8 Years After Surgery

After severe headaches, nosebleeds and feeling the back of my head at the neck swell I went to the doctor and was diagnosed with Arnold chiari Malformation.  When I first noticed pain I was about 16 but never paid much attention.  I did not have insurance either so I saw a series of doctors who misdiagnosed it from migrains all the way to an anuerism.  When I was finally able to have an MRI not only did the radiologist find the arnold chiari but a pituitary tumor.  I was diagnosed in February of 2000.  I went through a series of tests and once all other posibilities had been reviewed I had surgery in June of 2000.  I went through so much pain and the tumor only made it worse.  My immediate recovery afterwards was frustrating because I was limited to activities such as driving, and even lifting heavy things.  I was severly overweight at that time 303 lbs and after the surgery I had such a hard time recovering that I made a promise that I would lose the weight and I did   It is 8 years later and even though the surgery was so long ago I still feel some pain.  I was not suppose to be able to have children due to the tumor but as GOD saw fit I became pregnant in 2005 and had a beautiful daughter in 2006.  I was not able to to have a natural childbirth.  I was not even allowed to carry her to term.  The OBGYN performed a C-section at 37 weeks but she was healthy and I am not sure I would have wanted to go through labor anyways.  Even now I am limited to activities.  I cannot run long distances, I cannot pick up anything more than a few pounds because my nose still bleeds and any strain causes headaches and even now some swelling.  I am so scared that my daughter could inherit this illness.  Even though it has not been proven to be hereditery, I would feel horrible if she were to have to endure the same pain and and symptoms that are come with such a defect.  Life has resumed pretty much the same with some restrictions but I wonder if anyone else still has problems. 

sicjmo sicjmo
10 Responses Apr 21, 2008

Its been about 4 months n ow since my decompression surgery and my skull is still numb and my neuro surgeon said that it is normal to have that sensation until 6 months to a year. Right after surgery I thought all the symptoms were gone already but after I got out of the hospital and recovering home then the ringing of the ears came back, vision problem become worst and worst part of it all is that ive been experiencing extreme joints pain and muscle pain. But im still a half glass full guy and hoping that ill get better soon. Good luck to you fellows.

Hello my name is Sharon and I had the surgery in 2005. My headaces have returned even more severe,, not alone the tingling, ringing in my ear and etc. Just this past week I had a headace for seven days straight and all I could do cry when I was alone by myself. It,s very frustrating to have to go days with tingling and etc inmy head if feels like worms crawlin around. But I try to live everyday to the fullest and not let it beat me down. I have an appointment with the surgeon on Tuesday just to see what he says and what can be done so I can live a descent life without pain.

Hi I have chiari malformation type1. I had the surgery feb, 23 20012... It feel like I never had it... I'm always in pain!!! I feel like I should move my bed to Er. Because I'm always there... I'm so sick of all the pain medacation they give me...

I had surgery in 2001 for chiari 1. My life changed for the good. I stopped vomiting and vertigo 24/7 but still have severe episodes of each brought on by heat and or exertion. Some days are good but only because I carefully avoid triggers. God bless

I was diagnosed with it in feb 2010 my problems were quit sever i couldnrt swallow with oout choking, balance problems, vision problems ,voice problems. i had surgery in august 2010 and my problems are still there two year later but not as sever. some days are better than others. through this whole process i have had double neumonia three times, passed out for no reason twice and one of those times was after my surgery.

Hi, I don't know if this will actually be read seeing as this question is quite old. But I was diagnosed with Chiari 1 about 6 years ago and had decompression surgery about 3 months after diagnosis. I am currently 39 weeks pregnant with my first. Although I am not allowed a normal labour and am having a csec, Chiari is not always hereditary. From what the specialists have told me, it either is or it isn't. In my case, it isn't :). Because no one else in my family has it, it reduced the risks of my child having it also. And through regular scanning, she also does not have it. Just thought I'd share :P

