Had MRI Today. Waiting for results.

Posted , 11 users are following.

Hi John,Ross, Mike, Jimjames, and all, 

Finally went to UCSF and had a 3T MRI today. Fairly uncomfortable with the endorectal coil but it is now done. I told them to send the results to Dr. K. After checking with Dr. K., I refused the contrast media, as he says he does not need it and it's not exactly health food! Have an appointment this Friday with my doc at UC to go over results and options. They keep trying to talk me into a TURP, but I will not go for that. Will update when I get the results. Best to all of you and thanks for your support.

Fred  

2 likes, 39 replies

39 Replies

  • Posted

    Hi Fred,

    Good diagnostics leads to appropriate treatment which leads to best chance for good outcome! Best of luck.

    Pete

  • Posted

    Doctor K will honestly show and tell you what he feels his results will be and just how he will do it before he agrees to do the FLA. He will tell someone that another treatment is best if he sees that in the MRI and he has done so several times. This is why he requires a potential patient to provide a 3T-MRI before he will schedule them. With that MRI, he will show you the stricture causing the issue and how and where he will remove it. This type of communication is what assured me of no sexual side effects and convinced me to move forward with FLA. No one else offered this in all the other options I looked at.

    Glad you are finding the direction that will allow you the relief we received with FLA.  Dr. Karamainian  is very comfortable and much more experienced now with the many procedures he has done in the last year for BPH. It is so much more straight forward than the FLA done for PCa which has been done for many years.

    I am positive, they could not pay me to do the TURP. It is just too much in every way for me. Too much blood, too much recovery, too much living with those side effects. Though it does work if that is what one wants. And it is readily called the "Gold Standard" by the the guys who sell it. But strangely enough it seems they would never have the procedure themselves if you get them to answer honestly?

    Good Luck Fred and please stay in touch as we are always here for support no matter what way you go.

    Also, Houston is back to normal for the most part which is great news. 

     

    • Posted

      I'm a bit confused by your use of "stricture," since a urinary tract stricture is essentially scar tissue caused by infections, passage of kidney stones or instruments.  Are you referring to the obstruction associated with BPH, and the enlarged prostate pressing on the urethra as it passes through the prostate?

    • Posted

      Thanks for your helpful and supportive post. Yes, I was glad to hear that Dr. K did not sustain too much damage in the storm and I am looking forward to hearing from him after he reviews the CD I'm sending. Will update then.

      Very best wishes,

       

    • Posted

      Sorry for the confusion. In direct answer to your question, YES that is the reference meant in that use.

      Stricture: An abnormal narrowing of a body passage, especially a tube or a canal.

      Urethral stricture may be caused by swelling or scar tissue from surgery. It can also occur after a  injury or disease such as Benign prostatic hyperplasia (BPH).

      The manic cell reproduction that takes place in the BPH condition is what pinches the urethra. This reproduction is actually the a 2-1 reproduction and continues to double with each daughter cell produced at an exponential pace. Hence you wind up with a prostate like mine, the size of a tennis ball. Those cells that are reproducing next to the urethra cause the  problem with urination which we are all too familiar with. When those cells are removed during FLA up to and within the tolerance of 1 ml of the urethra the flow restriction is alleviated.  

      Again, sorry the choice of words was somewhat confusing.

    • Posted

      Glen, the same is true in a lot of cases with the median lobe growth issue protruding and pushing up into the bladder and causing retention. This condition can be seen on the MRI and can be address and treated by the doctor who knows what he is doing with the laser in that median lobe. I was shown mine before the procedure then I was shown the "after" MRI with the bladder being in a relaxed shape after the tissue removal of the FLA..

    • Posted

      I apparently had a doctor who didn't know what he was doing when he created a channel in my overgrown median lobe.  While employing a Greenlight laser, he somehow damaged the urethra in the vicinity of the sphincter and outward, rendering me incontinent since that procedure over 18 months ago.  I've found these particular strictures call sphincter strictures.  

