First-time poster. I'm very glad to have found this forum. I've read through a lot of posts from the last several years, and it's been very helpful. There are a lot of really informed, caring and very thoughtful people here sharing their experiences. Hopefully some day I'll have some experiences and insight myself to be able to help others.
I'm trying to get the info to make good decisions, but it's tough to navigate a path. I've seen many doctors. I've done many tests. I've read many, many research reports. But it's so conflicting: lots of different suggestions, but real evidence is limited and it seems there are no clear answers. At least reading the forums here reassured me that I'm not alone in finding it so tricky and that so many of you have had the same problems in making your way through this.
- Weird sensations in both legs: numbness, tingling, warm on legs, cold on bottom of feet. Best way to describe the overall feeing is that it's like when your leg "falls asleep" from sitting on it too long.
- Started 8 months ago.
- The symptoms have stayed the same over the last 8 months, but they've gradually increased in frequency. At first, a few moments in the day. 6 months ago, several times each day, 10-20 minutes each time. For the last 3 months, symptoms occur around 50% of the day. It's also there most of the night (from what I notice when I wake up to use the toilet). Mornings I wake up with very tingling, tight legs, but standing for 20 minutes makes it feel 90% ok again.
- No leg pain: the feelings are weird, but don't actually hurt. Some leg muscle cramping, but no muscle weakness. No butt/gluteus pain.
- No real back pain. Slight back stiffness, primarily after long walks and when waking up in the morning, but not really painful.
- Symptoms are least noticeable when walking. Sitting or laying usually causes symptoms.
- When I lay on my back and raise my legs, I immediately have the feeling that blood is rushing down my legs, and the tingling, numbness and warmth that are usually present increase in intensity.
- MRI/X-ray show disc degeneration in L4-L5 and L5-S1, severe nerve root compression in L5-S1, and Grade II spondylolisthesis in L5-S1.
- All doctors say that based on the X-ray/MRI, I've had the spondylolisthesis since early childhood.
- EMG/NCS show electrodiagnostic evidence of chronic L4-S1 radiculopathy in both legs. No polyneuropathy or entrapment neuropathy.
- I'm 39, male. Heart and circulation studies also done. All in excellent shape. Blood tests also all good. General physical shape good.
I've seen lots of doctors. Their opinions are all over the place.
A spinal surgeon who seems to have the biggest reputation in the region (both as a practitioner and as an academic) told me I need L5-S1 TLIF fusion immediately. He's highly confident it would successfully fix my radiculopathy. He said I'd recover quickly and wouldn't notice any difference in back movements or my life in general. He said I'd need L4-L5 fusion in 10-20 years, but I'll need that in any event regardless of whether I fuse L5-S1 now. He says every week I delay surgery at this point will reduce its chance of success.
4 other spinal surgeons separately told me that I definitely should not do any type of surgery now. But their suggestions of what to do varied. One doctor recommended Lyrica, anti-inflammatories and aspirin. Another suggested B1/B6/B12. Another advised physical-therapy, ultrasound, posture correction, and lumbar traction. The fourth doctor told me to just make sure I do lots of cardio exercise, stay active and otherwise just live my life normally (he said my posture is more than good enough already, so changing it is silly at best and harmful at worst).
In addition to the spinal surgeons, 3 neurologists/neurosurgeons examined and/or tested me. One said I definitely need surgery if I still feel tingling after 1 month. The second doctor told me to avoid surgery unless the pain becomes unbearable, and otherwise to do PT and take anti-inflammatories. THe third doctor ordered a brain MRI to check if I have multiple sclerosis (the test was negative).
In two separate cases, the doctors who told me to definitely not have surgery warned me as an aside that I should be very wary in my case because of the financial incentives driving fusion surgery. They told me that although many people would see my MRI and immediately say that I need fusion, my symptoms don't justify surgery.
I tried two different physical therapists. Haven't noticed anything, but maybe it's too soon. I'm signed up for more sessions, per doctor's orders.
I've read many research studies on this area. I'm familiar with the standard steps for chronic pain treatment (like these
on this forum), conservative treatment options, and surgical options. But I have no real-world experience with this. So, I'd just like to ask you all what you suggest.
I understand no one here is my doctor, and I understand that nothing I get on a forum can substitute for professional medical advice. But you all know better than anyone what a murky area this is. Doctors' opinions are extremely different. There are lots of unanswered questions about everything, and there's outright controversy in several areas. There are surprisingly few evidence-based studies to give doctors or patients clear guidance: the ones that exist are contradictory both with other studies and even with themselves, and several studies altogether indicate that in any event there are no long-term differences in outcomes between different treatment options. And additionally, I've found that some pretty commonly recommended types of non-surgical care have essentially evidence supporting their benefit.
So in that type of situation, I really think that the experiences of people like you who are going through it can be very valuable. I'd love any ideas you have to help guide me as I start making my way through this. I'd really be interested in both treatment ideas that have worked for you as well as your stories about progression of symptoms (For example, how was your progression? Slowly increased until it was painful? Quickly progressed to big pain? If I start with just leg tingling for many months without actual pain in leg or back, does it then progress to pain?).
I'm really open to anything.
There are no medical professionals on the forum side of this site. Therefore everything you read is based on the personal experiences and/or research done by the individual member. Comments should never be taken as pure medical facts. You need to discuss this with your doctor. They are the only ones that can provide you with detailed information about you, the patient.