I’m 21 years old. I have seen 20+ specialists/doctors (orthopedics, one pain specialist, neurosurgeon, neurologist, etc...they mostly looked into skeletal and common injuries-herniated disc, broken ribs, rotator cuff) I have tried probably 20+ medications; I’ve had a CT scan of my neck, MRIs (of my cervical and thoracic spine, shoulder, brachial plexus, and brain), EEG, EMG, blood work, 3 nerve blocks, a scalene block, physical therapy, massage therapy, tried a chiropractor, I even had surgery to rule out thoracic outlet syndrome. In December, they removed my first rib, 2 parts of my scalene, part of my pectoral, split a tendon under my arm, removed lots of scar tissue, and cleaned up my nerves. I had several doctors lean towards TOS – vascular, muscle and of my nerves. I had no pulse in my arm when I raised it so I did my research and found Dr. Pearl in Dallas to do my surgery. After the surgery I was doing ok, it wasn’t a hard recovery but everything would still flare up. Not near as bad but enough to affect me. On bad days I would go to therapy and it would help take the edge off. However, about four weeks ago, I went in for my weekly appointment, everything was back to the way it was, tense, muscle spasms all along my shoulder blade, my arm would go numb, headaches. (Keep in mind; I had oral surgery – wisdom teeth removal- right before I started to fell crappy again. It felt like all my nerves were on fire-From my jaw, to my head, and even down to my arm/shoulder.) Well since then, it has only gotten worse. My therapist said that the exercises and what she could offer would not help until I could get everything to chill out….so she sent me to chiropractic for myofacial release. He had a $50 co-pay twice a week. I just can’t afford that. I have done therapy 2 other times throughout all this and I feel like I haven’t had the relief I need from it, so I’m skeptical to see another therapist.
Let me tell you about my symptoms in the past couple years. It came out of nowhere!
It started out with my neck and back muscle along my spine being very stiff, couldn’t move, and there was lots of pain. Just felt like I slept wrong but the pain was 10 times greater. Once that wore off, my shoulder blade would feel like it had a knife in it causing my arm to go numb. It goes into my wrist, pinky and ring finger. Every now and then my whole hand will hurt. I have trigger points from my spine to my arm pit, my arm, down to my sciatic nerve, up thru my neck and even some on my head (temple and by my ear). Since my surgery my neck and scalene have been much better, but I still get horrible headaches that start on the right side, my eye will have an electric shock/burning sensation. Sometimes it feels like I have so much pressure in my head that my nose is going to bleed or I have a watery type feeling. Id have sharp excruciating deep but sensitive to touch pain around my shoulder blade, it wraps around my ribs in the middle of my back, down my spine, to my hip, down my leg, into my calf (My calf constantly feels like a cramp), down my arm, behind my elbow, and into to my hand. My parents didn’t believe me at first, but then for two days my lips swelled up and turned black. I have a bump on my chest that used to swell up and hurt (Bone scan showed nothing) swelling in my arm and lower back.
(I don’t know if this is related but I some how broke out and got staph really bad on three parts of my body on my right side only. (One was about the size of a plate and over and inch deep on my thigh) All had to be removed. I had no open wounds so I’m not sure how it came about. Also several bladder infections in the past year-Like I said I don’t know if this could even be related but I have never had any problems until all this started)
I did have nerve blocks sometime last year, we thought it was unsuccessful, but now that it has worn off I believe it did help some. I had three by my ribs (T5-T8-somewhere in that area) Does this indicate some kind of nerve disorder or issue?
Lately my symptoms have been the pain, trigger points and numbness around shoulder blade, elbow, hand, and my leg has been constant as well, horrible head aches, dizziness and my right ear will ring or hurt, pressure in my head. I can’t focus, or think straight, my mind races so I cant talk as well, I’m exhausted, aggravated at everything, I just want to lay in bed and cry.
I don’t know if its anxiety, I don’t feel stressed but I do deal with stupid drama. My boyfriend told me I have been very mean and agitated again. Standing up, walking around, sitting, nothing makes it better! Lying in bed at night I throb and hurt so bad. It has never followed a consistent pattern. I’ve tried matching it with my period, with stress, things I do or eat – but nothing has consistent results. It can last anywhere from a week to months. I can have some weeks where I feel extremely sore and no sharp pain but it never last more than a week. I’m usually exhausted. I used to be very active, gymnastics, played vball in high school, now I can barley climb stairs without breathing heavy, my chest hurting, and getting dizzy. I hate taking heavy pain pills but I have started taking Soma again at night. It doesn’t do much, other than take the edge off and help me sleep.
Some thoughts have been spinal tap to rule out MS or Lupus, I’ve heard Fibromyalgia (which I don’t quite believe in), and it’s obviously not TOS. I don’t believe its any of those because it is restricted to my right side only.
Possible Contributors: Fell off the bars in gymnastics and landed on my head-neck brace for 9 weeks (no Damage) Fatal car wreck when I was 8. Some neck problems from that – Went to a chiropractor for 10 years. (Can no longer see him because he makes things worse.)
List of medications off the top of my head: Lyrica, Soma, Vicoden, Flexirol, Tegretol, Cymbalta, Skelaxin, Naproxen, Amitriptline, Birth Control, Topamax, Steroid Packs, Norco, etc.. No Relief!
I have never been thru anything like this so it’s hard for me to believe that I just make it up in my head. I apologize for my novel but I’m left with another dead end. The pain is unbearable, it’s sharp and constant, and I would go to the ER everyday if I could afford it. It affects my daily life, work, school, relationships, and I can no longer be active.
Any ideas on what could cause this or where I need to go?
No serious health issues in family - Grandmother had heart problem
Could you have Fibromyalgia? I fell off my bike and hit my head on the road when I was 9. I was unconscious for 5 hours while vomiting. My mother never took me to a doctor or the ER. I heard if you have a head injury when you are young, you can have problems later on in life.
You need to get referred to a top neurosurgeon and/or a neurologist. I also had good luck with a cranio-sacral therapist, but she died of breast cancer, and they are rare where I live.
Do not give up. You have to literally kick and scream for decent HEALTH CARE these days.
You could also try your primary care doctor and tell him everything you have done. You have the right to feel better.
Best wishes to you. I had a 4 level anterior cervical fusion and I am still in pain, and have pins and needles in my left hand, plus my left shoulder and neck hurt along with headaches only on the left side. I am going to keep after them until I get some relief.
The weather (cold and damp) make everything worse.
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