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Can chiari symptoms come back after surgery? Or is it my sinuses?
Hi everyone,
I was diagnosed with chiari 1 last year and was having the worst pain from it.. Headaches so bad i thought my head was going to explode, like a cramp feeling in the back of my head, pain in my neck, shoulders and back (at the top mainly but felt like the pain went right down my spine) i always felt sick, and was sick most days, i had dizziness everyday, i couldnt cough, sneeze, laugh, bend, blow my nose or cry without been in agony and going dizzy! I was always tired and found myself sleeping during the day which i would not normally do. And my hands become very shakey and i would sometimes get pins and needles in my fingers or toes. I would often do nothing but curl up and cry in pain, i felt so weak and run down and normally im a strong person. So i had the surgery in october and seemed to be doing really well, was out of hospital sooner than expected and felt really good my symptoms seemed to have mostly gone away. But it didnt last long.. Just before christmas i started to get headache again not everyday and not as bad but it would come and go. and then i become tired again and started gettin pain in my neck and back again. I didnt think too much of it i thought its just how im recovering. But it never got better it just kept getting worse and worse and now all my symptoms are back and sometimes worse than before! I went to see my NS at the end of jan and he seemed convinced the surgery was a success and that my pains were not related and seemed to think my symptoms were now down to my sinuses.. He said it can give you similar headaches and a few other similar symptoms. Im due to go and see an ENT specialist in 3 weeks to see what he thinks but im in agony every day the same as i was before the surgery and im so fed up and frustrated! i have all the same symptoms its asif i never had the op and there just getting worse and worse now.. And my back is so much worse now than before it feels like someones stabbing me in the spine :( i just feel like i cant cope anymore. Can your sinuses make you feel this way i just dont know what to think anymore and im worrying myself that its my chiari again .. Im so frustrated and fed up now.. What do you guys think? I could just use so advice please. x
I was diagnosed with chiari 1 last year and was having the worst pain from it.. Headaches so bad i thought my head was going to explode, like a cramp feeling in the back of my head, pain in my neck, shoulders and back (at the top mainly but felt like the pain went right down my spine) i always felt sick, and was sick most days, i had dizziness everyday, i couldnt cough, sneeze, laugh, bend, blow my nose or cry without been in agony and going dizzy! I was always tired and found myself sleeping during the day which i would not normally do. And my hands become very shakey and i would sometimes get pins and needles in my fingers or toes. I would often do nothing but curl up and cry in pain, i felt so weak and run down and normally im a strong person. So i had the surgery in october and seemed to be doing really well, was out of hospital sooner than expected and felt really good my symptoms seemed to have mostly gone away. But it didnt last long.. Just before christmas i started to get headache again not everyday and not as bad but it would come and go. and then i become tired again and started gettin pain in my neck and back again. I didnt think too much of it i thought its just how im recovering. But it never got better it just kept getting worse and worse and now all my symptoms are back and sometimes worse than before! I went to see my NS at the end of jan and he seemed convinced the surgery was a success and that my pains were not related and seemed to think my symptoms were now down to my sinuses.. He said it can give you similar headaches and a few other similar symptoms. Im due to go and see an ENT specialist in 3 weeks to see what he thinks but im in agony every day the same as i was before the surgery and im so fed up and frustrated! i have all the same symptoms its asif i never had the op and there just getting worse and worse now.. And my back is so much worse now than before it feels like someones stabbing me in the spine :( i just feel like i cant cope anymore. Can your sinuses make you feel this way i just dont know what to think anymore and im worrying myself that its my chiari again .. Im so frustrated and fed up now.. What do you guys think? I could just use so advice please. x
Hi .. I had a mri about a month and a half after my op but I dunno if there was any leaks and I don't know what pseudomeningocele is if I'm honest x
Have they checked for any leaks? Did you get a followup MRI to rule out any issues with pseudomeningocele? (leak) -Zygy
Hi ,I Found Out I Was Pregnant 4/15/13 . I have irregular periods and im not sure who is the father .Ive had sex 10/29/12 -11/4/12 then round april I was with someone else .im not sure at all and my due date was December 25 , 2013 . The information I got was I ovalated 4/3/2013 and last menstrual estimate 3/20/13 . Then ,conception 3/30/2013-4/7/2013 '. Idk what to do .my baby is now 3 months
Please disregard the post I just made. Somehow I responded to your comment by mistake :)
My daughter went through a lot of mood swings and depression before she was diagnosed. One of her doctors did a more thorough test of her thyroid, including thyroid antibodies, and discovered she had Hashimoto's Thyroiditis. It was pretty severe at the time and explained the changing moods to some degree. It took a while to stabilize with medications but things leveled out. Then she got the terrible headaches and neck pain and we were back to making the rounds with all the doctors. Finally we got the Chiari diagnosis, and have since learned that the two conditions can be related. It would be a good idea to get your thyroid checked, but make sure they are doing a complete test, not just T3 and TSH. My daughter's tests always came back normal until they included the antibodies. Bad thyroid hormones can make you "crazy"!
