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I am being steered towards injections despite progressive symptoms…
Spine Health | Last Active: Feb 13 4:47am | Replies (69)Comment receiving replies
@laura1970
I had the appointment with Dr. Julie Chan today at UF. Unfortunately, my experience was disappointing and discouraging to put it lightly. I was first questioned by her PA regarding why I was there, “who referred you? Did you come
On your own for a first, second third opinion or what? - which set a tone before I even met Dr. Chan. During the consultation, my symptoms — including bilateral numbness, tingling, and progressive pain — were dismissed as “not sufficiently correlating with the imaging”, as she had 2 pictures on the MRI view up and showed
Me the X-rays they took before the exam. SO, she recommends trying injections as a “diagnostic tool” and for me to see a neurologist, with the suggestion that something may be occurring within a nerve itself.
Having now received three entirely different explanations by two neurosurgeons and one PA for a neurosurgeon (who said herniated discs can move around to other places?? as to What’s going on yet same injection recommendations, this visit added to the confusion rather than providing clarity. She essentially alluded to without directly saying, I’m too young for any surgery that can help, this will not get better, she operates on patients in their 80s who “recover just fine” if it comes to her operating. Until it effects my spinal cord directly injections can but may not help.
Replies to "@laura1970 I had the appointment with Dr. Julie Chan today at UF. Unfortunately, my experience was..."
@steelme43 Heather, I know how this feels and to be disappointed when a doctor doesn't seem interested. I also was sent for a diagnostic spine injection because the doctor could not correlate my symptoms with imaging. The steroid spine injection confused him further because when it took away all my preexisting pain symptoms, he could not explain it. I was having pain all over my body and in my legs caused by spinal cord compression in my neck. Because he could not explain the results, he ignored it and refused to help me surgically.
Did you have a whiplash injury? You are pretty young to have these issues. I bring this up because a lot of doctors miss the diagnosis of thoracic outlet syndrome. A spinal injury or repetitive stress injury may be a cause of TOS. TOS will compress nerves going through the shoulder to the arm causing pain, loss of circulation (cold bluish hands), loss of grip strength and arm coordination and pain in the arm that can go up to the neck or down into the hand. When I had carpal tunnel, they missed that I had TOS.
It seems your surgeon is more concerned with wanting a precise connection between issues at the nerve roots and not with the spinal cord. Consider this, the spinal cord needs to move and shift in the spinal fluid, and can get touched in different places when you are in different body positions.
There is a condition called "funicular pain" which is what I had that confused many surgeons. The surgeons who understood this were at Mayo and that is where I had my surgery after 5 others refused me. Funicular pain can't be mapped in the body and it keeps changing. You don't know what part of the spinal cord makes contact with something impinging in the spinal canal. I started with pain in my ankles because of spinal cord pressure in my neck, and there was not any other cause for it in my spine. It was all imaged with am MRI.
If your surgeon doesn't understand this, and you bring this information forward as a patient and point out their mistake, it likely will not go well when they don't want that exposed. Your best bet then is an opinion with another surgeon. With their bold questions at the beginning, it sounds like either they don't believe you or don't understand why you have symptoms.
I would recommend an evaluation for TOS. That is treatable usually with physical therapy. You can ask to be evaluated for that. You don't have to agree to a spine injection. I had an adverse effect from mine likely due to an allergy to a component in he shot which was likely polyethylene glycol (PEG). I was getting stabbing electric burning pains after the injection as new symptoms in my hand, but it did take away all the preexisting pain temporarily.
If you find a facility that treats TOS, there you will find a place that can diagnose it, and Mayo is good for that. It's possible that physical therapy could buy you time before a need for spine surgery and help with pain if you have TOS. Myofascial release works well for that by loosening up overtly tight tissue and scar tissue in the body.
Here is medical literature about funicular pain. When I went to my final surgery consultant, I put this on the tale at the beginning and just asked if my case is like this. That lets them consider it and make a decision to investigate further
Eur Spine J
. 2010 Oct 13;20(Suppl 2):217–221. doi: 10.1007/s00586-010-1585-5
Cervical cord compression presenting with sciatica-like leg pain
https://pmc.ncbi.nlm.nih.gov/articles/PMC3111492/
What questions would you like to ask? I will answer as best I can from my experiences. I did have a cervical fusion at C5/C6 about 20 years after a whiplash injury. Aging will affect an injured spine causing degenerative changes.
@steelme43, just a quick note to let you know that I removed the imaging study that you had attached to your message because it included personal identifying information like your full name and patient ID. Feel free to post it again with these pieces of information removed. 🙂
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@steelme43 I’m so sorry to hear you had such a disappointing experience. I was hoping , as I’m sure you were, for a different outcome. I wish I could help.