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Hematologists, I need your advice!

Started by Maria Scott4 · · 👁 4 views · 4 replies

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Participants Maria Scott4Robin Robinson8bluedriver2
Maria Scott4 Maria Scott4 NewcomerOP
1 message
joined May 2008
#1 ·
My grandmother is 78 and has been dealing with leukopenia and thrombocytopenia for about a decade now—all accompanied by an enlarged spleen that has grown quite significant lately.
Over the last two months, she’s been struggling with a severe inflammation running from her left hip down to her knee. Her GP put her on a cocktail of painkillers (Tramal, Voltaren suppositories), an antibiotic called Klavax 1000mg, and Myoflex, but nothing touched the pain; if anything, the leg just kept getting worse. By February 8th, the pain became unbearable, so her doctor sent her to be hospitalized at a local hospital in Des Moines. They ran an EEG, an X-ray of the hip, and a color Doppler ultrasound of the veins, but none of those tests pinpointed the cause. Given the hypersplenism, the doctor suggested the enlarged spleen might be pressing on the lymph channels running through her leg, and she recommended we see a hematologist immediately. I’m reaching out to anyone who can offer some expert insight—is there any way to help her, or at least manage this pain? Is there actually a way to shrink the spleen? Thanks in advance.
Robin Robinson8 Robin Robinson8 Newcomer
7 messages
joined Jul 2008
#2 ·
Maria Scott4 said:I’m asking for my grandmother—she’s 78 and has been dealing with leukopenia and thrombocytopenia for about ten years now, along with an enlarged spleen that’s grown quite large recently.
Over the last two months, she’s had this severe inflammation in her left thigh, stretching from her hip down to her knee. Her primary care doctor put her on some pain meds (Tramadol, Voltaren suppositories), an antibiotic called Klavax 1000mg, and Myoflex. Unfortunately, the meds didn't really touch the pain, and the leg issue just kept getting worse. By February 8th, the pain became unbearable, so her doctor referred her for hospitalization at a nearby hospital in Des Moines. They ran an EEG, an X-ray of her hip, and a color Doppler ultrasound of her veins, but none of those tests pinpointed the cause. Since she has hypersplenism, the doctor suggested the enlarged spleen might be pressing on the lymph nodes/channels running through her leg, so she recommended we see a hematologist. I’m reaching out to anyone who might have some insight or expert advice—is there anything that can be done to help her, or at least manage the pain? Is there any way to actually shrink the spleen? Thanks so much in advance!

Unfortunately, it doesn't look like we have many specialists here. I wish I could be more helpful, but I suppose your best bet would be seeking a second opinion from a private specialist—or maybe looking for a consultation in a major city like Chicago, where you'd have a much wider selection of doctors than you would in Des Moines. I'm really sorry, sending my best.
Maria Scott4 Maria Scott4 NewcomerOP
1 message
joined May 2008
#3 ·
We gave that a shot, but everyone keeps insisting she’s just too old—that there’s nothing left to be done at this stage. Now she’s just sitting there with patches for the pain, and honestly, I have no idea what comes next. Thanks for the kind thoughts, though. Best,
bluedriver2 bluedriver2 Member
16 messages
joined Nov 2007
#4 ·
If the whole reason her lymph is backed up and her platelets and white cell counts are tanking is just because of an enlarged spleen, is she even a candidate for a splenectomy? Does anyone know a surgeon or a hematologist (or maybe just an internist) who could take a look and see if it's an option? How’s her health otherwise... Is there any sign of tissue inflammation? Or is she already on antibiotics for it?
Maria Scott4 Maria Scott4 NewcomerOP
1 message
joined May 2008
#5 ·
bluedriver2 said:If splenomegaly is the sole cause behind the lymph stagnation and the drop in platelets and white blood cells, would Grandma be a candidate for a splenectomy? Is there a surgeon or a hematologist—maybe an internist—who could evaluate her for the procedure? What’s her general health like? We need to know if there's any tissue inflammation—is she currently on antibiotics?

Back in 2005, surgery was already a stretch due to her heart issues. However, during her last checkup, she contracted shingles—it spread across her entire left back, armpit, and breast. It turned into one massive, horrific wound that stayed active externally for nearly a year. Since then, she’s been terrified of hospitals, fearing she'll catch something else given how weak her immune system is. Consequently, she's neglected the underlying condition by avoiding all medication. Now that things have taken a turn for the worse, we spoke with a hematologist at Mayo Clinic; his take was blunt—the condition has progressed too far, and she’s simply too old and frail to risk anything, especially with so many younger patients on the waiting list. As for tissue inflammation? I honestly don't know. What kind of test would even confirm that? She isn't taking any antibiotics at the moment.

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