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-   Arnold Chiari Malformation & Syringomyelia (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/)
-   -   Recovery after Chiari surgery (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/51089-recovery-chiari-surgery.html)

missvickie 02-27-2012 09:35 PM
Quote:
Originally Posted by momof4 (Post 335817)
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
I go for Chiari surgery soon.I hope mine is not a nightmare.Go Get a second oppinion at OSU Medical Center in Columbus

JeffRN 05-03-2012 09:12 AM
Quote:
Originally Posted by missvickie (Post 856191)
I go for Chiari surgery soon.I hope mine is not a nightmare.Go Get a second oppinion at OSU Medical Center in Columbus
I was reading through the posts on this site and had to reply. I am also looking for some information about post op recovery. My brother had decompression surgery last Thursday for Chiari Malformation and was doing great for 3 days post surgery then started leaking spinal fluid from the incision site at the base of his skull. He went back to the hospital and has so many procedures done since the surgery. Dermabond over the incision, spinal tap to aspirate 80cc's of spinal fluid that has built up at the back of his neck that looked like a ball. Second surgery to re-open the initial incision and did something else, still trying to find out what that was. Had a lumbar drain inserted and on the second day it was accidentally pulled out.

Today he is scheduled to go back in at 2:00 to reinsert the lumbar drain. I'm concerned because the surgeon isn't saying much other than we'll do this and that but no reason why it keeps leaking. I don't know how much of this my brother can take. The headaches are terrible and he is in so much pain.

Any information ANYONE can provide would be greatly appreciated.

sara052420 05-04-2012 08:10 PM
Quote:
Originally Posted by brainiac (Post 579850)
Has anyone thought of or know of anyone that has attempted to hold their Doctor responsible for their actions,muyltiple surgeries etc.
We have thought about it. My boyfriends surgeon didn't properly keep him sedated during recovery so he was AWAKE while he was intebated. he remembers everything then they wouldn't give him pain medication until 3 days AFTER his surgery. i'm not sure which event caused this next part but i do think that them not properly keeping him medicated caused this.. i think it was coming off the anesthesia, not giving him a nicotine patch, or a soda. which i warned them about this also.. that he smokes cigarettes & drinks many sodas a day and they didn't even ask him to stop either before or did they take precautions during or after surgery. anyways he ended up getting angry & punching his doctor bc he couldn't talk and was in pain and didn't know how else to express himself. I also warned them about his anger. Noone listens to the girlfriend.. even though we have been together almost 5 years and are having a baby. anyways. we thought about holding the doctor accountable for all the negligence but ended up not because we just werent sure how it would go. Anyone else had NIGHTMARE experiences with doctors? what did yall do?

res5562965 05-10-2012 06:44 PM
Quote:
Originally Posted by kwiley (Post 841410)
Hello All,
I recently had a Chiari I decompression surgery on Dec. 9th 2011 by a well respected and liked surgeon. In fact he has actually done 2 neck fusion on me prior to this. However, since Dec. 9th I have had to go back in to surgery 6 times due to CSF leaks. In fact I think I may be leaking again and I just got out of the hospital 2 days ago. My headaches now are so intense and unbearable. I have uncontrolled vomiting that doesn't help the headaches. I am so tired of going back to the hospital for more surgeries. I was told that my dura is quite thin and its having a hard time keeping a seal with the dura patch. It has only been a month and it scares me that I have been cut open 6 times. I have pretty much laid flat for over a month and the rest of my body is feeling the pain from that. I wish I hadn't had this surgery but the symptoms I experienced prior were pretty bad too. Does anyone have any suggestions of what could possibly be done different so that I can avoid more surgeries. I am terrified off infection, there has to be a way to fix this. Thanks
I would request a MRI that studies the flow of CSF (different than a regular MRI) I had so much CSF that was not able to flow out of my head which was the worst pain of all and the beginning of finally getting a Chiari diagnosis. I had to have a shunt put in prior to Chiari Decompression Surgery. The shunt will have to stay in forever because the aquaducts are so small and do not allow the normal flow of CSF. The chiari surgery just relieves the herniated brain at the base of your skull. That makes me wonder if all the leaks are due to an enormous amount of CSF building up inside of the brain, which was my problem. That is called Arnold's Chiari and that's what I have along with the Chiari I malformation. Hope this helps.

miemie7 07-02-2012 02:38 AM
recovering
 
Hi
I just had the same surgery 4 Weeks ago and have the same exact symptoms. The only thing different is the pains in my head have shifted from.the back of the head to the top and from t of the skull. The pain in my neck causes for many sleepless nights. has anyone felt a shift in the pain after surgery?

