Aa
Is it worth it?????
Hello I'm new on here, I have chiari malformation with a 7.5mm, I have been in a lot of pain for years and I have been getting worse. I go see the neurosurgeon this Thursday and was told I will more than likely have to have surgery. I m married and have to small children and I would like to know does the surgery work? I can't live like this anymore it affects my everyday life I can even function on some days the pain is so bad. I would just like to know if the surgery will be worth it and will fix the pain, if it does then I have prayed about it daily that god will lead me through this.
Hi there,
I had decompression surgery two years ago. My regular doctor had been treating my headaches as migraines and my neck pain and radiating nerve pain as muscular skeletal for a few years and then we did the MRI.
When my doc had told me that I would likely have to have surgery it scared me to death! My first thing was, I want "THE" guy. I found THE guy locally and away to surgery I went.
Now, it was not a bed of roses! First, my CSF flow looked good ahead of surgery. My primary symptoms were - severe headaches, severe neck pain, tingling and numbness down both arms, ringing in the ears, blurred vision, dizziness and nausea. I also had what I referred to as brain freeze on steroids. Anytime I strained (lifting something, coughing, oh dear lord sneezing, etc) I would get this horrible pain in my head. It started from the back of my head and then went everywhere in my head and throbbed something fierce.
Following surgery, in the hospital the surgeon told me that there was a flow issue. My body was making too much cerebral spinal fluid. His example was, for years there was what equalled a "kink in a hose", because of the compression fluid was just eeking through to the brain, so my body made more to keep my brain all kozy. His performing the decompression surgery was like releasing the kink in the hose with the water on full blast. Because of this - my post op experience may be different from those who knew of flow issues going in and a shunt was put in right off the bat.
However, the first 4 weeks sucked. I think it was mostly due to the fluid issue though. I couldn't get out of bed. Constant nausea. I had two spinal taps to draw down the fluid, and it would just build back up. My doc put me on a medicine to slow the production of fluid, he thought eventually my body would figure out I didn't need it to produce the fluid at the same rate. AND - it did. No shunt, no more fluid meds.
All in all it took me about 8 weeks to feel pretty good. After about 10 weeks I was back at work and getting better much faster. While I still have symptoms of the chiari, I am certainly glad that I had the surgery. The severe symptoms on a daily basis are gone. I think if it weren't for separate health issues that I believe trigger chiari headaches (knock me on my butt), then I would barely notice the chiari at all.
I have chronic sinus congestion/allergy issues. A couple times a year I don't get infront of it fast enough or it turns into an infection. I don't know why but this makes the headache at the base of my head and around to my temples just miserable. (Enter - Fiorecet...it really helps manage the headaches).
Also, when my regular doc sent me for the first MRI, the found the chiari and two herniated cervical discs. We are not addressing the discs surgically, I go in for steroid injections when the discs get out of whack. IF I don't get on the neck pain early enough and get it addressed - then my neck muscles spasm so much that it locks up. This, I believe, causes my neck to shorten basically, and puts pressure on the chiari, thus causing a kick my butt headache.
These are the only times I really notice the chiari symptoms - except that brain freeze thing - but it is not as bad and I really only seem to notice it with big sneezes or coughing attacks). I do believe that I have minor neck pain on a regular basis as a result of the surgery. Not horrible and no nerve tingling - just minor neck pain/stiffness. I think though that any surgery or injury for that matter when all of the muscles are cut through and/or removed from the bone will create ongoing issues. Again, just my experience and opinion.
I feel like - even though I have issues on occassion - I am much better off after having the surgery. My quality of life is much better, I am not in constant pain and I enjoy my family much more now (maybe they enjoy me much more because I am not constantly cranky). :)
All advice to find a specialist is ABSOLUTELY true. Find "the" guy! Talk to him at length about what is going on with you. Make notes, go in to the visit with every question you have about your symptoms, diagnosis and what his/her treatment plan might look like.
Good luck to you Meg. I hope you get to feeling better!
I had decompression surgery two years ago. My regular doctor had been treating my headaches as migraines and my neck pain and radiating nerve pain as muscular skeletal for a few years and then we did the MRI.
When my doc had told me that I would likely have to have surgery it scared me to death! My first thing was, I want "THE" guy. I found THE guy locally and away to surgery I went.
Now, it was not a bed of roses! First, my CSF flow looked good ahead of surgery. My primary symptoms were - severe headaches, severe neck pain, tingling and numbness down both arms, ringing in the ears, blurred vision, dizziness and nausea. I also had what I referred to as brain freeze on steroids. Anytime I strained (lifting something, coughing, oh dear lord sneezing, etc) I would get this horrible pain in my head. It started from the back of my head and then went everywhere in my head and throbbed something fierce.
Following surgery, in the hospital the surgeon told me that there was a flow issue. My body was making too much cerebral spinal fluid. His example was, for years there was what equalled a "kink in a hose", because of the compression fluid was just eeking through to the brain, so my body made more to keep my brain all kozy. His performing the decompression surgery was like releasing the kink in the hose with the water on full blast. Because of this - my post op experience may be different from those who knew of flow issues going in and a shunt was put in right off the bat.
