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Old 03-24-2010, 02:03 PM #1
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Originally Posted by bovinebrainy View Post
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....
Having a simular problem. I am having the pain in the back of my head where they did the surg. and am not thinking clearly. Getting really worried, but don't go due to fearing another surg. Had the surg in Oct. of 2009. How long did it take you to recover...or do you still have pain in your head..I don't call them headaches anymore..it's my brain hurts..
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Old 03-24-2010, 05:19 PM #2
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These surgeonns are WAY to quick to grab a knife and start slicing up our heads,, if you can get away without surgery, PLEASE DO IT,, it works for some people,, but alot of us suffer a lifetime with more problems then what we started out with
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Old 08-24-2008, 11:28 AM #3
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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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Old 08-24-2008, 11:33 AM #4
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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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Old 09-16-2008, 03:30 PM #5
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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 !!!


Quote:
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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Old 09-22-2008, 06:42 PM #6
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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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Old 05-12-2009, 12:15 AM #7
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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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Old 03-15-2010, 10:56 PM #8
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Default Chiari Malformation Surgery. Help

Hi, I am 20 years old, and had the chiari malformation surgery Nov. 11, 2009. I have yet to return to work due to severe headaches. I have been put on a headache preventative, but it hasn't helped me. I have had an mri done in Ja, and my doctor said everything looked great, but i still almost feel the same as I did before the surgery. Does anyone else have that problem? I hope someone can help me out, due to still not working and its been 4 months and still feel like crap. The pressure and everything is back, right by my incision area, where the headaches were before. I would appriciate any help. Thank you. ~Stephanie
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Old 03-25-2010, 06:48 PM #9
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I am new just having my Chiari type 2 Malformation surgery March 4th 2010. We knew there'd be side effects like nerve bruising but besides no feeling in my good leg i have no sensation in kidneys or bowels. Im also hoping to get a positive thing on this surgery
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Old 06-30-2011, 09:21 AM #10
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I have recently been diagnosed with Chiari. I am a 50 yr old female that started having severe headaches to the point where I have been unable to work on some days. I am scheduled to see the neurosurgeon tomorrow and I'm a little anxious. I am not afraid of having the surgery, I'm just not looking forward to the recovery. I was diagnosed with rheumatoid arthritis 12 years ago and some of the issues I have been dealing with I now learn are symptoms of the Chiari and not the RA. For that reason, I am excited about having the surgery done.
I am curious as to how large an incision has to be made and how long I will have to be off work. I know I can get these questions answered by the doctor, but sometimes they don't tell you everything. I am reading the posts on here and that has been very helpful. I want to thank everyone who has contributed information through their posts. I plan to also contribute as I travel through my journey to a better life. That's what this surgery means to me, and I hope I don't learn otherwise, is a better life for me, my husband, my children and my grandchildren as I work toward being more able to enjoy time with them.
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