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Old 03-15-2010, 10:56 PM #31
babiigirl81104 babiigirl81104 is offline
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Default Chiari Malformation Surgery. Help

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
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Old 03-20-2010, 12:06 PM #32
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Default New to the recovery stage and i wonder what's in store

Hello all,
I know this is an old thread but since there has been some recent activity, I hope this is a good place to turn for answers.

My story begins like most, diagnosed on accident when the doctors couldn't find anything else wrong to explain away my symptoms. Then came the searching out a doctor who actually knew what he was talking about. All in all, I am lucky since I only struggled with it from diagnosis to surgery for two years. I know many people get bounced around a lot longer then that so I count my blessings.

My symptoms included chronic pain, fatigue, restlessness, headaches (the ones that would come with positional like bending over and migranes that were made worse with movement). Finally I was referred to a neurosurgeon and we decided not to do surgery because none of my symptoms were neurological. About 3 months later I started developing bladder issues that weren't normal, even for someone with Chiari. Instead of not being able to control when I went, I have issues being able to go at all. I sit down and sometimes it takes me 10 minutes of convincing to be able to void my bladder.

At this time I was sent to a urologist who determined my bladder issues were a result of my syrnix or Chiari and my NS and I decided surgery was the only option to stop the progression of this neurological symptom.

I had my decompression surgery on the 27th of january 2010. Afterward I developed horrible headaches that put any of my Chiari headahces to shame and it was determined it was due to a leak in spinal fluid (probably at the dura graft site). My doctor let me rest for almost a month hoping the leak would correct itself but it didn't. Life was misrable. I couldn't even go to a doctors appointment without spending the next few days in agonizing pain. It even landed me in the ER 3 times when nothing would help to stop the pain. (Usually in a CSF leak headache, if you lay down, it goes away. When you're up an about it undoes all the bodys' progress at stopping the leak and the longer you're up for, the longer it takes to get the headache under control. It's one of the main sign of a CSF leak and I only say this because I didn't know this and have ran into many people who with that information alone, have lead to their being diagnosed with a CSF leak).

I was readmitted into the hospital for a revision on my original surgery and they were unable to determine the source of the leak. My doctor went in and took out some of the stitches on the dura patch and put more "glue" around the site. Then he put in a lumbar drain to divert the CSF fluid and lower the flow to allow my body more time to heal. This was done on the 8th of march 2010. I know I am only 12 days post op but I am feeling better then I have in years!

My question out there is what are the life long limitations that occur from the decompression surgery. My doctors say for each person it's different which I agree with but he said that trial and error is the only way to know my personal limitations. This scares me because if I do something, the only way I'll know if its a limitation is if it makes things worse. I don't even want to attempt to do something if it's going to make things worse. What have any of you out there found that makes the symptoms return and/or worsen? I've been told to stay away from amusment park rides like roller coasters and things like sky diving but i've also been told something as simple as running has ruined all the progress some people have made. This is hard for me because I am in the military so I will no doubt have to try but if there is some advice I can get from people who have gone through this I would greatly appriciate it. Thank you so much in advance for your help. I wish you all the best of luck in each one of your "fight against Chiari."
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Old 03-23-2010, 05:54 PM #33
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Originally Posted by semilesh View Post
Hello all,
I know this is an old thread but since there has been some recent activity, I hope this is a good place to turn for answers.

My story begins like most, diagnosed on accident when the doctors couldn't find anything else wrong to explain away my symptoms. Then came the searching out a doctor who actually knew what he was talking about. All in all, I am lucky since I only struggled with it from diagnosis to surgery for two years. I know many people get bounced around a lot longer then that so I count my blessings.

My symptoms included chronic pain, fatigue, restlessness, headaches (the ones that would come with positional like bending over and migranes that were made worse with movement). Finally I was referred to a neurosurgeon and we decided not to do surgery because none of my symptoms were neurological. About 3 months later I started developing bladder issues that weren't normal, even for someone with Chiari. Instead of not being able to control when I went, I have issues being able to go at all. I sit down and sometimes it takes me 10 minutes of convincing to be able to void my bladder.

At this time I was sent to a urologist who determined my bladder issues were a result of my syrnix or Chiari and my NS and I decided surgery was the only option to stop the progression of this neurological symptom.

