Sciatica nightmare

@joy75 - I will continue this so you feel encouraged to get back in the driver seat. My neurosurgeon - the best at that time - grew into being a jaded... um, add your own last word. When he said there was nothing more for him to do I replied: "Okay, I'll go home and take the opioids then." (I was fine with that). I had done EVERYTHING they asked. That was when he replied: "oh, no, no, no... let me refer you to the orthopedic spine surgeon here..." really?! All of a sudden there's another person who may help me?! I didn't want to go. I figured I was at the top after 18 years of surgeons (had two hips replaced), 28 years of P.T., referrals, EMT nerve tests, MRI's EVERY YEAR, outpatient, pain mgt for 20 years, blah, blah.... An ortho spine surgeon is lower on the rung of practice time (5 years for ortho instead of 8 for neuro). What I believe was the core issue was HE came from a time where there were BAD lumbar surgeries. Also, in his mind, you needed to be incontinent and have foot drop. He wanted those indications. (I was kinda having loose bowels and believe now that the nerves were indeed creating some of that problem along with the IBS). The nerves DON'T have exact paths and they can stimulate other areas.
In the meantime, I was getting other second opinions. My insurance company allowed for it. PLUS, if surgery is involved, they will cover some additional referrals - especially if this happens over time and you are in a new year. (The 4 opinions happened over 2 to 3 years). By then, my pain STOPPED. Do you get that electric shock feeling when you reach for something? Well, it stopped because the nerves were crushed to death and the spine bones grafted together. So my prince charming who did a simple xray, walked in after I answered some stupid guinea pig questions for his student fellows and he said "you need to do surgery NOW." I said "Fine, do it." I just knew he was my man! I've been with him for my two cervical spine surgeries, too. I'll be back for another lumbar fusion, we are watching.
When I woke up from surgery I was thrilled. The surgical pain is yucky but the lumbar spine pain was gone! I could turn over in bed immediately and the 2 ton gorilla was gone! Are you of Medicare age? You don't need a referral. You can go anywhere. You need to be with a spine surgeon. In the meantime, go get some MFR treatments that will ease your misery. Its like a painful massage but they realign things so you get relief. Get SEVERAL in succession. Same with acupuncture, get some of those too. Get a pain managment doctor onboard to get some treatments and a diagnosis. I had one REALLY GREAT guy who said "oh, I can puncture the fluid filled sac sitting on your spine (from the MRI read) wanna do that?" and I said YES. I can't remember WHY I had to pay for it... (this was 2015) but I did. Then I went back and asked insurance for reimbursement. They wouldn't. So I took it to arbitration. I WON. Then they freaking wouldn't Pay! Can you believe that... a $500 bill and they spent $5000 arguing about it. So I threatened to go back to arbitration and I rec'd a check in 2 days. Really crappy, huh? I TRUST that the right thing WON'T happen without advocating for myself. I want to live my best life and we are severely understaffed in the medical arena. Politics destroys coverage and our entitlements. IF you are of medicare age - make SURE you know what you are entitled to!
Oh Joy - I just saw you are 51 and in Canada. I don't know the policies there but I know it is slow go. Here I tell the doctors "you can't leave me suffering" - suffering being the key word. I suggest you get into a swimming pool for sure and walk. Rest and put your legs up and stretch. I lay on the rug pull my knees up and turn them to one side of the floor for a while and then the other for a while. That helps. I would suggest you DON'T PAY for "help" (chiro/P.T. or the rest). Save your money and go to a GOOD orthopedic spine surgeon for a diagnosis. That is what you need. Where you need to be. DO use heat/ice in the meantime and don't hurt yourself and waste time trying to "heal" (which you aren't going to do from your description). You DO need to be strong going into surgery (ergo, walking and swimming). Also, see if facet joint Radio Frequency Ablation is offered and some cortisone periodically. Think long term.... you'll get there. See if botox makes sense (it did for me).

@loriesco

Good morning, Lorie, and thank you much for taking the time to share what you have been through...and my, you have been through A LOT!

I am glad your great orthopedic surgeon finally helped you.

You have a strong voice, and are such a fighter!

Yes, I am afraid here in Canada with our universal healthcare system, one needs a referral for everything, (except for very pricey, pushy private clinics not covered under the government's health plans that have popped up everywhere over the past several years...)

The hospital where I was seen by the neurosurgeon is actually world renowned for all manner of neurosurgery.

Anyway, I want to thank you so, so much for your, and everyone who has supported me here and have been encouraging me, that yesterday I made my way back to the ER after calling the nurse's advice line here, which this time I was able to have someone hear all my symptoms, and when she did so, as on my 30 minute walk the other day where I uh...experienced an episode of passive fecal incontence...something mortifying which had begun when the sciatica set in, but as well like yourself I suffer from IBS...(my GP just told me to take metamucil and buy diapers...), she recommended that if I could nt get an urgent appointment with my GP...(an urgent appointmant with him?? Ha.) to go to urgent care or emerg.

