Another one with questions

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mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 7:44 AM (GMT -6)   
Hi Everyone,
I usually post on the chronic pain board but recently was sent for an MRI to see if MS might be a possible explanation in regard to my ongoing decline since my two back surgeries. It's a really long story but I had my first fusion in March of 2006. I developed Cauda Equina Syndrome after the surgery, which went untreated for 17 months, when I had to have a revision of the first fusion for a failure to fuse, the collapse of L4 onto L5, etc......anyway, to make a long story shorter, I continue to go downhill.
My walking ability has declined so much so that I am using a manual  and motorized wheelchair to get around, along with a scooter.
I have numbness in my legs, feet, thighs, buttocks and several other areas.
My bladder does not empty well on it's own, so I have to self cath in order to empty my bladder. I had urgency issues , in that I was having to find a bathroom every 1/2 hour or have an accident.  Not sure if this is related to the CES or something else.....but anyway.
My balance is way off, sometimes it seems to get a little better, but never completely recovers. I have a complete left foot drop, also assuming that that stems from surgery.
Anyway, in the last few months, I was sent for an MRI of the brain and of the cervical area to see if there were any signs of MS since my neurosurgeon feels that I have lots of signs of MS, and I should have leveled off as he explained since my revision surgery.
I fall, alot.....with no real rhyme or reason to it. I get hit with muscle spasms, that literally knock my knees out from under me. Sometimes I am able to catch myself but more often than not, I don't lately.
Recently , my fingers and hands go numb. If I am typing on the keyboard, or raise my arms above my head, the numbness intensifies.  It never goes away though. It is constant. I am having trouble holding onto things as well. My fingers don't seem to grip things as they should. The MRI of the cervical area showed a disc bulge at C5-6 or C6-7, can't seem to remember which one it was, with foraminal stenosis but it doesn't seem to cause any pain, so I am not sure that the numbness is related to it, although it could be.
The MRI of the brain showed two non enhancing lesions, one in the parietal lobe and another in the frontal lobe, deep white matter in both locations.  When I saw the neuro , he said that they were not typical locations for lesions in MS?
One other thing is that an EMG/SSEP showed a demyelination between the brain and my spinal cord. I can't remember what exactly he called it, other than that it was an abnormal SSEP, and he was doing some other testing to rule out GB, and lyme and a few other things, but we never discussed much about it....
Anyway, I am hoping that you guys can either tell me that I need to find someone who specializes in MS or take that off the table.
I am really concerned with the ongoing numbness, and the cause of it, along with the almost steady decline that I am experiencing in my ability to walk, and the falling, bladder problems, bowel issues, etc.....whatever is going on is not right....but I hope that you guys can offer my some suggestions.....
I may be leaving some stuff out, I sometimes forget things or have trouble putting my thoughts together properly.
Thanks,
Sandi

PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 7:57 AM (GMT -6)   
Oh, and I have had a huge loss in my visual abilities as well. At my last eye exam, my opthalmalogist said that I had something neurological going on.......that was a strange comment coming from him.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 7/11/2008 6:32 PM (GMT -6)   

Hi mrsm123,

Ok here is my take...............you need to find an MS specialist and go for a second opinion.  One of my lesions is in the parietal lobe.  I am not a doctor but you have a lot going on.  You have white matter lesions, you have an eye doctor that has concerns.  You have abnormal results on an evoked potentials test, and you have many symptoms. 

A diagnosis will be complicated by the other health issues you have.  I would be looking to rule out MS if you can, I believe that means a second opinion.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 6:56 PM (GMT -6)   
Thanks for responding Gretchen. I appreciate your help. Some days, I feel much older than my 44 years. I know that some of the problems are related to my failed back surgeries and the CES problems, but not all of them, and it is the worsening of those things not related to the CES thing that I think is the cause of concern.
Does anyone else go to type something and find that they are inverting the letters in the spelling of the words? Sheesh.....some days, I would much prefer to stay in bed.....
Do you have any idea where to find a neuro who specializes in MS in NYS? In the Hudson Valley area? Or is there someone here who lives in the area who might have some suggestions?
Thank you again,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 7/11/2008 10:19 PM (GMT -6)   
Hey Sandi,
Glad to see that you came over from the other board to post. I am in PA, and when i was looking for a second opinion on my diagnoses i researched some possible Neuro's in my area, I chose to go to Hershey however if i were you, i would look into going into NYC. Mt Sinai has a whole MS research thing going on, so i am sure they have great neuro's there. I would look into that. If not i am sure they can point you in the right direction.I hope everything works out for you.
Take care
Lynn

http://www.mountsinai.org/


Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil

Post Edited (Sweetlydia66) : 7/11/2008 10:44:50 PM (GMT-6)


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/12/2008 1:27 AM (GMT -6)   
theres a place in poughkeepsie ny, which may be alot closer. its called e river nuerology

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/13/2008 9:00 AM (GMT -6)   
Hi Lynn,
Thanks for your help both on Chronic Pain and here. Thanks too for suggesting reading this board. I will check into Mt. Sinai. I had my first back surgery in NYC, at NY Bone and Joint, so Mt. Sinai shouldn't be too far from there.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/13/2008 9:01 AM (GMT -6)   
Hi Casino,
Poughkeepsie is much closer to me, it's about 20 minutes from me, actually.
You said that the place is called E River Neurology? Any idea what the doctor's names are?
I will see if I can find them .
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/13/2008 3:30 PM (GMT -6)   
wow never knew any sandis till recently. Meet 3 now in the last week. I don't know the names of the doctors. I go to their other office in hudson ny. but that is the name of the place.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/15/2008 1:57 PM (GMT -6)   
Thanks Casino.......I will look for them. They are much closer to home for me, I live in Newburgh, and with my back problems, it's much easier to stay closer to home if that's possible. Otherwise it makes for a painful few days after having to travel too far.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 7/16/2008 12:13 PM (GMT -6)   
no problem sandi.  The closer the better.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/28/2008 1:41 PM (GMT -6)   

Hi Guys,

Sorry for not posting lately. I have been trying to avoid making the appointment with the neurologist Casino recommended. I keep hoping that the numbness will go away, and I can pretend like it is not something to worry about.......guess what though ? It's not working... sad It's certainly not from a lack of wishing though..

Anyway, I finally called, and I have an appointment tomorrow at 1:15, it is with the nurse practitioner, but at least it's an appointment.....I suppose that I should bring the MRI and the report?  Should I also bring the emg/ssep testing that they did on my legs? Does that even matter?

I am worried, as I'm sure that you all were and really second guessing myself. I will feel like an idiot if he says it is nothing and feel like an idiot for putting it off if he says it might be....can't win for loosing either way I suppose. confused

I have managed to lock my keys in my house now four times in the last month.....I never, ever do that.....but I do it all of the time now.....my husband is getting a bit frustrated with my absent mindedness......and me too actually.

Anyway, I will be back tomorrow, after the appointment to let you know what they say or don't say.....if you are feeling so inclined, a wish for good luck would be appreciated. And Casino, thanks for the referral...I wonder if I can put that name down for the referral? LOL.....they won't know who I am talking about, but oh well....... tongue Sandi

 


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..

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