Humpty Dumpty Hubby (Surgery 40 looming)

Posted by Faithwalker007 (Renee) @faithwalker007, Nov 24, 2020

My husband, James has had 39 surgeries with approximately half of those on his joints—multiple shoulder and knee surgeries including a knee replacement and revision, ankle reconstruction (no known reason for collapse of joint), carpal tunnel in both wrists, hip, and disc in back (from a fall.)
He’s never had a broken bone in his life except for his nose.
History of consequence? Born deaf with a hard cleft palate and lip. (Other half of surgeries) reconstructed surgeries and hearing in right ear with artificial bones, chronic cholesteotoma removal and one meningial membrane rupture, ear steroid use and ofloxacin use to treat open ear infections.
Now, today, he suffers from severe traumatic arthritis and joint pain including muscular pain. However his shoulders that have been operated on FIVE times collectively are separating and slipping out of joint in his sleep. He must support them when he sits.
His wrists which were operated on for carpal tunnel six months ago are reverting back again to the way they were initially especially the left one.
His hip and left knee which was replaced is reverting to painful again even after being revised.

Anything he has “fixed” doesn’t last.

This is all soft tissue and joint. Not bone except for his knee and hip which was primarily a labrum tear.

He’s never been diagnosed with anything other than traumatic arthritis.

RA runs in his family. He’s not diabetic yet but he’s part Native American, Sioux and his family is.

He has severe neuropathy in his feet and hands now. His RA test over 6 years ago was negative so the specialist said he didn’t have RA.

Ideas?

@faithwalker007, I'm not sure how to respond. There's a lot to unpack here. If I understand correctly, half of your husband's surgeries were reconstructive surgeries related to hearing and cleft palate at birth. The remaining surgeries were necessary due to unknown causes or falls due to unknown causes. You suspect that there may be an underlying cause or condition, but as of yet, no diagnosis fits. Am I interpreting this correctly?

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@colleenyoung

@faithwalker007, I'm not sure how to respond. There's a lot to unpack here. If I understand correctly, half of your husband's surgeries were reconstructive surgeries related to hearing and cleft palate at birth. The remaining surgeries were necessary due to unknown causes or falls due to unknown causes. You suspect that there may be an underlying cause or condition, but as of yet, no diagnosis fits. Am I interpreting this correctly?

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James only fell once and that was a few days after a major shoulder surgery. He couldn’t grab the railing when our cat wrapped around his feet at the top of the staircase and he fell head first down 8 wide wooden steps that he’d constructed when he’d remodeled our house.
He blew the surgery out in his left shoulder, tore his labrum in his left hip, blew his meniscus and part of his Reconstructed ACL in his left knee, two discs in his back, and got a severe concussion. Thankfully he survived and didn’t kill the cat. She stayed with us for ten more years! He even managed to walk up the stairs and out the house so we could take him to the hospital. Why? That’a a story for another time.
All other surgeries on his body are related to his ears, congenital cleft condition, work injuries, or simply his body not staying fixed from previous surgeries.
James has worked manual labor in the oil field, as an electrician on highway, industrial, and residential, and as a football and wrestling coach and official (junior high, high school, and a Olympic qualifiers with their school districts and USA wrestling) for most of his life.
He’s no stranger to pain or ignoring it, but his body has never been kind to him nor her to it.

REPLY
@colleenyoung

@faithwalker007, I'm not sure how to respond. There's a lot to unpack here. If I understand correctly, half of your husband's surgeries were reconstructive surgeries related to hearing and cleft palate at birth. The remaining surgeries were necessary due to unknown causes or falls due to unknown causes. You suspect that there may be an underlying cause or condition, but as of yet, no diagnosis fits. Am I interpreting this correctly?

