Grade III spondylolisthesis – bilateral, unrelenting pain

@katie215 Are you taking one doctor's opinion that there is no surgical option? My experience has been that some surgeons miss things, and you can get varying opinions. Sometimes there can be another condition that affects a decision. Surgeons pass on helping patients if they think they could fail, and they don't want that to affect their success rate statistics. Do you think it would be worth getting some more opinions? I had spine surgery at Mayo and my surgical team has to sometimes deal with surgery patients with other significant health issues. Sometimes surgeons at smaller hospitals don't have significant experience with difficult cases. I was denied 5 times and came to Mayo and had an excellent surgeon and got my life back. If you don't agree with the opinion, it might be worth getting more opinions at places with a lot of experience in these procedures. You do have to advocate for yourself. I don't have experience with pain drugs, because my surgery fixed my pain. It was for cervical spinal stenosis with 2 mm of retrolisthesis.

@katie215 I'm so sorry to hear all your back problems Welcome to connect we can tell you of our experiences but we are,t Dr,s In your case have you seen other Orthopedic Dr,s to get there opinion When one Dr says nothing can be done it's my experience to keep looking other Dr,s may find a missing piece Be your own advicate about your health ,you know your body better then anyone I would see another Orthopedic Dr. Good luck Will you post again 🤗

@jenniferhunter Jennifer, thank you for your response today. I live in Canada but was assessed and declined at Laser Spine Institute in Florida January 2019. (As you know they have ceased operation now). That being said Dr Prada, the top orthopaedic surgeon as well as Dr Davis, neurosurgeon did a complete assessment c/w MRI and in their opionion my case was risky as an outpatient procedure due to presence of bone spurs, nerve impingement, location of blood supply, and a natural fusion I have from a fall 30 years ago. So I have aGrade 2 spondy. They did say that bone would need to be cut to do anything and it would need to be done in a hospital setting.

Also going forward, I was lead to believe that IF surgery were attempted there would be no guarantee of reduction of pain, risk of infection and loss of bowel/bladder control, a lengthy recovery period and blood supply to my lower extremities could be compromised.

If Rhey were able to help, we'd have been happy to pay out of pocket for sure....for relief.

@jenniferhunter Mistake. I have a grade 3 spondy.

@katie215 No surgeon can guarantee they can cure all your pain, but they can help the functionality of your spine. I didn't have a guarantee of pain reduction either, but I knew that surgery would fix my pain because at the beginning stages, I could turn pain on and off anywhere in my body by changing the position of my neck. I had tracked my symptoms as they progressed. I had surgery at Mayo that changed my life. Laser surgery for spine problems can not address more complex cases. I have watched a lot of neurosurgery conference training presentations online, and the neurosurgeons were making jokes about looking for a job at the Laser Spine Institute. That tells me what others in the field think about them.

My own case was confusing and complex, and I was loosing the ability to hold my arms up. I had bone spurs that kept growing and increasing pressure on my spinal cord. Without surgery, I would become disabled and would probably end up in a wheel chair, and I would have lost my ability to do my artwork. Before I came to Mayo, 5 surgeons would not help me, and I got conflicting opinions. None of them understood what is called "funicular pain" where compression of the spinal cord can cause pain anywhere in the body. I came to Mayo, and surgery fixed all of that.

As a patient, you owe it to yourself to consult the true experts in the field and research the qualifications of any doctor that you wish to consult. I read their medical literature, looked at where they trained, and if they had been recognized for outstanding academic performance. The good ones are usually at teaching medical centers. There are websites like Becker's Spine Review, where you can find information about specific doctors and institutions and get a sense of the centers that are respected and recognized.

Here is a big issue to understand as a patient. No surgeon wants to fail or have a bad result with a patient outcome. That would result in lowering their personal success rates for procedures, and they are rated by the insurance companies, and patients are writing reviews online. All of that can have a huge negative impact on a surgeon's career, and it's a safer bet for them to tell a patient that surgery can't help or guarantee success. You are the worried patient who doesn't have the understanding to challenge this thinking, and it's easier to let fear of what could be make that choice..... after all the doctor agreed, right?

