Chronic Pain members - Welcome, please introduce yourself

Thank you so much! Your reply has been most informative. I have cervical issues also, but the surgery and chronic pain is in Lumbar 3-6 to fuse 3 and 4 I believe. I have had multiple MRI. I will purse more opinion, but would appreciate a referral to Mayo. Can you share?

Thanks

@jkgraham
Hi!
When I had my cervical spine done, I felt immediate relief!
It was a very easy surgery for me to heal from.

To be VERY honest, the lumbar spine was HORRIBLE to recovery from.
I was in pain for 4 months.
Not so much my back as my legs.
Yes, legs.
I can't remember if my surgeon said he moves muscles, cut muscles?
I don't know.
But the pain I got in my groin and down my legs were horrible!!!!!!!!!!!!!!!!!!
Back, not too much.
Then one day, about 4 months out, all the pain was suddenly gone.
Just like that!!!

Whether it takes 6 mos, 1 yr, 18 months, I PERSONALLY BELIEVE you need to continue to baby your back.
For me, it will be forever!
I don't want to take ANY CHANCES of harming myself and having the chronic pain every again.
NO bending, lifting (anything over a gallon of milk), twisting, hyper-extending!!!!!

Good luck!
Ronnie (GINSBERGr)

@jkgraham393
Mayo Clinic is a wonderful place to be treated.
However, I tried multiple times to get into the one in Jacksonville, Fl but I could not get in.
They told me they had their max of number of patients with my spinal issues, even though I had gone through a myriad of non-invasive procedures.
Ronnie

@jkgraham393 You don't need a referral to go to Mayo. Sometimes doctors make a referral, but I referred myself. You do need copies of all your imaging of your spine and copies of reports and the diagnosis. When you call Mayo, they set up a temporary patient number for you to send in your medical information and imaging. They will review it and let you know if they can help. It may be a wait to get in depending on how many patients they have already and how many urgent cases they have, those get priority. I was told my wait would be about 3 months, but there was a cancellation, and I got an appointment about 5 weeks later. I asked to contact a specific surgeon based on his area of interest and research that was a good match for my case. You can also just send your info, and if they take you as a patient, they assign a doctor. I had been denied help 5 times because my case was misunderstood. I then found other medical literature with a similar case because I looked up a term in the paper of the Mayo surgeon I was considering. I sent that study with my request. I also knew because of the literature I read that the Mayo surgeon would understand the complex symptoms I had with my case, and he did. In getting in to Mayo, it probably helped that I had been denied help for 2 years by 5 surgeons. I wish I had come there first.

Was Mayo Clinic able to help you?

Wow! Being focus on your wellness and persistent is apparently very important!

@psearby17 Thanks for asking. Yes, Mayo Clinic helped me... a lot... and right away. When you go to Mayo, they evaluate everything that might be an issue at that time. In addition to my spine problem, I also have thoracic outlet syndrome that causes compression of nerves and blood vessels under the collar bone. They evaluated the TOS and tested what happens to my circulation in my arms when my arms change position with doppler imaging and also tiny blood pressure cuffs on my fingers. I had nerve conduction tests and blood work. I met with a vascular specialist about the thoracic outlet syndrome who examined me, and all of that happened before I met the neurosurgeon. While I was at my appointment with him, the vascular specialist called him with my results that had been completed just an hour before this. Then the neurosurgeon discussed my imaging with me and test results and offered surgery and answered my questions. What is different about this is that all of the testing is so organized and efficient, and it was all done before I meet the surgeon. The neurologist was the first doctor who examined me, and he ordered all the testing based on his exam so everything would be ready for the neurosurgery appointment. When I had surgery, everyone took good care of me and was so kind. I had never experienced medical care like this. Previously when I saw spine specialists at other places, I waited a couple months for the first appointment, then another month for a test, then another month to see the specialist to discuss the test, and then he ask for another test, and it went on with just waiting for tests and appointments and wasted a lot of time... two years of time and I was getting worse. The doctors were suggesting spinal injections and none were willing to fix the problem. I had pain in places that they didn't expect based on my imaging and with the TOS complicating things, they didn't want the risk for something they didn't understand. I came to Mayo after 5 local surgeons refused to help me, and then one very kind gifted surgeon at Mayo gave me my life back. Here is my story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Hello to everybody.
Wishing you all have a nice day.
Hugs

@jkgraham393 Absolutely. You have to advocate for yourself as patient and for family members. That is why I am here helping others with my experience, because my journey was difficult. Because I learned how to advocate for myself and confronted my fears, I gave myself the future of a better life with my choices. In my struggles, I realized that I had enough life experience to do this. If I had kept on waiting and hoping for help, I would be a lot worse off. I was on my way to becoming disabled by spinal cord compression and I was loosing my ability to control my arms to do my artwork. I worked so hard to achieve that skill level in my life, and I didn't want to loose it to an old injury that was being ignored by the local specialists.

I decided to take control of my future and not leave that decision to fear, not only my fears, but the fears of the surgeons who wouldn't help because they didn't want to risk a possible poor outcome on what they didn't understand. I found a study with a case similar to mine right after I was dismissed, and I contacted other doctors at that facility who I'd seen for several years, and none would help me approach the surgeon who turned me down. I knew what he missed, and I'd given him information that could help him make the same conclusion, but he dismissed it, and it wasn't mentioned in the records of my visits. I told him that I could turn my head and turn pain on or off somewhere in my body (like my ankle) just by the position of my head and neck and it was reproducible. Of course that sounds crazy, but I had bone spurs compressing the front of my spinal cord and in doing this it twisted the spine changing the position of the bone spurs that were contacting the spinal cord. The nerve to the legs exit the spine in the low back, and they expected me to only have arm pain from the level of my injury. I think my doctors should have known this or should have looked for literature. They have a lot more access to medical journals than I do. This is the reason that I found my Mayo surgeon because in reading his papers, I found the term that described my pain symptoms which is called "funicular or referred pain" and when I looked that up, I found the case study that was like mine. I also knew that this surgeon would understand this phenomenon because it was mentioned in a paper he co authored.

The lesson is that doctors miss things, sometimes very important things and not everything about the human body is understood. Doctors don't have much time with a patient and edit out what they think isn't important. I tracked how my symptoms changed over time, and also had MRIs that demonstrated the bone spurs were advancing as the symptoms expanded and got worse. It was perfectly obvious to me what was happening. Spine surgeons do have to be careful in that other problems have overlapping symptoms. Surgeons also have success ratings for their procedures, and if they take easier cases, those ratings will be higher.... and then there is Mayo known for taking difficult cases. I would encourage patients to get their medical records. There may be things there that they didn't mention or things that were omitted. As a patient, you need to know that you and your physician are on the same page. You can't just trust that they will do what is best, and they might be swamped with other demands. I never expected that my doctors would not help me communicate when another doctor missed something, and all they would say is get another opinion, and I did... at Mayo. Here is the case study for anyone who is interested and my patient story.

Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
http://europepmc.org/articles/PMC3111492/reload=0

"Funicular leg pain is a rare presentation of cervical cord compression."

"Leg pain or sciatica is a rare ‘false localizing’ presentation of cervical cord compression and there has been only a few cases described in literature [1–5]. The term sciatica has often been associated with disorders of the lumbar spine and pelvis, and we often tend to overlook other parts of the spine in the search for its cause. We report two cases of cervical cord compression, which presented with sciatica-like leg pain. Each case is unique and different from one another in their presentation and concurrent spinal lesions. We hope that the discussion of these cases and the accompanying literature review will make us more aware of this uncommon presentation of leg pain in cervical cord compression."