I had my decompression surgery on the 27th of january 2010. Afterward I developed horrible headaches that put any of my Chiari headahces to shame and it was determined it was due to a leak in spinal fluid (probably at the dura graft site). My doctor let me rest for almost a month hoping the leak would correct itself but it didn't. Life was misrable. I couldn't even go to a doctors appointment without spending the next few days in agonizing pain. It even landed me in the ER 3 times when nothing would help to stop the pain. (Usually in a CSF leak headache, if you lay down, it goes away. When you're up an about it undoes all the bodys' progress at stopping the leak and the longer you're up for, the longer it takes to get the headache under control. It's one of the main sign of a CSF leak and I only say this because I didn't know this and have ran into many people who with that information alone, have lead to their being diagnosed with a CSF leak).

I was readmitted into the hospital for a revision on my original surgery and they were unable to determine the source of the leak. My doctor went in and took out some of the stitches on the dura patch and put more "glue" around the site. Then he put in a lumbar drain to divert the CSF fluid and lower the flow to allow my body more time to heal. This was done on the 8th of march 2010. I know I am only 12 days post op but I am feeling better then I have in years!

My question out there is what are the life long limitations that occur from the decompression surgery. My doctors say for each person it's different which I agree with but he said that trial and error is the only way to know my personal limitations. This scares me because if I do something, the only way I'll know if its a limitation is if it makes things worse. I don't even want to attempt to do something if it's going to make things worse. What have any of you out there found that makes the symptoms return and/or worsen? I've been told to stay away from amusment park rides like roller coasters and things like sky diving but i've also been told something as simple as running has ruined all the progress some people have made. This is hard for me because I am in the military so I will no doubt have to try but if there is some advice I can get from people who have gone through this I would greatly appriciate it. Thank you so much in advance for your help. I wish you all the best of luck in each one of your "fight against Chiari."
Worst surgery I ever had,, it was tried to stop the progressionof the neuropathy in my hands arms and legs,, two weeks post op,, I was back in the hospital with MRSA in the incision,, and menengitis from the patch used on the dura,, I had spinal fluid leaking out of the incision site,, and had to have a redo operation two dqays later,, all in all,, I wish I had never had it done,, since I never had the headaches or any real symptoms of Chiari,, so if you dont really need it,, dont go in for it,, it may be a god send for some people,, but for alot of others,, its only the beginning of there private hell,, mine is still a mess,, surgery was 8/09
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Old 03-24-2010, 02:03 PM #34
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Hi...I understand your anxiety about this condition and the aftermath of surgery. I am 42 and had a decompression with a laminectomy, craniotomy with duraplasty in 2001, when I was when I was 35.
I think that recovery is different for everyone who has this condition and has the surgery...because the symptoms vary so much from one person to another. It took me several months before I gained strength, and I had terible pain and soreness in my neck and shoulders. Physical Therapy can help if you have a good neuro-PT who will focus on slow strengthening of the muscles that support your spine.
Your head is like a bowling ball, and when you have your neck muscles cut, it severely weakens your ability to hold that bowling ball up. The frustration comes with the lack of professional knowledge about this in the medical field.
IT is very difficult to find a neurologist who really understands the full scope of what we go through.The neurosurgeon is pretty much done with you once he does the surgery and sees you for your post-op visits. Then you have to find a neurologist who can monitor and treat your symptoms.
Find a neurologist to see...bring your records, surgical notes, etc. and explain your symptoms. Try the WACMA site for a list of dr. names.

