Hello Everyone! Living with Level 5/S1 trouble!

[bluesunday]

Hello! I'm new here and hope to spend a good amount of time perusing the many posts and investigating all of the options as I continue to overcome the pain and discomfort in my lower back, specifically at the level 5 S1 level.

I was officially diagnosed with DDD a few months ago but heck, I had an inkling something of this nature was going on way back when I was 24 years of age and experienced the first bout of pain at that level after a basketball game.

I've since endured terrible bouts of acute pain at the specific level many times over the past 15 years. Once I came very close to having surgery because I couldn't take it any longer. But each time I suffered an attack, at some point, if I waited long enough, the pain subsided. But now, at age 42, I've been waking up in the morning with very serious pain and discomfort. It's so bad that it's causing problems in my sleeping.

I've had steroidal injections but received only ephemeral relief. I'm headed to the UCSF pain management center in San Francisco next week to see if I quality for a radiofrequency ablation, which if successful, would mitigate much of my pain in the area.

Has anyone else had this procedure done to them and how did it go afterwards? Did you still end up having surgery at some point?

I suffer from arthritis in the my level 5 disk. It's dessicated and has slowly gotten worse over the years. When I had the neurosurgeon compare my MRIs from 1998 to the ones taken in 2010, it was noticeably worse with the cartilage just disintegrating. I keep reading these posts by doctors about millions of Americans suffer from some form of DDD but generally go through their lives with only mild symptoms and never need surgery. Well, while I'm happy for those people, I can't say I'm one of them. Luckily for me, however, I do not experience sciatica. All of my pain is focused on the level 5 S1 area. But it hurts terribly in the morning and it hurts terribly if I lay down for a mere 5 minutes. I can barely stand up it's so bad! It feels like someone is trying to saw my vertebrae in half!

I've taken Aleve but it doesn't help much. Two pills at night, two pills in the morning..I did it for several weeks but with minimal effect. The steroid shots work great for about two weeks. And then its back to consistent excruciating morning pain and lying down pain and pain after I exercise. Even long walks can aggravate my back no end.

I try and swim more rather than walk. Swimming is good but it's not helping my disk overcome its disintegration.

This description describes it well:

Arthritis of the lumbar spine most often causes stiffness and pain of the low back. Patients often notice their back is especially stiff in the early morning after getting out of bed, and may loosen over the course of the day. Symptoms also often become worse with prolonged or strenuous activity.

Has anyone else suffered from this exact predicament? How did you handle it? And what worked for you? Did you eventually get surgery? I feel surgery is inevitable. I'm just trying to hold it off as long as possible. What's it like to have a prodisc inserted? I feel this is the route I'm going to pursue at some point in the not so distant future.

Appreciate any feedback.

[KBear]

BlueSunday, Welcome to the forum! You have come to a great place for research, opinions and support. Sounds like you have been in pain for quite some time. I would try the nerve ablation and if that does not work, then I would look seriously into surgery if I were you. It sounds like you have tried conservative treatment and that has failed you (90% of people will heal, become pain free, with conservative treatment; but for the other unlucky 10% of us, we require more invasive measures). Have you had any surgical consults? I would see several surgeons and get opinions as to what operation would be best for you, ask why they recommend what they do and then research each one. Sometimes the opinions will all be the same, which makes the decision that much easier, but other times they will vary widely. Are you in the California area? If so, I know of a couple other members in that area, who see surgeons there. I'm sure they could recommend some to have consults with.

Yes I suffered similar pain. I am still the worst when I wake, very stiff; but a huge improvement over where I was pre surgery. For the last 4.5 years I have started everyday by laying on my heating pad and waiting for my medication to kick in. After that I do pretty good, with moderate activity I feel the best (too little or too much will leave me with increased pains for a couple of days). Surgery has been my saving grace, as my pain was unbearable before and medication just barely took the edge off. Now, I still have pain, but it is bearable and medication takes it completely away.

Good Luck and ask any questions you may have, there is no such thing as a stupid question when it comes to spine surgery.

[New-disc]

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[bluesunday]

Thank you very much, KBear, for the initial feedback. I will update this forum on how things go with my ablation. I just may take you up on any recommendations you have for surgical consults. I live in San Francisco. I've met with only one neurosurgeon. But I need more opinions from specialists given my age, 42. I was told that inserting an artificial disk at my age has only a 60% success rate. But what is defined as success? Minimal pain? No pain? I didn't have enough of a long-term discussion with the surgeon, and frankly, given that he's close to retirement age (in his late 60s/early 70's) and still practicing), I'd like to have consults with a few surgeons who are a bit younger. However, seeing an experienced surgeon is what matters so any consults I'd feel comfortable with would be with surgeons who've done disk replacement surgery for a number of years and can speak to the success rate for a man of my age. I have my recent MRI results on a CD, which includes my official diagnosis, so I am ready to engage any number of surgeons. I will keep you posted. Thank you.

