I am not doing well. I had a decompression, C1 laminectomy, with duraplasty in oct of 2011, a 2nd decompression with release of spinal cord tethering at C1 in oct of 2012, then a laminectomy at C2 with decompression of spinal cord/tethering at C2 in june of 2013. My headaches are back, I have severe tingling/numbness at the back of my neck, face, hands, arms, feet, legs, and shoulders. I had a cervical MRI done 11 days ago. Here are the findings that I could use some help with (thanks for your help!):
FINDINGS:
There are postoperative changes at the skull base related to Chiari decompression and pseudomeningocele repair. There is metallic mesh region of the occiput, inferiorly. There is duraplasty material along the posterior aspect of the thecal sac. There is mild deformity in the inferior aspect of the right tonsil which has likely been partially resected. There is small fluid collection posterior to the thecal sac at C1-C2 level measuring 12 mm in craniocaudal, 6 mm in AP and 13 mm in transverse diameter. There is surrounding STIR signal and enhancement, and is likely postsurgical seroma. There is edema in the posterior paravertebral muscles related to surgical approach. There is deformity posterior right aspect of the thecal sac/mass effect at the level of foramen magnum suggesting small loculated CSF collection. Size of collections approximately 23 mm craniocaudal, 10 mm AP and 20 mm transverse diameter. There appears to be septations in the left aspect of the thecal sac, series 7 image 5. Cord appears adherent to the posterior right aspect thecal sac at most inferior aspect of duraplasty material at C2-C3 level, series 7 image 12. The CSF space anteriorly at the foramen magnum is normal in appearance. At the skull base there is note of a hypoplastic and foreshortened appearance of the clivus, which is congenital. There is small, shallow appearing occipital condyles. Cervical spine is in normal alignment. Vertebral body heights are maintained. There is no abnormal marrow signal. The vertebral disc heights are maintained as well. The cervical cord is normal in signal. The visualized deep spaces of the neck are grossly unremarkable. There is no significant disc herniation, spinal canal or neural foraminal stenosis at any cervical level.
IMPRESSION:
POSTOPERATIVE CHANGES AT THE SKULL BASE FROM MULTIPLE DECOMPRESSIONS. SMALL FLUID COLLECTION POSTERIOR TO THE THECAL SAC AT C2 LEVEL BELIEVED TO BE POSTOPERATIVE SEROMA.
LOCULATED CSF COLLECTION AT THE FORAMEN MAGNUM CAUSING MILD MASS EFFECT ON THE POSTERIOR ASPECT OF THE UPPER CERVICAL CORD LIKELY RESTRICTING CSF FLOW POSTERIOR TO THE CORD. ANTERIORLY CSF SPACES IS NORMAL. FURTHER CHARACTERIZATION OF CSF FLOW COULD BE PERFORMED WITH CSF FLOW STUDIES IF CLINICALLY INDICATED.
NO SIGNIFICANT DISC HERNIATION, SPINAL CANAL OR NEURAL FORAMINAL STENOSIS THE CERVICAL LEVEL
I’m no doctor, but it sounds to me like you have a collection of CSF that is bulging out and causing you to still have pretty severe symptoms. I would imagine they will need to do another surgery to relieve this fluid sac. Idk, though…you need to call your NS ASAP!
It sounds like the seroma is something common after surgery and usually just takes a while to resolve. Otherwise it sounds like you have a pocket of CSF that is impeding the flow and could be causing your symptoms. I agree with the above, call your NS and find out what his plan is for this!
I hope your pain resolves soon! I'll keep you in my prayers!
Thank you all for your input. I thought all the same things. The idea that my cord keeps getting stuck is annoying. I didn't even think it was possible for my cord to get stuck on the "nonadhesive" material used during my C2 laminectomy.
I have an EMG for nerve testing next week, am waiting for genetics to call to set up an appointment for ehlers danlos testing (which I am doing just because of my insides - I don't have many of the characteristics but every surgeon has asked me if I have EDS becuase of my plasticity during surgery and the amount of scar tissue), have an appointment to see the NS on 9/5 (since my work changed insurance companies I have a different NS than the NS who did my surgery), and I have already had a bunch of tests done. I had a sleep study done (CPAP coming my way), an x-ray of my chest (aorta is tortuous), and a PFT which is a lung test done (in range, but on the low end so asthma inhalers are on the way).
It has been a rough couple of weeks. I thank everyone for your thoughts, wishes, and prayers.
I agree with Mandy & Texas Mom, but have asked a Neurologist friend to read over your results and offer their Neurological breakdown of the findings. Has your NS given his recommendation?
