Pinched Nerve

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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!

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An interesting development

#Doctors #Scoliosis Hi. How is everyone today? Before we officially go into fall I would like to share a interesting development that has quietly taken shape. I was looking through my test results & noticed one that was tucked in there. My spinal scans from the spinal specialist & whats hypocritical of him is when he told my mom that everything is normal. Yet the report said otherwise. They noted a dextroscoliosis of 26 degrees in my neck, a 13 degree levoscoliosis in my upper spine & a marked coronal imbalance measuring 18.1cm or 7 inches. So what does this mean? Well, a few things it means a rare form scoliosis called cervicothoraric scoliosis in combination with degenerative signs in the cervix & a laryngocele with other findings on brain scan this would point to a little known condition called klippel feil syndrome. BUT WAIT! there is one very profound problem nothing in my genetics mentions any gene related to klippel feil. however, this caught my attention. There is a locus on 8p22.2 that is known to cause laryngeal malformation. This condition is autosomal dominant. My mom has complained about hearing loss & a stooped posture in her neck for years that isn't being cured by chiropractics. Now I'm starting to wonder if my degenerative disc disease of the neck & these new findings will point us toward a new diagnosis. Unless it's just a spinal injury but considering the development of a zenkers diverticulum & prior pinched nerve causing dizziness (radiculopathy). It's also associated with jaw disorders like micrognathia of which I have.

Anyways, everyone. . .have a great fall & wonderful new year. ;)

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From one flare right into another

Several days ago I did something that caused a pinched nerve in my neck/shoulder and all the way down my arm. The pain is horrendous and just when I think it’s getting better it flares up again. It’s always something and it’s incredibly frustrating. You’d think I’d be use to it by now but nope. I’d like a refund on this body, it’s defective. #ChronicPain #EhlersDanlosSyndrome #HEDS #Spoonie #POTS

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Serious illness finally overcoming after long fight.

#ChronicIllness Hi there. My name is Nick. I'm 6.3ft & love to swim, work at my job, listen to podcast, sometimes games & Am a music lover. So I've got quite the story to tell for this group. So, About a year & a half ago I got a pinched nerve that caused me to put my head down. I moved houses & got a job & saw a chiropractor to get the pinched nerve taken care well it back fired & I got changes in posture & severe muddy poop. Prior to this I had lack of awareness that there was a problem & serious lacrimation at night with serious fatigue that would make me feel terrible even when napping. During 18 month long diarrhea escapade I got dark urine/dehydration, funny anal sensation, nearly fainted, got exhaustion issues. I saw neurology, spine specialist, ent, saw 2 physical therapist, saw a neurologist then that same neurologist canceled on everyone for a 5 month vacation & switched general doctors. I got 2 ct scans, an mri, An x-ray, & multiple blood panels, genetics testing (both of which weren't significant enough) though they found carrier for cep290 & chromosome 4p microduplication. They found some mild spinal abnormalities like degenerative cervical bones, some vitamin deficiencies, mild scoliosis of the mid back, mild lumbar retrolisthesis, porencephaly, laryngocele, & finally after not figuring where the abnormal poop is coming from. A immunoglobulin test revealed I have mildly decreased IgM levels for reasons unknown. I hope that seeing a gastroenterologist in a month finally reveals what's been going on. I do have some inflammation just under the sternum (liver?) Anyways hopefully this story gets out there.

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so much pain in your lower body # pain

I went todaytoday was run around day and pay all your billsand I had spinal fusion then about 8 months agoand I wound up walking with a walking cane after this spinal fusion becauseit's the second one it's my second go around on this Rodeo we call painand they say that it gets easier it don't get easier you just have more painand this is the hardware that put in my back aboutOct 2022 this one was from a pinched nerve on mydown to my leg my left leg and my footit took a year before they started to do the surgeryI mean I was in pain worse for a yearcan walk couldn't take a bath couldn't hardly do nothingI think I rather walk with a cane than not walk at allcuz I used to walk tall I had to sit down every 5 ftI still got to sit down now and then but it'sand walk a little bit longerthat I can that I didn't used to do but you still had a pain in the backbut this is life we carry on we do what we can

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Appointments coming

#Doctors #appointments

Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.

My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.