It is a frustrating battle with the added twist of sometimes looking pretty healthy...therefore people think you are fine and can't understand what the problem is. Don't give up...keep going back til they do something for you. You may always have side effects and symptoms... arm yourslef with knowledge and get as much info as you can.
Best of luck....
Having a simular problem. I am having the pain in the back of my head where they did the surg. and am not thinking clearly. Getting really worried, but don't go due to fearing another surg. Had the surg in Oct. of 2009. How long did it take you to recover...or do you still have pain in your head..I don't call them headaches anymore..it's my brain hurts..
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Old 03-24-2010, 05:19 PM #35
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These surgeonns are WAY to quick to grab a knife and start slicing up our heads,, if you can get away without surgery, PLEASE DO IT,, it works for some people,, but alot of us suffer a lifetime with more problems then what we started out with
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Old 03-25-2010, 06:48 PM #36
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I am new just having my Chiari type 2 Malformation surgery March 4th 2010. We knew there'd be side effects like nerve bruising but besides no feeling in my good leg i have no sensation in kidneys or bowels. Im also hoping to get a positive thing on this surgery
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Old 05-05-2010, 03:19 PM #37
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Worst surgery I ever had,, it was tried to stop the progressionof the neuropathy in my hands arms and legs,, two weeks post op,, I was back in the hospital with MRSA in the incision,, and menengitis from the patch used on the dura,, I had spinal fluid leaking out of the incision site,, and had to have a redo operation two dqays later,, all in all,, I wish I had never had it done,, since I never had the headaches or any real symptoms of Chiari,, so if you dont really need it,, dont go in for it,, it may be a god send for some people,, but for alot of others,, its only the beginning of there private hell,, mine is still a mess,, surgery was 8/09
Hi My name is Wanda i had my surgery on 9/09, now i have multi faceted face pain so i dont even know what type of face pain i am having to know what type of med to take, also i already had mrsa of the r nares which flares up more often. My emotions are of the charts, my sister says that it has been said that people can become bipolar after a sugery like this, but i dont know. My depression is worse and i cry at a drop of a hat and the mucle cords that run up the bsck of my neck to my head are always tense and sore and that now i have a syndrome that causes blood clots, I regret ever having this surgery more than i can say. I am still weak still can't walk any great distance very fogetfull etc unemployable omg its horrible
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Old 05-06-2010, 11:39 AM #38
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Hi momof4,

Well just your userid explains a bit of the slow recovery!! LOL..I too have a herd of kids and a "very large brain" . That is how I explained my decompression to my younger kids.
I had a 10 mm herniation diagnosed in 11/03 and surgery in 10/04. I too felt incredibly weak and frustrated with the pace of recovery. I became very stiff and felt like my shoulders and neck were on fire with "nerve burning". My therapist (not my surgeon) put me on Neurontin (low low dose) to help with some of the pain.
The most important thing for you to remember is that you are recovering from Major Surgery. You did not just have a mole removed or your appendix taken out. Every muscle in your neck was basically severed and your skull was opened up. Then in my case the dura membrane covering the brain was opened, my cerebellar tonsils were lifted slightly, scar adhesions cut away to restore CSF flow and then a synthetic patch sewn in place to allow extra room for the brain. The back portion of my 1st vertebrae was removed and then my muscles were reattached. MAJOR STUFF!!

I picked up the O R reports from my surgery and was much more patient with myself after reading what was done while I was sleeping. I also made my family read it so they too could develop the compassion and support I needed from them.

Just be patient and don't push yourself. Maybe a pain management doc could help out with some of the pain while you recover.

I know how you are feeling and I can tell you it does get better.

Last edited by chiarichic; 05-06-2010 at 11:43 AM. Reason: add more
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Old 07-21-2010, 03:47 PM #39
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Question post op chiari 14 wks still misarable

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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
hi had surgery 14wks ago. still having headaches,pain ,numbness. i wonder how long did it take u to go back 2 work. i dont see it happening soon . i get dizzy after 30mins of standing. had a follow up mri, but no one has contacted me with results so i guess its ok, iunderstand how frustrated u feel and i only have 2 kids
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Old 07-29-2010, 03:06 PM #40
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hi had surgery 14wks ago. still having headaches,pain ,numbness. i wonder how long did it take u to go back 2 work. i dont see it happening soon . i get dizzy after 30mins of standing. had a follow up mri, but no one has contacted me with results so i guess its ok, iunderstand how frustrated u feel and i only have 2 kids
Chiaris are showing up more and more as the result of better imaging,, so we see Chiari on the report and we jump up with that aha moment,, here is what is causing our symptoms,, so off we go from one neurosurgeon to another,, who finnaly does the CINE,, and says ya,, this may be some of your problem,, when all along it was there not causing any problems,, yet we jump under the knife and end up worse,, the surgery is brutal,, the risk of infection is great and there messing around with your brain,, to them its no big deal,, they do it everyday,, and to them chiari surgery is nothing,, they like boring around for tumors and such,, and were left with scars,, infections,, and a host of more problems,, my suggestion again,, if you are not crawling around on the floor screaming in pain, dont search out someone that will do the surgery,, you just might get more then you wanted to get rid of,,,
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