I was over 200 lbs. for 2+ decades. I was over 300 lbs. for 25 years. In 1996, I lost 111 lbs. with Fen-Phen, taking me to 225 lbs. As soon as it was off the market, I regained 150 lbs. In 2001, I weighed 360 and had been there for at least five years. I had an RNY Gastric Bypass and went down to 150 lbs. for less than a day and began going right back up again. In 2019, I weighed 320. In 2020, I weighed 390. In 2022, 405 lbs.
Then I started GLP-1s and now weigh 169 lbs. I am being told how “skinny” I look and maybe I need to stop losing weight. I decided to look up what the charts say I should weigh at 5’1″ tall.
100-135 lbs.
While I cannot imagine being that weight, I’m going to let everyone know that my body is begging me to keep going down. Personally, I have no weight goal, just wanting to be healthy and alive.
How do I know my body is wanting me to keep going down? Because I have severe spinal deterioration and smashed bones with bulges, and a lot more (see below), because of being so fat for so long. My being fat, quite literally, squished my spine together from the weight I was carrying.
I will repeat this again below, maybe more than once, that if I had not lost weight with Trulicity, Mounjaro, and compounded tirzepatide, it is possible I would not be walking now… and if I was, I would not have been in the very near future.
Losing 236 lbs. has saved my mobility.
When Pain Doesn’t Quit
I have had pain down my left leg for years. Sometimes it was so bad, before GLP-1s, I was drinking a bottle of amaretto some nights to cope with the pain. I tried ibuprofen, which I am not supposed to take because of the Gastric Bypass and I have Chronic Kidney Disease 3a. I meditate for pain relief and that usually works well, but this was bad. Hence the amaretto. After starting Mounjaro, I bought a bottle of amaretto, expecting to be out of pain within a few hours, but my first sip of it? That liquid I have loved since I was 18 years old tasted like mud. I took another sip and it was so disgusting. It really tasted like mud! Mounjaro eliminated any desire to drink alcohol ever again.
Was it sciatica? I had a cortisone shot and that did nothing. Was it a hamstring pull? That wasn’t it, either.
There was the referral to Physical Therapy and I went one time. The therapist, who was kind, gave me exercises that hurt so badly. She said it wasn’t sciatica or a hamstring, but was coming from my spine. I took that information and stored it in my head, not doing anything for another few months.
I went back in to the PCP two weeks ago with a great deal of pain down my left leg. There a buzzing feeling in that same foot. The reason I went, though, was a lump next to my spine. That worried her (and me!) with my history of Stage 2 malignant melanoma. I’ve had the cancer dug out of me three different times. I was given referrals for an MRI and to see a neurosurgeon with those results. Both of these appointments were completed within a week.
The neurosurgeon said the lump was a lipoma, a fatty lump that grows out of rollicking fat cells. I have certainly had plenty of those (fat cells) over the years. We moved on to the MRI.
The MRI did not have good news. He explained it that my L4-S1 had a very big bulging disc and he thought it would herniate before too long.
There is a saying in medical circles: You visit a surgeon, you will leave with a surgery date. That is exactly what happened.
The doctor, who was fantastic, offered me four choices: Do nothing. Go to PT again. Have an epidural that will last a few months and then he would need to do surgery to fuse the bones, or we could just move to surgery.
I chose surgery. It was scheduled that day for less than a month away.
One note about the meeting with the neurosurgeon. He told me he would not have done, or been able to do, surgery on me even a year ago because of my weight. I weighed 285 lbs. That in and of itself was eye-opening.
Clueless to Educated
I was a midwife. Give me any part of a female body that goes through the lifespan of changes and I’ve got that covered. I know zero about the spine. I was just as ignorant when, after having COVID, the docs and imaging found I had diastolic heart failure. I knew nothing about the heart, but learned about it quickly.
The same for the spine. I had absolutely no knowledge of what he was talking about. Surgery sounded like the best option. Until I went home and began researching.
From Google to AI to Reddit, I began my education. I read medical papers. Listened to folks who had made the choice to have surgery because they could not walk or were in excruciating pain. I asked AI to explain things in simple English and that helped piece the information together. I also turned to my medical friends… nurses, midwives, and doctors… asking for their knowledge and thoughts about my choices.
Everywhere, the answer to, “Should I have surgery?” seemed to say it should be an absolute last option. Reading the first-hand experiences terrified me. Excruciating pain moved from the leg to the post-surgical back. It took many months to years to heal from the fusion surgeries.
