@noteworthy
You may need to get an MRI of your cervical spine to see if you have a disc bulge/stenosis which is impacting your spinal cord/nerve roots/blood flow.
there are a host of conditions in the cervical spine that can cause that—i had it so badly that multiple Neurisurgeons told me my MRI showed was at risk of quadriplegia if i fell. Ultimately, part of it was also osteoporosis and an infusion of Reclast reversed enough of the damage that i am no longer high risk
Keep your apt with the Mayo. Get a 2nd apt for a second opinion. The Mayo is fine with that. I have flattening of my spinal cord and several other things wrong with my cervical spine. (Also lower spine, but as the Dr.said, “1 thing at a time”.)
-MRI, of both areas: cervical and lumbar which are 2 MRIs.
-EMG nerve conduction test to pinpoint nerve compression locations.
-X-Rays of all areas, inc flexion and extension with shows if there’s instability in your neck (a head down X-ray, immediately
followed by a head up X-ray.
I ended up in the ER with numbness when I lay down, getting worse very quickly.
My C1 is compressing the spinal cord. I’m set for surgery.
The ER (CA, not Mayo) didn’t really know what to do, except set a neurosurgeon stat apt. They took all the scans needed for a surgeon and surgery. I suggested a hard collar neck brace. (I had fusion 6 years ago of 3 cervical vertebrae further down.). The neck collar works. It’s the ONLY thing getting me through, holding the numbness to a minimum.
Sudden Cancer surgery and chemo had to be done, out of the blue, so my cervical, extremely bad problem, had to wait.
The ONLY thing that helps the numbness for me is the hard cervical collar. At night I loosen it a little. (Velcro straps are on each side.). It stretches my neck a little giving everything more room, so the numbness doesn’t increase. I got mine at the ER, but Amazon has them, plus they have replacement foam inserts for them. Mine adjusts under my chine, up and down. This is important, because for me, certain angles give me more pain. The brace keeps my neck straighter, supported and protected until I can get to surgery. I can’t put even a pillow under the C1 area, so I have a very flat, small pillow that I use, placing it 1/2 way up my head. i.e., there is nothing under the area of compression to make it worse. I sleep with a bed wedge.
It’s important to double check that your images and reports are all visible for the surgeon’s visit. I take a copy with me as well and study the reports and images beforehand, and have questions. I also bring my husband who is a 2nd set of ears and opinions/concerns, and we can discuss it afterwards.
Numbness is a big issue!!! Even 20 mins of walking brings it in, and then 3 days for it to lessen with me. I get around every day, but after trying, realized I can’t do “walking” exercise, even slowly. The Dr doesn’t want me doing any exercise; not even stretch bands.
The Mayo is very good and conservative. They give you a plan. They won’t do surgery unless your chances of being better are good enough.
Again, numbness is a stat urgent issue. If you need to, go to the ER. I am not in the health industry: I’ve just had cervical issues for 25 years. The Mayo kept me out of surgery for 20 years, where other Drs said surgery. When the vertebrae came close to my spinal cord, they said I needed it. Who knows how many surgeries I would have been through over the 20 years with other Drs.!
My best to you.
I can't get an appt with Mayo Clinic in Jax Fl as they are booked up for nerve damage, angiopathy
with type II. Don't know where to go. Not sure they are aware of the urgency.
Well I cannot get into Mayo in Jax as they are booked. They suggested Univ of
Florida, Gainesville so I called. Since there lines were down, I could not get through. I have been to a neurologist and just put me thru nerve testing, MRI of my neck and appt in Aug for MRI of lower back. This started in May and was all of a sudden and just waiting on appts. Its progressive but I do not know what can be done.
i suggest calling run and explaining you view concerned b sudan symptoms ans asking if that can wxpediwyw reserve. Sis toy rally are neurologist? Time to reach out if you did
I can't get an appt with Mayo Clinic in Jax Fl as they are booked up for nerve damage, angiopathy
with type II. Don't know where to go. Not sure they are aware of the urgency.
@noteworthy
Have you considered going to the ER for them to do MRI/other testing to see what might be causing your symptoms? You would then have some information to pursue locally. You could research good doctors/surgeons with good ratings/reviews locally so you can treatment asap.
I have had nerve testing for my arms and legs, MRI of my cervical and one scheduled for Aug 7th
of my lower back. Now I need to wait again. I am researching doctors. I'm not sure if a vascular
doc would be of help. Tomorrow I will try finding someone again. I am eating healthy, taking B vitamins and walking every day.
@noteworthy
Cervical MRI is for your neck and is different from lower back/lumbar spine MRI. Am I understanding you correctly you already had your neck/cervical MRI and waiting for lower back/lumbar MRI in August? What did your neck/cervical MRI show? This would most likely be the source of your arm/hand pain/weakness/numbness. They may want to do a head/brain MRI to rule out other conditions tied to your symptoms.
I have the normal degenerative disc disease, bulging discs, etc but the nerve testing shows neuropathy of wrist and elbow. Widespread denervation in upper
extremity indicating neurogenic process, differential to include polyradiculopathy or motor neuron disease. Not sure what that all means
but I know its not good.
