Aa
Back pain but no Syrinx
Not sure if anyone has posted this in the past but I was wondering if anyone else has Severe back pain centered in the mid of back??? I have no signs of tethered cord or syrinx but I have been having severe back pain that centers in the middle of my back and the pain shoots up and down my spine and wraps around my sides I have had 2 or 3 MRI's nd no syrinx is seen... my nerologist as well as Dr Batzdorf looked found nothing but the pain is so bad I hurt all the time is soooooooo frustrating!!!!! And help also can someone inlighten me on why we r not supposed to do massage??? It seems to be the only thing that can releave some of my pain...
COMMUNITY LEADER
Oh ok....well the other testing is needed then as it could be that ur tonsils create a obstruction when u r upright....not everyone has a clear obstruction while laying down...gravity works to pull them down...plus u have fluids pulsing and pushing them as well...
Did u see the links to why surgery fails?...it shows all the areas Drs should be looking at...it is very interesting as most Drs we see only look at how long the tonsils are herniated....crazy if u ask me....
Selma I haven't had surgery at all.... I am going to push for the other tests and for them to do a CINE MRI... the fact that none of these things have been done leads me to think that maybe they r missing something! I am going to my primary care this next week I am going to ask him to see if he will at least order the tests. I'll keep u posted looks like I May be switching Dr's yet again....
COMMUNITY LEADER
I know with Chiari they have been doing constant research and mayb 10 yrs ago some of the testing was not as accepted practice as it is now....
They may not of seen the relationship btwn EDS and Chiari or even do the CINE then I have no idea on that....plus I know some NS's do not feel it is necessary....??? again I do not understand much of the decisions made regarding this.
But u should have a MRI to make sure u do not have scar tissue and then testing to see if u have a related or non related condition causing the symptoms as it is possible it is not Chiari or from the surgery.
U may wanna try Cambia my neurologist put me on this for my migraines its a migrane med with a muscle relaxer its nice cause when I have a migrane my neck pain is worse it relaxes all that without that horrible rebound headache... I HATE being on meds all the time half of them don't work, give me side affects I don't want or knock me out... with 4 kids that just doesn't work!!! Hop3 it will work 4 u!
Oh nd as for the kids I can only pick the baby up anyway... I have a 13, 11, 4yr old nd th 2 mo old.... great kids the older ones do a lot of the cores cause I'm n too much pain to do the donating tasks like mop Or vacuum. Nd we all know how binding over is...fun is not the word I'm thinking of either! They r great kids I'm sooo blessed!!!! Thanks for the insight ladies!
OMG yes yes yes the pain the whole post hit home!!!! When Dr. B told me to loose weight my first thought was.... who the he#$ would want to exercise in this much pain I hardly wanna get out of bed some days I wanna get my pain under control! Mind u all I have to loose is 50 lbs nd I'd be at a normal weight for my height... and the way I carry weight is evenly all over my body so most ppl don't think I weigh what I weigh.... Imma loose weight just for my own good but I'll be happy with 20 lbs!!! I am almost tempted to go to the Colorado clinic to be honest.... It kind of felt like Dr. B wrote me off because he felt my Chiari wasn't that bad... I have a 8mm herniation no syrinx seen on MRIs nd it hasn't changed at all in 10 yrs... what's changed is my symptoms.... I've had drop attacks, the cape pain, Chiari headache has got worse, ringing n my ears all the time never goes away, numbness in my arms and occasionally my legs.... weakness oh I can keep going!
NO Selma I have never had a CINE MRI just regular ones.... I also have never had any of the other tests I have seen u post about.... I was really suprised Dr. B didn't do them himself he only did a neuro exam in office nd looked at my MRI's my Neurologist had taken of my c spine nd back and the one brain MRI from when I was Dx'd almost 10 yrs ago now... I'm so tired between fighting Dr's and trying to get disability I'm spent.... like I said I suffer in silence most days cause I don't wanna be a Debby downer nd n1 who dosent have this really understands!
