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5 days ago · Doctor patient relationships in Lung Health

@llwortman LInda, you are so right! I agree. I had never experienced truly compassionate and expert care until I came to Mayo. I was impressed that my Mayo doctor received a phone call during my first appointment with test results and an evaluation that had been completed just an hour before from a different specialty. That extra effort in timely communication only happened at Mayo, and didn't happen at all with doctors I saw before I came to Mayo. I came to appointments where they should have had test results and communications, but they knew nothing and then they didn't find or look for results that had been sent to the wrong office, and the computer network didn't allow global sharing of the information between departments. It just wasted time. If you haven't experienced how good and efficient health care can be, you don't know what you are missing. It's so easy for doctors to miss things, and patients can give up because their doctors have. This is why patients need to educate themselves and advocate for themselves and family members. Once you become an empowered patient it changes the way you interact with your physicians.

Thu, May 16 10:53am · Vestibular Migraine with associated tactile illusions in Brain & Nervous System

@corxdv Here are some extensive articles about vestibular impairment and the trigeminal nerve. These are written by a physical rehab therapist. I have had some vertigo myself, caused by muscle spasms that moved C1 & C2 and when my therapist realigned everything, it resolved the vertigo. I am a spine surgery patient and also have thoracic outlet syndrome which causes tightness from my chest and neck up to my jaw which is worse on one side, so I have uneven pressure on the sides of my neck up to my jaw. One side was so tight, I was wearing down my dental fillings only on that side of my mouth. I had a collapsed disc at C5/C6 and bone spurs causing stenosis in the central canal, and that was generating the muscle spasms. I had spine surgery at Mayo and it resolved the spasms that were causing the vertigo, and everything has calmed down. My therapist is an expert level in the John Barnes methods of myofascial release which has helped a lot. There is a discussion here with a lot of information on MFR. I am still working on the TOS with my PT and gaining ground. I did have tingling in my face from the trigeminal nerve prior to the surgery, and can still have a bit of that now and then, and then I check my spinal alignment and I have found slight shifts above my fused level which my therapist can easily fix. Mostly that happens if I sleep wrong and have my neck in a turned position which can kick up the symptoms and cause a slight spasm. The issues for me were caused by misalignment of the spine, skull, and jaw due to overly tight muscles and uneven muscle tension from side to side, that then causes compression.





Wed, May 15 10:12am · Phrenic Nerve damage in Lung Health

@userunknown Do you think that physical therapy may help? There are physical therapists who specialize in breathing issues. I haven't had your experience, but my breathing has been physically affected by issues because of thoracic outlet syndrome causing muscle tightness through my chest so it doesn't expand properly on one side, and having asthma and allergies doesn't help. My PT has done some muscle releases and also diaphragm releases that helps my chest move better with breathing. This may be something to ask your doctor if you could benefit from something like that or if it would be risky because of the cancer. Have you been seen by a pulmonologist? They may be able to render an opinion as to why the diaphragm is in a stuck position and if inserting a breathing tube could possibly damage the phrenic nerve. I imagine that might be a hard question to answer. I certainly understand that you are in a difficult position and hope you can find some answers.

Wed, May 15 9:15am · dementia in Brain & Nervous System

@barbbie I feel for you. That is hard to accept. I was wondering if when he asks you where you are, if you could tell him that you'll go get her, then step away and come right back and say " You were asking for me? Here I am! " That would let him think that he's OK and hadn't made a mistake. I think for him, it must be traumatic if he realized he's made a mistake, or if someone tries to correct him, and he doesn't understand. To him, it probably doesn't matter how you respond as far as your identity. I remember visiting my father in law in a dementia ward of a nursing home, and the staff was having him sing Jingle Bells. They asked him, and he sang Jingle Bells for us by himself. That is a good memory and it was fun. It's not something he would have normally done, but he was able to freely enjoy it. He was kind of like a little kid at that point enjoying the attention, and I always looked for ways to make him feel good and like he was still in control of his life.

Wed, May 15 8:57am · Phrenic Nerve damage in Lung Health

@windwalker My hands and forearms still get blotchy and if my symptoms get kicked up because of overuse of muscles, my hands can still get a bit cold, but they don't turn as blue any more. Right now they have a mottled appearance on my palms, and yesterday in physical therapy, I was doing exercises to strengthen muscles around my shoulder blades and I ache a bit today. In TOS, the front of the chest is too tight, so you try to loosen the front, and strengthen the muscles in back in the shoulders to hold the shoulder where it belongs instead of it going too far forward. My suggestion would be to look into physical therapy with Myofascial release with a therapist who is familiar with TOS. Thoracic outlet syndrome (TOS) is entrapment of the nerves and vessels where they pass through some small spaces in between the collar bone and rib cage. There are similar types of issues that can happen in the pelvis because of alignment. MFR can loosen things and get it back into better alignment. Our habits of computer and screen time and the posture that goes with it is a contributing factor to a problem like this. Here is the discussion on MFR with lots of information. That would be conservative and it might help. MFR helps a lot of things and gets the body moving again as it should. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Mon, May 13 7:01pm · Phrenic Nerve damage in Lung Health

@userunknown I've read about Dr. Kaufman and the website says he is the only one in the country doing that surgery for a graft of the phrenic nerve.. I know it's not convenient, but you have to consider how much your life could change with the right doctor. I also live in IL and tried to get several surgeons to help me for a spine problem and none would. I was refused 5 times before I came to Mayo which was a 5 hour drive for me, but it was worth it. You definitely need another opinion to determine if your phrenic nerve was damaged because you will not get that from your current doctor. I had a similar situation once when I had carpal tunnel surgery that didn't fix the issues because they missed that I had thoracic outlet syndrome and the surgeon wanted nothing to do with me. He wouldn't even sign for physical therapy and claimed he wouldn't be able to judge if it would help or not. As far as he was concerned, his job was done, and he didn't want a poor outcome. One of the symptoms of TOS is impaired circulation that makes hands turn blue and cold which is what I was telling the doctor was happening. He took my pulse, said it was fine and accused me of malingering in his notes. I had to get another opinion from a doctor who was familiar with TOS and I did get a diagnosis and help. Carpal tunnel and TOS have overlapping symptoms.

Mon, May 13 12:38pm · dementia in Brain & Nervous System

@1977lizzy Do you have a Power of Attorney document? If so, his doctors would make recommendations that would invoke Power of Attorney so you can handle everything without question. You don't have to convince him. I know it's hard. You'll have to hide your doings to keep him from interfering. My father in law had ALZ and had angry outbursts. The best thing to do was just change the direction of the conversation and distract him with something else. He had been against updating the kitchen for many years (even just new wallpaper), and we got him to go along with it by complimenting him for picking out the new wall paper and it made him feel good to think he was in charge and getting attention for it. We did that over and over and he really was happy about it and the 30 year old wall paper was gone.

Mon, May 13 9:57am · Mysterious shortness of breath in Lung Health

@rosemarya It sounds to me like you may have allergies. Mold spores in the air will increase a lot with humidity and might be your trigger. I've had the same experience with crashing. I have allergies to lots of inhaled things including mold. I do allergy shots, use antihistamines, and use inhalers and use HEPA filters in my home. I do have better asthma control when the allergies are under control.