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Facing a complex situation

Hi. I'm new here. My name is Nick. I'm 6.3ft & enjoy traveling, swimming, music, being with my cousins when possible, I even want to get into model trains but would require a separate location as we just don't have the room in the house sadly, sometimes Lego's & sometimes games. My situation is unique because I keep getting diagnosed with new findings from different doctors & no one is putting it together. Over the course of a year I've experienced an alarming decline in health. Swallowing issues when I drank water with a throat click, a posture lean that came on from seeking chiropractor help due to pinched nerve that was causing me to fall. I saw genetics prior & all they came up with was a chromosome 4 duplication & a carrier for cep290. They deemed me as having insignificant results. Though the biggest discovery was the mri test & X-ray they ran Where they found porencephaly with a bunch of incidental findings like choroid plexus cysts, mucous retention cyst, & a hemosiderin deposit. The x-ray revealed upper scoliosis, & mild lumbar retrolisthesis. prior to that I was getting told from a board certified neuro physical therapist that it is conversion disorder & she tried to prove it & even When I told her the results of the mri she told me she still thinks it's conversion disorder. Idk maybe it's me & I need to just stop seeing doctors. The amount of spat I've gotten is incredible with my current gp having more care than all previous doctors combined. I even reached out to my geneticist who turned down all evidence I gave with there's nothing I can do for you & I have no recommendations. I even mentioned my cousin who has a speech disorder due to a cyst in his brain. I have 4 appointments coming up & I need someone to piece my history & figure out if we are after all this still missing something here. There's a few unanswered questions from my childhood/birth. This has taken it's toll on my family & I'm just fed up, tired & ready to forget about the medical field because they can't seem to put 2 & 2 together. If you want me to go more in depth as to what went on let me know & I'll post as much as I can on here. Have a good day :).

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New member & looking for answers due to complex case

#Porencephaly #story #exhaustion #help #Misdiagnosed #underdiagnosed #complexcase #26years #symptomlist #rejected #Support #LongPost

(If you took the time to read this your amazing, seriously!)

Hi. My name is Nick. I'm new here. As much as I loathe this, I'am a complex case. I've been dealing with an unusual dilemma. I get diagnosed with one set of diseases, then getting a second & third set of diagnosis that don't seem related to the 1st set of diagnosis. What do I mean? The genetic test are the first set of results. Then the porencephaly with other incidental findings are the 2nd set of diagnosis with the 3rd and most recent set being due to my throat symptoms: adult dysphagia, adenopathy, & neck crepitus with manual right shift of trachea." I can't be overthinking this but, I can't shake the feeling something is wrong possibly beyond the scope of porencephaly. I got accepted by nord for the campaign but that was about it. My rare disease submission never got posted & I got turned down by my geneticist for further testing with the remark of "There's nothing else I can do for you." *Even though I made mention of my cousin having a cyst that causes speech issues.* ( thanks alot.) Sigh* depressed face*. Oh well, guess I look forward. Along with neurology & spinal specialist in may I now have an neck ultrasound with possible echogram later this month on top of an ENT in late April. One might argue I'm doing this to myself but that would be the partial truth because I let something possibly dangerous get away with tearing me apart even though all the symptoms are painless.

Why? Why this sudden deterioration in health as of a year or so ago? All the waiting has lead to partial answers. I almost want someone to sit down & figure out what I should focus on treating & what needs to be ignored. Sometimes I wake up thinking about wanting to make a model train set or traveling to a distant place & enjoying it. Too bad the former is expensive & requires too much space for our basement. The latter doesn't happen enough for me.

I'm exhausted & ready to just give someone all my records/history & just say "figure it out." I've been wanting this to be over for a good while now but new things keep coming up & I feel like some time soon I'll stop going to doctors because I don't want to deal with the process of getting surprise diagnosis ten.

I've had issues since birth with a neonatal stroke that we now know has turned cystic & has given us a piece of it's mind having been through many doctor visits throughout my 26 years of my family & me searching for answers. Here's the rundown: List of symptoms

Larygnomlacia-infant historic

Tinnitus-started at age 15

Tmj-age 15

Eye tilting up-age 15

Floaters-age 15

Dysphagia*~2019 couldn't swallow liquid properly.

Pinched nerve in neck~2021 got better with chiropractic intervention diagnosed as pots.

Neck/throat clicking same time as dysphagia & pinched nerve. Got better with chiropractor but still have some dysphagia & throat clicking.

