Recovery after Chiari surgery

TJGIO · 11-29-2012, 12:33 AM

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!

monkld43 · 04-26-2013, 10:24 PM

Quote:

Originally Posted by babiigirl81104

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

My wife had surgery to correct her chiarI, her neurologist is treating her for migraines with topirmax and muscle readers for neck pain near her incision. Have u tried either of these methods?

Kaybarrows73 · 09-26-2013, 12:16 PM

Quote:

Originally Posted by 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!

Hi!
I just had this surgery September20,2013. The first night was impossible. I was in a lot of pain and nautious! I was released the next day after my surgeon came in and saw me. He said that I really needed this surgery. I have suffered for over 20 years with migraines and temporary paralysis. I couldn't hold a job for very long because the management and coworkers never understood. This year has been full of health issues starting with a heart attack but any way... I wasn't nervous or scared about the surgery. I actually was cracking jokes up until I was put under. The surgeon also advised me the incision was a lot bigger than he expected. He also told me my recovery will take longer than expected as well! I'm on day 6 and I'm pretty much confined to the couch. My symptoms are as follow; I can't sit,stand,read and watch tv for long periods of times because I become dizzy. I'm nautious 24/7 even with medication, I feel exhausted,sometimes I can't get comfortable,my hearing has become muffled,I can't feel the tip of my tongue,when I stand up on my left side of my scalp I feel like there are bugs crawling under my skin, I can't move my head from side to side or up and down,and last thing I can't hold the phone up to either ear because it hurts and echoes. I am waiting for the surgeon to call me back to see if all of these symptoms are normal. Back track here a little bit the reason why I wasn't nervous about the surgery is because my neurosurgeon is the best on the west coast and my doctor who found this malformation and pineal cysts two years ago already prepared me about the surgery.

well that's my story so far about my surgery! I don't know if it helps or not but just like everybody has said that each person is different... Lol now I can add cow (which is what replaced the part of my skull the dr removed) to my genealogy!!

Kay

ruralcarrier4x4 · 12-15-2013, 11:54 PM

I had surgery for my Arnold Chiari back in 2005 and it went well. One of the main reasons for me getting the surgery was because of the Syringomyelia inside my spinal cord and the surgery was a success. Then in 2007 I was diagnosed with Tethered Cord Syndrome and had to have surgery again for that where they broke my one vertebrae and then drill a hole through it and then disconnected my spinal cord from my tail bone. Again I felt immediate improvement after the surgery. I still have severe back pain and neck pain and can not work but the surgeries helped me. If anyone has questions send me a message with your questions and remember a good surgery is the result of a good surgeon.

Anna Sivill · 12-23-2013, 11:44 PM

I was diagnosed with Arnold Chiari Malformation when I was 12 years old in 1998 on a fluke...
My middle school conducted mandatory scoliosis screenings in gym class and of course I was one of the only students pulled aside to be told I had a severely crooked spine. I was so embarrassed to be one of the only kids with scoliosis (because middle-schoolers are so concerned about their social status, ha!), but I had no idea that this random discovery was saving me from years of pain and discomfort down the road. Since my spinal curve was so severe, my doctor suggested I have an MRI. From the screening they discovered I had severed spinal fluid build-up (from Arnold Chiari Malformation) which was causing my spine to curve.

My first decompression surgery went well. Recovery lasted only 3-weeks before I was back in school; I suppose children are pretty resilient. I never experienced any negative symptoms besides soreness, but during my six-month check-up with my neurosurgeon he discovered that my CSF had begun to build up again.

After my second decompression my surgeon was very concerned about the instability in my spine. Since a large portion of the spinal column (from c-2 to t-1) had been removed, I was told that my neck was very fragile and any rough act could result in me breaking my neck.

Therefore, my surgeon decided to perform a spinal fusion on the length of my spine that had been operated. I now have two metal rods, 20 screws, and bone grafts that have transformed my once flexible neck into one solid, stiff structure.

From the surgery my neck movement has decreased by over 50% (I can no longer look down and see my belly button), but I have gotten used to it. I am now 28 years old and still symptom-free.

I'm sure there were a lot more specific details concerning my operations, but I was young and didn't fully understand the scope of what I was dealing with.

I often wonder if I didn't have the spinal fusion to stabilize my neck if I would be having headaches and pain associated with the decompression surgery. Maybe the stabilization of a neck of severed muscles is solution to a pain-free recovery later in life. I don't know?

My suggestion to parents with children in middle school: Make sure your kids get screened for scoliosis!!!

songbird69 · 01-01-2014, 09:29 PM

Hi, I don,'t know you but I too had the decompression surgery and I know how you feel. I will be praying for you.

Quote:

Originally Posted by 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

lettly37@gmail.com · 01-31-2014, 11:40 AM

I will say I totally understand. I had my surgery Dec.4 2013. I had this for over 10 yr dealing with the head pain balance ,memory its a mess . now after surgery the only thing that changed was my walking got a lil better. I so understand ur pain with the neck . this is like nothing I could have inmagine. and u are right about these DRS its like OK I CUT U NOW IM DONE. AND I NOW CRY AT A DROP OF A DIME AND DONT NO Y.

Quote:

Originally Posted by 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

lettly37@gmail.com · 01-31-2014, 11:42 AM

HI. I have had this sugery on dec 4 . if I new wht I no now would have never done it

Quote:

Originally Posted by 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!

Raigne · 02-14-2014, 02:50 PM

I realize this is an older thread, but newer responses are here and I wanted to offer my experience.

I had the decompression surgery 10/04. I also have a syrinx in my cervical spinal cord that has done severe damage. I'm in pain mgmt for the rest of my life, but it's ok. I can deal with that.

When I was in the hospital after surgery it was all good. Then they sent me home. By my 2nd day home I was in tears because the pain was so bad. I went into the dr's office and he asked, "Are you taking all the meds we sent home? The pain meds and steroids?" Well, they forgot to send home steroids. We filled that script fast and within an HOUR after taking it, I felt like I was actually going to live. There was still post surgery pain - I mean, hey, it was freaking brain surgery and they removed a piece of my spine, but the steroid reducing that swelling was the life-saver.

Through my sharing on the 'net, I've discovered that sometimes dr's don't think to send home that steroid script. And when asked and it's given, people are getting relief.

I'm not saying that's the case for the majority of the posters here, your continuing pain, long past initial recovery is something entirely different. My other advice is to find a really good pain management clinic. I'm on a boatload of meds, but I also have 6 diseases. But for the Chiari/Syrinx, the mix that works for me is Hydrocodone, Zonegran (I can't take Gapapentin in any form whether it's Neurontin, LYrica, etc. because it makes me psychotic - a KNOWN side effect dr's don't tell you about til you're about to kill yourself), a muscle relaxer and if I hadn't had gastric bypass (weight loss surgery) I'd be taking an anti-inflammatory - that's a life saver to people with ACM 1 and/or Syrinx.

I hope all who've had the surgery can find relief both in the short and long term. It's hard enough to have had to suffer from these debilitating diseases for so long, but when the recovery goes on and on...it can be disheartening. It also did me a lot of good to find a great therapist to help me deal.

sam2012 · 03-06-2014, 04:17 AM

I suffer to Arnold Chiari Malformation and Hydrocephalus.

I would really appreciate it.

My last surgeries were last year Feb and May 2013.

Thank You,

Take care,

Samantha
South Africa

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