Cerv rib- seizure like activity, initial assessment for suspected TOS
Today I advocated for myself and presented months worth of research with supporting personal medical records and procedure reports. My PCM has initiated referral to start workup for suspected TOC.
Up until today, my medical care and diagnosis have been managed with a wait and see approach. Ive been written off by the VA, the military health care system, even my own friends, family, and past partners. I don't have a local support system and live alone so I've been dealing with this solo for a very long time. At this point, I probably have over 1000+ pages of medical records, listing at least five trips to the ER, and hundreds of medications, labs, and reports.
Radiology reports show protrusions and noted bilateral extended transverse processes at the c7 thoracic root. In addition to cortisone shots, torodol shots, physical therapy, and prednisone, I've had nerve ablation procedures on my lumbar spine x2 (l3-s1) and once in my cervical spine (c4-c7). I've also had a bilateral carpal tunnel release, shoulder decompression, and two lumbar microdisecctomies. None of these procedures have resolved my pain or symptoms.
My pain levels have been very high for months, with increasingly worse tremoring, jerking, dropping things, temperature sensitivity, shooters, burning, numbness, and issues with memory, focus, and word choice and speaking. On March 10th, I had a seizure like event. I took myself to the ER, tried to tell them what happened. They did a chest xray, ran a pregnancy test (after I told them I haven't had a cycle in over a year), and performed an EKG after an increase in heart rate (history of tachycardia and change in BP (history of hypertension). ER doc said my results checked out and I was sent home within two hours, with a diagnosis of near syncope and instructions to follow up with my provider in 1-2 days.
It took 12 days to get an appointment at the military hospital where I've been receiving my care the last decade. Thankfully I've had the same provider that entire time, so he has observed this cyclic, progressive pattern of symptoms.
He placed a referral for an ASAP referral to an off post neurologist, but my referral was misread and never sent out, which resulted in even further delay. I was finally seen by a neurologist this past thursday.
Her initial response was to recommend therapy, but relented and agreed to an EEG after I shot her offer for a psych referral down and insisted this was not just anxiety. I left her office angrier than I've been in years, bc yet again, my symptoms were ignored.
I've been researching and reviewing my records for years so I was even more determined to figure this out. I did a physical exam on myself and noticed bony bilateral abnormalities. They are worse on the right side, noticable bony lumb below my clavical and on top of the bone where my collar bone meets my shoulder.
Ive been having increasingly worsening cognitive issues in clouding loss of immediate memory, inability to focus, difficulty speaking and processing, significant balance and clumsiness, tremors and jerking, very sensitive startle reflex, confusion and disorientation, tinnitutus, head pressure, and upper respiratory infection sinus infection (crooked nose, postnasal drip, sore throat, cysts/lymph nodes? Squeaky sound in left ear where migraines have always stemmed. CT scan showed nasal polyp – chronic upper respiratory since Feb 2020, *neg for COVID* without relief).
As it stands, im unable to perform my job as a technical writer for Raytheon Technologies. I cannot workout, I forget to eat and drink, and my symptoms are directly impacted my ability to sleep. I live alone and am geographically isolated from my family. I have been single for years and do not have children or friends near by to support me through this. I am also my own means of transportation and have never had anyone with me at 99% of the endless appointments, tests, procedures, and surgeries which further complicated my case.
I made another appointment for today and went in to my appointment with my primary care manager, handed him pages of notes, and pointed out everything that had been missed and overlooked over the years.
This is part of the note from the appointment with my primary care manager and some of what I took in to my appointment.
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@pwisniski Hello and welcome to Connect. I have to tell you that thoracic outlet syndrome is most often missed and misunderstood by most of the medical community and it may take years to get a correct diagnosis. It it glossed over in med school in a couple days as told to me by my neurologist. In order to get a proper diagnosis, you need to be evaluated in a place that understands and treats TOS. I wouldn't think a doctor wants to read a thousand pages of records, but if you made a synopsis of findings on a particular date and a timeline of how this evolved, that may be helpful. If this is a legal situation about TOS, all the records may matter, but if not, starting fresh with a TOS specialist could be another avenue if you are at the right place, for example seeing a specialists in the vascular surgery at Mayo.
I have TOS, and the surgeon (not at Mayo) who did carpal tunnel surgery on me missed it, and didn't understand why his surgery didn't fix all my pain, and accused me of malingering. There are several different varieties of TOS both vascular and neurogenic. Some people do have a cervical rib involved, but I do not have one. TOS causes my vertebrae to rotate because one side of my neck is tighter. There is surgery for TOS with limited success because all surgery creates scar tissue and often TOS would be made worse by new scar tissue forming.
TOS does cause the blood supply to the brain and arm (in vascular TOS) to be disrupted. One of the tests they did at Mayo was listening to the pulse in my neck and having me turn my head. The pulse stops because the blood supply was cut off. I was seen there in the vascular lab where they tested me with blood pressure cuffs on my fingers and moved my arm into different positions and in certain positions, my circulation is cut off and pressure drops. It can cause the syncope you describe and problems breathing. I have been in physical therapy for several years and doing myofascial release to improve my TOS and it helps a lot. Posture is very important to avoid triggering TOS symptoms. I get blotchy skin and my hands would turn bluish or purple and get colder. Since therapy, they remain blotchy, but have not been cold.
This is our discussion on "Myofascial Release Therapy (MFR)
Neuropathy – "Myofascial Release Therapy (MFR) for treating compression and pain"
Can you advocate to be seen at a major medical center like Mayo? Make sure to look up TOS on any medical center website to see if they have specialists who treat it.
This link will explain a lot about the issues of TOS.
This is a facebook post about breathing difficulties with TOS also from MSK Neurology
On TOS and respiratory function
Have you had physical therapy for your neck and shoulders? What are your questions regarding getting a diagnosis?
Hello @pwisniski. I see that @jenniferhunter has joined you to share information that may be helpful. Because you posted an image with private information, you will notice it has been removed to protect your privacy while in this community.
I will let you start by replying to Jennifer on her question regarding physical therapy, as I was curious about that as well.