    • Posted

      Well I am so sad and sorry to hear that. This kind of stuff make we go postal I just want to find a uro and hit him in the mouth.
  • Posted

    Hi Light, Is there another option other than with endorectal coil, like lap coil, for 3T MRI ? Thanks. Hank

    • Posted

      Hi Hank,

      I'm not an expert on this, but I understand that there is a pelvic coil that is just placed on your abdomen as an alternative. Also, you can have the MRI without a coil at all. My information is that it all has to do with image resolution. Some people even say that the endorectal coil results in a distorted image in some cases. I had requested a pelvic coil. The doctor who wrote the order for my MRI had his nurse investigate and she called me to say they don't really use the pelvic coil at UC. When I went for the test, I asked the techs and they seemed to think resolution would be far superior with the endorectal coil. Given I had made a big issue out of the contrast medium, I decided the coil was negotiable. Seemed to me it would not cause permanent health problems, but just 45 minutes of discomfort. It did hurt quite a bit when they inserted it. If you go to Dr. Sperling's website, he has a statement about why he does not use an endorectal coil. It basically says he can get good imagery without it and he sees no reason to subject his patients to it. A pretty good sales pitch,in my estimation! Overall, I would say it was unpleasant, but not excruciating.    

    • Posted

      I am going to see a UCSD uro tomorrow, planning to ask for a 3t MRI. What is the issue with the contrast medium, BTW ? Thanks again. Hank
    • Posted

      Hi Hank,

      You can do an internet search for adverse effects of mri contrast media and there's a lot of information available. I'm not an expert, however there are minor side effects such as headache, nausea, dizziness, more serious side effects, such as kidney damage or allergic reactions, and long-lasting issues such as retention of a certain amount of the contrast medium in bones and/or brain. It's a personal choice to make on the basis of benefit vs. potential cost. The docs I talked with said they could get a clear enough image without it so I was happy to be able to bypass the potential (in my estimation) negative health effects.

      Good luck with your appointment tomorrow! 

    • Posted

      Hi Light, you did mention that you sent the MRI result to Dr K. What else do you need to send him for FLA , like uroflow or urodynamic results ? Thanks. Hank
    • Posted

      Hank, there are 2 types of coils I would suggest you have the coil. The contrast is good if you have not had it in the passed. I had it 4 Times in a year and did not have an issue. Dr. K would tell you that the prostate MRI with contrast only enhances the quality about 15- 20 percent over the no contrast. Again if this is your initial and first one it should not be an issue. But if it consensus you, call Dr. K and discuss it to help you decide. 

      Pelvic coils are are simple as they just lay them on top of you. But they are sometimes harder to fined. Endorectal coils are inserted in the rectum for about a 30 minute time frame. They are not large about the size of a small cigar and half the length. I have had both. Prefer the pelvic but had no issue or problem with in rectal coil. Got to have the coil. Contrast is up to you and doctor K. If I can help you with more info just pm or call me tomorrow. I am around all day if you need to discuss. I will give you details if you want them. Good luck, John.

    • Posted

      Thanks John. What else do I need besides the MRI ? Hank
    • Posted

      Hank, the only other thing I had was a PSA and Free PSA blood test score but that was not needed for Dr. K to show me the dynamics of the issue that I had. I Urodynamic flow study is done by some also some get an ultra sound of the bladder to check again the retention. The MRI will also show that retention and will show bladder wall tribeculaton. The MRI will also give the data need to calculate the size of the prostate. I feel the MRI is the most important as it shows the gland and organ. i also think the important thing is who is reading the film and you have that covered.

      I never had a biopsy and that was what started my entire journey. I did not want one and started looking for another way. I first learned what a Focal laser biopsy was. Then when I had my MRI to see if there was anything to biopsy, I sent it to 4 different Interventional Radiologist who all agreed that, though I had a 125 cc prostate, I did not have any cancer. My PSA was 5.7 and my Urologist really want to do the random biopsy. I told him no and we don't speak anymore. 