@noteworthy Keep on advocating for yourself until you get a diagnosis. If this is a nerve problem, it can be a problem anywhere along a nerve path from the brain to the hand causing an issue. They may also check for a brain issue. Spinal tumors can put pressure on the spinal cord. Imaging like an MRI would be the way to look for these. You can also request an appointment at one of the other Mayo campuses which of course involves travel costs. It is normal to have to wait for an appointment at Mayo. Did you send in records and ask for a review in requesting an appointment? That's the usual way to get an appointment. If not at Mayo, go to the best place you can. If you need surgery, you want to be where really good surgeons work.
Do you have a primary care doctor helping you to find specialists for consultation?
Hi Jennifer,
I like the idea of sending the records to Mayo Clinic for a review for an appt.
I am quite sure they may think I am referring to neuropathy, a much more common issue. So I will work on all that tomorrow.
Thanks and thanks to all others that have responded. It all helps.
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there are a host of conditions in the cervical spine that can cause that—i had it so badly that multiple Neurisurgeons told me my MRI showed was at risk of quadriplegia if i fell. Ultimately, part of it was also osteoporosis and an infusion of Reclast reversed enough of the damage that i am no longer high risk
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2 ReactionsMRI and bone density scans asap. Also rx for hand therapy for certified hand therapist
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1 ReactionKeep your apt with the Mayo. Get a 2nd apt for a second opinion. The Mayo is fine with that. I have flattening of my spinal cord and several other things wrong with my cervical spine. (Also lower spine, but as the Dr.said, “1 thing at a time”.)
-MRI, of both areas: cervical and lumbar which are 2 MRIs.
-EMG nerve conduction test to pinpoint nerve compression locations.
-X-Rays of all areas, inc flexion and extension with shows if there’s instability in your neck (a head down X-ray, immediately
followed by a head up X-ray.
I ended up in the ER with numbness when I lay down, getting worse very quickly.
My C1 is compressing the spinal cord. I’m set for surgery.
The ER (CA, not Mayo) didn’t really know what to do, except set a neurosurgeon stat apt. They took all the scans needed for a surgeon and surgery. I suggested a hard collar neck brace. (I had fusion 6 years ago of 3 cervical vertebrae further down.). The neck collar works. It’s the ONLY thing getting me through, holding the numbness to a minimum.
Sudden Cancer surgery and chemo had to be done, out of the blue, so my cervical, extremely bad problem, had to wait.
The ONLY thing that helps the numbness for me is the hard cervical collar. At night I loosen it a little. (Velcro straps are on each side.). It stretches my neck a little giving everything more room, so the numbness doesn’t increase. I got mine at the ER, but Amazon has them, plus they have replacement foam inserts for them. Mine adjusts under my chine, up and down. This is important, because for me, certain angles give me more pain. The brace keeps my neck straighter, supported and protected until I can get to surgery. I can’t put even a pillow under the C1 area, so I have a very flat, small pillow that I use, placing it 1/2 way up my head. i.e., there is nothing under the area of compression to make it worse. I sleep with a bed wedge.
It’s important to double check that your images and reports are all visible for the surgeon’s visit. I take a copy with me as well and study the reports and images beforehand, and have questions. I also bring my husband who is a 2nd set of ears and opinions/concerns, and we can discuss it afterwards.
Numbness is a big issue!!! Even 20 mins of walking brings it in, and then 3 days for it to lessen with me. I get around every day, but after trying, realized I can’t do “walking” exercise, even slowly. The Dr doesn’t want me doing any exercise; not even stretch bands.
The Mayo is very good and conservative. They give you a plan. They won’t do surgery unless your chances of being better are good enough.
Again, numbness is a stat urgent issue. If you need to, go to the ER. I am not in the health industry: I’ve just had cervical issues for 25 years. The Mayo kept me out of surgery for 20 years, where other Drs said surgery. When the vertebrae came close to my spinal cord, they said I needed it. Who knows how many surgeries I would have been through over the 20 years with other Drs.!
My best to you.
-
Like -
Helpful -
Hug
3 ReactionsI can't get an appt with Mayo Clinic in Jax Fl as they are booked up for nerve damage, angiopathy
with type II. Don't know where to go. Not sure they are aware of the urgency.
i suggest calling run and explaining you view concerned b sudan symptoms ans asking if that can wxpediwyw reserve. Sis toy rally are neurologist? Time to reach out if you did
@noteworthy
Have you considered going to the ER for them to do MRI/other testing to see what might be causing your symptoms? You would then have some information to pursue locally. You could research good doctors/surgeons with good ratings/reviews locally so you can treatment asap.
-
Like -
Helpful -
Hug
1 ReactionI have had nerve testing for my arms and legs, MRI of my cervical and one scheduled for Aug 7th
of my lower back. Now I need to wait again. I am researching doctors. I'm not sure if a vascular
doc would be of help. Tomorrow I will try finding someone again. I am eating healthy, taking B vitamins and walking every day.
-
Like -
Helpful -
Hug
1 ReactionMayo Clinic Jax is all booked up.
I have the normal degenerative disc disease, bulging discs, etc but the nerve testing shows neuropathy of wrist and elbow. Widespread denervation in upper
extremity indicating neurogenic process, differential to include polyradiculopathy or motor neuron disease. Not sure what that all means
but I know its not good.
-
Like -
Helpful -
Hug
1 ReactionHi Jennifer,
I like the idea of sending the records to Mayo Clinic for a review for an appt.
I am quite sure they may think I am referring to neuropathy, a much more common issue. So I will work on all that tomorrow.
Thanks and thanks to all others that have responded. It all helps.