It's difficult for family members to understand what's going on with you since the symptoms of Chiari and related disorders are so varied. I have several members of the family who are medical professionals and they had trouble "buying into" my daughter's complaints at first. It might be a good idea to show your husband this forum so he can see for himself that this is a very complicated condition.
I hope you find a doctor who is a Chiari specialist, as my daughter's tonsils were only 5mm but she had almost no flow of CSF to the brain. It looked on the MRI like "nothing to worry about" but the MRI with cine told the story. Good luck with everything and keep us posted.
It's difficult for family members to understand what's going on with you since the symptoms of Chiari and related disorders are so varied. I have several members of the family who are medical professionals and they had trouble "buying into" my daughter's complaints at first. It might be a good idea to show your husband this forum so he can see for himself that this is a very complicated condition.
I hope you find a doctor who is a Chiari specialist, as my daughter's tonsils were only 5mm but she had almost no flow of CSF to the brain. It looked on the MRI like "nothing to worry about" but the MRI with cine told the story. Good luck with everything and keep us posted.
COMMUNITY LEADER
U may also want to look at the lighting as for me florescent lighting really drives me crazy..causes me to feel nauseated, and light headed...foggy...
So look at lighting and if u can not change it mayb a tinted pair of glasses may help.
im not having success with any of my meds :( i will ask about them tomorrow.
i will try that when im next in, and i dont have to lift anything thats really heavy at all its more the bending i struggle with it always hurts.
i feel worse when im stood up more than anything else.
i will try that when im next in, and i dont have to lift anything thats really heavy at all its more the bending i struggle with it always hurts.
i feel worse when im stood up more than anything else.
COMMUNITY LEADER
I did not have success with Naproxen neither did my mom....as it has some side effects which could be some of ur issues so ask about that. Ask about ALL these meds as to interactions or side effects...
If u can put ur computer on a box or something to raise it up so it is eye level....that will help ur neck.
What is the weight u need to lift at work?....Bending is also something that can cause issues....even for me at almost 5 yrs post op....we need to learn to bend at the knees and not at the waist...
DO u feel worse when u r upright?
Yeah i went back about 3 weeks ago now only part time as i couldnt afford not too.. but been feeling worse since before i came back to work.
But i do tend to feel a little worse wen i have been in work, but i put that down to me having problems bending and having to occasionally bend at work.
I change positions at my desk about 4 times a hour lol so i dont really know how i genrally sit i can never get comfy, i do have a computer but i move the monitor around till its not putting too much strain on my head or neck to look at other wise i am in agony 10 mins in.
Tbh im not sure at all about the related conditions but i am at the doctors tomorrow so will ask.
I take the meds prescribed to me by my doctors.. I am on tramadol 50mg 1-2 tablets 4 times a day, paracetamol 500mg 2 tablets 4 times a day, naproxen 500mg 1 tablet twice a day, and i am on iorn tablets too atm.
I think its april when i see him again now,but i dont think im having another MRI done now.
But i do tend to feel a little worse wen i have been in work, but i put that down to me having problems bending and having to occasionally bend at work.
I change positions at my desk about 4 times a hour lol so i dont really know how i genrally sit i can never get comfy, i do have a computer but i move the monitor around till its not putting too much strain on my head or neck to look at other wise i am in agony 10 mins in.
Tbh im not sure at all about the related conditions but i am at the doctors tomorrow so will ask.
