Severe Stenosis - Doc advises surgery

@babette Hi there I understand what Ablations for herniated disc's & spinal stenosis do. I have had a total of 4 Ablations in my Thoracic Spine, 2 in my lumbar area & I too have lumbar stenosis in my lwr back. As well as I have 5 herniated discs in my cervical spine. In my opinion having chronic pain as a result has not been easy on any if us. However the question u want to know about spinal stenosis about having Surgery is it a fusion he wants to give you or what type of Surgery? Has your Dr. Told u what type of procedure this would be & what is the percentage of outcomes for this types of surgeries? Look we all have different issue's concerning our spinal issue's but please do not be ready to jump into surgery just because 1pain mgmt Dr says so. Get a 2nd & if necessary 3rd & 4th opinions when any type of surgical procedure is in question. Over my past 15yrs of misery dealing w/severe chronic pain as a result of my poor broken dwn spine, I was told by 2 Dr's to have a spinal cord stimulator not 1 but 2 put in. & another 2 Dr's told me I need a lwr spinal fusion & for my cervical as well. Well guess what I said no to all of them. I found a great Dr in NYC part of NY Langone Hospital system & he advised me to get on Medical Cannabis for pain & physical therapy & guess what it helps. As a matter a fact he advised me against Surgery. I'm glad I listened to him. So b4 you are ready to make that decusion get at least 2-3 more Dr's. Opinion b4 u do any type of surgery. Because once it is done there is no going back. I wish u well & hope u figure out what ur going to do? Take ur time & be safe.

@babette I agree, get a lot of opinions. Also realize that there are great spine surgeons and there are spine surgeons who do things that cause future problems that might cause the need for another surgery. I am a Mayo spine surgery patient for cervical stenosis and I am very glad that I had fusion surgery. It is a big decision that only you can make when you are ready unless you find yourself in an emergency situation. Find the best of the best spine surgeons that you can and get their opinions. You may also want to read the book "Back in Control" by David Handscom MD. He is a spine surgeon who later became a spine surgery patient himself. If the stenosis is causing damage to your spinal cord or the nerves exiting the spine because of compression, that is what surgery can address and also vertebrae that slip past each other (instability) which would also affect the available size for the spinal canal. I had a compressed spinal cord, and I improved a lot when it was fixed and got back to normal. Spine surgery is also a long recovery, and it's a bigger surgery and longer recovery at the bottom end of the spine because that is bearing most of your body weight. If you can come to Mayo for an opinion, I would highly recommend it. Keep in mind that spinal cord damage and nerve damage can be permanent and cause permanent disability if it is not treated in time, so that should be a factor in decisions you make. Here are a couple of patient stories from my surgeon at Mayo and one of them is mine. I highly recommend Dr. Fogelson.
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/?utm_campaign=search
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I had a lumbar fusion - TLIF = transforaminal lumbar interbody fusion. 3 levels on one side, I think L and 2 on R, I’d have to look it up. Was in 11/2011. I had degenerative disc disease, spondolisthesis (?sp? where discs are not lined up) and can’t remember if herniated vs bulging discs. I had back pain but it suddenly became unbearable as a synovial cyst at L4 ruptured and bled into my spinal fluid/cord area. Woke me out of a sound sleep yelling like a banshee. I had GREAT relief once I recovered (I had a neck fusion with plating 6 weeks after back surgery) so the recovery was longer in general. But I did really well until about 3-4 years ago when I, STUPIDLY, did something at gym I knew I shouldn’t have done. My fault. Screwed up discs below my fusion. Last year I was told I needed another level of fusion at L5-S1. I was scheduled for it but changed my mind. Got other opinions and now have a spinal cord stimulator which helps a fair amount. I just really didn’t want to have another major surgery (too many surgeries for many things in past 10 years!). I definitely would check out at least another opinion or two. One thing to keep in mind, speaking as both a patient and former RN - get another opinion OUTSIDE of your doctor’s partners/clinic. It is often common for clinicians to ok their partner’s proposal without question. A second opinion outside should be able to utilize your recently done CT scan, MRIs, XRays, etc. so cost should be minimal and most insurance incl (I think) Medicare, pays for second opinion. Good luck!

@babette I just had surgery for stenosis at Mayo. I also had other problems. It was a 9 hour surgery and the next day they had to put me out again to inject Cement between T-10 & 11. My nerves were pinched severely at L-4 and L-5. It's a rough surgery, but well worth the end results. My surgery was done on the 9th of June. I ended up longer in the hospital ( 7 days) because of low blood pressure and something off in my blood. I ended up with a red blood cell infusion. The surgeon I had at Mayo was excellent, but the assistant surgeon made mistakes on my medication (the way they gave it) Coming out of the Covid-19 to finally do Elective surgery through the Nurses and all in a Tizzy. When I( was admitted they didn't have very many patients, when I left if was full and I don't think they had enough staff to take care of all of us. I would have the surgery, unless you want to live with the pain. I had my surgery done at Mayo in Rochester. I hope this helps. I have to wear a brace when I'm up and sitting down. If I'm laying down I can take it off. Blessings, Jeanie

I had surgery for spinal stenosis 3 years ago. The pain down my left leg was unbearable. I’m so glad I made that decision but I saw 3 drs before I decided to have my surgery. Now I have L4 & L5 herniated/ bulging. I said no immediately to a spinal fusion. The dr wanted to do that to my daughter when she was 6 for her scoliosis from Muscular Dystrophy. We said we weren’t putting a child through that cause as she grew she’d need another fusion. I highly recommend spinal stenosis surgery! But now I’m in constant severe pain when I walk. Tried NSAIDs, no luck, Medical Marajuana, no luck. I’ve been on Opioids for 2 years now and feel awesome. Not high great, but normal again. I’ve found that CBD Gummies work too. Tried them a few years ago & no luck. But now the gummies with my Percocet work great. No to the stimulation but my Tens device seems to help too. It seems like everyone’s pain relief is different as is their pain. Good luck but I would definitely say no to the Spinal Fusion Surgery!!!