i was diagnosed with arnold chiari malformation when i was around 25 or 26 years old after suffering severe headaches that would cause me to be bed ridden and often leave me forgetful and confused, i also suffered severe dizzyness and fits when i was younger, though not sure the fits were connected. i had my surgery in October 2007, my recovery was difficult and left me in intensive care, the worst thing ive ever experienced in my life, a week after i came home i was rushed back in an ambulance with bleeding on the brain, after another stay in hospital and very strong steroids i had the all clear, however almost 5 years later im still getting headaches, and very bad neck weakness and pain, i find it difficult to look in any direction for more than a few seconds without being in agony and it causing a headache, i still get dizzy feelings sometimes though not as extreme as before the surgery, im left with a large scar that goes from my neck all the way up the back of my head, and this area of my head is also uncomfortable, especially if i lean back on anything, including pillows when i am in bed. i also have very bad hearing in my bad ear, it often makes a popping noise and my hearing goes completely, comes and goes constantly. not sure if this is related either, but interested to learn if anybody else has any of these symotoms? i also often get nerve problems in my right arm, i often wake up with pins and needles and numbness in it even though i always sleep on my left side. im vey frustrated.<br />
Vikki age 30

Please let me thank you for posting your story on here. I was diagnosed with Chiari in 2005 after years of many "explanations" for my symptoms. When it got so bad that i started to pass out i was rushed into hospital and finally got diagnosed. It was a long road and nightmare but to cut a long nightmare short i had decompression surgery 6 years ago. I also still get dizzy, ringing in my ears and if i look in any direction that is not straight forward i get an excrutiating headache and a funny sensation down my face and arms. this is so frustrating as ive recently started a new full time job and i really dont want to feel defeated by this awful condition but my symptoms are coming thick and fast . I was starting to panic and got a little bit of comfort by your post.

Hello out there. My name is michael. Im a 23 year old male and i have a condition called arnold chari malformation type one. When i was 10 years old i was diagnosed. After my 15th birthday i had surgery. The surgery was 8-5-03. when i was in the hospital i had some pain, i was only in the hospital overnight. 6 years 6 months later i had another surgery. The headaches went away. But the chari doesnot. Im on here to support all of the charians that to let you know the #1 thing that the grace of jesus christ will get you through surgery. Beleive in him and he will get you through. HE GOT ME THERE AND I AM A WALKING MIRACLE BECAUSE OF HIM. GODBLESS ALL OF YOU AND KEEP FAITH IN YOUR HEART. AMEN

Three years ago I was diagnosed with Chiari Mal I and had decompression surgery. Although recovery was rough, my symptoms all but disappeared. My 1st daughter was 18 mo. I just found out would need an additional Chiari surgery (duraplasty) and my second daughter is now 18 mo. I wonder if the pressure of childbirth brought this on. I wonder too if I have passed this down to them but I tell myself that if they have it, we will fix it and that is that.

Hello - I'm glad that you are recovering to some degree. I only recently had my decompression surgery for chiari 1, as well as surgery after that for a cfs leak (one on july 31 '08, the other at the end of August '08). I also have a cervical syrinx. This was only a month ago, and I feel relatively good. Of course, did not have a pituitary tumor so there is a difference.<br />
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I noticed right away in the hospital that the numbness I had been feeling in my arms and legs was gone. I only get an occasional tingling, but that may be from the syrinx. I still have headaches now and then, but they say that could be from the healing.<br />
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Congratulations on the baby! I don't know if it is hereditary or not, but all I can say is the rest of my family is perfectly healthy. My sister was having some strange visual problems and I got very worked up and was afraid that she was developing the Chiari symptoms, but she told me to calm down and wait until she actually had any pain or anything. It's easy to see why we would worry, because it is a very scary condition.<br />
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I too went for years without being diagnosed. It was actually a very painful period for me because I felt like I was going crazy. Doctors treated me like I WAS crazy. I was diagnosed with migraines, and when I insisted that the medicines they gave me wouldn't help, and that it was more severe than they could believe, they looked at me like I was nuts. Also, I was checking all the little boxes in the paperwork you fill out in the waiting room, because I had so many symptoms. To them, that's a sure sign that you're "depressed" or something.<br />
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I did get treated by a psychiatrist for a while, but even she said that it seemed like my symptoms were organic and that I should have an MRI, but I couldn't afford one. Terrible thing :(