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I’m wondering if there may be an underlying condition that has not been thoroughly pursued here in Wyoming.
There are no specialists in our town.
1. RA: Rheumatoid Arthritis. He’s only seen one rheumatologist and since he didn’t test positive for RH factor, it was automatically ruled out. He was 45 years old at the time.
2. EDS: Loose Joint Ehlers Danlos Syndrome. Since he began to get joint and body injuries at age 24 – ACL rupture, his body refuses to remain healed. His shoulders have taken abuse with his employment but have been repaired repeatedly (5 times- 2 times in the left, 2 in the right with 1 repair in the right after the fall.
3. Steroids and joint frailty: James was given steroids orally and by ear drops since he was a baby to 45 years old for his ear infections and cholesteotoma removal maintenance. Both of his shoulders are dislocating again in his sleep, and any prolonged activity causes severe pain and lack of controlled mobility.
His back is the same way. He’s has surgery to repair his discs after the fall. They have been scanned and need surgery again. His knees, the left has had ACL reconstruction and a TKR and a revision. It continues to cause severe pain and clicking. The right has severe arthritis and needs replaced which he refuses to do.
His hip which required labral repair after the fall, is causing issues again and needs to be evaluated. He’s been told a replacement is in the future.
4. “Floxed:” James was given Ofloxin ear drops to control his ear infections before and after removal of his cholesteotomas in his left ear. After removal, the wound left behind in the ear canal was an open wound and he applied 4-8 drops of Ofloxin directly three to four times a day. His left ankle which ruptured spontaneously and was completely reconstructed is becoming weaker and turning and collapsing on him again for no reason we can find.
5. CRPS: Complex Regional Pain Syndrome, type 1 or 2
During one of his multiple surgeries or accidents, James developed CRPS. James has severe nerve pain in one or both feet, and legs as well as carpal tunnel (hand pain of which the right carpal tunnel surgery has failed.)

He suffers tremendous pain, can’t sleep at night very well, and must fight through it to be my caregiver.
Is it fair? No. Is it life? Yes. Does he need diagnosed and treated correctly? Yes.
BEFORE he loses his pain management and suffers agony.
BEFORE we both do.

REPLY
@faithwalker007

I’m wondering if there may be an underlying condition that has not been thoroughly pursued here in Wyoming.
There are no specialists in our town.
1. RA: Rheumatoid Arthritis. He’s only seen one rheumatologist and since he didn’t test positive for RH factor, it was automatically ruled out. He was 45 years old at the time.
2. EDS: Loose Joint Ehlers Danlos Syndrome. Since he began to get joint and body injuries at age 24 – ACL rupture, his body refuses to remain healed. His shoulders have taken abuse with his employment but have been repaired repeatedly (5 times- 2 times in the left, 2 in the right with 1 repair in the right after the fall.
3. Steroids and joint frailty: James was given steroids orally and by ear drops since he was a baby to 45 years old for his ear infections and cholesteotoma removal maintenance. Both of his shoulders are dislocating again in his sleep, and any prolonged activity causes severe pain and lack of controlled mobility.
His back is the same way. He’s has surgery to repair his discs after the fall. They have been scanned and need surgery again. His knees, the left has had ACL reconstruction and a TKR and a revision. It continues to cause severe pain and clicking. The right has severe arthritis and needs replaced which he refuses to do.
His hip which required labral repair after the fall, is causing issues again and needs to be evaluated. He’s been told a replacement is in the future.
4. “Floxed:” James was given Ofloxin ear drops to control his ear infections before and after removal of his cholesteotomas in his left ear. After removal, the wound left behind in the ear canal was an open wound and he applied 4-8 drops of Ofloxin directly three to four times a day. His left ankle which ruptured spontaneously and was completely reconstructed is becoming weaker and turning and collapsing on him again for no reason we can find.
5. CRPS: Complex Regional Pain Syndrome, type 1 or 2
During one of his multiple surgeries or accidents, James developed CRPS. James has severe nerve pain in one or both feet, and legs as well as carpal tunnel (hand pain of which the right carpal tunnel surgery has failed.)

He suffers tremendous pain, can’t sleep at night very well, and must fight through it to be my caregiver.
Is it fair? No. Is it life? Yes. Does he need diagnosed and treated correctly? Yes.
BEFORE he loses his pain management and suffers agony.
BEFORE we both do.

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Again, these are all possible diagnoses. He has NOT BEEN DIAGNOSED WITH ANY OF THESE.
The only thing he has been officially diagnosed with is traumatic chronic pain.

REPLY
@faithwalker007

Again, these are all possible diagnoses. He has NOT BEEN DIAGNOSED WITH ANY OF THESE.
The only thing he has been officially diagnosed with is traumatic chronic pain.

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Hello @faithwalker007,

I'm really sorry to hear about all of your husband's health issues. It sounds complicated and difficult. Has he been seen at a major medical center, like a university medical school, or a facility like Mayo Clinic? He probably needs the help of a multidisciplinary center where a group of specialists can work together to understand the root cause of his many problems.

I'm guessing that he has seen a lot of orthopedic specialists because of all of the joint issues. Has he ever seen an endocrinologist? They are really good at understanding complicated health issues and putting various puzzle pieces together. They are undoubtedly the most brilliant people in the health care industry.

I hope you continue to update us about your husband. Will you post again?

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