Herniated disc

@ktgirl Hi Carol. This is a long post. Let me know if you have further questions. Your responsibility is to look out for yourself, and your doctor should be supporting your decisions to get the best care that you can for yourself. As patients, sometimes we think a person is upset, but in reality they are not, and you won't be the first patient to get another opinion somewhere else. Getting other opinions is common and should be encouraged by your doctors for major surgery. There are a lot of referrals in house to try to keep a patient within a hospital system that is run for profit. That's different at Mayo too as everyone is an employee. They will refer you to other specialists as needed, but your physician doesn't profit from your care. They are paid a salary as an employee and are not an owner of a medical group. It's a big decision when you chose to have surgery and you'll get different opinions and different answers sometimes and biases because of possible profits. It's up to you to chose the path to the best possible care and outcome. If your doctors are not putting your needs first and assessing all the connected issues, they are not really focused on you. It will be different when you get to Mayo. I think you made a great choice to go there for an opinion.

I don't expect a new MRI to be done of the same area as was done a month ago as long as the images are good. When I came to Mayo with an MRI that was several months old, they didn't redo it, and I asked for MRIs on the rest of my spine to rule out other issues because I had pain all over my body caused by cord compression in my neck. For me, it helped me to understand how the procedures work and to visualize what is done during surgery. Some patients don't want to see the animated videos that explain things, but since I have a science background, it helped me understand how to fix the problem. By the time I got to Mayo, I was relieved and knew that I was finally going to get help after 2 years of being turned away elsewhere. It is stressful to have a medical problem when no one wants to help. Be prepared to explain the details of your symptoms and when it is at it's worst or best, etc.

When you get to Mayo, what you can expect is doctors who care about you. If you do have surgery on one level, it is possible to have a fusion without hardware and stay in a neck brace until bones fuse. That is what I chose and I don't have to worry about possible hardware complications. First, they need to evaluate the problem and create a treatment plan. If you are looking at surgery, here are questions from my list. You likely won't have time to ask everything, so pick and choose what is important to you and bring the list with you. The first question should be with your insurance company to ask if your treatment will be in network. Also ask your insurance company about MRI imaging. My insurance does not want to pay for MRIs at hospitals and wants to have them done at independent imaging centers because they are controlling costs.

My surgeon did the entire procedure except for closing the incision. That was done by doctors in the neurosurgery program (7 year program at Mayo) and they also visited me before and after the procedure, wrote precsriptions, and were on call for any issues post op. My surgery was and hour and a half with just a single level donor bone implant. I could have had an artificial disc, but I wasn't the best candidate for that because of 2 mm of backward slipping C5 over C6. I asked the surgeon's nurse to hold my hand, and she did in the operating room. I was actually curious about looking around in there and I saw my photo on a monitor with my information. I think you will get to Mayo and relax. There is a lot to ease your mind, great art work, piano music, and pretty places to hang out while you wait for appointments, and you'll be busy with the schedule of testing, etc. You can take a favorite photo with you, or a music player.. what ever will help. I consider Mayo to be my happy and safe place. They changed my life. I never felt that way at any of the other places with surgeons who saw me before Mayo; there were too many unknowns, unanswered questions, and attitudes, and I didn't feel welcome. All of that makes a huge difference in having a great recovery. You will be in great hands.

Here is my list of questions:

1. What type of surgery are you recommending? Why? What is the specific anatomic lesion being addressed? Have them show it to you on the imaging.

2. What is the natural course of my condition if it is not surgically addressed? What are my non-surgical options?

3. Why does the surgeon recommend this specific procedure? What are the potential results for this surgery? Why am I a good candidate for this surgery?

4. What is the source of the pain that is being addressed? How do you know this?

5. Please explain the procedure in great detail.

6. What products and implants are used? Is everything to be used FDA approved for this application?

7. What are the chances that the osteophytes will regrow? If so, what will minimize that chance?

9. What are the different surgical procedures that can address my problem? What are my choices?

11. What would you recommend if I was your friend, wife, sister, or daughter?

12. How long will the surgery take?

13. What are the possible side effects, potential risks, and potential complications? Please explain the risks and how they relate to me personally.

14. Do any of the materials used increase my chances of getting cancer? Are there common reactions to implants, metal sensitivities, plastic sensitivities, toxicities? Do I need to be tested for possible adverse reactions?

15. What happens to an artificial disk as it wears? How long would it last? Any not made of metals?
Are the metals used the same or different within the implant?

16. How great is risk of adjacent segment disk degeneration? Are there other discs that show degeneration now that could become problematic in the future? Do you think I will have a problem in the future on adjacent levels?

17. Do I have to have a metal plate on my spine? Is there another way to stabilize the spine?

18. What if, during my surgery, you encounter a different spine issue than you expected?

19. What is the risk/benefit ratio (the chance of a bad outcome as weighed against the chance of a good outcome)?

20. What are the standard safety and cross check procedures to insure my safety during the surgery?

21. Do you use neuromonitoring during surgery?

22. Are you using robotic assistance or free-handing?

23. Do I need to donate my own blood? If yes, why?

24. Do you perform the whole procedure? Will any students and/or other surgeons be doing any parts of the operation? If yes, What are their background and qualifications?

25. What are the long-term consequences of the proposed procedure?

Questions about the surgeon

1. How many times have you done this procedure?

2. Are you fellowship trained in spine surgery? This is more important if the surgery is a fusion, artificial disc replacement, or other more extensive procedure.

3 . If I want to get a second opinion, who would you recommend?

