Chiari 1 and lower back pain??

[mimi1516]

Hi I was diagnosed with chiari 1 malformation about 6 years ago. For the last few months I have been having lower back pain and I was wondering if it has any relation to the chiari? I havent fell or lifted or done anything strenuous to cause this. Its in the lower tail bone/hip area..please help...thanks

[lasel22]

I looked up the Beighton Scale and yes, I believe that is what he used to screen me.  The only thing I could do was touch my thumb to my arm.  In addition I was asked a lot of questions regarding the other types of EDS.  So, I do think I was properly evaluated.

Thanks for the info.  It's so important to be proactive with this condition and be sure you are with the right doctor.

[selmaS]

  Chiari symptoms cycle and can come and go and change at the drop of a hat....which is what makes it difficult to DX....

Did the Dr use the Beighton Scale to DX or rule out EDS?

If so, that is for only the hyper moblie type and there are several types....do have a Dr well experienced with it to help you.....as I mentioned many times...after hearing the symptoms I did not feel I "fit" the criteria....but I was a slow healer and I bruise easily.....but I never considered myself double jointed or hyper mobile....but found out, I am..and I now understand why I did not seem to "fit" in as hypermobile.....

[lasel22]

Thanks for the info.

I don't think I have EDS.  My NS did have his PA go through a series of questions that I believe was used to rule that out.  He also had me move some of my joints to look at range of motion.  He also asked if I heal well and I haven't had any problem healing or with stitches after surgery.

Some doctors think the trauma of childbirth may have just altered things and I have pain as a result.  Chiropractic adjustments of the lower back does help a little although after one adjustment I had an increase in tingling and areas of numbness in one leg.  That was before I knew I had chiari.  Sometimes I wonder if lower back adjustments could affect the chiari somehow if I don't have any problems in the lumbar area.  Since that time I have experienced the same tingling/strange sensations in legs without any adjustments.

You mention IBS.  After my second child I had episodes on and off for 6 months then it went away.  I never understood that.  Once again, the doctor said the changes after childbirth and everything settling back into position could have caused it.  I don't know, doesn't seem to make sense to me.

[selmaS]

  I had a MRI and my tethered cord actually showed on it...occulta means it is hidden...and they feel it is due to symptoms.

When I went to my NS I told him about tail bone pain....and when mine got worse,,,my daughter wanted me to try pilates....and when I did I heard a pop...she heard it as well....and then I had severe pain..and even some odd leakage from my back...in the area of my sacral dimple....the NS looked at it and said the cord is attached by a sac like thing.....he said mine ruptured....and that was the cause of the severe pain and leakage.

I was told after decompression some with TCS can have symptoms worsen....lucky for me mine did not in the manor they had indicated....and I have had issues from time to time....

My NS did a urodynamics testing for the bladder and I was DX'd with a neurogenic bladder....I also have IBS and have walked with a cane since 2000..

I also had an epidural for childbirth....and had a CSF leak and the bad headaches as a result.....I was in the hospital for 5 days due to the CSF leak....and I had issues b4 this so I know it was not the trigger for me, but it did not help  me any,

The heal toe issues were very difficult for me...and I can do them now that  the decompression was done.....

Have you had EDS ruled out?

[lasel22]

Hi Selma,
I was wondering how you were diagnosed with tethered cord and what your symptoms were.  Is it the regular one where the spinal cord is low lying or the occult tethered cord.

I did mention this to my doctor because I have had tailbone pain for 10 years that started after childbirth.  I also had two epidurals during labor, one didn't work well, and I had the worst headache of my life the day I got home from the hospital.  Looking back I am wondering if my chiari symptoms were triggered then.  Since then it seems I have had one problem after the other.

I questioned my doctor about TC because of the tailbone pain and I have pain and stiffness in my legs along with other strange sensations.  I don't have urinary frequency or urgency or any bowel issues.  My doctor had me walk on my heels and then my toes and everything was fine so he didn't think tethered cord was an issue.

Did you have to do the heel/toe walk and did you have problems?

[mimi1516]

Thanks, im happy to have found this and became a member.  I dont know anyone who has chiari so this has been so interesting to read all these posts and comments. I can relate to so many of them. No I have not had a recent mri. Its probably been about 2 years since my last one.

[selmaS]

  Hi and welcome to the Chiari forum.

It is very possibly related...with Chiari there are related conditions such as tethered cord, disk issues, reflux and bowel issues all which can cause back pain....and then there is Syringomyelia, ,and depending on which nerve is affected could also explain lower back pain.

I also get the lower /tail bone area pain.....mine is tethered cord.....and I also have EDS which can affect joints....

Have you had a recent MRI of the spine?