    • Posted

      John, last year I went to see a uro because a scan showed I had retention, 250ml. He immediately suggested TURP, no exam no test. I said I'll think about it. So he gave me DRE, said he felt a nodule, and suggested biopsy. Again, I said I'll think about it, but like you, I did not return.  😀 This year, I asked to see another uro for a second opinion on the nodule. I think most likely it will be confirmed, especially since both uros are in the same medical group. Either way, I will ask for an MRI and go from there. No blind biopsy for me.

      I would like to send the MRI to Dr K to have his opinion on my chances with FLA.  I am a little concerned that maybe my bladder is the main culprit. Thanks again. Hank

    • Posted

      Yep, same story here. My Uro did the DRE and said we need a biopsy as he thought he felt something, and you may have cancer was his comment. I said no to the biopsy as it is 12 needles in a random fashion and I felt there had to be a better way. The MRI was my way. There was a dark suspicious prostate spot on my MRI so I sent it out to all four doctors for multiple responses;  but all four IR's said not cancer but active surveillance was needed. When I had the FLA they removed the dark suspicious spot so I felt like I got a "twofer" or BOGO (buy one get one free) type of deal on that.

      If Dr. K thinks you need a 12 needle blind biopsy he will tell you so. If he thinks you need a focal laser biopsy he will tell you so.  If you get the 12 needle blind biopsy before the MRI you will have to wait about two months for the healing and bleeding to stop from the biopsy and for the gland to clear up enough for the MRI. I suggest you start with the MRI and see what it says. Those 12 needle biopsies only cover about 65% of the Gland at best and they are very random in there application.

      On Retention, Your bladder could be an issue. I also had retention but did not even realize it until Dr. K showed me the MRI and the small mountain of tissue pushing up into my bladder. This mountain caused a valley and thereby an amount of retention. Once the mountain was removed the valley was also gone and so was my retention. Because of this condition I had developed a small amount of Tribeculation which is a hardening of the bladder wall. That has improved.  This is not how it works for everyone but this was my case and the MRI showed that.

      JimJames is the smartest guy around on retention. Though I do not want to live on the self Cath regiment  he suggests, I know it is needed for some people. Again, I would trust Dr. K's opinion on that as he will be honest about it.

      Another guy who had tremendous success with the FLA was Ross and he was at full  100% retention and on a foley Cath for several weeks prior to deciding on the FLA. I can put you in contact with him if you have interest. His case was very different than my but even more successful.

       The question is what is causing the retention. Uros don't have a clue let alone an honest answer.

      So many of them are like a bunch of birds screaming Turp, Turp, Turp. 

      I think it is better to look and see if you can determine what you are dealing with.

    • Posted

      Hi John, here is my uro visit summary:

      1) Good news re the nodule. The new uro said he can not be certain what he felt was a nodule, just a little tight feeling. He also said that if he were me, he would not worry about it.

      2) Bad news : He would not order an MRI for me. He actually said that it's not how it works, getting an MRI without a biopsy. He referred me to the cancer center, saying that they  probably won't do it either.

      3) I ask him how I can find out my prostate size and if I have median lobe. He said the only way is if he does urolift on me.

      Other than that, he was much more helpful than the last uro.

      I have to think what to do next. Thanks for your help.

      Hank

    • Posted

      I can't tell you what to do. I can only tell you what I did and what I would do. Dr. Karamanian has many times and can order an MRI for you after you find a location that has a 3 TMRI machine. Sounds to me like you found one?

      If you call him, explain your situation, ( that you need an order placed as your Uro will not do it) he will give you his opinion first then he will help you with an order if he thinks that is the way to go. You can tell him where the MRI can be done in your area, and then he will call and give them and order for the MRI. 

      This is what I did, its what Ross did and Victor and MikeSkier to the best of my memory. It is hard to get a Urologists to help us on this area as they don't make the money if you do an FLA. And, I know they are wonderful people but they really only care about the money. 