So, I decided to go to the hospital.

I was taken seriously by the triage nurse I suppose due to the incontinence and no pain meds doing a thing, she sent me to the rapid assessment area.

I was given a room, a young, compassionate yet serious doctor came, i told him about the pain after my walk, the passive incontince,however without numbness in my saddle area, and he said we could do a urinary retention utrasound, and if the number was very high, I would need to be seen by a neurosurgeon right away.

He said for pain he could give me a short course of prednisone, asking had I ever tried it for pain...

I said I have only had it during exherbation of my asthma, and that my mother, a severe asthmatic who had to take the drug regularily eventually developed type 2 diabetes, so I am always paranoid about taking it, even though logically with just a short course it will only spike my blood sugar for a few days.

He assured me it would be a short course.

He asked what the neurosurgeon's recommendation was, and I told him he did not want to do the surgery.

However the ER doctor said he had looked at my MRI again, had read the neursurgeon's note which apparently stated if no better, or has gotten worse I could be reassesed.

The ER doctor told me it's a big deal to "slice into a person's spine.", to which I replied, "Yes, I know, I am terrifed.."(Although at this point desperately want the surgery.)

Anyway a nurse came and gave me a dose of prednisone and did the ultrasound and told me I had a few pockets of retained urine, but that "The number looks good, I will have the doctor look at it."

I waited, placebo effect or not, the predisone helped ease my pain by about 60 %.

The doctor came back, asked if the steroid had helped, "About 60%, but it is not a long term solution."

He said I would only be sent home with a script for one day.

He then said that I woud e reffered back to the rapid neurosurgery assessment clinic, and see what they think. And as well, as I have been waiting ages to be called by the pain clinic he said they could look into other options.

So, the nurse came back with my d/c summary and script.

That was it.

Although the last time I was referred to the rapid neurosurgery clinic I was called in a couple days...

Admittedly not vey hopeful.

Indeed, not shelling out cash I dont have for PT, cant afford massage, osteopathy, acupuncture.

As I mentioned here I never learned how to swim, but will indeed at least get into the pool a d walk back and forth with the resistance of the water.

Walk more too...

Anyway, my ongoing saga.

Bless you for your help and support.

I pray today is kind to you.

@joy75 Just ten minutes? So typical of our health care system today. About ten years ago I had terrible back pain due to a fall. I went to three different orthopedic surgeons. Each one told me, in a similar way, that there was nothing he/she could do to help me. This was after a cursory inspection of my first MRI. Well, I kept searching and was directed to a neurologist who spent an hour and a half checking me over. Ultimately, I was prescribed a cocktail of meds that gave me my life back. So, we have to be our own best advocates. Have a blessed day.

@joy75 I'd be happy to look at your MRI "read" if you want to upload or copy/paste the text.
There are two avenues
1) neuropathy: the numbness pain is from something local
2) radiculopathy: the pain is referred from somewhere else (like your spine)
I think you have referred pain from your spine. You could test a bit by getting into "traction" (stretching your spine) and see if it brings some relief to your leg/feet. Then you know you have a compression or impingement problem from your lumbar spine. Also, the cortisone/prednisone brings relief. They shot it in your back/butt, correct?
You WILL need surgery if it is radiculopathy. (which I believe it is). Unless, of course, you don't mind being in a wheelchair and losing your mobility.
The prednisone and cortisone take down the inflammation and swelling and give your nerves some space to breathe. They usually last 3 years, 1 year, 6 months and then surgery time!
You don't swim in the water you just tread water and move your legs, strengthening your core. The best, absolutely best is Pilates as it strengthens your core and that holds everything in place. Find a free yoga class.
Are you overweight and out of shape? This puts pressure on your spine. As we age our core muscles get weak and back aches begin.
I'd suggest not being adverse to surgery or you will probably get stuck in the hamster wheel. Be willing - and show them - you want to do what it takes to get better and get out of there!
Neurosurgeon does nothing. They know when they can do something. There is nothing for them to do. You will need to see an orthopedic surgeon. I can tell you for sure if you send some of the MRI. best wishes!

It sounds like your symptoms appeared around a year ago. I mention this because my own pain began almost 25 years ago, and I'm still dealing with it. I'm now heading into my seventh surgery this month, hoping it will finally address the source of the pain or where it has shifted. MRIs are useful in showing what is affecting the spinal cord and nerves. In short, don't stop seeking help—sometimes the condition moves from one area or transitions from a disc herniation to degenerative disease. Unfortunately, some doctors aren't always fully transparent unless profit is involved. I hope you feel better soon.

Thanks for sharing your experience Heisenberg, although I am sorry you didn't get better results.

