Has anyone had a hypervascular tumor removed from spine (T12-L1)?

@cheryljar Hello and welcome to Connect. Mayo has many excellent spine neurosurgeons. I am a cervical spine surgery patient from Mayo Rochester. My surgeon is a deformity expert and does some big corrective spine surgeries as well as cervical fusions and disc replacements. He's a neurosurgeon and also did an orthopedic spine fellowship and he likes challenging cases. I was highly impressed with his skill and my results and he is a compassionate surgeon. He also teaches in the Mayo neurosurgery program. His name is Jeremy Fogelson. Here is his profile.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Are you looking to self refer yourself to Mayo? That is what I did, and I selected Dr. Fogelson and asked that he review my records. My spine surgery is a Sharing Mayo Clinic story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
To begin the process of seeking care at any of the Mayo campuses, you may use this link. A coordinator will follow up with a phone call and help you send in records and imaging for review. There is no charge to do that. Once accepted as a patient, Mayo will bill for their services.
http://mayocl.in/1mtmR63
Before you begin, I suggest check the insurance information and perhaps call Mayo's billing department and your insurance company to ask if Mayo is in your insurance plan as "in network". Spine surgery is very expensive, so you need to make sure it can be paid for.

Here is the webpage for insurance accepted at Mayo.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
I hope this works for you, and if you do become a Mayo patient, I hope you will share your experience here.

Good luck!
Jennifer

Has anyone had a tumor removed from their spine (T12-Ll)? I am not in pain but do have zapping once in a while. It's a good size tumor and they don't think it's cancer. I'm very active (running, biking, hiking) and very nervous to have surgery since there is a 20% chance of paralyze, incontinence, or more. Dr Bydon is my doctor at Mayo.

I have a tumor in my spine T12-Ll. I am very active 72 female who runs, bikes, hike and backpacks. They found the tumor 2 years ago but I feel it is changing in size. The risks are high for surgery so I'm reaching out to see if anyone has had a tumor removed from their spine and what their outcome is.

@cheryljar ,
hi. I haven't had a spinal tumor, but had proton therapy for cancer and met someone who was having proton for a spinal tumor. You might check it out https://mdproton.com/is-proton-therapy-right-for-me/can-it-treat-my-cancer/spine/#:~:text=With%20proton%20therapy%2C%20a%20concentrated,healthy%20cells%20around%20the%20spine.
Proton is painless and without anesthesia risk.
wishing you the best

@cheryljar I'm glad you're here on Connect. Dr. Bydon is an excellent surgeon and he does some very important research at Mayo on spinal cord injuries. You will be in excellent hands. I came to Mayo when I had Cervical Canal Stenosis and I was getting electrical zaps because the spinal cord was getting touched. That is a symptom of spinal cord compression. Remember, a 20% chance of an adverse complication also means and 80% chance it doesn't happen, and they have to tell you that.

With your active life of exercise, that is good, but it is worth asking how that would change after a surgical procedure. It all depends on what they have to do and if they need to remove spinal support to get to the tumor, and then how they would re-create spinal support for you. My guess is that running and biking may be too much impact for shock absorbing on your post operative spine. Hiking may be the lowest impact, and that can give you something to focus on for your recovery as a goal. Hiking is my goal after a serious ankle fracture I had 4 years ago, and I am making a lot of progress now and adding more to the effort. I hope to be able to hike in the Rockies with a backpack with my easel and paints, so I can hike to a spot, set up and do a painting on location. It's part of an art competition I am in and it keeps me focused on improving. For a long time I wondered if I could regain this ability.

It's normal to be nervous , otherwise you wouldn't be human, so let that be your motivation to ask good questions. Dr. Bydon was one of my 2 picks for surgeons when I came to Mayo as a patient, and I went with the other one because his published medical literature closely aligned with symptoms I was having that at that time and that had been misunderstood by all the surgeons before I came to Mayo. Dr. Bydon's research focuses on spinal cord regeneration and you couldn't find a better expert for a spinal cord issue.

Hi @cheryljar, welcome back. I'm so glad to hear that you are consulting with Dr. Bydon at Mayo Clinic. I've combined your 3 discussions into one so that you can stay connected with @jenniferhunter and @gently as well as others in one place. It helps them to see your journey.

Has surgery been recommended for you, Cheryl? Have the imaging studies shown that the lesions have grown?

I’ve been having some issues that I feel need to be addressed but they will not schedule the MRI until September-1 year follow up. I was also told I could do the MRI’s in my home town, which I do have scheduled now but the orders were for September and not any earlier. My primary doctor said it was between me and Mayo and she couldn’t change the date to have the MRI. I would really like to understand the surgery and what the options are.
Thank you for getting back with me.

@cheryljar Spine surgeons generally consider MRIs to be current for a year because usually the spine condition doesn't change that much in a year. If there were symptoms increasing a lot, they may do one sooner than a year. I was in that situation and had MRIs 9 months apart that showed a change in the volume of bone spurs present in the spinal canal.

It's almost August now, and September is not far away. By having the test in September you'll have the most recent imaging for Dr. Bydon which I think will be important to him.

Did you get a recommendation for a procedure or are you waiting for a first consultation with him and wondering about what the solution will be?