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Recovery after Chiari surgery

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Unread 07-19-2009, 12:46 PM   #21
razzle51
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Mayo is not the place to go . They turn away people with Chiari . They are still in a study phase of learnign chiari . so that place is a big no no.
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Unread 07-26-2009, 03:54 PM   #22
Cindy Miller
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There are some similarities in your case and mine. My Chiari symptoms also "blew up" in July 06'. My surgeries (I had 3--decompression, one month later my surgeon went back in to repair a dural tear, another month later I had shunt surgery because of hydrocephalus) took place in March-May 07'. It was a year before I felt semi-normal and I still have a very weak neck. If I overdue it (lifting, bending over a lot, etc.) I'll get headaches again similar to the pre-surgery headaches, just not as intense. It's frustrating as I like to be busy and don't like depending on my husband to do all the lifting, etc. I can tell you that your neurosurgeon is not the person to talk to and you have to find the right neurologist-my first one wasn't helpful at all. I have recently gone back to physical therapy only because I had a bad flare up with headaches and neck pain. I found an excellent PT who has been better at reading my MRI's and explaining things than any doctor. He has been a PT for 21 years-experience is important! I have a syrinx (post-surgical) in the top of my spinal cord but I've gone from lots of numbness in hands, feet and legs to almost no symptoms at all & the syrinx has diminished in size, much to my neurosurgeon's surprise. If you don't already have one, get a neck brace to give you some support when you are doing anything that puts a strain on your neck. I hate putting that thing on but have to admit it helps! Sometimes the only thing that helps is laying down for awhile. I've also found that Celebrex, taken once a day helps me when my neck is bad. I can't imagine being a young mother and dealing with all of this!
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Unread 08-05-2009, 01:19 PM   #23
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Hi I figured I would share my story and see if anyone could help me. I was diagnosed in Feb of 07' and I got decompression surgery on July 9, 2007. When I woke up I felt so relieved to not have a headache and not have the tingling I was experiencing. I even had this rash that magically disappeared from the surgery. I recovered in about a month and was back to work and everything. I felt fine for about eight months after surgery, but then I started getting bad headaches again and experiencing other symptoms such as tingling, numbness, throwing up, nausea, chronic pain and the rash came back. I got a cat scan done on my neck and it said my lymph nodes were enlarged so the doctors thought I could have lymphoma so I got surgery to get the lymph node biopsied, but everything came back normal. I have gotten numerous blood tests done and have seen numerous doctors, but none of them seem to help me or want to help. The neurologist I am seeing right now does not believe in sending me to get another mri done even though it has been a year and a half since my last one. I feel the same as I felt before I got decompression surgery and it seems to be getting worse each and every day. Could the Chiari have come back? Any advice or similar stories? If anything like this has happened to any of you please tell me what you did about it. I could use all the help I can get. Thank you so much!
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Unread 10-14-2009, 04:10 PM   #24
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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.
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Unread 10-15-2009, 02:41 PM   #25
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I myself had similar complications, but was lucky enough that the restiching worked. but I did remember them talking about the drainage tube, while I was trying to overcome the experience of being stitched in my bed. I would be one of those lucky ones that had minimal damage and all my headaches have become completely non exsistent. I have some weaknes on my left side of my neck, but I am dealing with that. Most would not understand that after 10 years of migraines that being able to say "God, it is nice to have a normal headache." is one of the most wonderful things in my life.
I hope you all have luck with your extended recoveries, I know you all wish it would have fixed it all, but nothing is perfect. Be happy you are alive and can see your loving friends and families.
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Unread 10-18-2009, 08:11 PM   #26
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Originally Posted by AllChiariOut View Post
Hi there, I also had my Fourth surgery in August
it has been a very rough road, as far as the recovery everyone is different,I'm having the exact same symptoms you are having, with the exception of every other day I develop a bad headache, I'm thinking of trying Acupunture because the pain Meds are horriffic, please take it easy the symptoms only get wosre if you don't take it easy. I read and agree with one of the other members the Surgeons are pretty much done with you after Post Op follow up, so it's up to you stay on them, I've been off work now for 7 months and from March up to now I've had three surgeries, I hope you the best I'll let you now how it goes with the alternative pain relief.

Living this whole thing has been nothing more than a nightmare to say the least. How are we expected to still be mothers, wives and employees when we can barely take care of ourselves ? I have so many questions and the surgeons office doesn't really have answers.... I had my surgery Sept 3,2008 and my head still at times feels fuzzy like before the surgery. Is that because the swelling inside is still slowing down the spinal fluid? Dis you have any of that. ? Is it normal for your scalp on one side to be numb-like, is it normal when you try to tilt your head toward your left or right shoulder that your balance / off feeling. I don't want to say vertigo - but sort of dizzy... How about walking around- is it normal to still be tired after a bit...? I know it has only been 12 days for me. Yesterday was an excellent day but last night, I didn't sleep much and it pretty much kept me on the couch all day. I think 5 hours wasn't enough for recovery.. what is normal ? what do other people feel ..? I am looking for information or anyone to help or talk to..... seems like there is no one that has had this surgery around here..... any advise would be nice..... THANKS !!!
Hi there, I also had my Fourth surgery in August
it has been a very rough road, as far as the recovery everyone is different,I'm having the exact same symptoms you are having, with the exception of every other day I develop a bad headache, I'm thinking of trying Acupunture because the pain Meds are horriffic, please take it easy the symptoms only get wosre if you don't take it easy. I read and agree with one of the other members the Surgeons are pretty much done with you after Post Op follow up, so it's up to you stay on them, I've been off work now for 7 months and from March up to now I've had three surgeries, I hope you the best I'll let you now how it goes with the alternative pain relief.
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Unread 10-19-2009, 02:10 AM   #27
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Has anyone thought of or know of anyone that has attempted to hold their Doctor responsible for their actions,muyltiple surgeries etc.
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Unread 10-26-2009, 04:28 PM   #28
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I had the decompression surgery done three years ago, and am now totally symptom free.
I was very lucky, no permanent damage had done due to the chiari. When it comes to the recovery it took about 1 month for most of the stiffness in the neck to go away and another two to work out the rest of the stiffness and pain with PT. I've written most of my story down, from diagnosis to recovery, but unfortunately I don't have enough posts to allow me to post links just yet. But I will as soon as I've paid my dues
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Unread 02-02-2010, 10:31 AM   #29
WyndyHopes
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Originally Posted by cseegersdc View Post
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!

Most NeuroSurgeons are just that - surgeons. Although I had one of the best Barth Green, in April 06 . He patted me on the behind and sent me on my merry way, to recover alone w/o support. They tend to see their job as one-stop-shopping. There are others that specialize in Chiari and recovery and follow you through. Then again, not all who say they are NeuroSurgeons should be doing brain surgery. ~WyndyBelieves~
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Unread 03-08-2010, 08:09 AM   #30
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Hello I had the decompression surgery in May of 2009. I was diagnosed with chiari malformation. It was a pretty significant one. I am not having the headaches anymore but several other issues. I find that I am still not 100% myself. I suffer from fatique often still, discompfort in the back of my head, still have numbness on the right back side and I find myself still taking the muscle relaxers or headache relievers that were given to me after surgery. Is this normal? Iw ould like some feedback from someone who has been recovering for more than a year. BTW I plan on visiting my nuerosurgeon in the coming weeks and demand an MRI just for my benefit and comfort level. Thanks in advance.
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