I take the meds prescribed to me by my doctors.. I am on tramadol 50mg 1-2 tablets 4 times a day, paracetamol 500mg 2 tablets 4 times a day, naproxen 500mg 1 tablet twice a day, and i am on iorn tablets too atm.
I think its april when i see him again now,but i dont think im having another MRI done now.
COMMUNITY LEADER
May I ask when u went back to work?....
The way u sit at a desk , and if it is a computer the tilt of ur head...all can play into how u feel as u r healing.
Related conditions including syringomyelia which u said was ruled out in all areas of ur spine, is tethered cord, disk issues, ICP, POTS, ehlers-danlos, vitamin and mineral levels Vit D, B12, Magnesium and Potassium.....
Do u take ne OTC meds? Like NSAIDS? they can cause ringing in the ears...I have had it b4 and post op as well....
When do u see ur NS again?...I had my MRI at 1 yr post op....saw him at 6 weeks and 6 months....
Hi and thakyou for commenting..
On an avarage day now i get up about 10-10:30 and feed my cats then have some breakfast,
Watch some tv for a little bit with the fella then go get showered and dressed,
Some days we walk up in to the village for a little bit of a food shop,
But not everyday as sometimes im in too much pain to even leave the house at all,
Then i would do my other half pack up for him while he gets ready for work as he starts at 6pm until 2am..
And most days if i feel up to it i walk round the corner to my friends house ony a 10 min walk and go have my tea with her before i go to work myself as i start at 10pm until 2pm i am only doing 4 hour shifts.
I work in a warehouse but since being diagnosed with chiari i have had to change job roles,
Now i sit at a desk at a window and log out and hand out watches (they use them to do there picks) then log them back in when there done with them.
Then i go home at 2pm and go to bed.
Lately ive been falling asleep in the afternoons again which i had stopped doing for a while.
Im not sure if im honest about the related conditions im not really sure what they are.. i know the NS said i had no SM before my op as i had a spinal MRI too then but not had one again since.
I had my op in october and a post op MRI in december and the NS said it looked good but not had one since and my symptoms have been worse since then.
Wow 2 years i didnt know that :(
And i know all i want to do theese days is sleep if im honest i feel i cant hurt when im sleeping.
On an avarage day now i get up about 10-10:30 and feed my cats then have some breakfast,
Watch some tv for a little bit with the fella then go get showered and dressed,
Some days we walk up in to the village for a little bit of a food shop,
But not everyday as sometimes im in too much pain to even leave the house at all,
Then i would do my other half pack up for him while he gets ready for work as he starts at 6pm until 2am..
And most days if i feel up to it i walk round the corner to my friends house ony a 10 min walk and go have my tea with her before i go to work myself as i start at 10pm until 2pm i am only doing 4 hour shifts.
I work in a warehouse but since being diagnosed with chiari i have had to change job roles,
Now i sit at a desk at a window and log out and hand out watches (they use them to do there picks) then log them back in when there done with them.
Then i go home at 2pm and go to bed.
Lately ive been falling asleep in the afternoons again which i had stopped doing for a while.
Im not sure if im honest about the related conditions im not really sure what they are.. i know the NS said i had no SM before my op as i had a spinal MRI too then but not had one again since.
I had my op in october and a post op MRI in december and the NS said it looked good but not had one since and my symptoms have been worse since then.
Wow 2 years i didnt know that :(
And i know all i want to do theese days is sleep if im honest i feel i cant hurt when im sleeping.
COMMUNITY LEADER
Hi and welcome back...so sorry for the reason u had to come back tho....
Sinus issues are common for those with Chiari but to equate the symptoms with Chiari ....I do not feel is correct.
There are several reasons u could be feeling this way....may I ask what u do on a daily activity/routine?
Did ur Drs rule out ALL related conditions?
Did u have a post op MRI? It does take time to heal....and u had surgery in Oct.....we tend to have some symptoms return around 3 months post op, but sooner depending on what we r doing daily...
It is possible to over do and have set backs as it can take up to 2 yrs for the nerves to heal...so just bcuz ur incision is healed u r not.
U will need to listen to ur body as to what u can do as there is not a one size fits all as to when in ur recovery u can do certain things,..,take it slow and rest, rest and then rest some more,
Also forgot to add i get a horrible noise in my ears or head im not sure its kinda like tv static but higher pitch most the time but somtimes is kinda wooshy too if that makes sence.
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