Radiologist Second Opinion for MRI

@gjkuzmin21 Welcome to Connect. I saw your other discussion about chest pain and the full workup you had with cardiology, and of course as a young person, no one is expecting to find a lot of medical issues. Can you share what was reported on your spine imaging?

May I also ask what kinds of physical things do you do a lot that could bring on chest pain? Is there any movement that makes it worse? Do you have a physical job or a desk job?

Chasing the source of nerve pain can be a tricky business. Did you get a report of "unremarkable" descriptions in the spine MRI?

One condition that you may want to learn about is thoracic outlet syndrome which can cause chest pain. I have TOS and I am a spine cervical surgery patient and I have experienced some sharp chest pains when muscles between my head, neck and chest are tight and spasming. TOS is often missed because it is misunderstood by most doctors. Thoracic or vascular surgeons may be specialists for TOS at medical centers that list TOS as a condition that they treat. Usually the best way to treat it is what I do with my physical therapist to stretch overly tight muscles and fascia called Myofascial Release. This is something you can try even without having a diagnosis of where the pain is coming from. I have befitted a lot from MFR and I do as much as I can on my own to maintain proper movement.

Here is our MFR discussion:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Here is a technical article about Thoracic Outlet Syndrome.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

Have any of your specialists considered thoracic outlet syndrome in your workup?

Jennifer

Hello!

Thank you for the welcome!

I’ve had a lot of symptom changes since I last posted and have been rendered basically unable to do much.

My chest pain is still predominant and is now a constant squeeze/ache that comes and goes throughout my entire chest with occasional sharp episodes on my left side. I’ve also started to have extreme unexplained tightness in my upper middle back and neck with new random onset migraines that have left me unable to eat or walk. All of this along with new onset pins and needles throughout my upper back and upper/lower extremities with muscle weakness throughout my body - to the point where I can’t hold my phone to my ear without having to rest my arm on something. The most recent neuro visit showed I had a positive hoffmans test and new hyperflexia in almost all reflex tests done but was brushed aside by the doctor and never explained to me.

With the episodic chest pain, after 5 months we have not been able to observe anything that typically triggers it - it seems to be very random.

I have a physical job and work in healthcare so I sit and move around a lot.

My husband is a PA - and we obtained a disc of my MRIS prior to the imaging - on our end he was able to see multiple discs in my lower lumbar that were of concern as well as places with what could be lesions and some disruption in the shape of my spinal cord near the lower Cspine. The results from the radiologist who interpreted my scans were “unremarkable with no findings” which we just cannot wrap our heads around.

I have more recently been looking into TOS and things along those lines.

Just very much struggling to find a specialist who will take me seriously and work with me and take the time to figure out what is going on. Feeling very given up on by almost every doctor I have seen since this has started.

@gjkuzmin21 Working in healthcare, I can imagine that looking at computer screens and typing in information could put you in some forward slouching posture and if you do this with your head forward and looking down would be posture that would aggravate TOS. My TOS is worse on the left side, so my neck is tighter on that side and it sets up unequal tension and can cause rotation of my cervical vertebrae with out me turning my head. If you are doing heavy lifting with patients, you may be stressing your neck by recruiting those muscles to help and if you have TOS, that would make it worse. Migraine type pain can happen because of rotation of C1 & C2 if that is happening on one side. I know when my muscles start to turn my vertebrae and I stretch it out to make it stop.

I think working with a physical therapist doing Myofascial Release can help a lot. You may be getting stuck in postures with tight fascia from the physical demands of the job. Even though there are a few things on the MRI, it may not be the main source of the pain. It could be more of a TOS issue and less of a spine issue, but it take the specialists to look and decide. My issues were spinal cord compression from a ruptured disc at C5/C6 in addition to TOS, and I had a lot of weird pain. If your issues are more about TOS, it's possible that myofascial release may help a lot. Surgery is the last resort, and it always creates scar tissue that causes tightness and can make a problem worse if it is caused by tight tissue.

Often the best doctor to read MRI imaging would be the spine surgeon because they know what they are looking for to fix instead of a radiologist. The radiologist often describes many possibilities that need further exploration because they don't want to miss something that could be important.

If you can travel to Mayo in Rochester, MN, there are specialists there for diagnosing TOS as well as spine neurosurgeons. I had my surgery there and came in with the diagnosis of TOS which was reconfirmed in the vascular lab with testing. My neurosurgeon there is excellent and he understands the relationship of TOS with spine problems because he's had me as a patient. If going to Mayo is a possibility, the first thing is to check if your health insurance is accepted at Mayo. You would be able to apply to Mayo and send in imaging discs and they will review it at no charge. If there is something wrong structurally that they could help with, you may be offered an appointment. There is a lot of competition for available appointments, but if you also wanted to ask about a possible TOS diagnosis, that may give you a better chance of getting in.

