Spinal cord biopsy: Do the benefits outweigh the risks?

@upnort I have read your other posts and you are in a difficult place with no answers and the possibility of things getting so much worse in the future. Your neurosurgeon is the best one to answer your questions about the risk and details of the biopsy procedure as well as recovery afterward. From what you posted before the risks included paralysis which makes sense if nerve tissue is removed. The spinal cord does not heal easily from injury. Dr. Mohamed Bydon (spine neurosurgeon at Mayo) is researching spinal cord regeneration and stem cells and has had some initial success.
https://www.mayoclinic.org/biographies/bydon-mohamad-m-d/bio-20147826
You might ask your neurosurgeon if they have consulted Dr. Bydon about what treatment could be done if the biopsy causes damage to the spinal cord and loss of function. That may be tough to answer since they don't know the cause of the lesion or if it is cancerous. It it was me, I would want an opinion from Dr. Bydon. I found this link about his research area and it mentioned genetic testing for disease. Has anyone done genetic testing that may lead to a clue?
Here is the link: https://www.mayo.edu/research/labs/neuro-informatics/research-activities/genetics-spine-disease-spinal-regeneration
https://www.mayo.edu/research/labs/neuro-informatics/research-activities/spinal-cord-injury
If you go to this Mayo News Network link, there is a spinal cord injury patient story about Dr. Bydon and a video.
https://newsnetwork.mayoclinic.org/discussion/case-report-stem-cells-a-step-toward-improving-motor-sensory-function-after-spinal-cord-injury/
Do you have someone to help you at home? Being a primary caregiver is difficult enough by itself and further complicated by your own health issues. These are very difficult decisions as to what to do, and there may not be other members who have had similar experiences because of the rarity of the condition. You are right to ask the question, even if all we can do is lend a caring listening ear. I hope you get some answers without loss of function and ability.

Jennifer

Hi upnort. I wanted to let you know that yes, the benefits of a biopsy of a spinal cord lesion, especially at Mayo Rochester, far outweigh the risks. They would be biopsying a lesion which is a growth, that is on and attached to your spinal cord. That is different than biopsying the spinal cord. The former is less risky than the latter. A 2 time cancer survivor because of Mayo Rochester MN and a spinal facietomy, times 2, laminectomy times 3, 2 cage placements and i dunno how many screws and whatnots, I am back doing what I love, in zero pain, on zero pain meds, and cancer free. You want to rule out a metastasis of your prostate cancer, or another type of growth, which could be benign, and removed, and the knowledge will help your everything, no matter what the result because us humans do not do well when we have only the unknown. I would trust the Neuro spinal teams at Rochester with my adult children or even my Dad. Please get in there. Take care. I wish you only the best. I too live in WI, and will never find on my team so GO Green Bay! Most people nowadays don't remember the late 70s and early 80s when us Packer fans we in a similar young team situation which I find k8ndof fun and funny now at my age. Please post again, I want you to get well. -mary

Dear upnort, snap. I forgot. The neurosurgery team will answer any and all questions related to the time needed for the procedure, 8f its daysurgery, etc., and the medical social work department can help you navigate similar questions too. Just call the main number 507.284.2511 and you'll get the Operator. Just ask for Medical Social Work, and if they are on the phone, you'll go to their voice mail. Leave a message, and they will call you back. Mayo will not leave you wondering about things. Call your surgeon/Doctor and say yes. They will walk you through all of the procedures and things.

Good luck talking with your neurosurgeon. Both that have operated on me (SCS and pain pump) have little or no interest in answering questions related to the device. One told me. "I just put the unit in. Ask your pain specialists any questions related to the workings of the unit". No wonder I am so disappointed with the medical community.

Sorry to hear about your negative experience with your neurosurgeons.
Through my four year journey of chasing the origins/cause of my unknown disease, there have been many disappointmennts concerning the medical community, including this head shaker from last week:
My local neurologist, after reviewing my most recent records from Mayo, explained my current medical status with her and our local clinic this way: "Advise that you continue to follow with Mayo and further follow-up with me is not warranted at this time. I do not have any addditional information to offer regarding the recommendations from Mayo and would not follow for now as it appears they are taking over."
I received the following from Mayo neurology the day prior to the above: "It is important to maintain communication with the providers outside of Mayo Clinic who deliver medical care to you. I would encourage you to provide copies of the clinical information to your medical provider."
Too many times, it seems, members of the medical community do not - or will not - communicate with each other, either as fellow physicians or as members of medical departments. Where is the teamwork, collaboration, and cooperation? At the end of the day, shouldn't the conversation be about the patient rather than bruised egos?
Perhaps those in the medical communities need reminding of the long standing "oath of ethics", in part "..I will remember that there is an art to medicine as well as science, and that warmth, sympathy, and underestanding may outweigh the surgeon's knife or the chemist's drug...I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery...may I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help..."