Weighing the realities about my situation… I could walk, even miles. I could tolerate the pain, even if I did have to lie down and meditate or sleep for a few hours sometimes. I was still able to sit and write.
The answer clearly said, “Not yet.”
I called and canceled my surgery.
The neurosugeon had ordered a CT and X-ray of my spine in anticipation of surgery. I quietly kept those appointments, wanting as much information as I could if I needed to make a different decision in the future. I got the those results yesterday.
Turning to AI for Help Understanding
The MRI, CT, and X-ray results reports were each pages long. Those results were in a foreign jargon and I needed to learn what was going on in my body fast and in a comprehensible way. I turned to AI for help after researching reviews of different choices of AI and which seemed to have the best medical knowledge.
I’ve only very recently begun to use AI and have found it quite helpful with what I’ve asked it. When asking these questions, I wanted resources, then went and read papers and studies that AI directed me towards. I wanted to read the information directly from the source. Asking for sources, I’ve found, is key to the questions I ask AI when I want specific answers I can’t find myself. It was easier to search Google once I had the proper terms from the sources I got from AI.
I need to say that AI continually (and annoyingly so) reminded me this was not medical advice and was only on what it could find online. I was not to use this information as any kind of diagnosis, just information for me to understand the MRI, CT, and X-ray in a cumulative fashion. “Yes, yes, AI. I know you are not my doctor. I did not ask your advice. I want information. That’s all.”
Once I read as much as I could, I began asking AI to tell me what things said on the imaging reports in normal language so that I could understand. I also told it to tell me in as simple language as possible because I was coming from no knowledge of spinal medical jargon.
What the Spine Imaging Tests Told Me
After much back and forth, I had AI give me a summary of what was found, in numbers and locations, so I can keep that information in my mind as I can focus on healing what I can as I do PT starting next week. I am putting AI’s words in a quote as I would any other source.
Based on the information you’ve provided from your MRI, CT, and X-ray reports, here’s an overview of your spine’s condition:
Lucky? That the list of maladies in my spine is as long as my spine itself?
Before I even got the results of the CT and X-ray, my PCP said it was a darn good thing I had lost over 200 lbs. because if I hadn’t, I would have been crippled now and if not now, I would have been very soon. She said the damage can slow, but not be repaired from my weight loss.
I am thankful I am walking. I could not walk two years ago. Now I can walk for about 2-3 miles (had to start over after the foot stress fracture). That would have been unheard of ever in my life, even after Fen-Phen and the Gastric Bypass. My insides are so much healthier than after the Gastric Bypass. Even though I am 23 years older. By this time after the Gastric Bypass, two years afterwards, I was already starting to regain the 210 lbs. and adding even more. I’m at two years on GLP-1s on July 28, 2024 and still losing as my body continues its healing. I really hope I can keep this trajectory up.
I feel better writing this out. I will be sharing it with those I love instead of trying to explain what is wrong beyond, “I crushed my spine.”
I’m still scared, but determined to keep moving forward. I will do what I can now and not mourn (too much longer) about what I have done in the past. There is no changing the past. It was what it was. I can only move forward.
Onward, ho!
Beautifully expressed, both good and bad. Prayers for your continued healing!
Thank you, my beloved friend! I am so glad I know your hug from just a couple of weeks ago. I still feel it!
I insist on a healing!
I love you!
Barb, your story brought tears to my eyes. Number one, you are an incrediblely talented writer and story teller with a giant heart. Your telling of your joys and pains on your journey to health are gripping, engaging and so educational. Your story will help so many people many whom you will never know. Thank you so much for your strength and courage to share your journey! I will keep you forever in my thoughts, prayers and in my heart! I look forward to meeting you one day in person to give you a giant hug!
On a personal note, my hubby had bulging discs and was told his back was that of an old man’s maybe 20 years ago or so. He had 3 epidurals a couple of weeks apart and it gave him tremendous pain relief. He also learned some exercises from physical therapy that helped. His back was not as bad as yours currently is but it helped Jeff so much.
Thanks Barb for being such a kind caring soul!
Hugs!
Gina La Benz
Anchor Moments
Gina, thank you SO much for your kind words… that means a LOT to me! I do love writing.
Thank you for sharing Jeff’s story with me! VERY encouraging. That means a lot. Really, really.
I look forward to meeting you when you are journeying around. We need to hug!!!
Thank you, again.
Giant hug!