NO Selma I have never had a CINE MRI just regular ones.... I also have never had any of the other tests I have seen u post about.... I was really suprised Dr. B didn't do them himself he only did a neuro exam in office nd looked at my MRI's my Neurologist had taken of my c spine nd back and the one brain MRI from when I was Dx'd almost 10 yrs ago now... I'm so tired between fighting Dr's and trying to get disability I'm spent.... like I said I suffer in silence most days cause I don't wanna be a Debby downer nd n1 who dosent have this really understands!
COMMUNITY LEADER
I never went after my accident and later found I did have whip lash and it went 14 yrs until it was DX'd....
Ur MRI's indicate no loss of CSF flow, did u have a CINE MRI? If not, a reg MRI can not show if u have a change in flow as a MRI are still pics, and a CINE MRI is a moving or video of how the CSF is flowing, and they also use BP clips or leads to see if there are changes with ur BP....as it is possible to have flow, just not the proper flow.
As for weight loss, many times weight has been attributed to ICP intera cranial hypertension....we all know weight is not the only reason and it is a stretch, but it is what was taught in med school....sigh....but weight can be a factor when they put us under...and can be an issue safety wise...
And I also know if u need a surgery it can be done at ne weight, as I have a family member that is large and had surgery (something unrelated to Chiari) so I am not sure they can use the argument about weight and safety there.
Yes unfortunately we do have an invisible condition and most times no one can tell by looking at us that we have something going on, unless of course they witness us have a drop attack, or listen to our garbled speech or confused conversations....and even then they may dismiss it as nething needing immediate care.
I know what u mean with holding ur baby, although I had no idea at the time, I too had a hard time holding my DD and used pillows and all sorts of things to prop up my arms etc...to help me hold her longer...it was not as bad back then, but bad enuff, and I was only blessed with one child so I did not have others to take care of as well....
Lifting and carrying a child around is not the best thing for us, and I know u want and need to...the children that are older get them to crawl onto ur lap while sitting so u do not have to lift them, save ur energy for the youngest....it is sad we have to avoid some things in order to do others....but it is the way and the life of a Chiarian.
First off, I just have to say this... What is it with Dr. B and having us lose weight?! Admittedly, I could lose about 30 pounds, but seriously?! I am not obese. He was the first specialist I saw and I traveled all the way cross the US to see him. It took them from mid-Dec to the end of Jan to order the tests he wanted and KNEW he wanted before I ever left home. His response to me (in an EMAIL! Not in person!) was that I was "fat and needed to lose weight." WHAT?! Lost all respect at that exact moment. It's a long, curious story, but I stay with just that, having heard him basically tell you the same thing.
I have constant back pain, tingling, numbness, and burning, but most of mine is in my thoracic and cervical region... and was one of the main things that took me off work. It begins at about my bra strap area and radiates up, across the shoulders and neck, then down my arms and hands. IT sort of starts out with a "crawly" feeling. I have no idea, nor do the docs... I do have hemangiomas on my spine, so don't know if that has anything to do with it, but they say not...??? (Of course they also told me that CM was a "benign finding that would never cause me any problems"!) Dr. Di, who did my decompression surgery, said it was most likely permanent nerve damage caused by the prolonged compression of my brain stem and spinal cord though.
I have been in a MVA with severe whiplash... that could have something to do with it, as a whiplash causes tearing of the muscles and can cause nerves to become trapped in the scar tissue - so I have been told - but they can't really diagnose this except on autopsy...??? (At least not without having to remove a section of your muscle, which would only make things worse.)
The three different rheumatologists I have been to have said FM and a connective tissue disorder (EDS was strongly suggested by the last one, but she wasn't an expert on CTDs, so it's still a guess until I can get insurance and get to a specialist for EDS/CTDs.)
