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Old 09-25-2012, 07:16 PM   #1
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Question Should I even bother

I'm 44 years old. I have an appointment to see my NS in 4 weeks. I'm pretty sure he will say surgery in my neck since MRI says Displaced Spinal Cord and Dural Sac. Given my history, should I even bother, I've got/had neuro symptoms for so long already, what's the point? Should I just get a reservation at the local nursing home for total care? I feel like that is just around the corner for me... I don't take pain medicine or muscle relaxers. I either have adjusted to chronic pain, or I don't have that much just occasionally I notice it being bad. I had L4-5 micro discectomy twice - once in 2003 again in 2005. I have right foot drop since 2005. Right calf mild atrophy. I had Guillain-Barre 2008. Also MRI of brain in 2008 says remote infarct right middle cerebral artery (I think this was probably in late 1990's when doctors said i was having hemiplegic migraines I was 28 years old.) I have caudle equina since 2010, bladder straight catherization, neuropathy legs, saddle anesthesia but stabbing pain in groin sometimes. Use wheelchair most of the time. I fall down all the time. I was checked for ALS in ALS Clinic in 2009 and they said no not ALS. I had/have babinski reflex present bilaterally, tone increased, absent bilateral ankle reflexes. Since 2010 I have been getting progressively worse. My symptoms now are head pressure, numbness in right side of face at times, sudden stab head pain, vision changes (found out I have central serous retinopathy and cataracs), memory loss, jumpy/scared easy, depression, I shuffle walk, all movements are very slow. (takes 20 minutes to make sandwich, just slow not from pain,) neck pressure, arm and leg twitches. Right side lower rib bee-stinger pains occasionally. Tight or tearing sensation in thighs. Feet up to mid calf turn bluish-black when I stand up. Hands and arms weak. When I turn my head I get huge pressure in brain. My MRI's last week said Brain: focal lesion adjacent to right atrium likely dilated perivascular space. Cervical: C3-4 lateral bulging disc. C4-5 bulging disc laterally on the right side. C5-6 large extra dural lesion is seen on the right side in the lateral recess area. This is a combination of bony spur and soft disc. right neural foramen is stenotic. Spinal cord is displaced. C6-7 bulging disc toward the left side. Thoracic: Small extra dural lesions are seen on left side at T6-7 and T7-8, these are small disc bulging. Lumbar: L4-5 type 2 endplate degenerative changes and degenerative disc disease are seen. Disc space is markedly narrowed. Laminotomy changes to the right side. Midline disc protrusion is seen. L5-S1 left paracentral disc bulging.

 
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Old 09-25-2012, 08:52 PM   #2
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Re: Should I even bother

Yes, you should bother. The cord and dural sac compression/displacement in the neck is most likely responsible for the head pressure and pain, and arm pains and weakness. That should be relieved with surgery and will preserve your functioning in the upper extremities and allow the spinal fluid to circulate. With all you've had wrong with your spine, a stroke at 28, has anyone ever checked you for a connective tissue disorder, like lupus? It could be related to all the spinal issues and the stroke if you have antiphospolipid antibodies as well. At 44, you have way more connective tissue failure than anyone your age should have. I would bet there is an underlying disease that has never been identified. I would ask for an ANA, antiphospholipid antibodies, sed rate, CRP, rheumatoid factor, and do it preop, so you can have preventive treatment to avoid a post op stroke. Did you ever have a work-up to find out why you had a stroke at age 28? Please ask for these things. It sounds like you may have Raynauds too, the blue black discoloration of your feet and legs, which goes right along with a connective tissue disease. Best of luck and keep us posted. Lupus can cause cauda equina syndrome too.

Last edited by ladybud; 09-25-2012 at 08:55 PM. Reason: added last sentence

 
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Old 09-28-2012, 10:29 PM   #3
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Re: Should I even bother

I hope you read the reply from Ladybud. Your hopelessness is a product of your situation. It is up to you to create a better one. You are your own best advocate. No one knows your body as you do. No one feels the pain that you feel.

You only get one life as you know it. Please follow up on your symptoms and fight for your right to a decent life.

It may not be pretty butterflies and roses and lilting music in the background. But it is important.

That is all that matters.

I will not come to your pity party but I will come to your "I am glad I bothered party"

 
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Old 10-18-2012, 03:43 AM   #4
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Re: Should I even bother

I saw the surgeon yesterday, it took a long time to get in to see him! He says no surgery, (yippee!) but is refering me to a neurologist. Says my problems are from Chronic Inflammatory Demyelinating Polyneuropathy because I've had Guillain Barre. I had no reflexes in my ankles or knees when he checked them. Muscle atrophy, fasiculations, weakness, etc..... My labs showed that my CRP C-reactive Protein was very high (inflammation) but the ANA, sed rate and all my other blood work was normal. So another long wait to see the neuro.
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geneticroulettemovie.com CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY, GUILLAIN-BARRE, B&B INCONT. SPINAL STENOSIS, L4-5 DISCECTOMY

 
Old 10-18-2012, 08:56 AM   #5
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Re: Should I even bother

Well, the CIDP explains some of this, and that will help your understanding of the problems. I hope the neurologist can see you quickly. I have seen CIDP mentioned on these boards, so you might want to do a search for it and find some other folks who are dealing with it. Perhaps the neurologist will have some treatment suggestions that will calm down the inflammation and restore some of your function. Fingers are crossed!

 
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guillain-barre syndrome, myelopathy, spinal cord compression, stroke



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