[KBear]

It makes no sense to me why they would say that someone your age would only have a 60% success rate??? If I remember correctly, the average age for disc replacement is mid forties. My insurance didn't want to pay because of my age, saying I was too young and they didn't know how long it would last. I'm one of the "young" ADR patients, and there are many on here who are in 40's & 50's who had successful ADR. I am curious if they are saying you are too young? Or implying you are too old? (which I don't think so, because that is still considered young in the spinal world- in my opinion) Which makes no sense (unless you had osteopenia or osteoporosis). I would definitely get more opinions.
I had one doctor tell me at age 28 that there was "nothing else they could do for me and I needed chronic pain management" I then found out I was a perfect ADR candidate, saw 3 surgeons who all agreed I was. I called back to that old doctor and asked why they didn't tell me about ADR, turns out, they didn't believe in the technology. Experience is important, but it's a fine balance from still wet behind the ears to went to medical school when the dinosaurs still roamed the earth. The former may jump on the bandwagon of anything and be too happy to experiment on you and that latter may be so set in their ways that they are not open to trying anything new.

Good Luck and I hope the nerve ablation works and you don't need surgery!

[Metalneck07]

Hi bluesunday Welcome I am also new to this group but I thought I would chime in on the ADR subject.
I'm 39 yrs. old not much behind you .I consider you young without a doubt.I recently met with a surgeon
who told me I 'm a good candidate for ADR.I 'm looking at ADR at L4-5 and Fusion at L5-S1.Never have I been told
my age was a factor mostly that 30's to 40's is the prime age for problems.
I wish you the best of luck with nerve ablation I hope it does the job.

[Gilbert P]

Bluesunday

Yes you should get many opinions, They will be different most Surgeons would suggest a procedure they are most experienced with. You need to educate your self and do plenty of research.

I have a bad L5-S1 for 16 years and was very active worked in construction. now it is completely gone with moderate spine stenosis, facet hypertrophy, and epidural stenosis ( scar tissue) from surgery. with three other levels of problems.
I awake every day very stiff hot showers and streatching gets me going.
Waiting on surgeons for review of my MRI etc will have some sort of intervention this year.

Do not wait to long your other disc will begin to go, Do your other levels have issues?

I wish you the best we are here to help.

Gil

[bluesunday]

Thank you for the feedback everyone. Gilbert, so far, the rest of my disks appear to be fine. It's just the Level 5 S1 that is the problem. But you do frighten me somewhat because I fear what could happen to my other disks. My father, (80 years old now) was diagnosed with spinal stenosis throughout his spine about 3 or 4 years ago. He very close to having surgery. But miraculously, the pain subsided (for the most part) and surgery was avoided. However, I fear that I inherited the DDD from my father (or at least it runs in the family) and I don't want to see stenosis diagonosed throughout my spine.

I'm going to hope that I qualify for the ablasion and then seek out further consultations with surgeons in the area. Although I'm often told how little time surgeons are able to give for consults. The surgeon whom I did see I felt did not spend enough time with me to discuss surgery for my particular situation. He gave me a bunch of papers and that was about it.

Bluesunday

Yes you should get many opinions, They will be different most Surgeons would suggest a procedure they are most experienced with. You need to educate your self and do plenty of research.

I have a bad L5-S1 for 16 years and was very active worked in construction. now it is completely gone with moderate spine stenosis, facet hypertrophy, and epidural stenosis ( scar tissue) from surgery. with three other levels of problems.
I awake every day very stiff hot showers and streatching gets me going.
Waiting on surgeons for review of my MRI etc will have some sort of intervention this year.

Do not wait to long your other disc will begin to go, Do your other levels have issues?

I wish you the best we are here to help.

Gil

[Gilbert P]

Hi Bluesunday

I do not want to scare you. But I waited to long and now have mutti level problems. I would rather see you correct one level and live the rest of your life pain free.
Education on spine issues will help you make the best choice on surgeons and surgery.
Your other levels are fine ,sounds like ADR may be the best, I am no Doctor just my opinion

All The Best

Gil

[bluesunday]

Hi Everyone!

Just an update!

So I had what is called a medial branch block last week. About 6 different needles were used on my lower spine as a way of decreasing pain signals in my nerve tissue. Unfortunately, not much came of it. :-(

Right now, I am experiencing terrible pain when I wake up in the morning and terrible pain if I merely lie down for a few minutes. All the pain is focused squarely around the sacrum area just below S1 level 5. It's excruciating.

The pain eases up some throughout the day and I can manage from then on out. I can swim later in the day, which I'm doing, but it does nothing to ease the pain I experience in the morning.

If this medial branch block did not work, then according to Dr. Lee, of the pain management center of UCSF, a full Radiofrequency ablation (RFA) won't accomplish very much.

I've arranged a consultation appointment with Dr. Lee for Sept. 20 to discuss other alternatives to combat the pain I experience and also get some recommendations from him of neurosurgeons in the SF/Bay Area who have a good deal of experience with spine surgery, particularly, ADR.

Right now, I feel old and somewhat depressed.