Pinched Nerve

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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


    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).


    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….


    Insomnia thoughts

    So it turns out my feminine sway in my walk is bc of a pinched nerve in my back where my body is sort of limping bc of weakening muscles from my pinched nerve. Who knew 😂 #DegenerativeDiscDisease #ChronicSpinePain #chiropractorstories

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    My experience

    Hi all, I created this group as I didn't see any group specific to my condition. I wanted to share my experience. I had injured my elbow by accidently hitting the wall, in Nov 2021. Initial pain was bad. But after resting for a few days, the tingling reduced, but I maintained the classic cubital tunnel symptoms (pain in pinky and ring finger, difficulty bending the elbow).
    As the pain didn't subside for a couple of weeks, I went to a hand specialist, where I had a horrible experience. He barely checked my hand, told me to do some weighted therapy exercises (no clear regiment explained), and then said I will be good in 3 weeks. The exercises were a big mistake, as they greatly aggravated my condition, the pain increased and I developed a painful click in my elbow as well.
    After that I got a second opinion and I was finly diagnosed with cubital tunnel, tendinitis and bursitis of the elbow. Had to take a steroid course, and strong painkillers. Finally I started physical therapy in late January 2022, which has been helping. Now there is almost no pain at rest and clicking has gone, but still can't really use my arm for anything other than typing.
    Even though my symptoms are improving, the injury has caused a lot of mental exhaustion after being in pain for almost 4 months, so I wanted to talk with others in similar scenarios and how they are dealing with it.
    Thanks and take care.
    #PinchedNerve #cubitaltunnelsyndrome