Spinal Stenosis

Join the Conversation on
Spinal Stenosis
6.1K people
0 stories
372 posts
About Spinal Stenosis
Explore Our Newsletters
What's New in Spinal Stenosis

I Can’t Believe It…My Latest Lumbar X-Ray Uncovers a Missing Diagnostic Link in My Story

I have some really amazing and interesting news…I’d even go as far as saying exciting and life-changing! Longtime followers of my blog will know the diagnosis of the rare bone disease “Osteopetrosis” has always been bounced around since my femur pathologically broke in 2014.

My Orthopedic Specialists were confident in this diagnosis based on clinical symptoms (pathological bone breaks and patterns of my bone they examined through surgery), plus my blood tests and bone density tests always showed low bone turnover and high bone density……key Osteopetrosis disease markers. My endocrinologist at the time didn’t want to confirm the diagnosis for various reasons so it remained a “maybe” situation.

I received my spinal X-ray report this week, which was done with the latest MRI/Bone scan. The radiologist was so thorough on the day, and the Dr who has written the report is one of their senior ones. I didn’t think much would come from the humble X-ray.

However, to my surprise, something new cropped up that has never been reported before, and this is what it says:

“The pedicles appear slightly short suggestive of a degree of congenital canal stenosis. “This means I’ve had since birth.”

So, I looked up some credible research papers on the topic, and all report it’s caused by “Osteopetrosis”!! Bingo….it appears we’ve been right all the time.

It just makes everything make sense, and it explains why, as an adult, I am so disabled with it. It’s also quite a miracle it took as long as it did to progress to this level. It would appear I have the intermediate type, which is a mixture of the dominant infant form and the milder childhood/adult version and explains the severity of my disease in adulthood. I have been truly blessed to have lived 48 years of a full and amazing life before it really hit me.

With the infant Osteopetrosis aspect in my disease, I could have died either as a baby or in early childhood. It’s just incredible the way I have been protected.

Haunting Memories
I’ve always had two standout childhood memories, which are as clear as if they happened yesterday. The first one is surgery to have numerous baby teeth removed. I was about 7 or 8 years old. I was put under anesthetic for the procedure, but I remember waking up feeling so distressed and my mouth bleeding profusely. I also remember wanting my dad who was unfortunately at work. I’m sure that didn’t make my mum feel great, but dad was the extra caring parent, so my response made sense. Interestingly, one of the major symptoms of Osteopetrosis is that teeth come in later than normal, so another diagnostic box ticked.

The other memory is an even earlier one. Osteopetrosis in children makes walking painful due to spinal stenosis and bone pain, among other things. I remember my mum wanting me to walk a relatively short way from our home to her friend’s house. I just couldn’t do it, so she put me in a pram. I was only 4 years old, but I remember feeling so embarrassed as I felt I was far too old to be in a pram! I also remember I sadly had no choice.

Does A Diagnosis Make a Difference?
The diagnosis doesn’t change the outcome in terms of treatment or cure. There isn’t any, but it answers so many questions for me, and that’s priceless! Everything I’ve experienced now makes so much sense.

Yes, it’s rare. Yes, it’s a crazy disease. Yes, it’s progressive, and I’m acutely aware of the ramifications of that as my symptoms and my pain levels increase.

But I now know why, and for some reason, that knowledge removes its power over me. It’s part of me rather than being something attacking me from nowhere. When asked what’s wrong with me, I will now simply say: “I have a rare disease called, Osteopetrosis! “

1 reaction
See full photo

Light therapy?

I’m so glad winter is coming to and end and spring is blooming with longer sunnier days. I find that although I love the rain…the cold and cloudy days makes me feel worse. Some days I just want to disappear …does anyone use light therapy to get through the winter? Has it made a considerable difference?
#Depression #ChronicFatigue #Grief #Migraine #Arthritis #SpinalStenosis #Fibromyalgia #MentalHealth

5 reactions 2 comments
See full photo

Hang in there

A lot of times we don’t see all the things we do everyday. We do things for others so much more than we do for ourselves. And sometimes those things that we do for our families are in turn helping us. Maybe we help out our parents so that we’re not worrying or stressing over the fact that they won’t or can’t do those things for themselves. A lot of times we have to choose between this or that so we can get through our day. And sometimes we just want to disappear from the world so that we can cope with our own troubles. I get it. Not everyone will understand what we are going through but we hang in there. Somehow we hang in there and get through our day. And even on the days we can’t seem to get out of bed. We breath…sometimes breathing is our accomplishment. So to everyone that read this far in my vent…hand in there! Breath! And one last thing….try to love yourself…with all your problems…all your pains and illnesses…all your craziness! #ChronicFatigue #ChronicIllness #Migraine #Fibromyalgia #SpinalStenosis #MentalHealth #IrritableBowelSyndromeIBS #Arthritis #Caregiving #ohsomuchmore

17 reactions 3 comments


I’m in one of depressive moods. This one is bad!!! I have been on the same medicine for 15 years with adjustments here and there. My house is in shambles. I don’t clean a lot due to spinal stenosis, I am in pain almost all the time. Can’t stand more than 5 minutes at a time. Plus I have a very small problem with cerebral palsy that affects my right leg only. I need to get better. I need to take control of my life again. I am jut so overwhelmed with everything. My head is tired, my body is tired. I don’t want to feel this way anymore. I just can’t. Someone out there has to feel the way I do at times. Please give so me help on the way you handle things. Therapists don’t help anymore, I could probably be a therapist at this point. Someone please help me!!!!!