Since I had laminotomies from S1-L5 in 2014, I haven't had a recurrence of sciatica. The holes drilled in those vertebrae kept the vertebrae structure intact and also provided room for the sciatic nerves.

I have stenosis, scoliosis, and listhesis, which I think is called "spondylolisthesis" (basically it's one vertebra sliding ahead of the vertebra below it) and I have disc degeneration and the presence of osteophytes. I'm 71 now and ran about 25 marathons in my 30s and 40s. All that pounding certainly didn't help. But my ortho conditions I attribute to heredity, not running.

While I don't experience sciatica pain anymore (I've been through it twice, excruciatingly painful), my lower back is very stiff in the morning, not painful. My surgeon has told that my physical conditioning, specifically my core strength, is holding my lumbar spine together. I also lost 40 lbs since 2023 - from 190 lbs to 150 lbs - I'm 5'10" - and I think this has helped. I'm in the gym everyday and I'm grateful for that.

Most of the stories I hear seem to be like yours, regret over having the fusion surgery. As long as I don't need it to relieve sciatica, I'm holding off on this surgery.

Since 2022, I've had both knees replaced, right hip, and left shoulder. All were very successful and I have access to a great ortho clinic, including a spine surgeon. Even so, fusion is one surgery I'd like to avoid.

FWIW, I started dry needling therapy in the last three months, combined with "cupping". I have found it to be more effective that deep tissue massage to relieve tightness in my lower back.

Thank you so much Heisenberg. I hope that you find some relief, and thanks for sharing your story. Means a lot.

Joe

Thanks for sharing Pedro. Seven surgeries, yikes you are a solider!

To your point, it is up to us to learn as much about our condition and what the remedies are. AI makes that much easier. This allows us to have meaningful discussions with our surgeons and physical therapists. It is time well spent.

I wish you all the best on your upcoming surgery Pedro.

Joe

Hi Joy,

There is nothing to forgive. Your comments are thoughtful and heartfelt.

I'm 71 and can put my palms on the floor, but that's not the point. My lumbar spine is a disaster area, I've been through two bouts of sciatica, left and right side, and putting my hands to the floor has nothing to do with the pain.

A good surgeon would know better. If you don't mind, I suggest finding a younger surgeon. My criteria are for a Dr in their mid 30s to mid/late 40s, with a solid med school pedigree, and a residence/fellowship pedigree from a highly regarded hospital, ideally a "learning" hospital aligned with the local medical college. (Mayo, Cleveland Clinic, Medical College of Wisonsin/Froedert, are just a few.

Bless your Dr's heart, I'm sure he means well. Younger Drs are very ambitious and are building a practice and a reputation. Using my criteria, I found surgeons who had what I was looking for, and had done thousands of procedures already.

All the best to you Joy. Please let me know how you are from time to time.

Joe

@jackiet
Hi, I'm currently high tolerance but better than anything else I've tried and that's a lot. I'd sooner not be taking anything but the pain gets too much to ride out, they also help with sleeping.

I'm very interested in what you say about your digestive problems, could you elaborate?

I ask because I'm suffering chronic abdominal pain just now, had it almost 2 years. I'd been off opiates for a good while when it kicked off and had left it for weeks thinking it would just pass before going to the doctor.

He sent me to urgent treatment at the hospital and they found I had very high blood sugar which was a total shock to me as I've never been overweight and was (until the sciatica) a physically active person. So I have Type 2 diabetes, last blood test showed sugar was down but still above normal. I take Metrformin for to help with that.

My CAT and Ultrasound scans showed nothing apart from compression in lower spine, thats obviously the sciatica problem and I'd already had one for that years ago but this abdominal thing is a mystery.

My doc referred me to a Gastroenterologist twice and I've been knocked back twice due to them not finding anything obvious in the scans. I'm on my second stage complaint to the hospital. I had to crawl out of an MRI because I got claustrophobic and I'm currently waiting to see if they will let me have one sedated.

It's shifted from side to side over time, felt like being cut or burning now its a dull constant ache right in the middle. Skin is also very sensitive. I'm on Zomorph now for that pain as well as sciatica but like I said I'd had started before taking them.

Doc says it's just the diabetes effects, age, constipation with the tablets etc. At a total loss as to what's wrong with me. Had all the usual blood tests, nothing showed up.

This is driving me up the wall. I watch my sugar intake, keep well hydrated, tried all sorts of diet changes, nothing works.

Sorry for ranting on, just wanted to give you a clear picture and see if you had similar.

What is/was your experience with stomach probs?

@heyjoe415 Joe, you have a great story. Thanks for sharing. I was never a runner but took up cycling...nothing competitive. 30-50 miles on a picturesque trail. Easier on the old back. I currently have a pain pump that I am still waiting to get relief from. I wish many happy, blessed, and joyous years ahead.
Chris