Help for my wife?

@dizzyjw Can you be more specific about where the pain under the ribs is for your wife? I frequently have pain and tightness around my rib cage because I have muscle tightness caused by thoracic outlet syndrome. What I might suggest to try to narrow down possible issues is to see a physical therapist who can possibly point her in the right direction as to the source and what medical specialist would be the best to see. The best PT for this would be one who also does myofascial release work because they can put hands on the body and feel where the fascia gets tight. We develop patterns of tightness because of many reasons, injuries, illness and infections, habits, and sedentary lives.

Also what kind of pain does she have... throbbing? aching? dull? electric shock or burning sensation? Does the pain travel to other places or stay in the same place? A neurologist can help assess if she had pain caused by a nerve entrapment and can do tests to find which nerve could be involved or if it could be caused be a disease or inflammatory process. I would recommend seeing a neurologist at a medical center that also treats Thoracic Outlet Syndrome or TOS because it is most often missed and misunderstood. Often Mayo's neurology doctors are in high demand because of neuropathy patients and it may be difficult to be seen because they don't have available time. You can see a neurologist somewhere else, and depending on what they find, that doctor could refer her to be seen at Mayo. Sometimes that makes a difference. If she has TOS, she could be referred to a TOS specialist at Mayo ( thoracic surgeon), and that specialist refers to other specialties inside Mayo depending on what is needed

My TOS was diagnosed by a neurologist long before I became a Mayo patient, and even so, other doctors I had didn't believe me because they thought TOS was rare. It isn't really, but few doctors really understand it. TOS affects the nerves and blood supply to the the arms and hands and I also get ribs that can twist (very painful) and tight pains near the sternum. I have muscle and fascia tightness between my ribs and pelvis near the respiratory diaphragm and that causes my lungs not to expand enough and traps phlegm which then causes infections if it isn't expelled. You can't assume any chest pain to be TOS because it can also be heart related, but if that and other issues have been ruled out, you need a doctor who understands physical problems like TOS that cause nerve entrapment. Physical therapy is my best way to treat TOS and with an expert PT who also does myofascial release. There is surgery for TOS, but since surgery creates scar tissue , it can make TOS worse. There are many different entrapment points in the chest that are TOS and sometimes even a cervical (Extra) rib is involved. I am an Mayo patient and did refer myself, but I had a spine problem that needed surgery so I had a specific defined need. When I was accepted as a patient, my first Mayo appointment was with a neurologist in the spine center hand picked by the neurosurgeon. The neurologist helped define my specific issues and they also evaluated my TOS to decide if that or my spine problem was the bigger problem causing my symptoms. I was sent to see a thoracic surgeon and had tests in their lab that measured blood pressure changes in my fingers with different arm positions that confirmed the TOS diagnosis. I think if your wife can come to Mayo with a better defined issue, she may have more success getting into see an appropriate specialist.

Here are some links for information and our myofascial release discussion. There is a provider search on the Myofacial release website. You can also ask me questions and I will try to help.

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
http://mfrtherapists.com/

I was rejected too, I do not understand, I have so much pain and suffering and diagnosed with Lymphoma, AS, RS, Lupis, UC, do they just think I am hopeless?

@ha2g, this is difficult news. You are not hopeless. You certainly have a lot on your plate. Are you currently in treatment for lymphoma? Are you wishing to seek help from oncology or rheumatology at this time?

Thank you, Rheumatology but they sent my file to general medicine. I have so many diagnosed autoimmune diseases and I am in so much pain and have so much inflammation, I said I would do a tele visit if it was better for their schedule, I was really hoping to get in to the Mayo Clinic. I am only out of pain when they give me high dosages for prednisone, it knocks it down for a few weeks, but it always comes back.

I'm late this this post but maybe it will help someone down , the road. My wife was denied today, and we are dumbfounded and deeply saddened. Mayo was a last hope, after years of pain, a plethora of symptoms, and continual verbal shrugs from the PCP to specialists. All of them working solo on the case. The collective multi-disciplinary approach was where we once had hope. We never expect miracles, but to not even be given a chance is deeply disappointing, and has brought me a new and very real perspective on Mayo. I guess we'll keep trying - somewhere else.

@rhale, I can imagine that you and your wife feel like your hope has been taken away. As I'm sure you know, Mayo Clinic receives many more requests for appointments than available openings. But why not your wife, right?

I don't want you to give up hope. You can find multi-disciplinary care. Here are some tips from members who have persisted with seeking care at Mayo Clinic or found a facility within the Mayo Clinic Care Network (https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members), or at a large medical facility that models its multi-disciplinary approach similar to Mayo's.
- Can't get an appointment: Any tips on what to do? https://connect.mayoclinic.org/discussion/cant-get-an-appointment/

Plz I can't imagine what you're going through but Never give up hope.... you keep searching I HOPE and PRAY you all get what you need and more

Hey Dizzy, I hope and pray that your wife got the help she needed.

I’m on here for the exact same reason, with my Wife just being denied, and has had very similar symptoms and tests run.

Her Doctor has now put in a referral, so hoping for a different outcome.

Was hoping you could provide any updates on your Wife. Did she find what was wrong, or figure out anything to help is relieving the symptoms?

Thanks for any info!