My old pcp (who I absolutely HATED losing when I moved) had MS... he totally understood the pain and nerve related issues I was dealing with. He put me on Gabapentin (Neurontin) and it helps some. Admittedly though, I don't take it as prescribed. I only take it when it gets bad... and then I wait too long. There is like a point where I just need to stop everything and lay down, but I don't/can't always do that. If I do and take the Gabapentin in time, it usually calms down after about 1/2 - 1 hour. If not, there is no amount of anything that can get rid of it... UGH! At that point, I take my Gabapentin, plus another med that is actually used to treat allergies, but knocks me out, that my NL gave me... and go to sleep. He talked about adding another med to the Gabapentin (Lyrica maybe???) and I said no. I don't take the meds as they are prescribed, as I don't like the side effects and mind effects of the meds...
I have had a number of different therapies over the years. Massage was actually one of the BEST ones (feel-good-wise for me!) The most effective one, I thought personally, was what the masseur called a FM massage, which was done with long medium pressure strokes. It's worth a shot! Not everything works the same for everyone, so you sort of have to play part of it by ear, try things, but let them know what's going on with you ahead of time so they can familiarize themselves with it, and tell them no if you can't take it.
I wish I could be of better help to you. What you're dealing with sounds similar, but different... you know? I just wanted to let you know that you really aren't alone. I missed out on my grandson when he was tiny (he will be 2 soon). I can't imagine missing out on bonding time with my own baby :( I'm so sorry, sweetheart!
Blessings to you!
I have constant back pain, tingling, numbness, and burning, but most of mine is in my thoracic and cervical region... and was one of the main things that took me off work. It begins at about my bra strap area and radiates up, across the shoulders and neck, then down my arms and hands. IT sort of starts out with a "crawly" feeling. I have no idea, nor do the docs... I do have hemangiomas on my spine, so don't know if that has anything to do with it, but they say not...??? (Of course they also told me that CM was a "benign finding that would never cause me any problems"!) Dr. Di, who did my decompression surgery, said it was most likely permanent nerve damage caused by the prolonged compression of my brain stem and spinal cord though.
I have been in a MVA with severe whiplash... that could have something to do with it, as a whiplash causes tearing of the muscles and can cause nerves to become trapped in the scar tissue - so I have been told - but they can't really diagnose this except on autopsy...??? (At least not without having to remove a section of your muscle, which would only make things worse.)
The three different rheumatologists I have been to have said FM and a connective tissue disorder (EDS was strongly suggested by the last one, but she wasn't an expert on CTDs, so it's still a guess until I can get insurance and get to a specialist for EDS/CTDs.)
My old pcp (who I absolutely HATED losing when I moved) had MS... he totally understood the pain and nerve related issues I was dealing with. He put me on Gabapentin (Neurontin) and it helps some. Admittedly though, I don't take it as prescribed. I only take it when it gets bad... and then I wait too long. There is like a point where I just need to stop everything and lay down, but I don't/can't always do that. If I do and take the Gabapentin in time, it usually calms down after about 1/2 - 1 hour. If not, there is no amount of anything that can get rid of it... UGH! At that point, I take my Gabapentin, plus another med that is actually used to treat allergies, but knocks me out, that my NL gave me... and go to sleep. He talked about adding another med to the Gabapentin (Lyrica maybe???) and I said no. I don't take the meds as they are prescribed, as I don't like the side effects and mind effects of the meds...
I have had a number of different therapies over the years. Massage was actually one of the BEST ones (feel-good-wise for me!) The most effective one, I thought personally, was what the masseur called a FM massage, which was done with long medium pressure strokes. It's worth a shot! Not everything works the same for everyone, so you sort of have to play part of it by ear, try things, but let them know what's going on with you ahead of time so they can familiarize themselves with it, and tell them no if you can't take it.
I wish I could be of better help to you. What you're dealing with sounds similar, but different... you know? I just wanted to let you know that you really aren't alone. I missed out on my grandson when he was tiny (he will be 2 soon). I can't imagine missing out on bonding time with my own baby :( I'm so sorry, sweetheart!
