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  • Shelton
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    Post count: 4

    Thanks so much for clarifying what all of that means.

    I do go to the bathroom a lot so I’m doing urodynamic testing soon to check for a neurogenic bladder as requested by my surgeon so I will see what he decides.

    Thanks for getting back to me!

    Shelton
    Member
    Post count: 4

    Thank you very much for your opinion and insight.

    I did end up getting a lumbar MRI to check for tethered cord and wondered if you could give an explanation of what the MRIs mean :

    “There is transitional lumbosacral anatomy. The transitional segment is considered to represent S1 based on the presence of iliolumbar ligaments at the segment above the transitional segment. There is a complete L5-S1 disc & a rudimentary S1-S2 disc.

    T12-L1: Small central disc herniation with cephaladad migration beneath the posterior longitudinal ligament, exerting mild mass effect on the ventral conus.

    The tip of the conus lies at the inferior L2 level and there is lipomatous infiltration of the filum terminale. “

    (Everything else is unremarkable.)

    I am wondering what to do from here and what all of that means?

    Thanks in advance.

    Shelton
    Member
    Post count: 4

    Thank you so much for providing your knowledgeable insight.

    You are right about my surgical past. I had a 13 mm Chiari malformation, full CSF blockage, and instability from the beginning. The instability was not recognized by my first surgeon. I am now seeing a knowledge neurosurgeon at Georgetown University in DC on all things Chiari. I am concerned that I may need to see a more knowledgeable neurologist and/or surgeon to make sure I’m not missing anything. Do you have any recommendations of an expert you mentioned? I have done tons of research but I haven’t seen many who would fully understand. I have heard of Dr Lebl in New York and have thought of getting his opinion but I’m not sure where to go from here.

    What could be the cause of the hemivertebrae at C4? I have researched that it can just go along with Klippel Feil Syndrome and haven’t thought much about it. Is the hemivertebrae a problem that needs to be fixed surgically? What do you mean by “you have more than just KFS because of the hemivertebrae?”

    I am getting full spine MRIs soon. If the lumbar shows tethered cord, can the pulling cause autonomic issues since it can pull on spinal cord?

    I have listed both post op and pre op results as the surgical fusion does not allow you to see the full results. This is what my MRIs of my neck show:

    Surgical Fusion from occipital to C4 level with screws intact
    Turbulent CSF flow below cerebellum & distortion of foraminal anatomy related to vertebral anomalies
    Mutiple congenital segmentation anomalies
    Right C1 is incorporated into the occipital of atlas
    C1 : congenital arch
    C2- C3 : levels are partially fused across the disc spaces and posterior elements with only rudimentary discs
    C2 : level is quite hypoplastic
    C4 : has a left hemivertebrae morphology with related levoscolosis
    Mild end plate hypertrophic changes at C4-C5
    C5-C6: uncovertebral osteophytic spurring with mild diffuse osteophyte complex; mild to moderate left foraminal stenosis (all developing after fusion surgery)
    C6- C7: diffuse disc osteophyte complex with uncovertebral osteophytic spurring without significant stenosis; mild left foraminal narrowing is present (developing after fusion surgery)

    Could any of this cause compression of the phrenic nerve like you mentioned? The breathing issues may be from the brainstem compression, I just wonder because they got better at first during recovery and now they have worsened again. Also, many of the problems are noted as being on the left side.

    Thanks so much for your help.

    Hannah

    Shelton
    Member
    Post count: 4

    Hi doctor,

    I had a decompression for Chiari malformation about a year ago and the surgery made me worse. I ended up getting a second opinion and being diagnosed with Klippel Fiel Syndrome and I am fused from skull to C2. KFS was causing clivo-axial instability and severe brain stem compression so I had another surgery fixing my alignment and fusing me from skull to C3 with my rib bone. I got a lot better but I’m becoming symptomatic again and my surgeon says the KFS is still causing some anterior brain stem compression and turbulent CSF flow. I have breathing difficulty and some heart rate issues. I also have a hemivertebrae as C4 causing leviscolosis, mild stenosis at C5-C6. I have just started diamox for head pressure and enlarged ventricles and am symptomatic for tethered cord. Do all these things go together? Is there anything else that can be done for the anterior brain stem compression? Do you accept MRIs without an appointment? I live in VA but I would like your opinion. I’m not sure what to do from here and none of my doctors have a clue except for my surgeon who I see next month.

    Symptoms include:
    High heart rate
    Chest tightness
    Back pain
    Leg pain
    Urinary frequency
    Breathing difficulty
    Headaches
    Shoulder pain
    Fatigue
    Hyperreflexive in legs & knees buckle
    Brain fog
    Gait problems

    Thanks in advance.

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