Do’s and don’ts while waiting to see the neurosurgeon

@jenniferhunter You were, indeed, fortunate to find a doc who listened and went to the heart of the matter. It is impressive that you kept on searching, undeterred. I always tell people not to take the first diagnosis as set in stone. After I injured my back, I had injections, nerve blocks, etc. I went to several orthopedic surgeons who told me, "There is nothing else that can be done". Well, I decided to keep looking and found a neurologist who helped me tremendously. Sometime later I met a neurosurgeon who helped give me my life back. I am glad that I didn't listen to those first "Debbie Downers" (no offense, Debbie).

@heisenberg34 could you tell us exactly how both the neurologist and neurosurgeon helped you?

@melissa771
The waiting time to see spine specialists can be long indeed. That is why I recommend that patients also schedule other spine specialists for second opinions or third, etc. simultaneously in addition to the initial scheduled consultation. In my case, it took 2 years for me to get to a specialist who would help me while all the while, my symptoms were getting worse and I really worried about loosing the coordination in my arms. I was in PT a lot of that time and that was buying me some time by realigning my neck vertebrae by working on the muscle spasms and some Dolphin Neurostimulation sessions to block the pain nerve impulses.

There is always a waiting list for a good spine surgeon. If you get in within a month or 2, you're doing well. Ask to be on a cancellation list. When that specialist wants testing such as nerve conduction tests, you wait again, Then you may need another MRI and you wait again for that, and all of it lengthens the time until you actually get surgery to decompress the spine issues that you have.

The first 5 surgeons I saw misunderstood my condition and refused to operate. The one that engaged the most time with me up to this point spent 6 months and I jumped through all his hoops, even having a diagnostic epidural spinal injection. When that took away all my pain symptoms (all over my body), and he didn't understand why, he ignored that result. Sometimes, they don't want you as a patient for ego reasons. They are scored on their statistics of success, and if you are a patient that has other issues that may risk their good grades, it is easier to pass on helping you. I was told I may have an inflammatory condition causing my body pain by surgeon #5 who missed the diagnosis. It was a simple single level fusion needed that he could have easily done with no other nerve complications and no osteoporosis or other health complications.

Then a really good thing happened when I came to Mayo to see surgeon #6. There was no more guessing, no more waiting months for tests or imaging because Mayo can usually do everything they need in house within a week. The surgeon at Mayo understood the condition I had called "funicular pain" that caused pain all over my body from cervical canal stenosis. He offered to help me with surgery at the first appointment. I was finally understood and validated as a patient. His surgery gave me back the coordination in my arms. It mattered a lot because I am an artist. I told that to all the surgeons who saw me. I really got the best surgeon because all the others refused, so that is a good thing. I set a goal during my recovery for getting strong enough to do paintings again. With gratitude, I painted a portrait of my Mayo surgeon, Jeremy Fogelson as a gift. He gave me back the gift of my artistic talent, and I couldn't think of a better way to thank him after all I had been through before I found him.

As a patient, stay alert. Keep asking questions. If your specialists doesn't seem interested in your case, you need to know that so you can move on to another surgeon. You do not have to agree to spinal injections which are often used to delay surgery and they don't cure anything; the spinal degeneration will continue on it's course. It's a matter of time in how fast a spinal condition is changing. I saw my bone spurs double in area within 9 months time on MRIs because I insisted that I was getting worse and asked for additional imaging. Usually they consider imaging with a year to be current. There are insurance approvals needed as well, so if you have worsening symptoms, they need to be recorded officially in medical records.

The best things you can do while you wait is learn and understand what is actually happening in your spine. Do things to relax such as listening to music or getting a massage. I was doing myofascial release with my PT and that helped me a lot before and after surgery.

The bottom line is don't let a doctor waste your time if they are not interested in your case. You may not need surgery, and if their answer is to try to help you avoid surrey and track your progress over time, that is a valid response as long as things are getting better and not worse. If they offer to send you to physical therapy, that can be a good thing. They need to be honest in describing your condition and explaining it to you on the imaging. I have trouble trusting a doctor who is unwilling to do that and who rushes through appointments while they search to cherry pick their cases. I have mixed feelings about seeing PAs. They do allow more patient access, and some are very good. They could also be running interference for the doctor if he isn't interested. You'll have to ask questions and trust your gut feelings on this.

@jenniferhunter

Well over the past year of cervical pain which just keeps getting worse and after seeing 5 neurosurgeons, 4 PA's, a neurologist, 2 different PT specialists, and all pain management procedures, I have learned that surgeons are generally a--holes, they definitely don't take even a minute to listen (ESPECIALLY to anyone over 70) and really aren't interested in operating without a guarantee of success. But, when I finally got to Dr Patel, after waiting 4 months, a leading orthopedic spine surgeon, he said he thinks he can help me. I started crying! He ordered an EMG nerve test and a nuclear bone scan and then on January 20 will review results and he'll talk surgery. Thank God! The surgery will be to stabilize a C5-6 fusion 8 years ago which never fused, free an impinged nerve, and clean up bone spurs. I have spent my entire life with daily exercise and now have hope that I can get back to being active again.