Quote:
Originally Posted by momof4 (Post 335817)
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

Granit60 09-05-2012 07:50 PM
Quote:
Originally Posted by Casehead (Post 578261)
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.
I had surgery on July 20 2012. I have an awesome surgeon my husband and 2 of our kids went to this appointment with me. They had questions that I had never thought of so between their questions and mine I feel he informed me very well on what to expect and he has not failed to call me each Friday to check on me yes the recovery is rough , I have had more problems dealing with the fact just because I feel so much better I still cannot do a lot I want to do, but considering I was going deaf, and have some minor in mobility issues I will try to be patient with myself and be thankful for what relief I have gotten from the surgery. He to told me to expect about 6 to 9 months before I would feel anywhere near normal also added that for people with this condition that we are not normal it is just a matter if trying to get to a point where the damage is limited and we can reach a point we can cope.

lchunter 09-10-2012 10:39 PM
Quote:
Originally Posted by momof4 (Post 347374)
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 was diagnosed in Feb. of this year. Had decompression surgery in July.
It's September and I am having the worst headaches I have ever had prior to the surgery. The numbness and to going is gone, but my insomnia has gotten worse and ringing in my left ear.Ice Packs, percoet and Valium and being horizontal all day.
I had an MRI today, no results.
I am frustrated and seems that no one understands this condition. Does it EVERgo away?

hlwampler 10-10-2012 04:24 PM
Quote:
Originally Posted by lchunter (Post 913477)
I was diagnosed in Feb. of this year. Had decompression surgery in July.
It's September and I am having the worst headaches I have ever had prior to the surgery. The numbness and to going is gone, but my insomnia has gotten worse and ringing in my left ear.Ice Packs, percoet and Valium and being horizontal all day.
I had an MRI today, no results.
I am frustrated and seems that no one understands this condition. Does it EVERgo away?
From what my NS told me it never goes away. It's managed. The surgery is supposed to really help, and it did help me for a while. I did a little more than I was supposed to in the early part of my recovery, and I'm having issues now.

As hard as it is...you're going to just have to wait for the results. I know how hard it is. I had to wait almost a week for my initial results and it felt like forever.

If the pain and what not is getting worse, I'd either call the doc or head for the ER.

tamibates65 10-18-2012 02:10 PM
Syrinx.. was just diagnosed 2 wks ago
 
Quote:
Originally Posted by razzle51 (Post 336288)
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...

hlwampler 10-20-2012 10:20 AM
Quote:
Originally Posted by tamibates65 (Post 923764)
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?

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
headaches
 
Quote:
Originally Posted by babiigirl81104 (Post 633069)
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 (Post 347374)
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.:grouphug: 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
Surgery
 
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
Successful Surgery
 
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
I'm new here too
 
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 (Post 335817)
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
Hello.
 
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 (Post 335817)
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
Hello
 
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 (Post 347374)
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
Please help me! I dont know how to join the Groups.
 
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

NicoleM10 06-19-2015 03:01 PM
Quote:
Originally Posted by momof4 (Post 335817)
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
Motherof4,

I am basically in the same exact shoes as you. I'm 6 months post op. I am 27 years old and other than corrective (unrelated) heart surgery at age 2 I am in normal health. I had my surgery December 10th, woke up the night after surgery feeling amazing. the day after I left the hospital I went Christmas shopping. I went back to work January 19th cause I felt that great. March rolled around and EVERYTHING came back. Headaches, dizziness, lightheadedness, ringing ears, temporary hearing loss and now neck head and shoulder pains. I actually have pins and needles and burning sensations in my left shoulder on a daily basis. My incision is still soar to the touch and so is my neck. I did an MRI for my 3 month follow up and even though everything looked great I told my doc that I feel horrible. My neurosurgeon referred me to pain management. Pain management referred me to a new neurologist. Both gave me prescriptions that were just a complete waste of time (Gabopentin, Trokendi and Zomiltriptan). . FINALLY my neurosurgeon's office decided it's time to come in for another visit... I hope you find something that works for you. And although I wish you well, it's a relief to hear that someone is experiencing something similar to me and that I am not just going crazy. If you know of anything that can help please reply. I will do the same!


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