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Thread: Help! LITHOTRIPSY or not???

  1. #1

    Help! LITHOTRIPSY or not???

    I am a C4/5 complete quad, nearly 34 years post. I have posted numerous times on this website since joining in 2002 I think it was. Here is my latest dilemma that I desperately & terribly need help with:

    I recently found out I have a kidney stone in my left kidney (8 mm which is about half an inch). I put my original "problem" out here on the community back in 2010 when my sediment/sludge began to increase when I was bedridden with a wound. Also, Proteus Mirabilis bacteria was back (after getting rid of it in 2006). My sediment/sludge kept getting worse so I finally had a CT scan done (after I could get out of bed from the bad wound I had) and found I had bladder stones. The last time I had large bladder stones removed was 2006. A déj* vu experience. I had my latest bladder stones removed on August 1, 2012. Before that my urologist put me on 10 days of IV antibiotics (probably gentamicin). Then removed the stones on August 1, 2012 and afterward we did a 10 day run of rinsing my bladder out with a gentamicin wash (directly into the bladder) daily to hopefully get rid of the PROTEUS MIRABILIS that was the culprit causing the sediment/sludge and stones. All 3 things didn't get rid of the Proteus Mirabilis. Now I know why but am at a crossroads as to what to do.

    My husband was still alive when I had my CT scan done for bladder stones, etc (please see this post of mine - http://sci.rutgers.edu/forum/showthr...=192810&page=2 with "Brinda41" being my nickname). Since then I have had to move to Pennsylvania and it took me many months through the winter to be able to get TO a urologist because I am in the middle of the sticks and it takes me 45 minutes to get to any "specialists." Like the SCI nurses have suggested here ... the urologist I saw back in May of this year in Scranton Pennsylvania (the closest biggest town almost an hour away) thought that a kidney stone might be present harboring PROTEUS MIRABILIS that DID come back. So I had a renal ultrasound done and results showed the kidney stone I spoke of in my first sentence here. After that he did not get back to me. I couldn't understand this and neither could my local primary care physician (who was not happy about them not getting back to me - since my PCP made the referral). I finally had to call the urologist's office myself (instead of them calling me after the renal ultrasound) but still did not get a return phone call for an entire week and my local PCP had to call the urologist office for me to get them to do their job (call me).
    This is all too common with many docs in many states. Rudeness is epidemic.

    I was finally called back by the urologist's nurse after my PCP called them (who has been very nice the two times I've talked to her prior to writing this). She told me that the doctor said that since the kidney stone was not obstructing anything he wasn't going to do anything about it. That is NOT what I went to him for! During the consultation I told him I was trying to get rid of the Proteus so I could get rid of the heavy sediment that keeps getting worse and filling up my catheter more and more. I told his nurse all this and she said she would take it back to the doctor (all of which is in my chart already because of my first consultation and what I went to him for) and it took her a week to do that. She said that I could have lithotripsy done. Ironically, my husband had lithotripsy done approximately a year before he passed away but for numerous larger kidney stones. And then they did not get them all. My husband did not have insurance so he was beyond not happy $15,000 later. Anyway...


    I have several concerns. I asked if I have the lithotripsy done whether my 8mm kidney stone would be broken up small enough so the leftover pieces would come out like sand through my catheter. She (the nurse) told me they couldn't guarantee how the stone would break up or how small the fragments would be and whether or not it would go through the catheter. So, they are leaving it up to me as to whether or not to have the lithotripsy done. Great! So I am worried about having it done.

    The urologist I had in Tucson Arizona (since 2006) gave him my history but that was then and ~now is now.~ The same urologist (in Tucson Arizona) used lithotripsy on my husband and he was told that the stones would break up like sand and they would pass through his ureters and his urethra and therefore evacuate them. That DID NOT happen for him. He kept waiting to see sand in his urine but it never appeared. One day he urinated out 2 BIG stones (one was an inch long and the other not far behind) that hurt him TERRIBLY followed by blood because they were so big. When he went to have the lithotripsy done the technologist and the surgeon said they were not going to go ahead with it if they could not see the stones and therefore crush all of them. They said they could see them so they went ahead with the procedure. Well, obviously that did not work.

    Scranton Pennsylvania (the closest big city I am near now) doesn't have a Hoyer lift either! But I could not use one of those that they DID have in Arizona when having my bladder stones removed because I needed a particular sling and lift that I have but it is not portable. So what I did on August 1, 2012 when I had my bladder stones removed was to elevate my power wheelchair, recline it and tilt it back and have a sheet under me which was used as a draw sheet to get me on the table and then back into the chair after the procedure was over. IF I decide to go ahead with the lithotripsy I will do that also.

    The urologist's nurse is also on the same page with me whereby kidney stones do not get smaller or remain the same... they grow. So I have to keep that in mind. I AM JUST SO TORN ON WHAT TO DO!

    SCI nurses advice or Dr. wise???

    Thanks in advance!

  2. #2
    First of all, not sure I would want to continue to work with this urologist due to their lack of follow through and neglect of patient contact and questions. If you can get a referral to another, and get the first urologist release of information document (signed by you) to send the ultrasound films and test results to the second urologist, and then proceed, if they agree, with the lithotripsy.