I was very fearful myself, and my natural tendency would be to put off something and see if it got better. I had an advantage in that I understood medical literature because I have a biology degree, and had worked in biology research at a university. That helped me understand what was happening in my body, and even when the surgeons didn't believe me when I talked about my symptoms, I knew they were making mistakes and missing the diagnosis. Overcoming my fears and recovering the gift of my artistic talent had a hugely profound effect on my life, and I wouldn't be here now writing this if I had given up on myself. It changed my life, and because I did this, I know how to handle my fears and deprogram them. I worked at that, and looked back in my life to all the events that had contributed to my fears that had controlled my life. No one is born with fear; it is learned, and if it is learned, it can be unlearned.

You are correct. All surgery has risks, but the rewards can be wonderful. You can do things to lessen the risks by improving your health before surgery, and addressing conditions that could cause complications, for example smoking contributes to failed spine surgeries. Legally, they have to tell you the risks for an informed consent. Doesn't the closing of the Laser Spine Institute suggest to you, that they may not have been the best place for a consult? Since they are not a hospital, they probably only wanted out-patient cases and you brought them a complex case. If your spine has fused itself already, that is a more complex case. Bone spurs and nerve impingement are conditions that a neurosurgeon would expect to fix. The spinal discs have no blood supply of their own. The spinal cord does have a blood supply, and that can be affected by a spine injury. Anytime something puts pressure on a blood vessel or nerve, it's function is affected. I had bone spurs growing inside the spinal canal pushing right into my spinal cord, and if I bent my neck forward and down, I could send an electric shock down my body. I was at risk or paralysis if I should have another injury because there was no space left around my spinal cord. My choice was become disabled or have surgery. I chose to face my fears and I learned a lot about myself and what I am capable of. My surgery was not as painful as I imagined it would be. In fact, I found I could cope during my recovery without pain medication, and I chose not to take it. That may not work for someone else, but I also know that fear increases pain a lot, and I overcame that and was calm. Right before my surgery, I held my surgeon's hand and thanked him for helping me.

I think you should get more opinions. It's your life and your choice. I didn't let the doctors that got my case wrong influence my decision on my treatment. By far, the care I had at Mayo was superior to all the other places I had been seen as a patient, and those were respected medical centers in my local area. Patients get an unbiased opinion at Mayo because doctors are employees on salary, and don't have a stake in the profits of the place they work. I won't go anywhere else for my spine care. Surgery is expensive if you don't have medical insurance. I could have gone home the same day of my surgery and had the option to stay one night and I did because I was worried about falling, but I had been up and walking around the ward that day. Is it possible for you to come to Mayo? If you have questions about my experience or my surgeon, I would be happy to answer. Here's my story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

@jenniferhunter I cannot thank you enough for your kind but informative reply. With all respect to Laser Spine Institute, They did their assessment thoroughly and both Dr Prada and Dr Davis (who had I believe excellent experience and training, one being from Johns Hopkins) made the decision to decline my case on evidence of my condition. Sadly it seems mismanagement and yes law suits have shut them down. As we are Canadians wintering in Treasure Island, it seemed like a great option at the time IF I could be helped. Sadly not. LSI is a moot point now except for 31 pages of investigation and assessment.

Regarding Mayo, we've always considered them in high regard. In fact many years ago my father in law was treated successfully at Mayo in Rochester for prostatic cancer. He lived well into his 90's!

At the moment here in Ontario Canada, surgery has been deemed not an option due to the natural fusion, bone spurs, arthritic changes and my age of 70 years. As I've exhausted all avenues here which include PT, aquatic therapy, medical massage, chiropractic (a total waste of time, energy, I declined after visit 4), 40, 10 mg oxycodone qid, baclofen, and now he wants to try gabapentin, which as you would know, there are horror stories detailing its horrible side effects. I inject Saxenda daily to counteract the "munchy" side effects of meds. Dehydration is always lurking so huge amounts of water have become my "party drink" of choice.