However, the first 4 weeks sucked. I think it was mostly due to the fluid issue though. I couldn't get out of bed. Constant nausea. I had two spinal taps to draw down the fluid, and it would just build back up. My doc put me on a medicine to slow the production of fluid, he thought eventually my body would figure out I didn't need it to produce the fluid at the same rate. AND - it did. No shunt, no more fluid meds.
All in all it took me about 8 weeks to feel pretty good. After about 10 weeks I was back at work and getting better much faster. While I still have symptoms of the chiari, I am certainly glad that I had the surgery. The severe symptoms on a daily basis are gone. I think if it weren't for separate health issues that I believe trigger chiari headaches (knock me on my butt), then I would barely notice the chiari at all.
I have chronic sinus congestion/allergy issues. A couple times a year I don't get infront of it fast enough or it turns into an infection. I don't know why but this makes the headache at the base of my head and around to my temples just miserable. (Enter - Fiorecet...it really helps manage the headaches).
Also, when my regular doc sent me for the first MRI, the found the chiari and two herniated cervical discs. We are not addressing the discs surgically, I go in for steroid injections when the discs get out of whack. IF I don't get on the neck pain early enough and get it addressed - then my neck muscles spasm so much that it locks up. This, I believe, causes my neck to shorten basically, and puts pressure on the chiari, thus causing a kick my butt headache.
These are the only times I really notice the chiari symptoms - except that brain freeze thing - but it is not as bad and I really only seem to notice it with big sneezes or coughing attacks). I do believe that I have minor neck pain on a regular basis as a result of the surgery. Not horrible and no nerve tingling - just minor neck pain/stiffness. I think though that any surgery or injury for that matter when all of the muscles are cut through and/or removed from the bone will create ongoing issues. Again, just my experience and opinion.
I feel like - even though I have issues on occassion - I am much better off after having the surgery. My quality of life is much better, I am not in constant pain and I enjoy my family much more now (maybe they enjoy me much more because I am not constantly cranky). :)
All advice to find a specialist is ABSOLUTELY true. Find "the" guy! Talk to him at length about what is going on with you. Make notes, go in to the visit with every question you have about your symptoms, diagnosis and what his/her treatment plan might look like.
Good luck to you Meg. I hope you get to feeling better!
The first time I passed out I was with a bunch if my friends talking and I got clammy and just passed out that when I broke my jaw, but I get really dizzy and can't focus in anything, do you think the spinal leak I had for so long could have made it worse??
I cannot re-emphasize enough the importance of a Chiari specialist. There are a *lot* of puzzle pieces to put together, & only a specialist gets it.
Best of luck to you.
Best of luck to you.
COMMUNITY LEADER
Hi,...goodness u have a lot going on....do u know did u pass out or have a drop attack, they r different...when u pass out u feel it coming over u, a drop attack u do not and u r not out longer then a few seconds, when u pass out it could be a few minutes....and again u can tell u r going to pass out b4 u go out.
I hope this NS is better then the last one u were to....and knows to test u for syrinx's and eds and all the other related conditions.
Do keep us posted as to how this visit goes
Good Luck : )
Thank you for the welcome and response , when I was 16 is when they found I had chiari but said it was nothing to worry about cause it was not effecting me at the time, I have all ways had headaches but when I was 21 or so I passed out and broke my jaw and the headaches became 10 times worse I seen a N that was crazy and money hungry, I had a ton of test he treated me for everything and was on a tone of meds, they did a spinal tap that ended up in a spinal leak for over a week that was awful!!!!!!! So I left that doctor and went to another they treated me for other stuff, so I started seeing some diffrent, my systoms are sever headaches, numbness in hands and arms, neck pain, memory loss, sight problems, I have a lot of pressure in my head is what it feels like, I have passed out, dizziness and so forth, I did have a resent MRI and I do not have a normal csf flow, I also have narrowing of the spine I think that can be caused by my chiari? And I'm sure when I had that leak that didn't help any lol.,, but I'm only getting worse and so is the pain!!!! So hopefully this surgeon can help me!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
No....surgery does not always fix the pain, for some it can get worse...it all depends on if ur Drs test and tule out all related issues b4 considering surgery....having HA's is hard to deal with, but what other symptoms have u had...if not too many u may end up with more if u do not follow thru and get the other testing b4 having or considering surgery....Chiari cycles and when stressed u will feel worse, u have small children so to have HA's is not uncommon...
What symptoms do u have?
Did u have a CINE MRI to check ur CSF flow? Did they rule out syringomyelia, tethered cord, disk issues, sleep apnea, ICP, POTS, ehlers-danlos? Many of these related conditions can affect how u feel and heal post op so it is best to get checked for them now.
Make sure ur NS is a true Chiari specialist and see a few and compare them....do not jump into surgery...for those of us that have had surgery, yes, it helps...do we all feel better...no, did we need surgery, yes....
Does everyone with Chiari need surgery- no....not always for chiari so it is possible to avoid it,. but u need to find out how ur Chiari is affecting ur overall health.
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