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Post by LavenderLayoutLady on Feb 4, 2021 9:02:20 GMT
Also, just throwing it out there, but maybe post symptoms & rash pics on Reddit? i dont often use reddit- any suggestions on where to post? I'm not actually on it, though I read a bit. Maybe to the "Ask Reddit" section? Sorry, I'm not much help. I just know they get a lot of foot traffic.
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Post by Lexica on Feb 4, 2021 10:50:17 GMT
I am so happy that he will be seen at Mayo. As I have mentioned before, they saved my son's life. His cancer was unusual and my sister researched to find there were two places in the world that saw the most cases of it and had the best success - Mayo in Rochester and a facility in Israel. Our oncologist here in California had never seen a single case of this type of cancer, something he didn't divulge until my sister asked him when she felt the course of treatment he was suggesting was wrong according to the multiple doctors she contacted to seek their opinion. We were told that had we let this doctor treat him, he would not have lived.
We pulled him from the hospital here in California and flew him to the Mayo in Rochester, Minnesota. The Mayo facility closer to us in Arizona did not have the pediatric equipment necessary. Plus the Rochester facility had doctors who had dealt with his type of cancer many times. You want a doctor who has successfully treated children and were experts on the kind of cancer he had.
I was really impressed with the way Mayo organizes your appointments. You receive a packet when you first check in containing all of the appointments for your entire stay in chronological order, maps to the appropriate buildings, and a full description of each test to be done. In the main building, each floor is the same. They were split into two sides with the elevators in the center. When you go to the appropriate side, all treatment rooms were along the exterior with a giant waiting room in the center. You cannot get lost since the layout is always the same and the waiting area so huge right in the middle of each side. You only need to be sure of your floor and sides A or B. There are underground tunnels connecting the various buildings so you do not need to battle the snow when going to the various buildings during the winter. The buildings are very old, but so very organized.
Since my son was only nine, we began using the Ronald McDonald House during our stay. On one trip there was no available room at the RMH so we had to stay in a hotel. My son liked it so much that we continued to choose the same little hotel from then on. I think my son preferred the hotel due to its proximity to a little restaurant that served beer cheese soup. He ate that by the gallon since it was one of the few foods he could hold down.
He sometimes had a short appointment schedule day so I was able to take him to a few places to help keep his mind off of upcoming appointments. He loved the giant Mall of America (I put him in a wheelchair there. There was no way he could have walked it all.) During summer trips, we either rented a paddleboat or he fished in Silver Lake in town. It worked to keep his spirits up by doing fun excursions when possible.
I will be praying for your husband and hope Mayo is as good to him as it was to my boy.
You mentioned your husband has some memory issues. It might be safer for you to go ahead and accompany him for the whole trip. He may have a lot of free time after appointments and it would be better to have you there to keep things running smoothly. Could you find a hotel that allowed you to bring your dogs? And would they be okay left in the room without you for a few hours? Or bring them and look into a local kennel to watch them for a few hours when you are accompanying your husband to the clinic. I just don't like to think of him alone if he isn't operating at 100%.
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Deleted
Posts: 0
May 6, 2024 1:25:34 GMT
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Post by Deleted on Feb 4, 2021 12:05:20 GMT
Hi steph, new here but reading for a while.
there is a medical paper on metal allergy surgical implants . The photos within the full article look simelar. The full paper is longer but I have just posted the beginning. Allergic Reaction to Vanadium Causes a Diffuse Eczematous Eruption and Titanium Alloy Orthopedic Implant Failure Cutis. 2017 April;99(4):245-249 By Sally Engelhart, BA Robert J. Segal, MD Author and Disclosure Information
Allergy as a cause of adverse outcomes in patients with implanted orthopedic hardware is controversial. Allergy to titanium-based implants has not been well researched, as titanium is traditionally thought to be inert. We highlight the case of a patient who developed systemic dermatitis and implant failure after surgical placement of a titanium alloy (Ti6Al4V) plate in the left foot. The hardware was removed and the eruption cleared in the following weeks. The plate and screws were submitted for metal analysis. The elemental composition of both the plate and screws included 3 major elements—titanium, aluminum, and vanadium—as well as trace elements. Metal analysis revealed that the plate and screws had different microstructures, and electrochemical studies demonstrated that galvanic corrosion could have occurred between the plate and screws due to their different microstructures, contributing to the release of vanadium in vivo. The patient was patch tested with several metals including components of the implant and had a positive patch test reaction only to vanadium trichloride. These findings support a diagnosis of vanadium allergy and suggests that clinicians should consider including vanadium when patch testing patients with a suspected allergic reaction to vanadium-containing implants.