I am sorry you have such a negative experience with medical professionals. I was one for 40 years and it smarts still after retirement. I can only remind you that prior to Obama (ACA) Care offering and providing health insurance for millions who did not previously have access to affordable the access to care was fairly smooth. Unfortunately our medical establishment was blindsided by the sudden influx of newly enrolled individuals and families and we did not have enough doctors, nurses, support staff, medical beds etc. and we are still living with this shortage. Covid brought the shortage to light in blaring and glaring headlines of overcrowded hospitals. There is still a shortage of Family Practice and Internal Medicine doctors as well as Nurse Practitioners and Physician Assistants to provide general care to the populous. Providers as a whole do not have the time to call and speak with other docs to collaborate because of time constraints, demands of the job, productivity requirements, family responsibilities, etc. Hopefully shared medical records can decrease some do the lost communication but I feel we need to be our own best advocate. In retirement I’ve seen how my care changed when transitioning from care giver to care needer and I understand it but don’t necessarily like it either.

I had a 20 minute phone conversation yesterday with my neurosurgeon's nurse regarding my potentioal spine lesion biopsy. The biopsy would be a full surgery, 3-4 hours. The neurosurgeon would make a 2"-3" incision and take a sample of the lesion. I would be in the hospital for two days. The possible risks include but not limited to sensory changes(in addition to the numbness from toes to waist I already have), bladder function, infection, existing symptoms worsening, stroke, or paralysis. Those possible risks aside, once the tissue is biopsied, perhaps they would be able to determine if the lesion is inflammation or a tumor. What would a treatment for each look like? After treatment, what would my functional status be? What's the end point if, after the biopsy, we still don't know what the lesion is? What if my option is to do nothing? Do I go from a walker to a wheelchair? Will the numbness continue to spread, eventually rendering any mobility "null and void" ? What will the quality of life look like at this point? Nothing was mentioned about a CT-guided percutaneous vertebral biopsy - a minimal invasive ,safe, and accurate procedure for definite tissue diagnosis of a vertebral lesion - (often best alternative to a surgical biopsy). I am 73 and the primary caregiver for my wife, who is in the middle stages of Alzheimer's. My biopsy decision affects not only my life but the life of my wife, and my interaction with my two grown sons, granddaughter, and three siblings. Again, I do want to become my own best advocate, so the more information I can have, the more confident I will be to make an informed decsion regarding a lesion biopsy of the spine. I have a video conference with my Mayo neurologist on Friday. I am hoping he will provide some more answers to help guide my decision. I would hope to make an informed decision by the weekend. As of now, with the information I have, the risks seem to edge out the benefits of a spinal lesion biopsy.

@upnort I know this is a very difficult decision that must be made with minimal information. In your comments, you seemed to be more at ease with a minimally invasive procedure with image guidance, than an open surgery. This is something to discuss at your next appointment. Minimally invasive surgery isn't always better. In an open surgery, the surgeon can see the area, and that also uses image guidance to make sure they are in the correct place, but they have the advantage of being able to see the lesion. Open surgery may also give the option to examine the tissue in pathology quickly during surgery rendering a treatment decision. If it is found to be malignant, they may be able to remove it on the spot and avoid another surgery. This is something to ask about, as I am not a surgeon and I just think this may be a possible option.

There's also the question of if you choose not to have the biopsy, will you wonder what could have been? If the condition worsens and you don't know if treatment could have helped, that would be a difficulty too. If you didn't have the responsibility of being the caregiver to your wife, would this be easier to decide what to do? Perhaps, if you have help, it would be better.

I know you have a lot of responsibility for your wife, and that is hard enough by itself. I hope you can find someone who will be able to help you. If you know you have some help (even temporary), that may make your decision as to your own treatment a bit easier. Do you have family or a pastor or church that you can reach out to for a bit of comfort or possible help with chores or groceries?

Jennifer

If I was you, I’d explore the CT guided percutaneous vertebral biopsy because it is minimally invasive. It sounds a lot safer than the alternative. Being under anesthesia for 3 to 4 hours is not good for elderly people in general. It can affect you mentally possibly putting you into the situation your wife is in. My partner had his hip replaced and although I urged him to have a spinal rather than general anesthesia , he chose the latter which affected him mentally. He has virtually no short term memory now and repeatedly asks the same questions over and over and he was not like that prior to the anesthesia.

Also, regarding the surgeon being able to see the lesion better in open surgery, my doctor found a small tumor in my liver by accident while having a CT scan done of a nearby area. He then ordered an MRI which showed the tumor as benign so I didn’t need surgery. I realize this doesn’t take care of your symptoms, but I would still try the minimally invasive procedure first.