at all & the syrinx has diminished in size, much to my neurosurgeon's surprise. If you don't already have one, get a neck brace to give you some support when you are doing anything that puts a strain on your neck. I hate putting that thing on but have to admit it helps! Sometimes the only thing that helps is laying down for awhile. I've also found that Celebrex, taken once a day helps me when my neck is bad. I can't imagine being a young mother and dealing with all of this!

[melfisher]

Hi I figured I would share my story and see if anyone could help me. I was diagnosed in Feb of 07' and I got decompression surgery on July 9, 2007. When I woke up I felt so relieved to not have a headache and not have the tingling I was experiencing. I even had this rash that magically disappeared from the surgery. I recovered in about a month and was back to work and everything. I felt fine for about eight months after surgery, but then I started getting bad headaches again and experiencing other symptoms such as tingling, numbness, throwing up, nausea, chronic pain and the rash came back. I got a cat scan done on my neck and it said my lymph nodes were enlarged so the doctors thought I could have lymphoma so I got surgery to get the lymph node biopsied, but everything came back normal. I have gotten numerous blood tests done and have seen numerous doctors, but none of them seem to help me or want to help. The neurologist I am seeing right now does not believe in sending me to get another mri done even though it has been a year and a half since my last one. I feel the same as I felt before I got decompression surgery and it seems to be getting worse each and every day. Could the Chiari have come back? Any advice or similar stories? If anything like this has happened to any of you please tell me what you did about it. I could use all the help I can get. Thank you so much!

[Casehead]

This thread is old but I know that people will pull it up on a search engine and come looking for it, so I thought that I'd throw in my two cents.

I had decompression surgery with a c1 laminectomy and duraplasty almost one year ago to the day, on October 17th 2008, after ten years of symptom progression. My surgery went well, I was home within 3 days, but the week after the surgery my incision started leaking CSF. They tried restitching the outside twice, but it would always start leaking again, so on October 31st I reentered the hospital to have a lumbar CSF drain put in to drain csf and lower the pressure so that my incision could heal shut. It was very unpleasant, to say the least. Then, after the drain was removed, I had horrible Chiari like headaches, and it turned out my spine was still leaking from the hole the drain left. I then had to go in for a blood patch, where they inject blood into your spinal canal and it clots and plugs the hole. Unfortunately the first one failed and it was January before they could stop the leaking. I was also told the lumbar drain left a crapload of scar tissue in my spinal canal. I also then found that I had a fluid filled bump in the back of my head which turned out to be a dural patch leak, but luckily it resolved on its own over several months.

Since then, I've been trying to get back to normal, but recovery is different for everyone, especially those who have complications. No one should expect a seamless super fast recovery. The truth is, the surgery does not really FIX you. It just stops you from having further progression of damage to your nervous system. Very often some symptoms will remain, and others will come and go over the rest of your life. Some people develop what they call
psuedotumor cerebri, which is basically just a fancy way of saying that you have the symptoms of a brain tumor without actually having a brain tumor. And then there are the lucky ones who magically are 100% better after the surgery, but these are usually people who did not have a lot of damage caused prior to the surgery. As I had symptoms for ten years leading up to my final diagnosis, I had a lot of time to incur permanent damage, and that damage doesn't all reverse itself.

Most of all people need to understand that fact: what's done is done, and some things just won't ever go away. I still have pain and a constant headache, discomfort, fatigue, etc. I am in pain management for the pain and use a duragesic 75mcg patch, and 4 10/325 percocet a day for breakthrough pain, sometimes more, sometimes less.

But don't forget what you do have: if you have symptomatic Chiari malformation, there's a good likelihood that without surgery you WILL become partially paralyzed, and often once that starts, once again, what's done is done. And those of you that are dealing with life after surgery, remember that. You're one of the lucky ones. No matter how hard (and painful) it can be, you will not have to live out your life in a wheelchair, and that is a gift.

To all you "zipperheads" out there, keep on fighting the good fight. Don't give up on yourself. Don't let despair ruin what you have left. Some of us will never be "recovered", but we have this life and we still need to make the most of it. And that means coming to terms with your limitations and working with them.

Good luck to you all.

[hood21]

I myself had similar complications, but was lucky enough that the restiching worked. but I did remember them talking about the drainage tube, while I was trying to overcome the experience of being stitched in my bed. I would be one of those lucky ones that had minimal damage and all my headaches have become completely non exsistent. I have some weaknes on my left side of my neck, but I am dealing with that. Most would not understand that after 10 years of migraines that being able to say "God, it is nice to have a normal headache." is one of the most wonderful things in my life.
I hope you all have luck with your extended recoveries, I know you all wish it would have fixed it all, but nothing is perfect. Be happy you are alive and can see your loving friends and families.

[brainiac]

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.

[brainiac]

Has anyone thought of or know of anyone that has attempted to hold their Doctor responsible for their actions,muyltiple surgeries etc.

[Sanna]

I had the decompression surgery done three years ago, and am now totally symptom free.
I was very lucky, no permanent damage had done due to the chiari. When it comes to the recovery it took about 1 month for most of the stiffness in the neck to go away and another two to work out the rest of the stiffness and pain with PT. I've written most of my story down, from diagnosis to recovery, but unfortunately I don't have enough posts to allow me to post links just yet. But I will as soon as I've paid my dues ;)