My final option is to attend a so called pain clinic in Ottawa where treatment could/would include steroid injections, epidural injections and medical marijuana (recreational and medical now legal in Canada). Injections are risky and not always successful and if they are, relief is short lived. Of course, medical professionals are hopping all over medical marijuana because it's a way to stop the flow of patients crying for help with chronic pain. We are now in the middle of the "opioid crisis" so shedule 1 meds are dispensed very carefully and it's not uncommon to be approached by someone wishing to buy your Rx at $300 per pill. It's totally outrageous.

I take oxycodone only as prescribed and feel it may take the edge off the pain. I don't know. My calf pain is so intense when standing and walking so my days include how many steps I MUST do to accomplish what MUST be done. I have a wonderful husband of 47 years who is burdened with a once active and vibrant mate who worked as a hispice chaplain over many years accompanying souls suffering with "pain". I didn't have a clue what pain really felt like. I now know nerve pain symptoms, although it's said thst visceral pain is far worse. I am inherently thankful my brain works overtime and as you can imagine I've researched this condition incessantly. Albeit, i haven't contacted Mayo.

Going forward, yes I am aware this condition will progress. Yes a fall, any type of fall will change things instantly. Yes my mobility will undoubtably decrease as my spine condition will dictate. Yes I'm worried about the impact of these meds will have on my digestive tract. I'm sure there are other unknowns which will present themselves as I age further.

I have no idea how to contact Mayo, being a Canadian. I'm understanding there are long wait times and requests for assessment can be lengthy, costly only to be denied. I apologize for this very long post, Jennifer but I'm sure you can sense a woman feelin despair. With my meagre medicali do know from working in a hospital, hospice and long term care I do know enough to comprehend the complexity of cases such as mine.

My first post was looking for support fro people with like conditions. However I'm noting most are/have tried every possible way to ease their pain. There's nothing new.

Herein lies my story, Jennifer. I'm not opposed to surgery but there are horror stories Amoy it as well. Am I afraid, yes, truly. We are not millionaires but the thought of $30000 Canadian and a hope of relief sounded very promising. I now have a disc and MRI reports for which I paid $600 Canadian. Here, we are not allowed to go to any private clinic. And if we do so, the cost of one MRI would be upwards of $2000 Canadian. My LSI MRI was included in the $600 Canadian and included did include 3 pages of description of every single thoracic, lumbar and sacral disc. Also included were xrays of both hips and pelvis c/w written reports. We know truly the option of private medical care in the US far exceeds socialized care here in Canada. I'm off topic here, but please know and tell your neighbors you do NOT want socialized medicine down there. Patients are left in the dust. Even if we can afford private care, it's not allowed here. Period.

So now my though processes are changing. Phoebe many hurdles are there to getting Mayo help@? As I said in my original post, I feel i am against a brick wall, nor emotionally as such, but trying to luv "around" this pain and loss of mobility is a real and present challenge.

If you do read this, my most humble thanks.