Blessings to you!
Thanks for that info on massage!
I have never had a dx of whip lash or lordosis.... I have been noticing that my fingers nd toes hurt especially when they haven't been moved for long periods... both hands and both feet are affected... this back pain has been going on for the past year and we can't seem to find the cause... the pain is always there but varies in intensity. They say that through the MRI's taken my CSF is normal... I also have a constant ringing in my ears that never goes away... I have the classic Chiari headaches nd numbness in arms and occasionally the legs... they keep just telling me its the Chiari nd giving me meds... I have 4 kids all of which I had epidurals with the last two were sections... and one of which is 2 mo. I do not get numb with meds easy or stay numb long my epidurals even in my sections always wore off freaks the Dr's nd me out! My dentist is amazed by my hyper pain sensitivity... I'm sorry for the book its just really frustrating! The pain is getting so bad I can't hold my new baby for too long and I'm hurting all the time. When I saw Dr. Batzdorf he confirmed the Chiari but said he didn't think we should do surgery at this point... he wants me to loose 50lbs. and if I'm still symptomatic then he will consider surgery.... I'm just at a loss... I'm 32 nd feel like I'm 90something sometimes. I haven't been able to work for over a year and have been fighting disability the entire time which is a whole other frustration.... I just wonder if there are more tests or if there is something they r missing... because I "look" healthy and don't come in in a wheelchair it seems like even the experts r writing me off.... Sorry I let a lil steam off but I figure u can relate! My husband and kids even tho they see me in pain question "just how bad" it really is.... I'm so used to keeping my misery to myself nd fighting through it cause no1 truly understands it.... I have a Neurologist that will do whatever tests I ask... they r good about trying to figure this out with me. I just am not sure where to go from here. Thanks for any suggestions or thoughts!!!
I have never had a dx of whip lash or lordosis.... I have been noticing that my fingers nd toes hurt especially when they haven't been moved for long periods... both hands and both feet are affected... this back pain has been going on for the past year and we can't seem to find the cause... the pain is always there but varies in intensity. They say that through the MRI's taken my CSF is normal... I also have a constant ringing in my ears that never goes away... I have the classic Chiari headaches nd numbness in arms and occasionally the legs... they keep just telling me its the Chiari nd giving me meds... I have 4 kids all of which I had epidurals with the last two were sections... and one of which is 2 mo. I do not get numb with meds easy or stay numb long my epidurals even in my sections always wore off freaks the Dr's nd me out! My dentist is amazed by my hyper pain sensitivity... I'm sorry for the book its just really frustrating! The pain is getting so bad I can't hold my new baby for too long and I'm hurting all the time. When I saw Dr. Batzdorf he confirmed the Chiari but said he didn't think we should do surgery at this point... he wants me to loose 50lbs. and if I'm still symptomatic then he will consider surgery.... I'm just at a loss... I'm 32 nd feel like I'm 90something sometimes. I haven't been able to work for over a year and have been fighting disability the entire time which is a whole other frustration.... I just wonder if there are more tests or if there is something they r missing... because I "look" healthy and don't come in in a wheelchair it seems like even the experts r writing me off.... Sorry I let a lil steam off but I figure u can relate! My husband and kids even tho they see me in pain question "just how bad" it really is.... I'm so used to keeping my misery to myself nd fighting through it cause no1 truly understands it.... I have a Neurologist that will do whatever tests I ask... they r good about trying to figure this out with me. I just am not sure where to go from here. Thanks for any suggestions or thoughts!!!
COMMUNITY LEADER
Hi...we can do massage as long as it is not deep tissue in the neck and shoulder area as it can hurt us in more ways then just the pressure....it is also suggested u see someone that knows Chiari and to avoid the area...
I had massages and it was wonderful, the Masseuse was great with my neck area and did not do deep tissue on me....they all should know enuff to do what u need.
Question, if I may....were u ever in a MVA...? DX with whip lash or loss of cervical lordosis?
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
