1. < Spine Health

Is my spine issues causing my symptoms?

Posted by kellicoopernhb @kellicoopernhb, Oct 14 9:52pm

I have a lot of issues with my spine and I recently went to a neurologist and he told me there is absolutely nothing wrong with me and it's all in my head. He told me to lose 5 lbs and get on anti depressants. I know there is something wrong with me and am going on a year now. I am a 48 year old female. Any guidance?? I am getting really discouraged.

Symptoms-
*severe Burning left thigh, Weakness.
*Right leg is numb, Weakness and right thigh is starting to burn, shin hurts
*Lumbar Back Pain, Pins and needles, Tingling
*Thorasic Back Pain
*Neck Pain, Burning, Tingling
*Arms are weak and ache
*Hands - Pins and needles
*Can barely walk and arms are very weak, I am in a wheelchair for any distance
*Internal tremors
*Brain Fog

Spine MRI Results-
-Mild Curvature of lumbar spine
-Multilevel DDD at L3,L4,L5 Modic type 1 change at L4-L5
-L1-L2 Mild Broad Based Bulge
-L2-L3 Mild Broad Based Bulge
-L3-L4 Right Paracentral Inferior disc extrusion measuring 1.3cm CC on a background of broad based bulge measuring 0.5 cm AP, along with mild facet arthropathy, causing mild to moderate right lateral recess narrowing, contacting the descending right L4 nerve root.
-L4-L5 Broad based bulge measuring up to .6 cm AP in the left paracentral location, along with minimal facet arthropathy, causing moderate right and moderate to severe left foraminal narrowing.
-L5-S1 Small central inferior disc extrusion measuring 1.1 cm CC, on a background of broad-based bulge measuring 0.5 cm AP, along with mild facet arthropathy, causing mild to moderate left foraminal narrowing.
-C2-C3 mild DDD
-C3-C5 moderate DDD
-C5-C6 moderate DDD with a broad based posterior protrusion which effaces the ventral thecal sac & contacts the ventral cord
-C6-C7 moderate DDD
There appears to be a ventral T2 hyperintense epidural fluid collection at the cervical thoracic junction which is present up to the level of approximately the T2 vertebral body. No pulsation
artifact is present within the fluid collection.
T1-2: 1 mm disc bulge without spinal canal or neural foramen stenosis.
T2-3: 1 mm disc bulge without spinal canal or neural foramen stenosis.
T3-4: 1 mm disc bulge without spinal canal or neural foramen stenosis.
T4-5: Inferiorly migrated disc extrusion at T4-5 measuring 5 mm coronal caudad by 2 mm AP. Trace spinal canal
stenosis without neural foramen stenosis.
T5-6: Inferiorly migrated disc extrusion at T5/6 measuring 5 mm craniocaudad by 2 mm AP. Trace spinal canal
stenosis without neural foramen stenosis.
T6-7: 1 mm central disc protrusion without spinal canal or neural foramen stenosis.
Central extradural/epidural fluid collection within the spinal canal at the cervical thoracic junction, unclear if this
is related to a CSF leak or other cause. This extends up to the level of T2 vertebrae.

Brain MRI Results-
The ventricles and sulci are normal in size. There are a few scattered small foci of T2 signal prolongation within the
subcortical and deep white matter of the brain. The cerebellar tonsils are in normal position. There are no masses,
mass effect or midline shift within limitations of non contrast technique. The pituitary gland is normal in size. There
is no MRI evidence for acute intracranial hemorrhage or acute cerebral, brainstem or cerebellar infarction.
No diffusion-weighted abnormalities are identified. There is no MRI evidence for extra-axial fluid collections or
subdural hematomas. Flow voids are present within the major vessels indicating patency. The paranasal sinuses
are clear. The mastoid air cells are clear. The bilateral orbits are within normal limits. The bony calvarium and scalp
soft tissues are normal.

Any thoughts? suggestions??

Interested in more discussions like this? Go to the Spine Health Support Group.

dlydailyhope | @dlydailyhope | Oct 15 6:45am

@kellicoopernhb
I am a 55 year old female and have spine issues and had similar symptoms as you. It is not in your head and your symptoms plus MRI of cervical and lumbar spine shows that you have compression of your spinal cord and nerve roots causing your symptoms. I was finally diagnosed with cervical spondylotic myelopathy (spinal cord flattening/compression injury), degenerative disc disease, and stenosis which caused daily headaches, tinnitus, neck/shoulder pain, weakness and numbness in arms/hands (affecting handwriting and I would constantly drop things). I also had bladder control issues and heaviness in legs when walking. Symptoms improved after ACDF surgery to decompress and fuse my C5-C6. This is an urgent issue because injury at that level can become permanent if not decompressed asap. I have some permanent injury to arms/hands (weakness in shoulders and hands/wrists plus numbness).

My lumbar spine had congenital stenosis, degenerative disc disease and neurogenic claudication. It caused pain, weakness and numbness from lower back/hips/buttocks down to feet. I had surgery in August 2024 to decompress/fuse L3-L5 and many symptoms have improved. Before surgery, I could barely sit, stand or walk for long without symptoms starting. My quality of life before surgery was worsening, not to mention mental health/depression went along with it.

It is really important you take your MRIs asap to a highly rated orthopedic spine specialist/surgeon and/or neurosurgeon to get multiple medical opinions and options to address your condition and symptoms. You seem to have spine structure issues affecting your spinal cord and nerve roots 2which may be causing your symptoms. Neurologists are not the right doctors to see for your condition and your neurologist should have referred you. I had similar issues with my neurologist who ignored the cervical spinal cord flattening noted in my MRI report which is serious. It seems you may have a spinal fluid leak or flow issue because your MRI notes a couple places where there is fluid build up.

I am praying you get to the right specialists and that you strongly advocate for yourself and your healthcare.

REPLY
2 replies
kellicoopernhb | @kellicoopernhb | Oct 15 10:47am
In reply to @dlydailyhope "@kellicoopernhb I am a 55 year old female and have spine issues and had similar symptoms..." + (show)
@dlydailyhope

@kellicoopernhb
I am a 55 year old female and have spine issues and had similar symptoms as you. It is not in your head and your symptoms plus MRI of cervical and lumbar spine shows that you have compression of your spinal cord and nerve roots causing your symptoms. I was finally diagnosed with cervical spondylotic myelopathy (spinal cord flattening/compression injury), degenerative disc disease, and stenosis which caused daily headaches, tinnitus, neck/shoulder pain, weakness and numbness in arms/hands (affecting handwriting and I would constantly drop things). I also had bladder control issues and heaviness in legs when walking. Symptoms improved after ACDF surgery to decompress and fuse my C5-C6. This is an urgent issue because injury at that level can become permanent if not decompressed asap. I have some permanent injury to arms/hands (weakness in shoulders and hands/wrists plus numbness).

My lumbar spine had congenital stenosis, degenerative disc disease and neurogenic claudication. It caused pain, weakness and numbness from lower back/hips/buttocks down to feet. I had surgery in August 2024 to decompress/fuse L3-L5 and many symptoms have improved. Before surgery, I could barely sit, stand or walk for long without symptoms starting. My quality of life before surgery was worsening, not to mention mental health/depression went along with it.

It is really important you take your MRIs asap to a highly rated orthopedic spine specialist/surgeon and/or neurosurgeon to get multiple medical opinions and options to address your condition and symptoms. You seem to have spine structure issues affecting your spinal cord and nerve roots 2which may be causing your symptoms. Neurologists are not the right doctors to see for your condition and your neurologist should have referred you. I had similar issues with my neurologist who ignored the cervical spinal cord flattening noted in my MRI report which is serious. It seems you may have a spinal fluid leak or flow issue because your MRI notes a couple places where there is fluid build up.

I am praying you get to the right specialists and that you strongly advocate for yourself and your healthcare.

Jump to this post

Thank you so much. I feel like I am going crazy and I am a year into this now and still no real answers. I feel like our medical system is so broken, and I am ready to go out of the country to get help because I feel like our system just has so many road blocks. 🙁

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Oct 15 1:54pm

@kellicoopernhb I am a spine surgical patient and had a cervical fusion. There is a lot listed on your MRI report that may be causing spine symptoms. I have to say "may" because I am not a doctor and cannot diagnose, but I believe your symptoms are related to your findings on your report. A neurologist is not a surgeon, and does not fix spine issues. They are like a detective to determine where pain may be coming from, and to look for malfunctioning nerves or disease that affect the nervous system. You need an opinion from a spine surgeon either an orthopedic or neurosurgeon. They address the physical problems of the spine that cause compression of nerves and the spinal cord. They may also may treat symptoms with epidural injections to delay spine surgery. Right now, you don't have a proper evaluation of your physical issues. Do you have a referral to a well respected spine surgeon?

REPLY
1 reply
kellicoopernhb | @kellicoopernhb | Oct 15 4:31pm
In reply to @jenniferhunter "@kellicoopernhb I am a spine surgical patient and had a cervical fusion. There is a lot..." + (show)
@jenniferhunter

@kellicoopernhb I am a spine surgical patient and had a cervical fusion. There is a lot listed on your MRI report that may be causing spine symptoms. I have to say "may" because I am not a doctor and cannot diagnose, but I believe your symptoms are related to your findings on your report. A neurologist is not a surgeon, and does not fix spine issues. They are like a detective to determine where pain may be coming from, and to look for malfunctioning nerves or disease that affect the nervous system. You need an opinion from a spine surgeon either an orthopedic or neurosurgeon. They address the physical problems of the spine that cause compression of nerves and the spinal cord. They may also may treat symptoms with epidural injections to delay spine surgery. Right now, you don't have a proper evaluation of your physical issues. Do you have a referral to a well respected spine surgeon?

Jump to this post

Thank you so much. I have seen 2 orthopedic surgeons, and 1 neuro surgeon. The 1st orthopedic surgeon that did my lumbar surgery a year ago told me I need fusion surgery and told me he wouldn't do it on me for 12 more years because I was to young and pretty much pushed me out the door. Then I finally got into a neuro surgeon and she says there is nothing in my spine that is causing my issues. 🙁 She told me to see a neuro so I went to see a neuro and that's when he told me there was nothing wrong with me and just lose 5 lbs and take anti depressants. Well I have lost 5 lbs and I am no better. I have good days and bad days. I then went to another orthopedic surgeon for another opinion and he told me I am fine and just change my mind set and I will be fine. So literally everyone says I'm fine but I can barely walk, I can't do my hair, I have internal tremors constantly. The neuro told me my tremors are anxiety, and I can guarantee 100% they are not anxiety. I do take gabapetin and tramadol and that helps take the edge off. I also get epidurals that haven't helped at all. SI injections do help me. It is not normal to barely be able to walk and all of the symptoms I have. I am trying to be my own advocate but really so discouraged. 🙁 Maybe this is it and I won't get better and I just need to treat my symptoms, but I was 100% normal before so I just can't accept that there is nothing wrong with me. 🙁 So just looking for feedback from others, I know there is something wrong, I just need to find the right path to help me. 🙂 Thank you for your feedback.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Oct 15 4:44pm
In reply to @kellicoopernhb "Thank you so much. I have seen 2 orthopedic surgeons, and 1 neuro surgeon. The 1st..." + (show)
@kellicoopernhb

Thank you so much. I have seen 2 orthopedic surgeons, and 1 neuro surgeon. The 1st orthopedic surgeon that did my lumbar surgery a year ago told me I need fusion surgery and told me he wouldn't do it on me for 12 more years because I was to young and pretty much pushed me out the door. Then I finally got into a neuro surgeon and she says there is nothing in my spine that is causing my issues. 🙁 She told me to see a neuro so I went to see a neuro and that's when he told me there was nothing wrong with me and just lose 5 lbs and take anti depressants. Well I have lost 5 lbs and I am no better. I have good days and bad days. I then went to another orthopedic surgeon for another opinion and he told me I am fine and just change my mind set and I will be fine. So literally everyone says I'm fine but I can barely walk, I can't do my hair, I have internal tremors constantly. The neuro told me my tremors are anxiety, and I can guarantee 100% they are not anxiety. I do take gabapetin and tramadol and that helps take the edge off. I also get epidurals that haven't helped at all. SI injections do help me. It is not normal to barely be able to walk and all of the symptoms I have. I am trying to be my own advocate but really so discouraged. 🙁 Maybe this is it and I won't get better and I just need to treat my symptoms, but I was 100% normal before so I just can't accept that there is nothing wrong with me. 🙁 So just looking for feedback from others, I know there is something wrong, I just need to find the right path to help me. 🙂 Thank you for your feedback.

Jump to this post

@kellicoopernhb I can understand a surgeon's reluctance to fuse a younger person. It may take a lot of looking until you find a surgeon who can help. I had 6 opinions, and surgeons kept refusing me because they didn't understand my symptoms and that was my only spine surgery. It was described in medical literature as a "rare presentation" of symptoms.

What was the lumbar surgery that you had a year ago? This may explain the reluctance because a surgeon doesn't want a bad result and if it's just been a year, that may be what they think. Another possibility is that scar tissue from the first surgery is causing tightness and pain.

A good remedy for that is Myofascial Release Therapy with a good PT. That may lead you to other spine surgeons since PT's rehab patients after surgery and may know some good surgeons.

Here is our discussion on MFR. I have done this to release my surgical scar tissue.
Have you heard of this before? Have you had physical therapy?

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
kellicoopernhb | @kellicoopernhb | Oct 15 4:52pm

My family thinks I'm crazy because I keep trying, and I just need to find the right dr to listen to me and figure it out. I tried PT and they said it was making me worse. I am not far from Sedona, maybe I should look into this MFR and see if that will help. I will look into it right away, I will try anything. Thank you so much.

REPLY
1 reply
smn1 | @smn1 | Oct 16 8:55am

Kelli, Ur not crazy trust me I'm in something very similar. But what spine surgery U had. As well as when an How U were 100% fine before, would be helpful to add. Thanks

REPLY
dstone501957 | @dstone501957 | Oct 16 9:44am
In reply to @dlydailyhope "@kellicoopernhb I am a 55 year old female and have spine issues and had similar symptoms..." + (show)
@dlydailyhope

@kellicoopernhb
I am a 55 year old female and have spine issues and had similar symptoms as you. It is not in your head and your symptoms plus MRI of cervical and lumbar spine shows that you have compression of your spinal cord and nerve roots causing your symptoms. I was finally diagnosed with cervical spondylotic myelopathy (spinal cord flattening/compression injury), degenerative disc disease, and stenosis which caused daily headaches, tinnitus, neck/shoulder pain, weakness and numbness in arms/hands (affecting handwriting and I would constantly drop things). I also had bladder control issues and heaviness in legs when walking. Symptoms improved after ACDF surgery to decompress and fuse my C5-C6. This is an urgent issue because injury at that level can become permanent if not decompressed asap. I have some permanent injury to arms/hands (weakness in shoulders and hands/wrists plus numbness).

My lumbar spine had congenital stenosis, degenerative disc disease and neurogenic claudication. It caused pain, weakness and numbness from lower back/hips/buttocks down to feet. I had surgery in August 2024 to decompress/fuse L3-L5 and many symptoms have improved. Before surgery, I could barely sit, stand or walk for long without symptoms starting. My quality of life before surgery was worsening, not to mention mental health/depression went along with it.

It is really important you take your MRIs asap to a highly rated orthopedic spine specialist/surgeon and/or neurosurgeon to get multiple medical opinions and options to address your condition and symptoms. You seem to have spine structure issues affecting your spinal cord and nerve roots 2which may be causing your symptoms. Neurologists are not the right doctors to see for your condition and your neurologist should have referred you. I had similar issues with my neurologist who ignored the cervical spinal cord flattening noted in my MRI report which is serious. It seems you may have a spinal fluid leak or flow issue because your MRI notes a couple places where there is fluid build up.

I am praying you get to the right specialists and that you strongly advocate for yourself and your healthcare.

Jump to this post

My issues are almost identical to yours, most severe at C5-6. Most recent MRI was on Oct 10, 2024. Two different neurologists totally ignored my symptoms and headed in separate wrong directions. My recent MRI proved them to be wrong. The only added symptom I experience is very bad body chills. These were always dismissed as an undetermined autoimmune disease. I have seen information and heard from someone in this group and an ER Doctor that did say Compressed nerves can cause body chills.

REPLY
charliesophiedaisyro | @charliesophiedaisyro | Oct 16 10:19am

Go to the Mayo Clinic in Rochester, Minnesota. Great medical institution. I have been there for trigeminal neurology from a car accident. After years Mayo helped. I now have spine issues--4/5 with protruding nerve. I live in NC so will check with neurosurgeon here first. If not pleased I will go to Mayo in Rochester. Not all Mayo Hospitals due spine surgery. I just checked. Good luck!

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Oct 16 10:42am
In reply to @kellicoopernhb "My family thinks I'm crazy because I keep trying, and I just need to find the..." + (show)
@kellicoopernhb

My family thinks I'm crazy because I keep trying, and I just need to find the right dr to listen to me and figure it out. I tried PT and they said it was making me worse. I am not far from Sedona, maybe I should look into this MFR and see if that will help. I will look into it right away, I will try anything. Thank you so much.

Jump to this post

@kellicoopernhb If you are close to Sedona, you can go to John Barne's clinic, Therapy on the Rocks. There are a lot of therapists who work there. They will understand spine issues. John Barnes is a spine surgery patient who had a failed fusion according to my PT who has trained with him. There are some good medical spine centers in AZ, Mayo has a campus near Phoenix, and also there is the Barrow Neurological Institute. Myofascial release is like stretching and massage as opposed to strength training in standard PT. The goal of MFR is not to cause further pain, but to release the tight tissue that is causing it.
https://therapyontherocks.net/

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