4. What is your personal success rate, and how many of this type of surgeries have you done?

5. How often will I see you after my surgery?

6. What expectations do you have for my recovery?

Thanks so much for your response. I’m definitely going to copy off your questions. I had my shoulder replacement done there in 2012. At that time I had no idea what to ask. I wish I would have had a better idea what I was getting into. The surgery went fine. My sister-in-law works at Mayo and she looked at the incision the day after the surgery and said it was the cleanest incision she had ever seen. However I did therapy back home and I feel like I wasn’t made aware of what to expect. When I went back to Mayo a while later - not sure how long after - I saw a physical therapist at Mayo. I wish I had seen someone there after my surgery. I’ve questioned how my doctor here acted when I saw her. I’ll probably see her again for my annual physical and see how she is then.

Anyway, thanks again for your help. It’s so good to hear from someone whose been down this road before. I’ll let you know how it goes next week when I get to Mayo. I’m so glad my back is feeling better now. It should make the trip there easier.

@farmgirl57 Hi Carol. It sounds like you are doing great and handling this well and directing your path down the road. I was thinking last night that I should have mentioned the possibility of nerve entrapments that are not spine related, but have overlapping symptoms. For example, I have thoracic outlet syndrome which causes tight tissue that entraps nerves and vessels under the collar bone, in between scalene muscles (at side of neck), and under the pectoralis minor muscle on the front of the chest where it makes an attachment in the armpit. TOS prodices arm tingling, weakness and numbness. Ask the neurologist that you see at Mayo if you could have something like that. It's possible that your shoulder surgery is causing tightness from fascial scar tissue and causing nerve compression. Mayo can diagnose and treat TOS and that can be physical therapy with myofascial release. I had both of these problems at the same time (TOS and a ruptured spinal disc). I still do MFR with my physical therapist, and also doing it for a few years before spine surgery helped make it easier for my surgeon because the muscles were looser for retraction during surgery. There is surgery for TOS, but it can make a patient worse because of fascial scar tissue and I was advised that physical therapy long term was best for me. Here is our discussion about myofascial release. It can help you loosen surgical scar tissue after surgery, and you will have some also from your shoulder surgery. I didn't know you had prior treatment at Mayo, so you know how nice it is there. I'll be rooting for you and waiting to hear about your visit.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

Thanks again Jennifer for sharing that. I will definitely ask the doctor about TOS. I wonder if any of the therapists here would know the technique in the video about MFR. I’m looking forward to seeing the doctors there at Mayo. I’m trying to get my questions in order so I’m prepared. I don’t know what they will suggest. I do enjoy going there. It takes a lot of the stress out of serious situations. That’s worth a lot. I will definitely keep you informed on what they decide.
Carol

@farmgirl57 Here is a provider search for therapists trained in the John Barnes methods. https://myofascialrelease.com/find-a-therapist/ If you don't find someone near you, you can also call Therapy on the Rocks in Sedona and ask for other therapists who have trained there. Some therapists don't pay to be listed on the website. http://therapyontherocks.net/

There are other methods of releasing fascia, but what is different about the John Barnes methods is it is gentle and slow, and you give the body time to reorganize the fascia. The problems with aggressive methods are that the body tries to protect itself by bracing and that the fascia can tear. This just compounds the problem by creating more scar tissue in the fascia and adhering tissue. The fascia needs to slide for proper movement and function and it changes from a semisolid to a liquid and back as it reorganizes. The fascia is a conductor of electricity in the body and helps remove waste products. All of that gets trapped in fascia when it doesn't move. Releasing layers of tight fascia is a slow process, and an expert PT can feel the path of the tightness through your body and adjust the direction of their pressure accordingly. In my experience, the muscles in my neck were solid as a rock and glued together, but after a few years of treating this with weekly sessions of MFR, individual muscles can now be felt and they function better. I still have some knots in some of the spinal muscles on one side, but much smaller and getting softer with treatment.

@farmgirl57 Here is a provider search for therapists trained in the John Barnes methods. https://myofascialrelease.com/find-a-therapist/ If you don't find someone near you, you can also call Therapy on the Rocks in Sedona and ask for other therapists who have trained there. Some therapists don't pay to be listed on the website. http://therapyontherocks.net/

There are other methods of releasing fascia, but what is different about the John Barnes methods is it is gentle and slow, and you give the body time to reorganize the fascia. The problems with aggressive methods are that the body tries to protect itself by bracing and that the fascia can tear. This just compounds the problem by creating more scar tissue in the fascia and adhering tissue. The fascia needs to slide for proper movement and function and it changes from a semisolid to a liquid and back as it reorganizes. The fascia is a conductor of electricity in the body and helps remove waste products. All of that gets trapped in fascia when it doesn't move. Releasing layers of tight fascia is a slow process, and an expert PT can feel the path of the tightness through your body and adjust the direction of their pressure accordingly. In my experience, the muscles in my neck were solid as a rock and glued together, but after a few years of treating this with weekly sessions of MFR, individual muscles can now be felt and they function better. I still have some knots in some of the spinal muscles on one side, but much smaller and getting softer with treatment.

@jenniferhunter, @farmgirl57, and anyone else trying to wrap their arms around a description of MFR.......Jennifer's words just do it for me. And as usual, I learned something I didn't know. Jennifer just does that for us....opens a door, slides in some healing. Thank you. Chris

So much good information here. What a blessing. I made it to Mayo Clinic yesterday and saw the physiatrist first. He was amazing. He spent at least an hour with my husband and me and explained things very well. I was able to get an EMG done right away which confirmed what was causing the problem. I saw the surgeon last and we decided not to do any surgery yet. It is getting much better and hope to go back to work next week pending what my primary care doctor suggests. I so wish we lived closer to Mayo Clinic so that would be my place to go. Thank you to all those who commented on this post. I’m so very grateful!
Carol

I'm glad you are feeling better, Carol. It's also good that you have doctors at Mayo should you need them again. If you are going to try physical therapy, they can sign your scripts for that. Thanks for the update. I was thinking about you.