Chronic Pain members - Welcome, please introduce yourself

hello

@donw200 Welcome to Mayo Clinic Connect. We are glad you found us! We are not medical professionals, and cannot diagnose. We are fellow patients, family members, and caregivers who share our experiences and what has worked for us [or not!], offering support and suggestions. How much time was there between your surgery and the onset of the foot nerve pain? Is there a chance there was a complication in the surgery that led to the foot pain? I lived in the Ventura area for 16 years, moving in July 2018! It is a beautiful area.
Ginger

I had this foot nerve pain for 5 years before the Stimwave scs.

Just saw this article in my newsfeed and thought the members in this discussion might find it interesting. I do take 1.5 oz daily of Manitoba Harvest Organic Hemp Seed Oil but not for pain.

CBD products, hemp oil may be helpful but more research is needed, Mayo Clinic review says
-- https://newsnetwork.mayoclinic.org/discussion/cbd-products-hemp-oil-may-be-helpful-but-more-research-is-needed-mayo-clinic-review-says/

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar and hips for months and it has escalated to the point I can’t walk my dog. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then RF nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all. help. My surgeon has asked me to come in for a chat this week. We all know that when a surgeon calls you in, he’s gonna tell you that you need surgery! In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real 1) to help pick up the numerous things I drop (due to cervical fractures), retrieve things and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.

@johnbishop Thanks so much John. That was a succinct overview of the cannabis industry. I appreciated knowing that the cannabis derived tinctures are being accepted because they work.

As usual, be a team with your medical providers, And do follow some of the unbiased reporting. Be particularly careful of OTC and online Products. They may belie the hype about them. Dispensaries are really quite thorough with their criteria for selection of products qualified as medical cannabis.

However, we all are hungry for more research and testing. It appears we must first modify the federal laws about transporting across state lines.

Be happy and content today, John. My best to you, Chris

@jmweissler You sure have been through a lot. I knew someone who was paraplegic who had a service dog that did amazing things. She helped run the local chapter for Canine Companions for Independence which is an organization that matches trained service dogs with people who need them. I am a spine surgery patient with a single level fusion in my neck and I am doing well. You might do well using a wheel chair to scoot around in which will exercise your legs and you wouldn't have a risk of falling. It must be difficult to adapt to that much disability from spine surgery. Are they treating your osteoporosis? I'll mention this as a possible reason for osteoporosis, and that would be a problem with a parathyroid gland that causes it to pull calcium out of the bones and have a very high blood calcium level. My mom had this issue and after they removed one of the 4 parathyroids, her blood levels were fine. They test that during surgery to make sure they got the right one. It would be worth asking about to see if your docs checked for that. I'm glad you have a dog who helps you smile. That's important when you have a lot of stuff to deal with everyday.

@johnbishop Hi John, thank you for the article. I must be the only person in the world who tried CBD oil and got no help. Maybe I wasnt taking a strong enough dose, but where do you get that info? I had no idea what strength or how much. It’s bewildering. ........Karen

Hi @karen00, I’m tagging @artscaping who I think I think may be able provide some answers for you.

@karen00, @johnbishop This situation is disconcerting.
Let's tackle the dosage first. Cannabis products must show MG and the ratio of CBD to THC. In addition, if you are using a tincture there will be a dropper in the bottle and more and more I am seeing the mg printed on the side of the dropper just like in your kitchen measuring cup.

As to what dosage is right for you using a tincture distribution system.....that will depend on the time of day and whether you hold it under your tongue or blend it with your morning coffee. When the cannabis tincture is held under the tongue it passes through the porous membrane under the tongue. Results will be quick....10-15 minutes and will last about 3-4 hours. When you put your tincture dose in your beverage it will have to go through the digestive system. The results can begin to show within 45 minutes. If it has a second wind, more could be released. I haven't done this for a while but I remember this lasting about 3 hours.

So...now to the more difficult part. You need to have some help coming to a decision about the size of the dose. A couple of days ago, I actually counted the drops for a member so that she would understand. If you are using the dropper measurement that is easier.

For help with the amount to use, you need the help of one of the dispensary staff or a representative at the pain clinic or the pharmacy distributing it. The folks in the dispensary want to get it right so you will appreciate their service and trust their products. Let's say it is morning.....and you want to start off with a relatively pain-free day. You might choose a 1/4 dropper of 1:1 CBD/THC or a 1/2 dropper of 2:1 CBD/THC. You will be encouraged to start with less if this is your first experience and with less if you are testing a new product. Also, your body adjusts to the cannabis just like all other medications so you will need to up the dose at a later date. One company is now offering Cannabis "flights". There is a link below.

I think you will be seeing some better measuring options. I am happy to help with any questions you may have. My cannabis journey is about 4 years now. I have a pretty fail-safe system. A day with only cannabis for pain, the growing pain of small fiber neuropathy (SFN).

I am also going to attach a link to the current publication of Leafy. It is quite informative. I do want to respond to your statement about...."Am I the only one who isn't helped by CBD?"

The cannabis industry is in a boom stage. Organization, labeling, and information are left for later. Right now the dispensaries have to meet all of the regulations, maximize their inventory, never run out, and provide a positive customer experience. What also happens is that folks dose themselves with the wrong product, eg. Hemp Oil, and learn later that there isn't enough cannabidiol in the Hemp derivative. So....wrong product. The placebo effect also jumps in. Folks who don't want to be left out of the rising popularity of cannabis.....sort of makeup or embellish their results. Wrong purpose.

Thank you for stepping up and shouting it out........."this isn't working for me". We will be here for you. Chris