Hi. If I pass the psychological assessment, I'm going to have a SCS trial later this summer. I read with interest your comment about a SCS helping a fair amount. Could you elaborate a bit about the ways in which it has helped you. For example, how far can you walk compared to before? What other forms of exercise can you do? Etc.
I had an L5/S1 microdiscectomy in 2010 during which the surgeon tore the dura. That was the start of ever increasing nerve pain. Was on opiates for 8 years but in 2018 I graduated from Mayo's 3-week pain rehab program. Had been doing okay but then about 18 months ago I developed allodynia in both buttocks. Now sitting has become terribly painful. In addition, I now have right-side lumbar pain and shoulder pain. It feels like my whole right side from lumbar to neck is trying to compensate for pain & weakness. Hurts to sit, stand, walk. Only time I get relief is when I'm asleep of lying on my left side with pillow between my knees.
I'm 65 years old and have gotten lots worse in 10 years. Fearful for what the next 10 will bring.

Thanks for any further info you can provide about your SCS. (By the way, what kind is it? I'm have a trial of Nevro's HF-10).

--Elsa

Hi! I am sorry you are so miserable, your pain sounds horrible. I don’t know if s SCS will address your shoulder issue, that is something for your pain doctor to address. (Of course having less pain anywhere is better than no relief?!) I trialed and now have a Medtronics Intellis system. Before I had it, I couldn’t sit for any length of time and now I can sit in a chair and watch tv or be on a desktop computer. I haven’t gone to a movie but I got it in late Jan and by time I was healed, Covid had become an issue 😢 I had been unable to walk far at all without pain. Now I am at times able to do mile to two miles. Sometimes my R foot will start to bother me, occ my leg, but very sporadic. The foot is quite possibly related to a previous accident years before and NOT to my spinal problem at all. In general, I have to say it has improved my life quality overall! I love to be in flower gardens/yard. Before I could barely be out there more than an hour or two, now it’s up to 5 hours. Digging, bending, squatting, planting, etc! Amazing. I might be generally sore all over that evening, but it’s from arthritis in many places, not solely related to spinal issues. Mostly my neck, actually, which is a hot mess. LOL. I especially notice that I am not counting down hours to my next dose of aspirin or ES acetaminophen. Before I was taking one or two Vicodin (lowest dose) late afternoon - bedtime. Now if I do, it’s 1/2 tablet at bedtime because my neck is really uncomfortable. So overall, for me, it has made a big difference. One thing: I REALLY made sure I followed all the instructions postop in what NOT to do. Difficult as I live alone, but I really did not want yo mess things up! Follow instructions! :>) Good luck!

Thanks so much for your reply. I'm glad that you've found substantial relief from your Medtronics SCS. I'm at least 7 weeks away from a trial and am starting with Nevro's HF-10. Is the Medtronics Intellis high-frequency or low? The HF-10 is high frequency which appeals to me because I don't think I'd like paresthesia; would prefer no sensation. I've held off on doing an SCS for a long time (10 years) but now I'm eager to do the trial because my pain has gotten substantially worse and it's hard to get my mind off it much at all. Thanks again for sharing your experience and for your support.

I was a bit concerned about the parasthesia part because I found tinling an annoyance when it was part of my pain/numbness/tingling symptoms. But during trial, I realized it doesn’t feel the same as tingling from my problem. I’m not sure how to describe it, just that my brain knows it’s “ok” if that makes any sense whatsoever? So I got used to it rapidly and don’t think about it. I can say that years back, when I tried a TENS unit, I hated it for that reason! So, yes, somehow, my brain knows friend from foe?! LOL!

@babette I'm one that has had the surgery on June 9, it was a 9 hour surgery and was tough, but I could tell I did have the stenosis any more. I went through a lot of different things before there was nothing left but surgery. Because of degeneration of my spine which caused a scoliosis the surgeon had to start from T-10 to my pelvis. You have to be patient through the recovery and wear a brace and I can't bend, twist or lift anything over 10 pounds. I had a reacher and and other helping things from my hip surgery. It's a long recovery and I have soft bones so have been on Tymlos an injection with a very small needle into my stomach to make my bones stronger. I have to be on it for 2 years and then be on another one. I try to walk 2 blocks 3 times a day, today it is going to be very hot. If you have a lot of pain and have tried other things to help it I would recommend going to Mayo Clinic in Rochester. There may be one closer to you. I had the best surgeon. I'm still in pain and almost 6 weeks from the surgery. I got off of Oxycodone and they also want to get me off of Tramadol, but that's going to be harder. I was going every 3 hours today I'm going to try and go every 5 hours and take a muscle relaxant now. Best wishes to you. Thoughts and prayers are sent your way.