I know you are devastated and am very sorry. You have been through so much already. Just please know we are here for you.
Jeff, please know you are important to us and part of our Chiari Family.
Send me a Message if you need to vent.
It's okay to be angry & mad and upset,but you gotta get it out.
Leaving it inside will just make you physically feel worse.
You and your friends and family will be in my prayers,
I think everyone is saying the right things. See a neurosurgeon. It is very frustrating to consider re-tethering. there is no literature concerning re-tethering in the cervical spine(it is relatively unusual). the greatest body of literature is for lumbar retethering in the spina bifida patient population. Multiple materials have been used(Goretex, Teflon, absorbable materials, pericardium, autologous muscular fascia, steroid injections, etc). None of them have been shown to be better than another(it is a holy grail al neurosurgeons are searching for). the general re-tether risk is 20%. True for each subsequent retethering also. If the tissue doesn't stick to the material(the Teflon did not get stuck to), the surrounding tissue can still cause adherence. There is always an edge in a dural opening.
Changing insurance is frustrating and starting a new neurosurgical relationship particularly frustrating. However, sometimes a fresh neurosurgical perspective can be helpful. You are doing the right thing by running multiple parallel paths(neurosurgery, genetics, etc).
I wish you all the best & hope that you get to a NS SOON!
I would be rushing, because of your symptoms. Tingling & numbness or headaches are not normal. (I may have to much brain to fit into my skull, but I do not have the intelligence to interpret your MRI results :-) )
Oh my goodness, I am so sorry. Everyone is giving you great advice and it sounds like you’ve taken the right steps. Drink A LOT of water. REST AS MUCH AS POSSIBLE in whatever position you can handle. Also, caffeine can help the headaches although only here and there because they can cause headaches too of course you are in our prayers, each and every one of you
Again, I can't thank all of you enough. I really don't think I have EDS, but I am checking into it. I have never sprained anything, I don't have double joints, my skin doesn't match the profile, etc. I will watch the video tomorrow - in just too much pain right now.
I am frustrated. I have had three surgeries and each time I have had tethering. I am batting 100% - yeah for me! :( Luckily, my wife is super supportive and my students (I am a high school teacher) are just amazing. I am fighting the fight and yes it does bring me down, but most of the time I am actually doing quite well and just seeking answers. I have had symptoms since I was 16 (I am now 42) and I feel a lot better than I did presurgery #1. I can just see the light at the end of the tunnel and my stupid tethering won't let me get there!
You all mean the world to me right now. Thank you so much!
I’m sorry I wish I could help make sense out of some of that for you but I can’t. I was just newly diagnosed with Chiari Malformation I in June of this year 2012 and am awaiting my appointment with a neurosurgeon. I wish I could help you more. Good luck and please keep me posted with your progress.
Yes, sounds like you have developed a syrinx? My son had one prior to his first decompression and then it disappeared and reappeared again and needed a second decompression surgery. It has not returned. I can tell you that he had a lot of pain, numbness and tingling with the fluid. Sounds like they need to see you ASAP and discuss how they are going to remove it for you.
Jennifer, can you recommend a pediatric geneticist who gets it? Our son is 8,suffers too much I feel like there’s more to learn and do for him but it may be my resistance to accept how all consuming chiari alone can be. Thanks
I dont understand any of that. I am confused about my own case and dr tells me im fine its fine. I dont feel fine. I wish i could help, with each surgery did you feel any better. It sounds like not. I am interested in second sugery, but i have too many symptoms and no dr to help me understand. Im sorry about how you feel. Are you able to move much?
I can’t keep up. I just google imaged Eds ball bearings to see if its what my son has. I am trying to follow the connective tissue disorders, eds, genetic tests etc. Tomorrow we are going to see our neurologist, who coincidentally works in the same practice as a neurologist On the list I think it was Abby that gave me, forgive me if that’s not right, I will recheck who.
So, this doctor is a genius and open minded and diagnosed our son as having celiac (in addition to chiari) as well as having severe vitamin deficiencies. He is well versed in chiari but I think he’d be open to ordering tests that may help us make our son as comfortable as possible, but I don’t know anymore. Just wondering if anyone has a short bullet list of requests I can take to the pediatric neurologist tomorrow. I’m not sure if anyone had a chance to look at the picture I uploaded of my sons back but that’s ok, it’s a lot to follow. Hope eeveryone has a peaceful restful night
Thanks a bunch , Abby…
I need to print this out…I am ashamed to say this…but…I do not know too much about EDS…and this is just fabulous info…thanks again!!!
of course you are in our prayers, each and every one of you