Feeling of food being stuck in throat*~2019

Recently diagnosed adenopathy, esophageal dysphagia, & neck crepitus.

Chiropractor caused spinal lean with digestive upset in early 2022. Digestion is ok now. But posture lean is still an issue.

Recently diagnosed through mri & x-ray with porencephaly (brain cyst) this took 26 years to diagnose, mucous retention cyst, hemosiderin deposit, choroid plexus cysts & scoliosis of upper region with mild lumbar retrolisthesis.

Grip weakness- started after leaving chiropractor in Feb. 2022

Alarming rate of deterioration from being relatively healthy to needing cane due to posture lean. Most recent symptom is waking up to my left arm on my chest & having difficulty keeping it straight.

There was a change in walking pattern as of a few years ago due to coordination challenges since toddlerhood.

At birth I had a neonatal stroke looking like a premiee at full term. There was an undescended testicle (corrected at 6 years), 2 small holes in heart that healed on their own, microcephaly concerns, intrauterine growth restriction though grew out of it very quickly to 6ft 3in, & thrombocytopenia at birth.

Have strabismus, nystagmus, hyperopia, optic blurring in right eye.

Posture lean causes opposing foot to stand on toes.

Followed closely as a child but was dropped when we moved states in 2011.

Been in colorado since june of 2017.

Use to have sensation in left arm of pulling sensation when peeing.

Genetics testing according to the geneticist is insignificant but carrier for cep290 maternally & have chromosome 4p31.3-32.1 microduplication syndrome paternally with unknown significance which falls under chromosome 4p duplication syndromes (only 85 in the world.)

Also have unusual anal quivering (seldom talked about)

Have seen multiple doctors including neurologist (seeing one in may.), 2 physical therapist, 3 chiropractors, , neuropsychologist (childhood), on my 3rd primary doctor & genetics. I'm also seeing a spine specialist in May.

In tears* someone help me put this all together because it's destroying me!

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Ongoing look for solutions to what truly ails me.

Had a new neurology visit today via zoom! I hate zooms! Sent because I continue to have neurological issues. Doc does not think MS, maybe a pinched nerve in my neck, but at least it gets me my cervical MRI. On my first MRI 3 years ago there was one T2 hypersensitivity in an area of my basal ganglia, which is the area dealing with movement… my greatest issue. But new doc eyes will see what comes of this. Many of my symptoms just don’t match my two diagnoses of PsA and Lupus. I’m certain about the PsA, not so certain about the Lupus. My symptoms have to do with major spasticity in many areas of my body, twitching caused by what feels like electric shocks, gait issues, urine inconvenience, no temperature regulation (reynaulds and never know when I have a fever, unless I wake up sweating), neuropathy started in big toes and finger tips, shaking events that they say are not seizures but yet affect my speech and thought process while it’s going on ( only stops by taking Ativan), disorganization so bad I don’t want anyone to come to my house anymore (that thought makes me cry), fatigue yet thankful no organ involvement at this point (although I’ve been scared numerous times).

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My Usual Flare Ups - Just my rant!

I wake up every morning with stiffness until I spend 10-15 minutes stretching from #Fibromyalgia . Once a week, sometimes every other week, I have light sensitivity + migraines. Nothing sharp, just a dull pulsing ache. However, every single day, I suffer from neck pain and with a flare up it goes to my shoulders. More symptoms of #Fibromyalgia . Now to the back, the lower back. L5 region on the left side I go through aches. A few times a year it flares to wear it feels like it’s a pinched nerve but is the only time it doesn’t cause pain in my sciatic. And all the while my spine is perfectly fine! Can you believe that? Now, while all this is happening my fatigue is the most frustrating! And dont get me started with the spasms. Probably suffered longer than my initial diagnosis, but I still have to work in a stressful workplace. And told

“You are too you to go through pain”

“Add 30+ years” Mind you, I’m 32 but look like I’m 19.

I want to say I’m hurting without the judgement.

Now, don’t get me started with my symptoms of #Anxiety and #Depression . When I go through my depression moods, I’m quiet and don’t want to get out of bed. When I feel anxiety especially socially, I talk to much and pace/move around.

Let’s talk about things I’ve been denied:

Disability insurance
Student loan forgiveness for a disability
2 leave of absence from work both FMLA and Intermittent
MRI (originally)

That’s a start…
That’s the end of my rant. For now….

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