I don't know what symptoms are causing what could be wrong, so EVERYTHING is here and it's a long history. Does anyone have any idea what could be the problem??
Hubby's career started 30+ years ago in Camden, NJ as a paramedic. Back then it was common for them to enter burning buildings with no gear if they arrived before the fire department in case anyone was inside. So he spent years breathing in that smoke and the chemicals and such in it. He had an opportunity to move to Cali and got involved in fire fighting after that.
About 20 years ago he was hurt as a fire fighter when a second floor of a home on fire collapsed on hubs and his crew. Left him with fractured spine in his neck and back. He went through rehab and recovered but couldn't pass the physical anymore, so switched to law enforcement. Over the next 20 years or so he started having problems with disk degeneration problems.
During that time, in the last nine years of his career, he worked at the department we met at. Big department in southwest Florida and it was a normal night for him to have a fight with the 'bad guys' a couple times a night. Did a lot of great things for that degenerative disk disease he had. :smack: In that time he had a surgery on his neck to fuse three vertebrae. They put in cadaver bone, told him to take 8 weeks off and not move unless necessary so his bone could graft to it. He said he immediately felt relief from the bone grinding on bone pain and from the pinched nerve pain, but he woke up with a migraine.
Not one to take 'be still' as a medical instruction he lied to his Sgt so he could go back to work early and take a taser class where he volunteered to be tased. After that the migraines became more severe and more frequent. They put him on neurontin and Maxalt as needed when the symptoms started and then injectible Imitrex when it was out of control.
Yes, I know I married an idiot.
He called me on his way home and said he was in agony and took himself back out on medical leave for his last two weeks that he should have been out anyway. His neck, even after the recovery period still didn't feel better. Seven months post op he complained enough that they went in to do a CT Scan (I think that's what it was) and found that his bone had never grafted to the cadaver bone and the muscles had bent the metal rods (for lack of the proper term) that they'd screwed to the bones. They had to go back in and remove the cadaver bone and put in titanium rods and screw all that together. This time he spent the full 8 weeks in bed as instructed.
Within a year his doctors were begging him to retire. The damage in his neck and back due to the degenerated disks, was so severe they were afraid he'd wind up dead or paralyzed (depending on where the damage is) if he was in a bad fight or accident. It took a year but he called one night and agreed that he had to retire. He'd gone as a back up unit to one of his guys and when he got there found he was temporarily paralyzed. Not only could he not help his guy, he was a sitting duck.
We wound up moving to TN about four months later and he planned to go back to EMS as an instructor. When the agency that was going to hire him did his medical they said he was in too poor condition for them to hire him. By this time he was on high levels of pain medication, daily Maxalt, near daily Imitrex and his dose of Neurontin had been tripled and he was still in agony. He looked into other jobs that he had experience with, but between the medications he was on, the damage he still had in his spine and his inability to sit or stand for long periods of time his doctors talked him into filing for disability.
A couple months later, on Christmas Eve, he started started having stroke symptoms and we took him to the ER. He was diagnosed with a TIA. His BP was sky high so they got him started on BP meds. By this time he was on the same meds, plus the new BP med and depression meds. The next day he was admitted to the hospital with chest pains.
The following September his neurologist referred him to a neurosurgeon for surgery on his back. Aside from the pain, he was having a lot of problems with his left side going numb and he fell a lot. The recovery was horrible for him. It took him about four months to be somewhat normal and even now, several years later, he's not 'himself'. The left side numbness never improved. He's had Xrays and MRIs and CT scans, etc and everything has shown the surgery is fine, no damage or change, other than continued degeneration of the disks. The neurosurgeon did tell him that there was only so much surgery they could do over time and eventually he will probably wind up in a wheelchair.
Four months later he had a doctor's appointment with a new doctor in Nashville. When he got there they did his vital and found his BP at stroke level again. He was once again having stroke symptoms so the doctor's office had him sent to Vanderbilt immediately. Vanderbilt left him in the ER WAITING ROOM for five hours! I got off work and had a fit when I got there and found out, told them I was taking him to OUR ER in little bitty no where town because even they were better than this. They magically got him a room and started meds. Took a few hours but eventually he was 'stable' and they released him, no testing, no follow up, just see your primary care doc.
Several months after this, another chest pain incident, another hospital stay, more tests with no results. Follow up with primary care and get referral to cardiologist. Did both and all tests normal, still no idea what is causing problems.
