Go Back   NeuroTalk Support Groups > Health Conditions A - L > Arnold Chiari Malformation & Syringomyelia

Recovery after Chiari surgery

Reply
Thread Tools Display Modes
Unread 02-27-2012, 09:35 PM   #81
missvickie
New Member
 
Join Date: Feb 2012
Location: Lima, Ohio
Posts: 3
Red face

Quote:
Originally Posted by momof4 View Post
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
missvickie is offline   Reply With Quote
Unread 05-03-2012, 09:12 AM   #82
JeffRN
New Member
 
Join Date: May 2012
Posts: 1
Default

Quote:
Originally Posted by missvickie View Post
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.
JeffRN is offline   Reply With Quote
Unread 05-04-2012, 08:10 PM   #83
sara052420
Junior Member
 
Join Date: Jan 2012
Location: Houston, TX
Posts: 15
Default

Quote:
Originally Posted by brainiac View Post
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?
sara052420 is offline   Reply With Quote
Unread 05-10-2012, 06:44 PM   #84
res5562965
Junior Member
 
Join Date: Jun 2011
Location: Georgia
Posts: 44
My Mood:
Default

Quote:
Originally Posted by kwiley View Post
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.
res5562965 is offline   Reply With Quote
Unread 07-02-2012, 02:38 AM   #85
miemie7
New Member
 
Join Date: Jul 2012
Posts: 1
Smirk 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 View Post
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
miemie7 is offline   Reply With Quote
Unread 09-05-2012, 07:50 PM   #86
Granit60
New Member
 
Join Date: Jul 2012
Posts: 2
Thumbs up

Quote:
Originally Posted by Casehead View Post
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.
Granit60 is offline   Reply With Quote
Unread 09-10-2012, 10:39 PM   #87
lchunter
New Member
 
Join Date: Sep 2012
Posts: 1
Default

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!
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?
lchunter is offline   Reply With Quote
Unread 10-10-2012, 04:24 PM   #88
hlwampler
Junior Member
 
Join Date: Sep 2012
Posts: 14
My Mood:
Default

Quote:
Originally Posted by lchunter View Post
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.
hlwampler is offline   Reply With Quote
Unread 10-18-2012, 02:10 PM   #89
tamibates65
New Member
 
Join Date: Oct 2012
Location: Gulf Coast, Mississippi
Posts: 2
Heart Syrinx.. was just diagnosed 2 wks ago

Quote:
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...
tamibates65 is offline   Reply With Quote
Unread 10-20-2012, 10:20 AM   #90
hlwampler
Junior Member
 
Join Date: Sep 2012
Posts: 14
My Mood:
Default

Quote:
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?
hlwampler is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Post-op Arnold Chiari Malformation surgery JoAnne Hobbs Arnold Chiari Malformation & Syringomyelia 13 03-06-2014 11:57 PM
TOS surgery recovery moneymaker8 Thoracic Outlet Syndrome 9 10-10-2013 09:42 AM
recovery from surgery LizaJane Spinal Disorders & Back Pain 40 03-17-2011 03:41 PM
After Surgery For Chiari Malformation COWPATTY Arnold Chiari Malformation & Syringomyelia 9 01-02-2011 09:01 PM
After Surgery For Chiari Malformation COWPATTY Social Chat 2 05-01-2008 11:10 PM


All times are GMT -5. The time now is 03:29 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives