I no longer looked forward to sleep. Sleep in any amount was my enemy

Posted by phoenix05099 @phoenix05099, 3 days ago

For the past 7 years I have been plagued by neurological symptoms. I am a 73 yr old man with a history of cervical, thoracic and lumbar surgeries. My neck and back pain became much worse after a 2019 posterior cervical fusion. The most concerning symptom is severe pain beginning in the occipital region , in the back of my head that becomes dramatically worse when I lie down but more importantly when I fall asleep. I would come to hate bedtime. Even a simple afternoon nap was wrought with pain and discomfort. I soon realized that motion was my enemy. Any motion in my head after I had fallen asleep caused symptoms of pain

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phoenix05099 | @phoenix05099 | 2 days ago

symptoms of pain... continued. I soon discovered that my Miami J collar or Aspen vista semi rigid collar given to me after my posterior neck fusion was my new friend. I would start what would become my need to place the collar on each evening so as to make sure it was on neck before I tired and fell asleep. The collar helped to prevent a good deal of pain and discomfort, maybe aa great deal because without the collar I suffered dearly. Their was pain and muscle contractions, tingling and numbness. Emg's and nerve conduction tests. (NCS) . It started post-operatively so I was always wanting to connect it with my neck fusion. I had lots of imaging. I remember bone scans and Ct's. MRI and xrays. The normal cadre of tests to explain why all this pain. I suspect that I was even thought of being a malingerer. Perhaps someone who fabricated all these symptoms . I was a capable patient. I would write in the patient portal the symptoms I was having. During the first year post-op I had difficulty with voiding. Before Long I knew words about retention or how much urine remained in my bladder after I had fully emptied my bladder. The nurses and technicians would say they had to scan my bladder with a Ultrasound type device that displays a picture reminiscent of fetal monitoring or a radar screen......

bryanta | @bryanta | 2 days ago

Are you taking anything for pain?
I've had severe back pain and could not sleep for six weeks.
Only Gabapentin would work to block the pain signals so i could sleep.

phoenix05099 | @phoenix05099 | 1 day ago

In the interest of time I must jump ahead and give some history of the current condition and symptoms, but even this I wonder if I might reach out to the monitor @colleenyoung or @jenniferhunter to steer me in the right direction within Mayo Clinic Rochester. I have a call with Mayo Central appointment office Rochester, this morning. 10/8. It has been suggested that I might end up with a fusion of C1 to C2. I have widespread symptoms, especially disabling pain. I am currently at my most critical time, of all the past last 7 years.

Jennifer, Volunteer Mentor | @jenniferhunter | 9 hours ago

In reply to @phoenix05099 "In the interest of time I must jump ahead and give some history of the current..." + (show)

@phoenix05099 I'm sorry you are having so much trouble. Are your doctors questioning your bladder symptoms in connection to your spine issues? It sounds like they have done a lot of other related tests. I had some problems with voiding and that was caused by spinal cord compression in my neck. At this time prior to spine surgery, I was working with a physical therapist and when she aligned my spine, my bladder functioned correctly. Then when the next muscle spasms happened, it shifted my spine alignment and that caused the bone spurs from the bad disc to press into my spinal cord with greater pressure. and I had trouble emptying my bladder again. It was an intermittent problem depending on my spine alignment. Spinal cord compression is known to cause incontinence and bladder and bowel dysfunction.

It may be worth asking your doctors if there is any movement in the alignment of your vertebrae and if it may be connected to your bladder symptoms. You probably should tell them you need the hard collar to sleep if it is needed for preventing pain. The spine may change positions when laying down or standing and for some patients, if there is any instability, some vertebrae may slide forward or back or sideways. This is something to question in case your doctors haven't considered it.

As for Mayo, my experience there was surgery with Dr. Jeremy Fogelson. He is also a deformity expert. You can request that he review your case if you at the beginning of your request. Mayo doctors will need to refer you to whomever is best matched to your condition.

How did your phone call go with the appointment office?