chiari, tarlov, cervical stenosis, bone spurs, spondylosis

Looking for any advice from anyone. I've had severe pain in lft lower abdomen and down lft leg for about 3 yrs. As well as lower back/sacral pain. This was first explained away as ovarian cyst on lft ovary. So had lft ovary removed in '09. Pain came back even worse, more imaging, they claimed ovary grew back and rt ovary now had cysts. Also blood was found in all u/a's done as well as an abnorm urine cytology. Very shortly after developed bladder prolapse.So, 2010 histerectomy, bilat salping/oopher., bladder tack/sling with vag vault repair and removal of tumor around lft kidney ureter.

Few months later, same pain back again! But it brought along buddies this time in the form of, muscle weakness in legs, tingling and numbness in toes (lft worse and more frequent than rt) Then pain in mid back to sacrum with occasional sciatica. Pain in neck,shoulders with frequent muscle spasms.Have always had frequent headaches but they increased to a daily occurance. so made apt with neuro. Neuro basically seemed to blow me off but said he would do an mri of my spine and brain to check for problems and would call me if showed any problem as well as starting me on nortriptyline for the headaches. Then one morning at work (a day when the neck pain was especially bad) I got the tingles and numbness in left arm and hand to the point that I lost control of it,couldnt grasp or hold anything. This spurred a visit to pcp and call to neuro. Played phone tag with neuro for 2 weeks then nurse refused to give me any info over phone or a sooner follow up! Even after I told her my pcp saw me for problem and wanted to see the mri report.

Well I happen to be a nurse at a local drs office (pediatric) so filled out my own med rec request and faxed it. Report for brain mri commented on some "tiny gliosis" and "possible mild chiair 1" of 3-5mm with crowding of subarachnoid space but no definite "pointing"(??) Lumbro/sacral mri showed mild facet changes and osteophyes (bone spurs) but no impingement and a "lumarized" s1 s2 as well as bilateral tarlov cysts greater of which on lft at 3cm (yes CM not mm). At my follow up when it finally came he very briefly glazed over these. Did mention there was a surgery that is sometimes done for chiari but would like to try some more meds first. Gave me an rx for neurontin. I had also starting having episodes of dizzyness, blurred and double vision with my glasses on, aspirating my own saliva, coordinations, balance and memory problems. I mentioned these and he just kinda looked at me funny and said well we'de have to be careful not to overdo my meds. Those symptoms had been there before I started any meds! Anyway I reminded him of my call about the loss of hand sensation and control and increased pain in upper back. He looked @ mri again and said they did not image upper back or neck so would order it. Really?!?
Pain kept getting worse so went to see ortho. Got cd of mri from neuro office for ortho apt. They tell me no c or t spine is on it!! Well they finally find c spine which showed spondylosis, osteophytes, stenosis, flatting of spinal cord with some impulse/signal obstruction. Still thoracic was not found. So now I have to have another mri and upper body e.m.g. Pain and numbness in lft leg and lower abd. worse thatn ever yesterday with sciatica down BOTH legs! When I call ortho today to see if they can add lower body emg they tell me no, they have to evaluate that first with mri! I am SOOOOO at my wits end right now I just want to scream and cry. Did break down and cry earlier. Anyone have any experience with this?Any advice is welcome please!! Oh, I'm a 36 yr old female never had any back or neck injury.
Sorry so long. Thanks for reading.


michellesummers

[selmaS]

Hi and welcome to the Chiari forum.

Unfortunately what u r experiencing with the medical profession we like to call "the royal chiari runaround"...and that is here on the forum that we call it that....so sorry, but way too many of us have gone thru something similar I must admit.

I had so many  MRI's I thought I might bcome magnetized...

Many of the issues u mention r common with those that have chiari...,there r related conditions  many of us seem to have,,.

  U do not need to have had a back or neck injury for DDD to be an early onset or to have  stinosis....these r typical aging issues those with chiari r prone to get earlier,...I am not sure y, it has something to do with auto immune issues and ours r compromised.

  I will say, every time u have ne test, MRI or Blood work done request a copy for urself when u register b4 the testing begins,..that way u always have copies...also ask for the reports . I do not know if I answered ur questions....u may want to reask what I may have missed.

   "selma"

[mjsummers]

Thanks for replying. Was mostly venting i guess. After 3 surgeries in the last four yrs. each of which i hoped would end my misery and instead pain keeps coming back with new symptoms and diagnosis each time.I was a bit discouraged.

  I was mostly wondering if all these issues were related? Anyone else with similar issues found any treatment or med that help? Im very hesitant to jump into another surgery., especially one that involves brain and spine.  Anyone out there with most of these problems had a surgery that worked and if so what type or types?

I do have copies of my reports but not the disks or films themselves.

[selmaS]

  The big issue with chiari as to y symptoms appear to return is the chiari is never really gone, and it is possible u have suffered perm nerve damage that u have many of the same symptoms...this can result in having nerve impingement too long,,,,,,


U can contact the facility that did ur MRI studies and request copies...sometimes they will tell u to give them so much time to get them ready.....but u can request old MRI's on CD.


Have u had a chiari specialist or a NS that has treated u? It will make a diff, and u may want to get another opinion just to see what a chiari dr may be able to offer.

Sometimes the PFD surgery itself can lead to all types of new symptoms or conditions...it all depends on ur surgeon, what type of surgery he performed, and how experienced he is/.was when he did urs...and if he ran into ne issues/surprises.

  "selma"