Scan Results!!

[lisalailey]

Hi Guys, finally got my scan results only took 7 weeks to get them!! No definate answers but the results say:-

There is an abnormal accumulation of isotope on the right in the mid-thoracic region, most noticeable at two hours but persisting. while this could represent a Tarlov cyst it is also possible that it indicates the site of a leak. I think MRI scanning targeted on the mid-thoracic region would be very helpful to see whether this does represent an incidental association or could be the site of a csf leak.

On it goes await another scan.......hey at least something has shown,

Lisa

[Robbysmom5]

Hi Lisa - I am glad something has been found too. Where was the site of your other back or blood vessel issue? (I cannot recall all of the details?) If you do have a leak in your thoracic area, that would explain why lumbar blood patches were not effective.

[lisalailey]

My vascular malformation is now quite large covering most of the right side of my back but I have quite a large swelling over my spine which is over the thoracic area which is part of the malformation. However two different doctors have told me that the likely hood of the malformation causing a leak is extremely unlikely. Leaving the possibility that my last operation may have caused the leak. Thing went very pear shaped in the operation so maybe something occured then. I also have a ligaclip quite close to the spine which was put in during the operation, Many unanswered questions... This could be a cyst it could be a leak but of the last few years my symptoms have been very leak related. Hopefully I will find out with this next scan what is actually causing all these headaches. Ive had MRI's done before so would have thought if it was a cyst that would have shown on those.

Regards Lisa

[LeakyLaurainwv]

Did you have a nuclear cisternography? My leak didn't show up at all with a nuclear cisternography, but was plain as day with a ct myelogram. Have you had a ct myelogram yet? R they planning an MRI with gadolinium? Guess I dont know the rest of your story. Hope they find some much needed answers.

[LauraL840]

MR/CT Cisternography will only search for a leak in the cranium ... a myelogram will only search for a leak in the vertebral column (spine). It's important to understand the differences, strengths and limits of each. If your physician suspects a cranial leak based on symptoms (history and presentation) then a cisternogram and/or high resolution thin slice cranial CT is a great start! If your physician suspects a spinal leak based on symptoms (both history and presentation) then a myelogram or imaging with myelographic sequencing is needed.

And of course if you're having a nuclear med study (when a radioactive tracer is injected into the thecal sac via LP) then the terminology changes slightly ... a radionuclide cisternogram is the technical term for cranial imaging and can be done with or without nasal pledgets (think tampons up your nose) & a radionuclide SCINTIGRAM is the technical term for spinal imaging.

Every imaging study has strengths and weaknesses, pros and cons. I'm sure that was as clear as mud .... it's raining cats and dogs here... but hopefully the 'Cliffsnotes Guide to Leak Imaging' version will be helpful!

[lisalailey]

Hi Guys
Thanks for all your comments, I had a Radionuclide scan, lumbar puncture with radioactive injected fairly low down. No tampons in the nose but had scans done over 2 days total period had to lye still for was about 6 hours. I get a bit confused with all the terminology, on the appointment letter they called it a shuntogram, which completely threw me, I dont know if the next scan will be MRI with contrast or when it will be, know doubt I will be last to know, and probably only get it after several million phone calls and E.mails. Ive had so many **** ups it unbelievable, I originally went to see this nuero back in January, was waiting for a scan and it was only when I contacted my hospital where I had my MRI's done that they got forwarded onto my neuro, apparentely they had not even be requested. So I now make sure every step of the way, I chase, phone and ensure things get done or you can guarantee a very long wait.

Regards Lisa