Flash forward to last September. For a week straight hubby had crazy problems with his heart rate. It was normally in the lower 40s (way too low for him) but would suddenly sky rocket for no reason he could find to between 180 - 200. His BP was all over the place as well. He'd started having chest pains again and his left side would go numb. He called his PCP who had him come in but while he was there the heart rate was in the lower 50s and while still low for a man with health problems who's a little over weight, he wasn't too concerned. BP was a bit low but he didn't seem too bothered by that either. He ordered a stress test for him but it was a couple weeks away. He told him that if it happened again to immediately go to the ER so they could see it happening and hopefully find out the cause.
A couple days went by and he'd spent all day in bed, just watching TV, very unlike him. Even in the pain he was in, he has always been the type of guy that forces himself to do something. We joke about his yard work. He insists on caring for seven acres of land, having a big garden, etc. But for a week he found he couldn't be outside for more than an hour without being out of breath. A few times he was so exhausted and out of breath he sat against a tree gasping for air and had to have one of the kids come help him inside. So for him to be in bed a couple days, I knew something was very wrong. I also noticed that, while over time his cognitive function definitely started to decrease, that it had gotten much worse that usual. He's a college educated guy, taught courses for the FBI academy for a while. The kids used to joke and call him the Grammar Police. But he'd gotten to the point that he couldn't remember words, lost his train of thought and got confused a lot.
That night after dinner I was asking how he was feeling and he said to be honest he'd been having the heart episodes, the erratic BP and the chest pain and numbness on his left side again. I told him he needed to go to the ER and he said he didn't want to go and have them tell him nothing was wrong and send him home again and him feel stupid. I asked him if he was back in the EMS days and walked in someone's home and they gave him their medical history and symptoms what would he do. He agreed that yes, he'd insist they go to the hospital or sign and AMA form. So I got his jeans and threw them to him and off we went.
We got to the hospital and they did his vitals and admitted him immediately and started running tests like crazy. Long story short, he was diagnosed with COPD. They think it's the years working EMS in Camden when he was breathing in that toxic smoke from burning buildings. They also found that the 18 medications his two doctors had him on were basically doing battle in his body. We'd always thought he was highly over medicated but figured the doctors have those fancy MD's behind their name and we don't so like idiots, we just trusted them. The doctors in the hospital got him backed down to five a day plus the 'as needed' meds.
He was sent home on oxygen 24/7 and instructed to NOT leave the house unless it was to go to the hospital or doctor. No vehicle unless it had A/C in it as well. He just had no heat tolerance and they didn't want to risk him having an allergic reaction to something in the air making things worse either. They told him that he had to accept that this new diagnoses meant he has physical limitations and he can't be pushing himself anymore.
Since then, he's not been himself at all. He still has no energy, still is dependent on the oxygen for about 20 hours a day, gets exhausted just going to the mailbox. He followed up with a pulmonology specialist who confirmed COPD but like the hospital, said it's only a guess as to where it came from. He's not a smoker BTW in case anyone was wondering.
So now, about two weeks ago we went to town. A lot of his restrictions were lifted. Oxygen at night and as needed during the day. He has a portable tank to take when he goes to town but it's a fight to get him to bring it. The idiot thing again, I know. He can be outdoors but not in the heat of the day and not long. When he starts to feel worn down any at all he's to immediately go back inside on the oxygen.
We were in the store less than 10 minutes that day and he said he didn't feel good. He was out of breath, his left side went numb, he got dizzy and started to sweat like crazy. I asked if he needed to go back to the car and sit in the A/C and he said yes. Gave him the keys and told him I'd grab the last few things and be right out. I went to the other side of the store to get what we needed, got in a long line to check out and headed to the car. When I got to the car he'd been there all of two minutes. I asked what took him so long and he said he started back and then got lost. He didn't know where he was, where he was going, etc. He just wandered the store. He said he never thought to call me, not because he forgot he had a phone or anything, but it was like no other humans he knew existed. Almost like total amnesia.
