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Chiari Malformation Community
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1281668 tn?1271379782

Has anyones symptomes come back after surgery?

Hello
I had severe pressure headaches, balance problems an dizziness for as long as I can remember, always having the feeling that somthing was "wrong" with my head, I was diagnosed with anxiety, told I neded glasses, I was even told that I was a hypocondriac, I myself started to believe I was crazy! No one understood what I was going threw. I became pregnant at 16 (yes young I know!) the weight of carrying my son amplified my symptoms and my limbs would go numb, they finally began taking me serious when my arms would turn blue, and they sent me to a neurologist... I was told I had significant pressure on my brain and was sent for an MRI. I was then diagnosed with Chiari 1...After I had my son my symptoms continued to get worse, pressure in my head to even laugh or caugh. I had the chiari decompression surgery when I was 17 years old. After many complications (CSF & sever alergic reaction to the mesh they used to repair the leek) an 3 surgeries later, my symptoms seemed alot better. It has been 5 years now and everything seems to be coming back slowly. Has anyone experienced this before? I know I was told that the hernia can grow larger...  But has anyones symptoms returned after surgery?


84 Responses
1179332 tn?1297482590
Hi Niki

I am only about 3 1/2 months post op so I can't really tell you but I am curious about this also as I have heard from different ppl that symptoms seem to come back around the 5 year mark. For me, many of them didn't even go away but the ones that did have stayed away for now.
I'm really sorry to hear that you feel they are coming back...after 3 surgeries you deserve a lifetime of relief!!
I wonder if it would be good idea to contact your NS and get it checked out? I have heard of cases of reblockage due to a variety of reasons. Do you still have follow ups with your NS? Sorry part of this is my own curiousity of what is down the road.
Take care
Carolyn
1281668 tn?1271379782
Hello,
Imediately after my first surgery I felt some form of relief, but in time more syptoms started to subside... Only 5 years later are they coming back. From what I have herd the hernia can grow larger due to the space that was made in the decompression. However im not sure if this is a fact. I have made a follow up with my NS, I see him yearly. Unfortunately I put so much off, guilty of that, my son was just dx with it also so I have been so busy with his appointments. This is something I will definitely ask.
NIKI
620923 tn?1452919248
COMMUNITY LEADER
HI and welcome to the chiari forum.

It is possible to get symptoms as the surgery is not a cure, but a means to slow the progression. If u just had ur surgery, I would say it was possible that it was part of the healing process....or that u had a chiari related condition like tethered cord...but since it is 5 yrs...I would venture to say it could be scar tissue or a syrinx....when was ur last MRI? Do u know if the tonsils retracted after surgery?

So glad to have u join our little family here, so sorry the reasons u had to seek us out.

"selma"

"selma"
1281936 tn?1276560670
Hi,
Just found this site. I had decompression surgery in June 09. Unfortunately I was infected with a very serious type of bacterial meningitis during the op. Scary times, but I recovered. Nearly all of my Chiari symptoms disappeared immediately after surgery (I never had the headaches, but nearly all the other symptoms). I was feeling really good until a couple of months ago when I started getting tingling down the backs of my legs. Now in less than 2 months almost all my old symptoms have returned. I have an appt with my neurologist in 2 weeks but now think I'll call my neurosurgeon too and push for an MRI. I've read that you can develop SM post surgery, even if you never had one to begin with.
Really sorry you're going through all this. Even though I think many of us feel isolated with this condition, it's good to be reminded through groups like this that there really are people like us, and who believe us.
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the chiari forum.

May I ask, could u have been doing  an activity that may have triggered this... have u been in touch with ur NS?

U r so right...this condition is not an easy one to navigate and to have drs not believe our symptoms r related to the only condition we r dx with  is so frustrating...and then once u have surgery too many feel ur were cured.....but we have this group to get the info and support we need.

I am happy to have u as part of our little chiari family here, so sorry the reason u had to seek us out.

"selma"
Avatar universal
Hi Niki,

My situation is similar to yours. I had my surgery10 years ago and for the past year some symptoms have come back and I am in chronic pain every day. My head, neck, and back hurt as well as stiffness in my neck. I have a syrinx in my spinal cord, but everything else is normal on the mri. The dr said there is nothing they can do so i guess you just have to deal with this disease. Surgery is not a cure.
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