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Recovery after Chiari surgery

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Unread 07-30-2008, 09:01 PM   #1
momof4
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Default Recovery after Chiari surgery

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!
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Unread 07-31-2008, 03:46 PM   #2
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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.
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Unread 07-31-2008, 10:44 PM   #3
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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.
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Unread 08-15-2008, 10:54 AM   #4
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Default chiari surgery recovery

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!
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Unread 08-15-2008, 11:46 AM   #5
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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.
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Unread 08-16-2008, 06:11 PM   #6
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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...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....
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Unread 08-24-2008, 11:28 AM   #7
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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!
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.
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Unread 08-24-2008, 11:33 AM   #8
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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.
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Unread 09-16-2008, 03:30 PM   #9
AllChiariOut
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Default Just had my surgery - what is normal

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 !!!


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Originally Posted by hood21 View Post
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.
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Unread 09-22-2008, 06:42 PM   #10
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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.
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