Do’s and don’t’s While waiting to see the neurosurgeon

Having become symptomatic of severe lumbar stenosis, I was about to deal with the problem, from the standpoint of my primary care physician. Their office provided two referrals, but one was local and the other in major city not far from where I live. The local physician, a orthopedic surgeon, seemed helpful at the time, and set me up with a non surgical intervention, pt. Since then, I went to see the other who was difficult to see, taking nearly 4 months for a appointment. Since I had PT already, he stated that I would need surgery and stated that he agreed that I would need a laminectomy. Since, initially, I was not getting the help I needed, the best advice I can give, is to do the best you can to see a specialist and take his advice seriously. Its been part of the way, this is suppose to go, but at this point, I wish I had more insight from a specialist's perspective, since mentally, its taking a good amount of time to look toward this as what I need to address to help my problem.

@gpmajercik My journey has been ongoing since February of this year when I injured myself in an exercise class. First two weeks of rest. Then PT. Then Orthopedic Dr and PA. Epidurals that didn't work. Nerve blocks that did seem to help, but the subsequent Ablation did nothing. That was weeks of waiting. Saw Spine Surgeon who recommended a fusion which I didn't want. Then months of waiting for a second opinion. Now a Laminectomy is scheduled for Jan 30th. I will have been in severe pain for almost a year by then.

@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.

I appreciate all the replies - I guess what I am really asking is what can I do to help myself and what should I avoid? (specific stretches, sitting/sleeping positions etc.) I walk for exercise but I read something that said I should only walk on flat surfaces and not too far. ?

@melissa711 Generally speaking, walking is often recommended by spine surgeons especially after surgery to increase oxygenation of tissues for healing. Your best bet is to try to schedule an in person evaluation from a physical therapist if you have specific questions about what may be harmful in your condition. No one on the forum understands the details of your spine and would not be able to advise you. That needs to come from a medical professional you engage for your care.

What I wrote about doing myofascial release really helped me a lot and my surgery went better because of it. What is did for me was to loosen tight tissue, so it was easier to retract during surgery. With spinal disc issues, there are also a lot of muscle spasms that cause pain wit htension and shifting the spine. A PT can help with that, and it would not prevent treatment from a spine surgeon. When my PT was realigning my neck with MFR and doing the Dolphin neurostimulator, it was blocking my pain for about a week, and this was for a few months before my spine surgery. It may be worth inquiring about that. Essentially, MFR is like a massage except the therapist holds the pressure and waits for the tissue to release. Here is our discussion where you can learn more. There is a provider search at http://mfrtherapists.com/

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Melissa, avoid lifting or carrying heavy objects, holding the same position too long, impact activities like jumping, impact sports, ha, like football. Don't spend too much time on the internet. Massage is great, even self massage MFR is excellent.
Try not to do anything that hurts. You might get a soft collar if you have activities that require you to sit for long periods, like driving. Avoid anything that cause pain. You might do slow neck rotations. You can do any of these neck stretches that don't cause pain. https://www.youtube.com/watch
You aren't at great risk of making your neck worse. But meanwhile you might get some relief.
Try to find the position of greatest comfort for your neck while sleeping. Sometimes a rolled towel can help.

@gently thanks so much - these are kinds of things I need to hear - i don’t hurt, I am not in pain , I just have a plethora of weird nerve issues. I am super concerned about permanent nerve damage.

@melissa711 if you r willing, you could post your imaging results so that we could see the specific which would make guidance tailored to your needs