re-called for a cine mri unexpectedley???

[del833]

Hi all
     Its been a while since Ive been on here. Just to re-cap I had a syrinx found at c6/c7 only very small. however I do get symptoms of numbness,tingling and weakness but only down left hand side of body.I also get neck and shoulder stiffness and ocassionaly a hot poker feeling in my foot,again all on left side.  Ive seen the neurosurgeon who didnt seem worried about the syrinx but never the less sent me off for a full spinal MRI and a brain MRI,he said he ould then see me in clinic to discuss the results. However Ive not had the results or seen him in clinic,but was recalled for what they originally said was a 3d mri,However when I attended for appt today it was actually a cine mri of my head as my heart was monitored throughout the scan.All the radiographer would say was they needed more detail of csf flow in my head/top of spine. I now have to wait to see consultant until I find out what on earth is going on or the results,which could be weeks away. Could anyone tell me what may have flagged up on my original scans to make them recall me for this cine MRI. I mworried sick:(((

[del833]

Hi
    Thanks for your response,Im not sure how csf flow can be norm either,but then I struggle to understand any of it. I havent got Ehlers-Danlos.   Thanks again for your input,I will keep pushing until I have answers.

[selmaS]

  Hmmm not sure how CSF flow can be normal if a syrinx has formed....do u also have Ehlers-Danlos?

  Not sure what they may try....for the arachnoid web I read they do some type of injections...I would have to research it to know for sure...and what they inject as I do not recall....

Many times if u get fobbed off it is bcuz the Dr u r seeing is not familiar with the condition and how to help...u just have to push for answers and keep seeing Drs until u find the right one that can....hang in there.

[del833]

Hi all
  Ive received a report from the hospital,I have a syrinx at it widest at c6/c7.although csf flow seems normal in this area?????? Also no abnormality in the cranio vertibral junction. they are thinking the other abnormality lower down at t4/t5 is a arachnoid web. Thats all my letter says really. I have to go back in june to discuss treatment options. Anyone know what they might be??? or heard of theses webs before. Nothing seems definate by the letter. the neurosurgeon has says he doesnt expect me to face probs in short to medium term if at all. But I am already facing probs with my symptoms!!! I feel as if hes not listening to that and am wandering if there is any point in going to see him in june just to be fobbed off:(((

[selmaS]

  Hi....I do not recall neone with a report such as this, but those of us with Chiari do not have the best memory......

I am curious as to what caused ur syrinx and I wonder if the issue in ur thoracic spine is another syrinx or a bulging disk ?

A CINE will help show where the CSF obstruction is and mayb shed light as to what is going on.....

Until u know for sure what u r dealing with there is no way to know how to treat it.....

Take a deep breath and remember to exhale....

[del833]

Hi,me again. Ive stilll not had full report from my scans but my GP has been faed the report of first scans(full spinal and brain mri) It says there is no abnormality at craniovertibral junction(please excuse the speling) however syrinx in neck is at its largest at c6/c7. They have also picked up an abnormality at T4/T5,which at present is unknown they dont think its another syrinx but possiby hardened ligaments??? Whatever it is is pushing my spinal cord forward slightly??? So I guess this is why I was recalled for a cine MRI??? as I said no results on that yet and not had consultants opinion. Has abyone ever come across the above,is there any treatment??? or will I be on pregabalin for life??? Thanks in advance for any input.

[selmaS]

  It was determined I did have Chiari,and tethered cord...I did have surgery for Chiari in May of '09 so 5 yrs ago this May....wow time flies by.

I still have issues as I do have related conditions after I got to my NS I found out in addition to the Chiari and tethered cord, I also have CCI, EDS, and a partially retroflexed odontoid....and I also have Hashimoto's thyroiditis...

I am doing so much better post op....but can still have HA's and issues due to the related conditions I do have.

I do have pics of my scar in my profile pics....and my surgical journey posted in a journal there as well...feel free to take a look.

[del833]

awwww no how worrying and tense a time that must have been  for you. If you dont mind me asking what was found on your scans? Have you had to have any treatment? I will keep you posted when I hear any news.

[selmaS]

  No worries.....I know it is hard to second guess Drs......

I had a similar worry when I went for a MRI they were to do it in 2 parts...part way they just stopped and said they had to get in touch with my Dr and to lay still....almost 45 mins later they took me out and said I had to come back the next day....I had no idea what was going on,.....

SO I know what u r going thru....

Keep us posted on what u find out.

[del833]

Thank you ,I think thats my worry is that I may have chiari as well,but whatever will be will be I cant change the outcome can I . Also as explained above as I had no real explaination what this recall scan was for and no results from first scan I was really worried they might have found something sinister on the first scans. No your right we dont get copies of our reports,if only:))) I would have had a sneek peek and saved myself a whole lot of worry.
  Also because neurosurgeon thought at my initial consultation that my syrinx was prob idiopathic and dormant and I prob wasnt facing any neurological decline I was really shocked to be called for this extra scan. Thanks for yor helpful comment.

[del833]

Thank you,I should really be grateful that this extra mri unexpected or not,will give me lot more info on condition. I think its because I didnt get the results from the other MRI first and just received an appt for another scan out of the blue that it concerned me really.Thanks for your hepful comment.

[selmaS]

  Hi,.as czpdx mentioned above it is a critical test to have especially since u have a syrinx with symptoms....to see what is causing the flow issues to have caused ur syrinx to form is one reason and to see if it is an ongoing issue and to what degree...

It may indicate u have Chiari as well....

Since u r in the UK u ca not get copies of ur MRI or the reports which is what I would normally suggest u do, and take a peek...lol...

All the waiting we do with these conditions gets us ready for surgery if we should require it...as it can take time to heal and we have to be patient and not rush things...so, take a deep breathe...and remember to exhale <3

[czpdx]

I know it's tough not knowing, but actually, it's awesome that your doctor is moving forward with a CINE MRI. They are crucial in determining impact on CSF flow and will help give the doctor a much better picture of what's going on. Often the MRI will look like there's room for flow, but the CINE will show that flow is actually impaired. Or...maybe it will show that the flow is fine. Either way, it's better to have more information. Take care!