@katie215 Thanks for responding, Katie. I think 70 is young. What I do know is that Mayo accepts patients from all over the world and they will accept cash if you do not have health insurance coverage. That being said, I don't know what it would cost. My surgery was listed at about $65,000, but the insurance company has a negotiated contracted rate which is less, and then I pay my portion of that. I had already hit my out of pocket maximum that year, so there were no additional charges to me for my surgery. I had been to 5 surgeons before I came to Mayo and testing during that year, and Mayo's testing maxed out my responsibility for the year. The website has a cost estimate for procedures so you can see an example. I have asked my surgeon's nurse about people from other countries, and what you can do is contact Mayo and ask to submit your imaging for review. You can ask for a particular surgeon. I did that. There would not be a charge to do this, and they would tell you if they thought they could help you or not with a surgical procedure. If you are accepted at Mayo, they would offer an appointment. You can decline that if you do not think it is realistic for you to come. My surgeon was excellent and one of Mayo's best, a neurosurgeon spine deformity expert who also has orthopedic spine fellowship training. He was trained at Mayo and teaches there. I found my care at Mayo to be so much better than any other place I consulted, and my Mayo surgeon got it right; the other 5 surgeons had missed the diagnosis and refused to help me. I had a great recovery and spine surgery gave me my life back. I was very careful in my choices and only consulted surgeons I chose based on where they trained and worked, if my issues matched their interests, what they wrote research papers on, if they were recognized for academic excellence, and I looked to see if they were recognized for their achievements with Becker's Spine review as a surgeon you should know. I also looked for any disciplinary actions on the State medical license board to make sure there was none. There is also a rating of percentage of success on specific procedures that are for Medicare patients, and it rates doctors and the facility separately. Medicare patients are older after age 65, so that has to be considered too since often other health issues can affect a surgical outcome. I do know that Mayo surgeons can do things that other places cannot or will not attempt and they have more volume of specific procedure experience than a lot of other places. If you are a healthy 70 year old, I think you could get help. I would be happy to answer any questions about my experience with my surgeon. I regard him highly and if I need help for further spine issues, I will only go back to him in Rochester. You can contact Mayo on the website by typing in a request, or call them. Here is the online request for for international patients and the phone numbers for international appointments is listed on the right side of that screen.
https://www.mayoclinic.org/forms/international-patient-appointment
https://costestimator.mayoclinic.org/ Cost estimates search

https://www.beckersspine.com/spine-lists.html (You can search and see if a doctor is listed there.)

@jenniferhunter I can't thank you enough for this response and the shared links. Question: Would you be able to share the name of your surgeon with me?

I have no other health issues except weight. (240). I've had a significant loss with Saxenda since November but it would surely be a concern. My bp is controlled with Twynsta. No diabetes, heart or major organ issues. Never smoked and do not drink alcohol. I do have my total work up file on PDF, including my ecg comparison as well as a disc containing mri images of my spine. There are notations in my file by the diagnosing physician (at LSI) stating the proposed surgery procedure before the final appointment with Dr Prada. I'm not sure what surgery would be advised by Mayo.

By the way, Rochester would be closest for us to travel.

I'm going to discuss our conversation with hubby on the weekend. Thank you so my for your time and energy these past couple of days. Today my pain is a raging ten...after a brief outing to the hair salon.

Hi,

I have been reading your posts with great interest and thought it might be helpful to share my experience at Mayo in Rochester. I am having surgery on my cervical spine at Mayo two weeks from today. I will be 66 this summer, have asthma, and am a Type II diabetic. I also weigh 250 pounds. My orthopedic surgeon at Mayo thinks I will have a good outcome from surgery despite my other health issues...he just wants my blood glucose to be under a certain level.
I was a self-referral to Mayo about three years ago because of issues related to my lower spine. I will need lumbar fusion in the future but the orthopedist at Mayo found the cervical spine issues on an MRI and believes the cervical spine fusion needs to come first. Do not hesitate to contact Mayo. Please let me know if you have questions.

All the best,
Helen

@katie215 Katie, You're welcome. My neurosurgeon is Dr. Jeremy Fogelson and he is at Mayo in Rochester. Here is his profile. I hope that you are able to go to Mayo and that he can help you. If you do go, I hope you'll let me know how it goes. Keep working on the weight loss. It sounds like you are making great progress with that and are motivated for success!

Dr. Fogelson does both fusion and disc replacement. I'm glad I could help by sharing information. I had to learn how to advocate for myself even when I was anxious about my predicament, but having surgery at Mayo was a good decision for me. I know how hard it was for me to find a surgeon to help me (before coming to Mayo), and I try to help other patients who are on that same journey. I learned what a truly great surgeon is by coming to see Dr. Fogelson. I shared several links about him below (one of which is my story). I used to wrap my neck in microwaved heated wraps to help with my muscle spasms and lie down. Topical arnica gel can help with pain too. My physical therapist also uses a Dolphin Neurostim to block pain impulse signals, and that did help too.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is a video where you can see him talking about scoliosis
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/?utm_campaign=search
https://www.beckersspine.com/spine-leaders/item/37080-spine-surgeon-leader-to-know-dr-jeremy-l-fogelson-of-mayo-clinic.html
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/