Recovery after Chiari surgery

hlwampler · 10-10-2012, 04:24 PM

Quote:

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?

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.

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

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.

mother&wife · 11-13-2008, 11:17 PM

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

Hello, I had surgery my on Sept. 2008 and thank god the surgery had a good outcome. It been 2 months since my surgery and I'm still getting the dizziness,coordination,balance and the headache I get after are extremely bad. My neck and shoulders still bother me, my surgeon tell me that because he had to cut muscles from the neck. When I tell my surgeon about what I'm feeling. All he can tell me it will take time and it might take up to a year before I start feeling better. I'm still on alot of medication and don't seem to help. I'm also taking physical therapy I'm being told that should help me, so let see what happen. Just when i thought things couldn't get any better, I find out I'm pregnant. This should be a happy time for me but I'm scare to go through this pregnancy because then I will taking off all of my medication. I can't imagine going through the pregnancy with chiari. And on top of this I can't go back to work yet. What a girl to do?

Thanks,
mother&wife

typicalfam · 11-30-2008, 02:02 AM

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

Hope this helps: I, too, have four children and I feel for you. After two years of frustration after a " failed" Chiari surgery, the best thing I did for myself was to fins a massage therapist... One with extensive training in our conditions. I wished SO MUCH that I began this right away following my surgery because my muscles were so tight and locked in place that it took her a long time to re-train them to relax. Living in WI before didn't help.. The cold ABSOLUTELY KILLED ME!! Hope this helps!! There will be a ASAP conference in Madison, WI in July.. PLEASE.. LOOK INTO IT.. It'll be INVALUABLE!!! see ASAP site!! Lauri

Bethanne1012 · 12-04-2008, 08:18 AM

I am sorry to hear that you are not doing better. I recently had my decompression done on 11/10/2008 and even though I am still just shy of a month after surgery I am doing a lot better. I have found these sites that might be helpful to you. Type in Chip's Chiari Page in your search engine. This page has helped me a lot and they also have a support group. Try also typing in Chiari Malformation Institute in your search engine too. They are a hospital in New York that does ONLY Chiari Malformation procedures and may be able to help you. I don't know where you are located, but it's worth a shot maybe just to get some answers. Maybe your doctor just had not done enough of these procedures too and cannot help you. Have you tried searching for a surgeon in your area that is top notch in this field or has done quite a lot of them? I didn't know that my town even had a support group until I looked and found quite a lot of people who have had this done. I thought I was very much alone in my journey until I started searching. Now, I don't know what the months ahead have in store for me, but I am going to keep the faith that I WILL get better each and every day, even though sometimes I think I will not. I have to as I have two beautiful children that need me. I wish you luck on your journey and if you have anymore questions or anything please don't hesitate to contact me.

squirrel154 · 05-20-2009, 08:06 PM

Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please

thank
Laura
Quincy,MI
Chiari 9.4mm

Quote:

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

hood21 · 05-22-2009, 06:30 PM

There is a web site called "WACMA" The World Arnold Chiari Association********Click on onsite info and there is a listing for doctors and you can search by state. It looks like there is only one in your state, but if you are willing to travel you can go to another state. Good luck.

Quote:

Originally Posted by squirrel154

Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please

thank
Laura
Quincy,MI
Chiari 9.4mm

cseegersdc · 07-19-2009, 10:33 AM

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

What you are describing IS weakness of your upper core (head/neck stabilizers) You need to consult with a Chiari specialist at Mayo, where they have excellent and informed neurophysiotherapy and learn more so that your P.T. can have the ability to help you with in safe parameters. You need to be able to strengthen your whole core to be able to stabilize the weight of your head. This can be done with several exercises performed in "neutral spine" position. Look for a P.T. who has extensive Pilates rehabilitation training. You will get stronger! Your Neuro doc is a just that, they tend not to look outside the box, and the P.T, not knowing enough about your condition, is probably overly cautious and staying within the Neuro docs limited box!
Good Luck!

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