Spinal Stenosis

Hi, my name is Brian. I'm here because

#MightyTogether #Anxiety #Depression #PTSD #AnkylosingSpondylitis #SpinalStenosis #Osteoarthritis

Does any one get ketamine infusions? Frequency? Dosage? Protocol? Who prescribed & oversees? Cost? Are you able to get insurance coverage, reimbursement, or any thing to help w expense? Has anyone head about the clinical trials of ketamine to improve fatigue for MS? I have a demyelinating syndrome & connective tissue dx (both have no name), degenerative spine disease, and I recently got diagnosed w DISH (diffuse idiopathic skeletal hyperostosis). I’ve had 8 spinal fusion surgeries w plates screws and rods. DISH causes extra bone growth, specifically bone spurs on my spine. These bone spurs connected to form a bridge, a bridged osteophyte complex T5-T11 #MultipleSclerosis #Scoliosis #SpinalFusion #SpinalStenosis #ComplexRegionalPainSyndrome #AnkylosingSpondylitis #MixedConnectiveTissueDiseaseMCTD #spinal

After suffering a 4 DAY MIGRAINE I was done, at the end of my rope. I don't take narcotics and they wouldn't have helped anyways. So just all the other desperate people that do a Google search (yes I WAS desperate) I found some articles on transcript. And because like all the other housewives out there I am not a certified doctor (lol). In all serious ness for 2 days I put the soft collar on for a couple times each day for a few hours. My migraine turned into a headache and eventually went away. Instead of needing help from my family and a cane to walk that too got better. Obviously NOT medical advice and really I can't explain it but maybe it can help someone going through what I am....happy Sunday 😊

Just learned that my nerve pains 3 types- all originate from spinal stenosis & glossophryngeal nerve & artery entanglement. Looking at possible spinal & brain surgery after hearing for years “take more meds” & “it’s a coincidence “. I’m reeling

Hi, my name is wildcat. I'm here because I am just getting out of a DV relationship and experiencing difficult depression and anxiety and my PTSD has been triggered. I have no friends or family and I'm looking for support from others who understand or have experienced this kind of situation. I've also been suffering from stage 4 arthrosis in my hip for 3 years now and it needs to be replaced. I am in limbo waiting for the surgeon I was referred to to even decide if he will do the operation.

#MightyTogether #Anxiety #Depression #PTSD #Fibromyalgia #OCD #Arthritis #SpinalStenosis

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! “