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Author Topic: Avascular Necrosis  (Read 949 times)
KatieV
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« on: November 13, 2018, 12:17:05 PM »

I was diagnosed with avascular necrosis almost 5 years ago due to the high-dose steroids used to treat my rejection.  The last couple years I've been in a holding pattern - some pain, mostly with more walking than usual.  Lately the pain has been getting worse, so I make an appointment with Ortho again.  That was a month ago and my pain has continued to worsen.  I still have *another* month to go until my appointment!

I have been near tears since waking up this morning, normally the pain gets worse throughout the day.  I'm not sure if I should head to Urgent Care or not - unsure if they will do anything.  Often, avascular necrosis doesn't show up on x-rays, only on a MRI anyway.

Any advice?  Anybody experienced avascular necrosis?
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March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
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Simon Dog
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« Reply #1 on: November 13, 2018, 03:36:43 PM »

I was given Prednisone for thrombocytopenia.  A year or three later, I developed AVN.   My x-ray showed "possible AVN, get MRI". MRI is the definitive diagnostic.   See if you can get your primary care MD to order an MRI and bring the disk to the ortho appointment (the MRI center should be able to give you a CD when you get the MRI).   This will make for a more efficient ortho visit - otherwise you will probably get "I'll order an MRI and see you in another 8 weeks".

The ortho quoted 8 weeks for the eval appointment.   I mentioned this to a doc I had seen at the same hospital and he threw his weight around and I got a call an hour later from ortho "what time tomorrow works for you?".

In my case, the cure was a hip replacement that worked out wonderfully.  I was lucky that they make the ceramic ball unit in my size, so I got one of those.

Surgery and recovery was almost completely painless (no pain relievers after leaving the hospital), but it took a while to get my mobility back.

The anterior approach is newer and less invasive; also fewer restrictions (no "don't cross your legs" requirement).   The hospital needs a Spanish Inquisition rack (a/k/a Hanna Table, http://www.mizuhosi.com/products/orthopedic-fracture-trauma/hana/) to yank your femur out of the socket and the surgeon needs training in this technique.  Do not accept "not appropriate for you" unless it comes from a surgeon who is trained and qualified in the anterior approach.  Some orthos are not trained in it and steer their patients to the older posterior approach (much more invasive).

If you are anuric due to ESRD, be sure to specify "No foley".  Also, make sure the hospital that does the work also has a good renal department.

My employer at the time offered a mail-in second opinion service.  I got a detailed report from an MD at Baylor in TX saying "very advanced case, total hip replacement absolutely indicated".  When the surgeon spoke to my wife after the job was done he asked "did your husband really walk in here?   I don't see how with the condition he was in".   I guess that's because nobody told me I couldn't walk.

The most urgent care is going to be able to do is prescribe a cane or walker and give pain meds, but they may decline on the later due to the holy jihad against opioids.

Cheer up - a hip replacement beats a failed transplant.
« Last Edit: November 14, 2018, 02:02:24 PM by Simon Dog » Logged
KatieV
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« Reply #2 on: November 14, 2018, 01:46:46 PM »

Cheer up - a hip replacement beats a failed transplant.

Well, my kidney transplant survived the rejection, but then got taken out by the BK virus.  I've been back on dialysis for almost 3.5 years.  I have my clinic appointment (on NxStage) on Friday and hope to get my Neph to throw his weight around.  But he doesn't seem like the type.  ??? 

Did you only get one hip replaced?  I have AVN in both, though from the pain, I believe my left is worse.  I am using a cane already.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Simon Dog
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« Reply #3 on: November 14, 2018, 02:01:45 PM »

Only had right hip replaced.  Left is fine ... for now.
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KatieV
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« Reply #4 on: November 16, 2018, 10:03:37 AM »

So I was worried that I was 15 minutes late to my clinic appointment this morning, but my doctor never showed up!  With the snow, the roads were a mess.  A semi jackknifed and the doctor was held up by that.

He apparently will be calling Ortho today.  The nurse said that he was surprised that they hadn't squeezed me in.
Logged

~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
KatieV
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« Reply #5 on: November 19, 2018, 11:37:30 AM »

Apparently, there are no appointments to be have until the middle of December, even if the doctor asks! 

My nephrologist is reaching out to my primary to order pain meds, even though I told him I can't take them.  I have to work (to pay bills & insurance) and have an hour drive to and from.  So he said I could try Ibuprofen (600 mg 2x/day) and Acetaminophen (1000 mg 3x/day) alternating since I don't have any working kidneys.  The dietician and nurse both recommended CBD oil, which I will try instead.  Anybody used them?  Derived from hemp, so no THC.

My grandparents ordered me an electric scooter, which should help a lot!  My company leases space in a large building and we are in the furthest corner from the door.  I literally have to walk the length and then width of the building.  The scooter breaks down into 4 manageable pieces, so it fits in the back seat of my truck, and then pops together in less than 2 minutes.  It was a very generous gift!  It will take a lot of stress off my hips.
Logged

~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Simon Dog
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« Reply #6 on: November 19, 2018, 02:17:41 PM »

Quote
My nephrologist is reaching out to my primary to order pain meds, even though I told him I can't take them.
Sounds like your neph is trying to avoid being profiled by the DEA.

My neph had no problem Rxing me Oxycodone 5mg #30 for AVN pain, though I only ended up taking one or two pills.
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kickingandscreaming
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« Reply #7 on: November 20, 2018, 04:08:11 AM »

Three friends of mine use CBD for pain.  One for Fibromyalgia and joint pain. The other for a bumb knee prior to surgery and the third uses it in lotion form on her arthritic hands.  Works for them.  They all get it through our local medical marijuana dispensary so the quality might be different than what you can get.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
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