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Thread: SYRINX @ umdnj Newark N.J. 10/21/2017

  1. #1

    SYRINX @ umdnj Newark N.J. 10/21/2017

    Hello, C-6 Asia A Complete here currently admitted @ UMDNJ Newark N.J. I have been dealing with a Sryinx that spans from my C-2 down to my C-5 for 5 years now.
    For the first 2 years I was a patient of Dr. Brooks @ Kessler Rehabilitation in West Orange N.J. My pleas, my tears, my nerve pain, my spasticity, my lack of temperature perception, the numbness and loss of motor function in my arms, the loss of function where all ignored by Dr. Brooks and she directed her staff to ignore them as well. While performing a routine bladder scan with Dr. L feom Kessler Urology he suggested I get an MRI of my c spine based off of the same symptoms I had been suffering under Dr. Brooks for years... A Urologist diagnosed me with a cyst on my C -Spine! Think about that....
    In Jan 2015, I had a medical transport company take me to the e.r @ UMDNJ Newark N.J and drop me off because I could not get a Neurosurgeon or their staff to even call me back and was becoming more paralyzed.
    Once Dr. Goldstein who is V.P of neurosurgery @ UMDNJ Newark N.J saw the images he decided to perform a C-Spine lamanectomy emeidiatly (9.5 hours). Untethering my Spinal Cord, removing my hardware from my initial injury and popping the 5cm Syrinx(cyst) located attached to my C-2 that was filling up with Cerebral Spinal Cord Fluid for years.
    I was told the surgery was a huge success of course and my symptoms should slowly subside by Dr. Goldstein. But I was also told by Dr. Goldstein himself that if I was still very symptomatic or worse in 1 years time. He would seriously consider going back in to place an electrode of some kind on my C-Spine for the neuropathic pain I'm suffering from.
    In August of 2016 after doing a CT Mylogram of my C-Spine to compare to the CT Mylogram from before my surgery. Dr. Goldstein told me "@ least my Thoracic Spine looks ok". When I asked about the Electrode he mentioned the year before that would help me if I was still symptomatic? It was like I had invented it in my head and it doesn't exist.
    I was then forwarded to Dr. Kaufman who is the director of Anaesthesia and Pain Management @ UMDNJ Newark N.J. after months and months of complaining about back pain and the numbness and loss of motor function in my arms and hands. Dr. Kaufman suggested I do a trial for a Baclofen pump because they have helped many people in my position and multiple medications can be put in the pump at the same time to address multiple symptoms. So I did the trail and with a significant bollest of Baclofen I felt some relief. The pump went in and I was told it would take "A couple" of months to dial it in. That was May 2017 and after multiple attempts to adjust the pump 4/5 times my symptoms have catastrophically returned. After informing Dr. Kaufman and every member of his staff of my advanced symptoms I was told to "hang in there, your doing great"...
    It got to the point where my face is now becoming numb and feels very diferent than normal. My hands are almost useless and my core is basically non existent. I can't even hold myself up in my wheelchair without falling forward.
    I had my brother who is a Police Officer drive me to UMDNJ Newark E.R and bring me in. I was given an MRI emeidiatly and told by one of Dr. Goldstein's resident surgeons "my Sryinx(cyst) has returned and has gotten way worse", "hang in there and Dr. Goldstein will be there shortly to talk about it with me". I was told not to eat or drink anything because Dr. Goldstein wants a new CT Mylogram of the C-Sine with contrast to compare to the old and also to get a good look at the new "threat"..
    I heard nothing from Dr. Goldstein himself and that night a different Neurosurgery Resident came to my room and told me there is no change in my syrinx since Aug 2016????? When I questioned him and mentioned that a Resident from the same group had told me in fact there where significant changes in my Syrinx he got visible upset and when I asked to speak with Dr. Goldstein directly he told me to make an outpatient appointment? So the next morning I placed a call to make an appointment with Goldstein through his Nurse Practitioner, I still haven't even gotten a phone call back and I'm admitted @ UMDNJ Newark N.J attached to their office...
    In this Hospital bed in the past week I have had even more loss of function, more body tremors and way more numbness, the Neurosurgeons refuse to see me and believe they can do nothing to help me!? Pain Management is suggesting I go back on the meds i got the baclofen pump to replace, which did almost nothing anyway.
    Dr. Goldstein told me himself that to get the best view without opening me up he would use a CT Mylogram with contrast , however his resident said based on mri pics nothing has changed? I am pleading with hospital staff and was wondering if any of you have any good advice?
    This is not an attack on Dr.Goldstein, I just am having incredible neurological symptoms and I'm tired of falling through the cracks. @ 38 years old I feel as if I still have a lot to offer life and the people who love me.