Here is Mayo's insurance information.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

If you can't go to Mayo, it would be worth it to work with a good physical therapist. They can help in diagnosis because they figure out what doesn't move correctly, and they may just solve the problem. Spine issues can take several years to progress to where surgery would be needed. It was about 3 years for me from the time the spine issue became evident to when I had surgery. I had an unusual case and it was misunderstood by 5 local spine surgeons over 2 years time which is why I came to Mayo.

Here is a provider search for a therapist for myofascial release.
http://mfrtherapists.com/

What do you think would be your best choice at this time?

Jennifer

Morning. Jennifer's suggestions are excellent. I'll just jump in and add something to your "where to go" question. I live in Upstate SC and chose Mayo JAX for diagnostics and then surgery. The 6 1/2 drive was irritating at times - but that time investment to get everything right was well worth the short inconvenience.

In NC - the folks at Duke and the Spine Institute at Emory (Atlanta) can offer excellent closer-to-you options.

Quick story? I once was being prepped in an OR for delicate brain surgery as indicated by multiple angiograms showing a physical brain anomaly. The neurosurgeon (always a good choice when working with nerves and such) decided to confirm the angiogram - as it was done by a different facility. (pick the best medical facility you can get to). This additional angiogram convinced the neurosurgeon the indicated anomaly was just an artifact (go where they have the best diagnostic equipment) and brain surgery was canceled. It's 33+ years later and I'm still good!

Wishing you the best.

Get the images to a good neurosurgeon!

I'm with you. I am sure that, like most doctors, radiologists are overwhelmed. So, it would seem likely in their skimming an MRI, they might miss something. How do I know this, you ask. Well. back in 2016, after a bad ski fall (I've related this incident so many times...), I had two MRIs, one in 2016, and another in 2017. Both showed nothing remarkable. I had been given plenty of meds to help keep my pain in check, but I still had the occasional bad day. I mentioned this to my pain specialist at the time. He referred me to an orthopedic surgeon who ordered another MRI. He told me that I had spondylethesis at L5-S1/He said he could go in surgically and realign the two vertebrae with some hardware. That should stabilize them and do away with the pain. Not being bery "Doc-savvy" at the time, I never thought to mention the two previous MRIs that showed nothing remarkable, so how did this suddenly show up out of the blue? Did the first two interpretations miss it, or, was this just a ploy to get mote bucks. Whatever the case, I had the surgery. Wonder of wonders...it did absolutely nothing for my pain. So, yes, try to get a second reading of your MRI if at all possible.

@upstatephil Phil, Oh my gosh.... what a close call! Your story illustrates why we need multiple opinions if some major surgery is recommended and that there is a big difference where you go and who you trust. Technology helps in medicine, but it can be faulty. We can't just press an "Undo" button and we have to live with the consequences of our choices, and hopefully we have made the right choice. This is why patients need to learn as much as they can to be able to advocate for themselves and make informed choices.

I learned a long time ago how excited doctors could get when a patient passed out because I did that a lot when I feared what they were doing to me. The first time I had nerve conduction testing done it was bad enough to have a neurologist administering painful shocks making my muscles jump and that went on for 45 minutes. Then when he started testing the muscles by sticking a needle in a muscle and measuring the electricity it received, I passed out briefly and I was already laying down at the time. To him, it looked like a seizure, and yes that makes sense because when the brain stops receiving it's blood supply because your blood pressure drops drastically, it will cause something. He stopped the nerve testing. He put me through brain scans and a sleep study and they didn't find anything except an incidental finding of an AVM which is an abnormality of blood vessels in the brain in one place. I have a letter stating his concern, but it has been there for years undetected. Could that cause an issue in the future? Perhaps, but there are no symptoms. This is a reason to make sure that I check my blood pressure and take steps to correct high blood pressure if it occurs. I did ask my neurosurgeon about this, and his question was if I had experienced seizures. I told him no, and he told me not to worry about it. At least I know it is there and to be aware of it.

I talk about fear of medical procedures a lot on Connect. Now, I am a person who has conquered that fear and deprogrammed it as a result of learning about myself as I went through spine surgery a few years ago that gave me back the coordination in my arms. I did have more nerve conduction tests and none were as painful as that first time. The tests were uncomfortable, but I didn't have ongoing pain and exhaustion for a few days from it like what had happened that first time. I had to sleep because I was so exhausted. I have to wonder if the strength of electric shock the first time was just too high.

The next time I had nerve conduction tests, I also had some coping strategies that helped me try to relax, and I would ask for a break for a few minutes when it was getting intense. When I had these tests at Mayo prior to my spine surgery, I knew there was a justified reason for it in getting the correct diagnosis by my surgeon. The first time I had nerve tests, I had undiagnosed thoracic outlet syndrome that was causing arm pain. TOS is a condition of nerve compression between the neck and shoulder that most doctors miss and don't understand. The nerve testing at that time really wasn't useful diagnostically, and it just helped to further establish my fear responses to painful procedures.

Jennifer