When someone asks me,

"What is wrong?"

I simply reply with, "I'm just tired."

And they agree;

they say to take a nap.

But you see,

this exhaustion, it is not something simply

resolved by sleeping. I cannot simply shut my eyes

and wake up okay. I need a break from my brain, my heart,

my life. I need to go away

for just a little while.

Or maybe just for forever.

7 reactions 3 comments

East Meets West: How Alternative Therapies Complement & Help my Sjogren's Journey

As a Reiki Master practitioner and a student of yoga for 25 years, I have personally benefited from complementary modalities over the years -- long before my Sjogren's diagnosis (a serious, complex systemic autoimmune disease).

Before I launch into how I have personally experienced positive benefits from complementary therapies, remember that you have full autonomy over your body. What works for me may not appeal to you, and/or work for your body's specific needs and your symptoms.

Listen and pay attention to the signs and messages your body sends you. Do not push your body to the point of extreme pain, or allow any practitioner to tell you what you should do with your body. You know your body the best!

As a Sjogren's patient, I deal with a myriad of complex systemic issues and also have severe spinal stenosis so I deal with physical limitations. In the past, I hiked long distances but I can still enjoy outdoor walks in nature albeit my walking mileage is reduced. I am also a former dance fitness instructor so dancing and movement have always brought me great joy in my life.

While I also take prescription medication for Sjogren's and see multiple Western healthcare specialists, I also listen to what my body needs outside the parameters of Western-based medicine. I see a Traditional Chinese Medicine acupuncturist and I have found pain relief and ease of my symptoms through regular acupuncture sessions.

If acupuncture sounds too invasive or you dislike the thought of needles (although acupuncture needles are small and painless), there are other modalities such as gentle massage, Reiki (which can either be done hands-on or hands off), Bowen therapy, craniosacral therapy, EFT/tapping, myofascial release, aromatherapy, sound healing, and yoga nidra.

Reiki is a non-invasive healing modality. Studies show that reiki can help reduce stress and anxiety, and ease pain and help relieve symptoms related to chronic illness. Like acupuncture and massage, it is recommended to have Reiki sessions done on a regular basis.

While I personally tout the benefits of yin yoga to stretch my connective tissue and lubricate joints, I understand that yoga is not an option for some patients based on their limited mobility.

While other yoga styles focus on the muscles (Yan style of practice), yin yoga is a passive practice that holds yoga poses/stretches between 3 to 5 minutes. Chair yoga is another option if you are unable to sit or lie down on the floor.

Last year I added qigong to my daily self-care routine. Qigong is a gentle movement practice rooted in Traditional Chinese Medicine. It coordinates breathwork and meditation as you move through a series of slow-paced body postures and flowing movements. Qigong is very relaxing and as someone who deals with bouts of anxiety, it helps ground me and release tension and stress.

If interested in exploring alternative therapy modalities, along with Western medical care, I encourage you to be curious and ask yourself what sounds or feels good to your body.

Discuss with your doctors before starting a new movement practice such as yoga or quigong. Vet practitioners and research them online. Make sure they are certified and licensed practitioners. Read their client testimonials and reviews. Ideally, they should have experience working with clients who have a chronic illness.

There is no "one-size-fits-all" when it comes to exploring non-Western complementary therapies. If one doesn't work out for you, try out a different modality or practitioners. Look into community-based acupuncture centers which usually offer lower rates or research your insurance plan to find out if acupuncture is covered (some plans sometimes cover massage therapy).

Self-care is not selfish and dealing with a chronic illness can drain us not only physically but emotionally and mentally. I have personally benefited from looking outside Western medicine to help ease my physical pain and bring me comfort and peace throughout my chronic illness journey. I encourage you to find what works for you and remember you are not alone in your journey.

#sjogrens #autoimmune #Reiki #Acupuncture #massagetherapy #traditionalchinesemedicine

3 reactions

Misdiagnosis or possibility?

It felt as if my life had literally been turned upside down when I was diagnosed with spinal stenosis two years ago. Not such a big deal you may think but I was told to stop running which was truly my sanity.

My BPD and MDD need as much help as they can get and running was it for me. My BPD had become a lot worse over the years and running had restored some stability and enjoyment in my life.

A radiologist and neurosurgeon confirmed the diagnosis as did a spinal surgeon a year later. I was told that it would get worse, that surgery may be an option in the future, told to do lots of stretching, take a pile of pills every day and get on with my life. As advised, I stopped running and felt as if my world had collapsed. BPD on overdrive.