      My Uro completely refused to help me. So I found a pelvic coil on a Seimens brand 3 T-MRI machine at Baylor Hospital in Dallas. Then, I had Dr. K give the order to Baylor by fax or email and then when that MRI was done, I left Baylor's office with a copy of the CD and I sent it to Houston and he read it and also looked at the report the radiologist made when he did the MRI at Baylor. That guy's report is on the CD with the films. 

      Hank, I still suggest that you should have these discussions with Dr. Karamanian. But, I know your frustration with this situation. If the Uro cannot even tell you how big your prostate is, let alone what is causing your urethra to be pinched off or the condition of your bladder, what does he want to do? Just make a shot in the dark with a procedure and hope you get some help? That is crazy logic. I is obvious that you getting some help with BPH and your well being is not his motive. But he will take that money and give it a try!!

      With the MRI it is right in front of your face on the screen. Then you can decide. Dr. K will not try to talk you into anything. You will see the situation, you will know what you are dealing with. Then you can decide what you want to do to try to change the situation. 

      This sure does make me mad at the urology industry. Once again. I hope some of this helps you but you do have control of this and it is totally you decision even though I know it does not feel like it sometimes.

    • Posted

      "If the Uro cannot even tell you how big your prostate is, let alone what is causing your urethra to be pinched off or the condition of your bladder, what does he want to do? Just make a shot in the dark with a procedure and hope you get some help? That is crazy logic. I is obvious that you getting some help with BPH and your well being is not his motive. But he will take that money and give it a try!!

      With the MRI it is right in front of your face on the screen. Then you can decide. Dr. K will not try to talk you into anything. You will see the situation, you will know what you are dealing with. Then you can decide what you want to do to try to change the situation. "

      Seconded!

      The fact is, a patient must be their own advocate in seeking appropriate care. What that uro told Hank is despicable. 

    • Posted

      Thanks John and Pete. Now I realize that the uro, knowing that I did not like TURP, was pushing Urolift on me. He'll give me everything I want, if I let him do it. Looking at the exit printout, I was already scheduled for a procedure at  1PM, 2 weeks from now. No clear mention that it is Urolift or what but it was made without my knowledge, LOL. I will have to call to cancel it. 

      Yes, it is sad but I will not have any procedure until I know more about my bladder and prostate so I can make the right decision. Anh the uro will not give me anything until I have a procedure, blindly.

      When you had you MRI with Dr. K order, did your insurance cover it ? If not, how much did it cost ?

      Hank

    • Posted

      Hank, my insurance did not cover it, however the imaging center had a discounted cash payment price which I paid, $1000 or so as I recall. YMMV
    • Posted

      Thanks Pete. Hmmm, $1000 is not too bad. However, if I go to my in-network Cancer Center and haggle with them about having MRI first, before I decide on any biopsy, I might be able to avoid this fee. Even if I can convince them, one potential problem is that they probably will not send a copy of the MRI to Dr. K or give me a DVD copy. Hank
    • Posted

      Dr k ordered and blue cross blue shield my insurance paid for it.
    • Posted

      Did you have it pre-approved ? Or did  you submit claim afterward ? I have Molina Health. Hank
    • Posted

      Gave my insurance information to Baylor. the code used by the order was covered and Baylor pre verified with BCBS. i think it is all in the code used by the doctor ordering the MRI but not sure.
    • Posted

      Hank, sent an email to Dr. K's office and I verified that they will help you order you at MRI and do it at a location that is near you. There is no charge for them doing this and helping you. Again, if you call and talk to Dr. K on Monday he will gladly help you and again he will want no money to help you or look at your MRI and tell you the truth. 

    • Posted

      Yes, a pelvic coil placed over the abdomen is an option. My 3TMRI was doing using that method.
    • Posted

      Re: MRI w/o biopsy. That's really strange. One of the main reasons to get an MRI is to see if a biopsy might be needed. That is the route I chose, and my uro doc was completely on board with it.