PDF DOWNLOAD PRACTICE POINTS
Vanadium may be an underrecognized allergen in patients with metal implants. Consider vanadium allergy in those with surgical implants and signs of hypersensitivity reaction. Test for allergy with vanadium trichloride. Niobium is an alternative for implants in vanadium-allergic patients.
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teddyw
Drama Llama
Posts: 6,825
Jun 29, 2014 1:56:04 GMT
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Post by teddyw on Feb 4, 2021 12:09:07 GMT
Thank goodness you finally have an appointment. I’m so sorry he’s not improving. Keeping you both in my prayers.
I’d consider driving him so you can both avoid airport exposure. My sister has been flying weekly. She says the flights are full and people in the airports keep removing their masks. There’s always at least 1 person on a flight who takes theirs off too.
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Post by mikklynn on Feb 4, 2021 12:46:48 GMT
Sending my love and prayers, dear friend.
As a caregiver of a medically complex patient, he can't go alone. There is no way he can remember everything. DH was hospitalized recently and I could not go in the hospital for the first 3 days, due to COVID restrictions. It was really hard to keep track of what was happening, even with DH texting me and the staff calling me.
Could you get a family member to stay with the pets?
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Deleted
Posts: 0
May 6, 2024 1:25:34 GMT
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Post by Deleted on Feb 4, 2021 13:02:09 GMT
I meant to say earlier , that I hope things get sorted out for you both . It must be very worrying time . Having seen some of the other peas suggest metal allergy, I had a look online and that article popped up I also had a look on google images and some of the photographs there seem similar to look at .
Whatever it maybe I do hope it gets resolved quickly for you .
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StephDRebel
Drama Llama
Posts: 6,664
Location: Ohio
Jul 5, 2014 1:53:49 GMT
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Post by StephDRebel on Feb 4, 2021 14:23:46 GMT
Is it possible that the rash isn’t connected to his other symptoms? You mentioned it started after his back surgery, which could suggest an allergy to the metal. It’s natural to assume it’s the undiagnosed condition that has got worse and is now manifesting itself in a new way, but maybe there are actually two different things going on. (Hickam's Dictum: "A man can have as many diseases as he damn well pleases.") Its 100% possible, its just that if its 2or more different things they cant find a diagnosis or treatment for any of them. He is perfectly healthy.
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Post by papercrafteradvocate on Feb 4, 2021 15:09:54 GMT
My hubby went through about 10+ years of rashes before finding out it was an allergy to nickel (and I’m the one that figured it out and demanded he be tested!!) I kept telling every doctor that his rashes started off after he wore a necklace with a charm/medal on it (made of nickel). They told me that had nothing to do with it, so let it go. When it got to be so unbearable for him, I started to keep notes on foods, activities, flare ups. Then as having to relate everything to a new/another dermatologist (who was a complete bitch) told me our years of notes and tracking were “cute” we went home deflated. I then started reading everything I could about metal allergy’s (going back to what I originally thought years ago) and discovered foods that contain high amounts of nickel. Ones which he ate every single day. So I took this one veggie (asparagus) that he ate every single day away from him. And the rash was gone within a week (and he’s been rash free for over a year now) so we scheduled him to be tested for allergy to nickel and that was the culprit! He also discovered that he was allergic to wool. Why is that important here? Because the dermatologists, infectious disease doctors were all Rx’ing lotions and creams that contained lanolin—a wool by product!!! He was told he had psoriasis, eczema, a fungus, parasites, atopic dermatitis and more... It was frustrating!!!! I hope you get answers!! These are photos of my hubby’s side, foot, leg —you can see that the look of the rash is different, which was part of the frustration at finding out what it was.
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Post by gizzy on Feb 4, 2021 15:20:45 GMT
I'm glad he's going to be seen at Mayo. Hopefully they will get to the bottom of this.
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brandy327
Drama Llama
Posts: 6,353
Jun 26, 2014 16:09:34 GMT
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Post by brandy327 on Feb 15, 2021 20:38:18 GMT
Thinking of you guys as his appt gets closer!!!
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Post by mom on Feb 15, 2021 20:41:25 GMT
I missed your latest update. Im sorry things are not better for your DH. Im glad you got an appointment - fingers crossed they will be able to help him. Keeping y'all in my prayers.
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Nanner
Drama Llama
Posts: 5,963
Jun 25, 2014 23:13:23 GMT
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Post by Nanner on Feb 15, 2021 21:51:09 GMT
Glad to hear he has an appointment. Good luck - I hope you guys can get some answers.
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Post by sunnyd on Feb 28, 2021 6:23:38 GMT
Hi @stephdrebel Just checking in to see if there is any update on your dh yet. I'm hoping Mayo is figuring this out. Sending good thoughts your way.
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Post by revirdsuba99 on Feb 28, 2021 6:42:13 GMT
StephDRebel is your DH at Mayo while you are eating cheese and crackers?
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