Fast forward to a month ago. The neurosurgeon requested a follow up MRI and told me last week that there is now no sign of spinal stenosis! What??? As I understand it, it isn't curable so what is going on?

I did the fish mouth thing when he casually mentioned this and eventually asked him what had happened to the spinal stenosis diagnosis. He dismissively mumbled something about 'looking at that' and changed the subject. I could not concentrate on anything he said after that. Duly dismissed. By the end of the consultation he had still not offered a possible explanation and considering his dismissive attitude, I was reluctant to ask again.

For the past two years the possibility of this progressing and impacting my mobility have made me extremely anxious. I have a son who has many mental health challenges and requires a certain degree of care. I have worried myself sick about the possibility of not being able to do this in the future. Now it is not even or was even a thing??

Has anyone had a similar experience with a spinal stenosis diagnosis or know whether it can heal? #stenosis #stenosisspine #confused #Misdiagnosis

6 reactions 3 comments

New Hashtags to Add to My Collection and a Question

I had MRI’s this week and found out I have yet more issues to add to my ever growing collection. Some I already knew I had, so this was just confirmation. Others are new. Are you ready? Here we go! 😂 These are all related to my cervical and lumbar spine. #Scoliosis , #Arthritis , #SpinalCanalNarrowing , #BoneInflamation , #SpinalStenosis , #bulgingdiscs , #PinchedNerve , one disc almost completely gone. Lots of fun stuff lol.

I’m being referred to a Neurosurgeon, most likely for #SpinalSurgery . I’ve had that before for an emergency spinal fusion, so I expect to be out of commission for awhile. Not sure how I’m going to make that happen. Being out of work for weeks or months, and no one to help me while I’m down. It’s a bit concerning, but I’ll cross that bridge when I get to it! (Trying to stay positive!)

Question for my Mighties! Have any of you ever heard of bone inflammation/infection? They said it’s not cancer, but what the heck is it? Medical term is #BoneMarrowEdema . Anyone know how that’s treated or what I can expect? Thanks in advance for any Mighty wisdom you may be able to offer!

5 reactions 4 comments


Burnt-out from the ignorance that comes from the mouths of so called trained medical professionals whom attended society's schools to acquire a stamp of approval that they specialize in whatever 🙄 and obtained A DEGREE.

#Allergies #SpinalMuscularAtrophy #Anxiety #GastroesophagealRefluxDisease #SpinalStenosis #ChronicFatigueSyndrome #BrainInjury #MentalHealth #CardiovascularDisease #RheumatoidArthritis #Osteoporosis #Peripheral #InflammatoryBowelDiseaseIBD #InflammatoryArthritis #CrohnsDisease

39 reactions 9 comments

I'm new here!

Hi, my name is SerenitySea. I'm here because I suffer from Chronic pain from severe cervical) which I just had surgery for) and lumbar spine stenosis, depression fibromyalgia, arthritis, osteoarthritis, bipolar disorder and PTSD. I feel alone as I have since my mother died at the age of 65. Among other serious illnesses that caused her early death 14 years ago she also suffered from fibromyalgia and
Spinal stenosis, depression, and arthritis. She was the only person who knew what I go thru. I live with my dad and I love and appreciate him but as my mother once told me "your dad doesn't think it's as bad as it is. He is the same way with me. He's not mean but I can tell he doesn't realize it still to this day. Living with me is probably not so easy. But I try. My dad is 79 but healthy. The guilt I feel when I can't cook or do dishes and other chores like I used to. Especially after an accident I was in almost exactly a year ok ..eats at me. So what I'm looking for is people who know how I feel and what I go thru because they do too. For people like me feel alone because those close to them don't really get it. Someone who we can support each other. After all these years I honestly don't think he nor my adult kids have really researched about fibro and chronic pain. When someone says ",man this weather really has made my shoulder or hip flare up". After they as me what's wrong..what's wrong? Really? I feel empathy for them because I'm sure their pain is real that day. But don't try to compare your pain that you have in one area of your body for a day or two to the pain I feel due to fibro along with my other problems which adds much more pain all over my body. Don't try to downplay what I feel because you have no idea what I live with on a daily bases. Just because maybe 2 or 3 days a week I can function better than other days don't think that my pain isn't still there because it is. I'm so sorry this is such a long introduction maybe it should be a letter to my dad instead but I don't have the guts to do it. #MightyTogether #BipolarDisorder #Fibromyalgia #PTSD #Anxiety #Depression

12 reactions 8 comments

I'm new here!

Hi, my name is Kitty2023. I've been diagnosed with both Ehlers Danlos Syndrome and Chronic Fatigue at the start of last week ( 8/1) after a recent and very new family history was discovered.Wanting to know more about managing both conditions in relation to spinal issues .Need some help please and want to talk to to other patients if possible

#MightyTogether #SpinalStenosis #EhlersDanlosSyndrome

2 reactions 1 comment