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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
razzle51
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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 01-05-2012, 12:42 PM   #4
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Originally Posted by momof4 View Post
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.
I had Surgery in August 2010 for Chiari. It is normal for your neck to be weak, I had to rest mine as well. If the surgeon deosn't think he can do anything he should refer you to a physical therapist or someone who can help. When it comes to your health, who cares if you keep asking questions you HAVE to.
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Unread 10-18-2012, 02:10 PM   #5
tamibates65
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Heart Syrinx.. was just diagnosed 2 wks ago

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Originally Posted by razzle51 View Post
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.
I am new to this site and have just been diagnosed with syrinx from my orthopeic surgeon, I have to see a neuro surgeon next week. I have been suffering for years with severe headaches and other problems with my hands and chest pains, among other things.. I am afraid. I do not know if I have chiari. But let me say before the Orthopeic dr diagnosed me I was in the hospital because of the head aches and vomiting. and that is when they did the mri, But no one of those dr.s told me about this at all. I even seen a neurologist in the hospital and no word of this Syrinx at all... And it was the first time, that I had seen this orthopedic Dr. I was there over 21/2 hours and was wondering why, well now I know it was because he was studying the MRI and the results..and he came in the room and told me I had Syrinx from c1 to c4... I am so axious over this that I cannot sleep.... and I am on pain meds which are helping the headaches a little and neausea meds.. but still symptoms are there.. and not the anxiety of it all it horrible... please does anyone know that if I have this Syrinx from c1 to c4 does this mean that I have the chiari also... Please and Thank you all for listening to my ranting...
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Unread 10-20-2012, 10:20 AM   #6
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Originally Posted by tamibates65 View Post
I am new to this site and have just been diagnosed with syrinx from my orthopeic surgeon, I have to see a neuro surgeon next week. I have been suffering for years with severe headaches and other problems with my hands and chest pains, among other things.. I am afraid. I do not know if I have chiari. But let me say before the Orthopeic dr diagnosed me I was in the hospital because of the head aches and vomiting. and that is when they did the mri, But no one of those dr.s told me about this at all. I even seen a neurologist in the hospital and no word of this Syrinx at all... And it was the first time, that I had seen this orthopedic Dr. I was there over 21/2 hours and was wondering why, well now I know it was because he was studying the MRI and the results..and he came in the room and told me I had Syrinx from c1 to c4... I am so axious over this that I cannot sleep.... and I am on pain meds which are helping the headaches a little and neausea meds.. but still symptoms are there.. and not the anxiety of it all it horrible... please does anyone know that if I have this Syrinx from c1 to c4 does this mean that I have the chiari also... Please and Thank you all for listening to my ranting...
No, that doesn't automatically mean you have Chiari.

Chiari is when brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

Did the doctors tell you if your cerebellar tonsils are protruding and if so by how much?
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Unread 11-29-2012, 12:33 AM   #7
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i am 17 years old and in August of 2012 i had been diagnosed with chiari malformation. i have a syrinx at the top of my spinal cord and another one right about a herniated disc that i have in the t-12 region....... my symptoms include extremly bad headaches, neck pains, shooting pains down my spine, and numbness to the point of brief paralysis in my legs..... i met with an amazing neurosuregon at New York Presbyterian Hostpial in the Cornell Weil College...... my decompression surgery is set for Decemeber 19th 2012..... just 20 days away...... my nerves are through the roof and im praying i dont have a bad experience with recovery......... after all i am 17 years old and all i want is to be able to live my life normally again because my symptoms have taken me out of work and leave me home from school plenty of days......bottom line is my life is no longer the same....

Does anyone have any tips for me of what i should do before or after surgery to help with my recovery and procedure? im still so young and am extremely nervous for this whole scenario!!! PLEASE HELP!
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Unread 08-15-2008, 10:54 AM   #8
momof4
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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   #9
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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   #10
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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...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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