    I'm not a Neurosurgeon but while reading the mri report I am assuming that when it says I have indeed retethered my Spinal Cord the person who took the mri isn't lying in the report.
    Last edited by catlikekg; 10-21-2017 at 10:51 PM. Reason: Tried to upload mri but it was to big

  2. #2
    Senior Member Norm's Avatar
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    I would contact Dr. Barth Green at the University of Miami school of medicine. Which is affiliated with the Miami Project to cure paralysis. And get a second opinion by him.
    "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

    -Christopher Reeve on his Paralysis

  3. #3
    Agreed! I guess when you have a neurological condition that they haven't treated or know anything about and you don't follow their broken agenda they destroy your name in the computer and keep bouncing you around.
    Now they want me to go back to Kessler? I must be missing something? I'm becoming more paralyzed all the time.

  4. #4
    I think it’s also probably worth reaching out to Scott Falci in Englewood, Colorado. He runs the rehabilitative neurosurgery stuff at Craig. My experience of his team was very very good.

  5. #5
    Ty guys! I don't have the resources to get to them I live alone and @ this point I can barely get out of bed. "Hang in there Ken, your doing great" is what I'm told. Or "I can hurt you but I can't help you".
    The Syrinx makes my bladder spasm so much nothing can stop me from contracting UTI's, and now I'm becoming resistant to antibiotics.... which make the nerve pain and blood pressure spikes catastrophic to say the least.

  6. #6
    A Baclofen pump helps spasticity only. If pain is cause by spasticity or is present it might diminish pain but will do nothing for numbness etc.. Also they usually put it in upper thoracic so it does not help the upper extremities much.
    Are you on an anticholinergic for bladder spasms? Botox would help. You can see a urologist as botox to bladder.

    Syrinx are very controversial and most neurosurgeons are very, very hesitant about doing anything about them and just as yours did, it came back and I guess now he doesn't want to do any surgery because he feels it is futile.
    You might try contacting some of the doctors mentioned and seeing if they will review your films/history and offer their opinion.

    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  7. #7
    Quote Originally Posted by catlikekg View Post
    Ty guys! I don't have the resources to get to them I live alone and @ this point I can barely get out of bed. "Hang in there Ken, your doing great" is what I'm told. Or "I can hurt you but I can't help you".
    The Syrinx makes my bladder spasm so much nothing can stop me from contracting UTI's, and now I'm becoming resistant to antibiotics.... which make the nerve pain and blood pressure spikes catastrophic to say the least.
    You may be able to consult with Dr's. Falci and Green without travelling,call or email their office and see if they'll review your scans and reports online,it's worth a try.Have you looked at any Drs. in NYC? You'd be surprised what a difference a few miles make.Mt.Sinai is a spinal cord center,NYU and Columbia Presb.have excellent neuro depts.I know this is late but the time to consult these forums is before you undergo a major medical procedure.

  8. #8
    No, I haven't really looked elsewhere until now. I had a lot of faith in Dr. Goldstein but he told me himself his team lost 3 people this year and isn't running optimally. And that was blatantly clear from the hospital bed! I was admitted for 10/11 days and he found out I was there the day before I left when he was performing surgery? He told me that himself.... his Intern/resident/student/Drs? I don't know what they are but he has a systemic issue there!
    I appreciate all of your help guys please keep it coming!

  9. #9
    Ty sir, big help!

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