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

Originally Posted by missvickie

I go for Chiari surgery soon.I hope mine is not a nightmare.Go Get a second oppinion at OSU Medical Center in Columbus

Originally Posted by brainiac

Has anyone thought of or know of anyone that has attempted to hold their Doctor responsible for their actions,muyltiple surgeries etc.

Originally Posted by kwiley

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

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

Originally Posted by Casehead

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.

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!

Originally Posted by lchunter

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?

Originally Posted by razzle51

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.

Originally Posted by tamibates65

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...