    It is true that there is no guarantee that a lithotripsy will completely eliminate your stone. Unfortunately the alternative with a kidney stone are to 1) insert a nephrostomy tube and try to dissolve the stone with chemicals (this can take several weeks, may require hospitalization for that time), or 2) open surgery of the kidney (not a small surgery).

    If the new urologist agrees that the stone can be treated by lithotripsy, I would attempt that first. If follow up ultrasounds do not show that the stone is broken up enough, then one or both of the other procedures can still be used.

    (KLD)

  3. #3
    Thanks for your reply!

    My PCP asked me if I wanted a 2nd referral and I declined [so far] since I've had to "Dr hop" numerous times for the reason mentioned in my post and other similar legitimate reasons over decades. It gets tiring (to say the VERY least). Now, I'm recovering from a 3+ yr Stage III to heal after many setbacks. i.e. going on roads causing "shearing" and opening the fragile, healed scar tissue. AZ roads are a dream compared to the NE roads and having to travel an hour each way for a 'specialist' or procedure is so hard and dangerous for me.

    My PCP's referral is to a hospital/clinic that takes 90 minutes to get to one way. Traveling 45 minutes on these roads to get to Scranton, PA was bad enough. I'm risking skin breakdown (even tilting back) every time I get on these roads. On Feb 2nd I had an appnt with my PCP (5 minutes away - literally) and the rough roads tore my skin open and took a month to heal.

    As for the other options (besides lithotripsy) - my stepdaughter (a BSRN nurse w/ a Biomedicine 4-yr degree too) had the 2nd procedure done you mentoned several years ago (inserting a nephrostomy tube and try to dissolve the stone with chemicals (this can take several weeks, may require hospitalization for that time). She said she'd NEVER have that done again it was so horrible and she went to school and worked at the hospital it was done at. She is fully able-bodied so me, a complete quad - factoring in AD, etc could be detrimental at best.

    I'm, without a doubt, not poo-pooing your suggestions! They are certainly valid. My situation is just more complicated and a referrals are scary as I've been through it so many times it's a nightmare. Yet true w/o exaggeration. I once asked my veterinarian in Tucson (a seasoned, angelic vet) if HE could give me a referral to a good PCP in town. His response? "I get asked that by my furry friend's owners at least once a week. The medical work ethic, etc has changed so much since Dave (Dave was my husband and my Vet's age at the time and also present at our dog's appnt - mid to late 50s) and I were in medical school. All my colleagues are now getting toward retirement age."

    My late husband and primary caregiver -- before his passing -- was not a doctor but had enough schooling, yrs of experience in the medical field, etc. He saved my life on numerous occasions during our marriage as a result of medical incompetence. From home care nurses to doctor's incompetent 'suggestions' on a myriad of occasions. So scary! Tis why I'm so skeptical, concerned and scared 33+ yrs as a complete quad.

    Not to mention my travel limitations since 2009/2010 after aquiring the wound of a century which started out very small but went OUT OF CONTROL after an incompetent home care RN measured my wound with a dirty measuring paper from her purse one day in late 2009. It was completely unexpected and we found out too late why my wound began slowly spreading. Too late to "prove" she infected it. When my husband saw it slowly crawling down my thigh after x-number of weeks he said "One thing would do that - bacteria. We should ask my PCP to have it cultured." We did. The results were "MRSA." One insect (nurse) ruined the rest of my life (fragile ischial scar tissue = easy shearing from going over bumps in my chair, traveling on roads, etc ).

    The last time I was "hospitalized" was in 1995 (getting a shunt put in which failed and then had to be revised) and my surgeon let CSF drain from the base of my brain for 2 weeks as I laid there those 2 weeks until I aquired meningitis! I wasn't w/ my husband at that time (prior to us meeting) so my family and myself felt helpless w/ each day a horrid one. This was in NYC. I thought I chose the 'best' neurosurgeon after 3 different consultations (one in Binghamton, NY, one in NYU and one in Brooklyn - the latter a supposed expert on syringomyelia with a sweet, smooth tongue and why I chose him). How wrong I was!

    After I went unconcious 2 weeks later (from a high fever from meningitis) he remarkably knew exactly what to do. Into surgery to close a burr hole he left open. He wanted me in a hospital near his office (right down the hall even) in Long Island College Hospital but then after his shunt revision he only sent in his residents when problems arose almost daily (bad AD episodes). When I went unconcious one day after 2 weeks of leaking CSF - my "Ex" finally yelled "Get the GD doctor in here NOW!" The neurosurgeon did and whisked me into surgery knowing exactly what to do (indicating he knew all along) and I was ok after that. He wanted me to lay there for observation - indefinitely - and I finally checked myself out of that near-tomb. I was 5-hours from home to have this "supposed" syringomyelia expert put 'his baby' of a shunt in (subarachnoid). Only much later did he admit he knew little about SCI patients as he stayed "above the border" (brain surgery) but never revealed/divulged that info to me, my Ex or my family during the consult!

    Ok, that gives you a glimpse into my medical incompetence experience and why hospitilizations scare the crap out of me. Many hospitalized quad friends of mine online over the years never came out alive. From pneumonia or other nosocomial infections.

    My situation is not simple or close to simple. I feel more vulnerable now w/o my husband who had experience IF I were hospitalized.

    *BIG SIGH*

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Then go with the doctor who never calls back.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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