Well, that freaked me out. His left side was still numb. He said his heart rate felt very low and he couldn't catch his breath. I asked if he wanted to go to the ER and of course he said no. So I took him home and he took his vitals. O-sat was a bit low in the mid 80s but for him that's fairly normal. Heart rate was at 48. BP was nuts!!! He tried it sitting, standing and laying down. He tried it in both arms and found each arm drastically different. The low was 80s/50s. The high was 170s/110s. He agreed that he needed to go to the ER but said he was so hot he felt like he was going to be sick and he wanted to take a cold shower first. Next thing I know he comes back in the room and says he feels fine. We check vitals again and suddenly everything is within normal for him limits!!
So we didn't bother going to the ER. They wouldn't find anything at that point anyway. But I did get a notebook and put that and a pen on his side of the bed and told him to start logging his vitals at different times of the day and during different situations. Well, of course that lasted a day and he's not done a bit since then. Some days it's like having a kid! So a few days after this latest episode it happens again but not as severe. I told him severe or not he was going. Something is wrong. I don't know what but I know this isn't him and it's not right.
Back to the ER we go. This time the doctor diagnoses him with another TIA and says to follow up with the neurologist for an MRI. So we call his neuro when he's released, he goes to see him, has a carotid artery ultrasound (normal), has his MRI two days later and goes back for the reading.
His neuro is in the process of retiring and is in his last few weeks. He walks in and asks if he's there for his meds. He says, " no, got those earlier in the week when I was here. You had me get an MRI and I"m here for the results." Doctor says the guy that reads them was 'out' yesterday but he'll see if they're ready. Walks back in the office, shakes hubby's hand and tell him they're normal and he's healthy as can be, congratulations and walks out leaving us with our mouth hanging open.
Don't get me wrong. I'm sure this close to retirement you're head isn't in the game. And who knows what he has going on at home. But this is a patient you've had for nearly six years now, that has a lot of issues, and is having some pretty serious symptoms. And that is your answer?? No follow up, no more testing, just congratulations, you're healthy??
Needless to say I wasn't happy. I started looking on line and found a neuro that's highly recommended in Chattanooga. Called and explained that his neuro is retiring and he's having these symptoms and ask if the doctor is accepting new patients. Yes he is. Excellent, I need an appointment. She can't do that; we have to be referred. Come the freak on! Seriously?? So angry at this point I'm ready to explode.
Call his regular neuro today and tell her what's up. She says that his doctor can continue to see him until he closes the practice. So I told her I have no faith in him anymore and explain hubby's symptoms and what happened. She agreed that while he is in the process of moving and is traveling to and from another state to work and is exhausted, that is no excuse for leaving it like this. She says she'll get the appointment with the other doctor as a back up but she's also pulling his doctor aside and talking to him.
She called me back in a couple hours. Appointment with new guy Dec 13th. That's the soonest. Ok, he's highly recommended. Guess I can't expect any appointments to be available next week. But she also said she sat the doctor down and told him - with no distractions - what was going on with hubby and he agreed that he needs to come back ASAP for more testing. So he goes back in on Friday morning. In the meantime, hubby is sleeping 16 to 18 hours a day. A walk to the computer desk and sitting at the chair for 30 minutes leaves him out of breath and back in bed on oxygen for a couple hours. He can't go outside at all anymore, even with his oxygen with him. I know something is wrong but all the tests are coming up normal. At this point I feel like I'm sitting here watching my husband die and I don't know how to help or make it better. He's in pain 24/7 with his neck and back. He's depressed and miserable because now he's not only lost his career that he truly lived for, but he's really losing any quality of life that he did have.
With these symptoms and all tests coming up with nothing, does anyone have any ideas what we should be doing next? Tests, different types of doctors, etc? His parents wondered if it's psychological but he's having physical symptoms you can see - the lowered O-sat, BP, heart rate, etc. His cognitive function continues to slide. He can no longer handle any stress at all in life. Stupid little things that don't matter make him insane and in the process his nagging is making the rest of us in the family insane. It's making for a stressful household and no matter how much I try to talk to him, he doesn't grasp the concept. I'm worried about him, I'm worried about how it's affecting the kids and grandkids living here. I'm just lost.
There is only one aspect of this long involved history that I can respond to - and that is the high blood pressure and the history of TIAs. Persons with elevated blood pressure are susceptible to strokes and other vascular insults. Accordingly, high blood pressure merits treatment.
As for the rest of this complicated history, it is clear that the issues relate to his neurological status and I am unable to comment on that.
Please understand that I am unable to diagnose medical conditions online.
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