    • Posted

      Hank, The MRI results belong to you. My understanding is that they must give you a copy.
    • Posted

      Thanks Rich. I asked my uro for an MRI but he said no. He did not know but the main reason for the MRI was to send to Dr K to get his say on my prostate + bladder condition, to see how good I am a candidate for FLA. 

      Now I still have a choice getting the MRI with an order from Dr K. This way I will have to pay for it, about $US 1,000, which I am not ready. It's near year end now. Next year, I'll try again with new uro or even with new insurance.

      Hank

    • Posted

      John: "Dr k ordered and blue cross blue shield my insurance paid for it."

      Hi John, what type of BC/BS insurance do you have ? HMO or PPO ? Gold, silver, or bronze ? Which type is best to get MRI and FLA ? I am in the process of selecting insurance for 2018.

             "Gave my insurance information to Baylor. the code used by the order was covered and Baylor pre verified with BCBS."

      What/who is Baylor ?

       Thanks. Hank

    • Posted

      Hank, I had Dr. K order my MRI. You can do this also if you need one and don't want to wait on your doctor plus he need not know if you prefer that. They will code the MRI needed reason so the insurance should cover it if you have regular coverage or Medicare.

      Baylor is a major hospital system in Dallas. I live far North of Dallas but it is the largest big city to me. I was on the outs with my uro at the time. All he wanted to do was stick needles in my prostate and I said no way. But at that time I needed to know that I had no cancer and what was the size my prostate? Remember this was in the beginning of my BPH journey. So I found out that Baylor at the Tom Landry Imagining Center in Dallas had a 3TMRI and used a pelvic coil which was my preference.

      Then with no URO support to call in the order in for me, I had Donnie Sartin RN who was at that time with UTMB in Houston call in the order for me so Dr. K could evaluate it for cancer first and then for the BPH issues. DR. K was still working part time at UTMB.  Donnie is now full time with Dr. K's prostate clinic at his office in Houston. There was no charge for this with Dr. K and no commitment on my part for any treatment because he does not charge for this and it was to evaluate where I was at the time. I was concerned, Did I have cancer? Was I even a candidate for FLA or Focal laser biopsy? That was what I wanted to know.  Then I would figure out what to do from there.

      After Baylor received the order by email from Dr. K they called me to set up the appointment time and ask for my insurance. At that time I told them I wanted to know about my coverage. I told them I had Blue Cross Blue Shield PPO in a Health Saving Plan (HSA) from work and here is my Group and Policy number. (I think just the PPO is all the might apply and not the HSA part. I don't know about HMO but they should work also.)  When I talked with BCBS said yes, if your deductible with the plan is paid up you are covered. That was the case at the time. That was the pre-qualifying procedure and it was simple at the time. 

      When I did my second 3TMRI a year later, I was then on Medicare, NO MORE BCBS and it was also covered then by Medicare. If it had not been covered, I would have negotiated a cash price with either Baylor or there are many private imagining centers in town and they will cut prices for business all the time. I don't need them reading it as I had Dr. K who knew more about it anyway. So my point is that  the hospitals and private Imaging center do deals for cash payments. I did not need that as mine two were covered. You just need to find the 3TMRI locations in your area and you do prefer a pelvic coil. Call Dr. K's office tell them you want the MRI read and ask if because of your Uro relationship situation, can they please help you with an order for the 3 TMRI. You can do this and not involve or upset the Uro if you want to. That is what I did as I wanted all my options open to me at that time.

      Does this help and answer your questions about it? Just let me know if you need anything else. And Good Luck.

    • Posted

      Thanks John. I am going to contact my local MRI center. It's 3T MRI, right ? With or w/o contrast ?

      I am trying to get insurance to pay for it, or at least, much of it.

      I have HMO. It would be free if ordered by a doctor in my primary medical group.

      Hank

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