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July 6, 2022
In April 2022, Joel (“JJ” to a lot of us) started having some random numbness and tingling in his left hand, left thumb, pointer and middle finger. After a few weeks of dealing with this, he decided it was time to see someone for it and he went to Tria. After an exam, they said he had carpel tunnel and had him start PT. After weeks of going to PT with random therapists, one decided to K tape his tricep and put him in an elbow and wrist brace to sleep in at night thinking he may be sleeping funny on it.
The next day his symptoms worsened so he stopped wearing the brace and a few days later took off the K tape. After a few weeks of the symptoms becoming more painful with pain radiating into the upper arm, he went back to Tria. The doctor felt the upper arm and he was in pain whenever it was pressed on. They thought he might have a blood clot but it was unrelated to the hand issues he was having.
The doctor at the ER ordered an ultrasound and said Joel had a blood clot in his left bicep. They said the clot was superficial and had him follow up with a clot specialist the next week. Joel went to the clot specialist and he agreed the clot was superficial and had him take some medications to help with the clot.
While the symptoms continued to worsen, the pain was becoming unbearable. He went over a month of dealing with the numbness, tingling and burning sensation down most of his left arm at this. Thankfully, one night he was taking a shower and while rubbing soap over the arm where the “clot” was, the pain was excruciating. It was so horrible that he was worried the blood clot had dislodged so he went to the ER.
The ER immediately did an ultrasound because of the blood clot diagnosis. The doctor came in to do the exam and said he’d never had a clot like that before where he could actually feel that a lump was palpable. The doctor ordered another ultrasound and after that, they were convinced it wasn’t a blood clot. He ordered an MRI and the MRI showed Joel had a 2cm tumor in his arm, specifically a nerve sheath tumor. They gave him a referral to see a specialist for it.
After waiting almost two weeks to see the surgeon he was referred to, the doctor sent Joel a message via MyChart letting him know he was cancelling the appointment because he couldn’t help him. He needed to find someone else. Ahhh, what!?!? After receiving that message he went back to Tria. Explained what was going on with it being a tumor and they couldn’t get him in until the following week. He took that appointment but then decided to stop at TCO, which is across the road, and thank goodness he did! They were able to get him in the next morning with a specialist and they had all of his records pushed from Maple Grove hospital, Tria and the Neurology clinic he had tests completed at.
We met with an orthopedic surgeon at TCO in Edina and I swear it was a Godwink. This doctor came in and accessed Joel, went over the findings of the scans, and told him he needed to go to Mayo for surgery. This doctor studied under the nerve sheath tumor team of 3 doctors from Mayo and said they were the best. He said he was going to, “fast track” Joel in with that team and get things moving “ASAP”. The next week, Mayo had all of Joel’s records and scans, and were able to get him in the following Monday.
At that appointment, the doctor did a series of strength, flexibility, and pin needle testing to determine the difference between his left and right arm/hand/fingers. The doctor immediately expressed concern that the tumor may be malignant. A PET MR was scheduled for Thursday. After the PET MR, they ordered another ultrasound and EMG. Joel said this second EMG was the worse pain he’d ever had. He felt like his arm was on fire. Sadly, all the findings from these tests and scans supported their concern for it being a malignant nerve sheath tumor. The tumor had grown from 2cm to 2.5-3cm since his first MRI about a month prior. They also found another tiny (9mm) tumor in his 9th rib, but that one appears to be benign and they’re not concerned about it. There was only one doctor who felt confident enough to attempt a biopsy because of the location and difficulty of it being in the middle of the nerve instead of the side, where these kind of tumors tend to be. The tumor itself actually has two nerve fascicles running through it, giving it blood supply which is very concerning as well.
The biopsy was scheduled for Tuesday, July 5th. No one had told Joel he was going to be sedated and could not eat or drink anything. After making the nearly two hour drive one way, they gave him the option of rescheduling or doing the procedure with just local anesthetic. Despite being fearful of the pain as just touching his left arm was unbearable at this point, he agreed to just get it done. He said the biopsy was absolutely excruciating, worst pain he’s ever felt as he said it felt like he was burning alive from the inside out. Multiple nurses had to hold him down as he screamed in pain. Thankfully, the doctor got 10 good samples so now we wait. They told us 3-4 days, today is day 3. The waiting and not knowing is so hard. We’re all sick with worry, praying (and me crying) in the most odd and random places. We are trying to stay busy as best we can, but the pain since the biopsy has left Joel pretty miserable. He has no feeling in his left hand, down through his thumb/pointer/middle finger. His back and neck are completely out of whack from him tensing up from the pain, in addition to muscles being sore from being held down. They have him on some Oxy to help with the pain, he’s using the heating pad for his neck and back, while icing his left bicep.
We are praying the tests and doctors are wrong, but when Mayo tells you; “we’ve never seen anything like this”, “you’re the less than 1%”, “tissue is the issue”, and “when we cut you open you’ll split like the Red Sea”, it makes it very difficult to stay positive.
Thank you for being part of Joel’s journey with us. Prayers are greatly appreciated.
We met with JJ’s surgeon at Mayo this week and he is very pleased with how the surgery went. He reiterated how he and all the doctors on his case are still in shock it was benign. He reminded him how lucky he is. He said JJ’s the less than 1% of 1,000, and then the less than 1% of 3,000 from there. He was so happy for us but speechless and dumbfounded at the final results. He truly didn’t think things would turn out so well for JJ.
The nerves in JJ’s arm, hand and fingers are firing up and while that’s fantastic news, it’s also very painful. At times, excruciating to the point he’s debated on whether to have me drive him to the ER for IV meds. The doctor reassured us this is all fantastic news and means best case scenario is happening … the wiring in his nerve is coming back.
JJ continues to take gammapentin which helps block the nerve pain. Thank goodness for that because I can only imagine how bad the pain would be if he didn’t have the nerve block pains on board.
JJ is going to start PT here in the cities. Then he’ll have virtual appointments with his team in Mayo, and the PT folks will keep the Mayo doctors in the loop as to how things are going.
We know how lucky we are and continue to count our blessings and thank God for granting us another miracle. We have relied on our faith a lot since having the triplets, and truly know how blessed we are.
We appreciate the support and I’ll update as things happen.
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