Haven't been here for a long while but I am so frustrated ! My surgery was last August and although I am not nearly as sick as I was before surgery I'm still having trouble...
I'm also having pain now on my left side runs to my chest and down arm.. The past few days the headaches have increased and also neck pain..I'm having a hard time sleeping also the pain in the back of my head wake's me up...Also have little bump's that occur along the right side of my head when this is flaring up..
Just curious if other's still have bad flare ups this far after surgery ?
I have flare-ups on the right side which my NS narrowed down to being muscle spasms. You can feel that the muscles on that side of the neck are very hard and tense.
The little bump could be a lymph node that is swollen. Have you had any follow-up testing to see if your spinal flow has been restored? I'd call your NS and see about getting a CINE MRI to check flow and to make sure no scar tissue has formed from surgery. Let us know what you find out!
I have flare-ups on the right side which my NS narrowed down to being muscle spasms. You can feel that the muscles on that side of the neck are very hard and tense.
The little bump could be a lymph node that is swollen. Have you had any follow-up testing to see if your spinal flow has been restored? I'd call your NS and see about getting a CINE MRI to check flow and to make sure no scar tissue has formed from surgery. Let us know what you find out!
I have flare ups and I am almost 8 years post op. My latest one started the beginning of May and is still going strong. I did have an extensive CM situation and have POTS that is very symptomatic. I hope you feel better and get some relief. Many Members discuss pot op symptoms. You are not alone. I promise. Please though get it checked with your Dr. if it continues.
Some how it didn't notify me of it and apoligize for not answering..
The last Cine I had was 3 mo. after surgery.. No has been following me except an amazing medical Chio who is also a Holistic Dr.. She sent me to Md for some blood work yesterday because she also feels something is wrong..
There are no NS where I live and Dr's here have very little understanding and knowledge of Chiari, even the ER here has red flagged me and refused treatment because I have a PM DR?? I had to wait 3 yrs before they did Gallbladder surgery because they just blamed it on chronic pain and meds???
I guess it's time to put my foot down and contact the surgeons office .. It's a 4 hr drive and hard to do when you're not feeling well.. But necessary I believe..
Can I ask if anyone else have a problem with White Matter Lesions ? They found 2 yrs ago at the same time they found the Chiari but didn't really address it..
Again Thank you... Just scared and really don't want to go through another surgery..
Deb
Anglyn said:
I have flare-ups on the right side which my NS narrowed down to being muscle spasms. You can feel that the muscles on that side of the neck are very hard and tense.
The little bump could be a lymph node that is swollen. Have you had any follow-up testing to see if your spinal flow has been restored? I'd call your NS and see about getting a CINE MRI to check flow and to make sure no scar tissue has formed from surgery. Let us know what you find out!
HI yes I have white matter lesions theses were picked up on my last mri my NS said they were a sign I had had a few small strokes and IT have been put on blood thinners as a precausion.You can get these my gp told me from smoking, drinking, high blood pressure they are not paricularly related to chiari so I have been told My NS told me not to worry about it as we all get white matter as we get older anyway as part of the ageing process(sorry if your young?). So there’s nothing we can do so IF have decided not to worry!take care
Thank you for your reply, It was a bit unnerving for me due to my family history of heart disease and strokes! They did a Spinal tap and really didn't come up with a conclusion.. I had 13.5 dozen lesions and the Dr said for my age it was a staggering amount? Also concerned because I've had episodes lately where I have severe cold sweats rapid heartbeat , chest pain tightness runs down my arm to my hand, along with vision problems , increased speech and memory problems with terrible fatigue.
The other problem is once I was diagnosed with Fibro and Chiari all new symptoms are just blamed on those so everything else is ignored until I get so sick I can't function. ( Thats the problem of living in a small town where you only have two Practices to choose from.. Again Thank you fo your info and have a great weekend!!
Thank you for your reply, It was a bit unnerving for me due to my family history of heart disease and strokes! They did a Spinal tap and really didn't come up with a conclusion.. I had 13.5 dozen lesions and the Dr said for my age it was a staggering amount? Also concerned because I've had episodes lately where I have severe cold sweats rapid heartbeat , chest pain tightness runs down my arm to my hand, along with vision problems , increased speech and memory problems with terrible fatigue.
The other problem is once I was diagnosed with Fibro and Chiari all new symptoms are just blamed on those so everything else is ignored until I get so sick I can't function. ( Thats the problem of living in a small town where you only have two Practices to choose from.. Again Thank you fo your info and have a great weekend!!
Skeeter,if there’s any possiable way for you to find a specialist that’s what you need to do.I can understand where you are right now,I’ve lived in hell for many years being treated like a hypocondriac,the mental abuse is as bad as the sickness.Where do you live?I live in N.C. There’s a NS.here who is possiably the best in the chiari field,Dr. Rosner if only you could get here,I would do all I can to help I know the pain you are facing.