Intro for new MN patient diagnosed with PN
Posted: Thu Mar 15, 2012 10:50 pm
Hello everyone! My name is Mel and I live just south of the Twin Cities in MN. I've had a very painful and busy 8 weeks but was recently diagnosed with PN by Dr. Antolak at his Edina clinic. I am nervous and hesitant on his diagnosis but I thought I would join the forum and ask some questions, as often patients are better resources than the doctors themselves. Normally I would write some whitty remarks, but I'm finding my liveliness has run out a bit 
My apologies if this is long, I find more is better than less at this point!
To give a little background about myself, I am 25 and have a quite extensive history with lower right quadrant pain. I was born with a hernia and an extra set of ureter tubes on both sides. I had both conditions repaired as a child through surgery and now have crossed trigonal reimplantation of both uterers (essentially each set was fused together in a Y formation and then pulled across the top of my bladder and reimplanted on the opposite sides of my bladder that the tube originate from). In 2007 I had multiple episodes of ovarian cysts, all of which ruptured. Due to continued pain I underwent a laproscopic surgery to look for endometriosis and though they did not find any they did remove a pooling of blood from underneath my cervix. A few years later my pain came back and I had multiple ER visits in which they found I had multiple kidney stones on my left and right side, though my right side was where the stones seemed to be stuck. Another year later I experienced kidney stones again but this time was admitted to the hospital under the care of Dr. Glesne with the Kidney Stone Institute. Because my ureters were stretched thin during the reimplantation process and there was an excess of scar tissue inside my right ureter, I was unable to pass the stones on my own and underwent surgery to remove them.
Most recently in January I began having lower right quadrant pain again with pain that radiated to my back. I also had frequent urination and painful/burning urination and noticed a tingling/pins and needles sensation on both of my sides when I laid down and tried to sleep. I have also been constipated though I have thought that was due to the narcotic pain meds I've been living on. My first step was seeing the folks at the Kidney Institute where they did a CT. They found no evidence of stones but the report showed L4 AND L5 pars defects with an improperly healed fracture to my L4 lamina with some sclerosis and hypertrophy. Because of my history I was referred to an OBGYN to consult about cysts/endo again. The pain worsened after his pelvic exam and I was forced to begin taking short term disability from work. We opted to do a laproscopic surgery again to rule out endo/PID and make sure there were no cysts or torsion happening with my tubes/uterus. The surgery was uneventful and I was sent home. I underwent a renogram with the Kidney Institute to double check on kidney function, but that came back normal as well. We did a lumbar MRI which showed no nerve compressions, only normal arthritic changes. The only GI workup thats been done is various blood testing, though I plan on keeping my appts with MN GI this week and had an additional CT with contrast done to double check appendix/pancreas/etc. I also have seen a neurologist who sent me home with a pat on the shoulder and a confident statement that there was nothing neurologically wrong with me.
My primary care physician referred me to Dr. Antolak (when my doc. ran out of ideas) and I was able to get in two days ago to see him due to a cancellation. I felt as if he already had decided his diagnosis before he met me. I was a gymnast for 14 years and did recently start a modern dance class that I could see aggravating my condition, if its what I really have so that information made sense to him. I told him about my symptoms, though my main problem has been abdominal pain, he continued his examination thinking I had PN. He did the spikey pinwheel test (no idea what that instrument is called) and found that I have sharp pain bilaterally along my T11 and T12 (basically around my hip bones). He did his pin prick test and I was almost jumped off the table when he tested my labia and clitoris, though I did not feel much pain when the area around the anus was examined. The heat test that he did came with normal results. He also did the Pudendal Nerve Motor Latency Test through my rectum (even though I requested that happened vaginally,he seemed to have forgotten the request in the minute it took him to hook up his machine). That test came back abnormal. I was very offput by his bedside manner and felt as if he was not actually listening to me and seemed frustrated at my questions. He offered to do some local nerve blocks and I ended up having 8 injections in my abdomen and pelvis, though if he had taken a moment to explain to me how painful they wouldve been with only 4 hours of some relief, then I would not have done so. I have now been in awful pain that not even my pain meds are helping with since the injections and have opted to stay in bed mostly as sitting does seem to irritate the pain. He sent me home with a self-care kit (that he seemed to have written himself, with plenty of typos!) and directions to get his series of 3 injections in my back in the coming months. In reading about him on the forum, it seems as if not many of you trust him and his history with Mayo seems a bit sketchy to me. I am becoming weary of the diagnosis and am not ready to change my entire lifestyle habits and request special equipment from my work until I get a second opinion. I called and told them that the procedures and testing were too overwhelming for me the other day and I'm not comfortable not knowing exactly why he believes this is my diagnosis. Because he is such a busy man and "people come from all over the world to see him", I am on a long waiting list to hear back from him. It bothers me that I saw him, he diagnosed, and then left as if I understood what the diagnosis meant for me in my life. I'm not even sure if I understand if this can be cured or not, or if I'll ever be allowed to sit again
I am frustrated that there is not more information about this condition and regulated/studied treatment plans available, so I appreciate all of the activity and support I've seen here on the forum thus far. If any of you have words of advice or know of anyone else in the MN area, including PT folks that I could visit that would be great. I do have appt requests in progress with Mayo Clinic and the U of M Medical Center (per referral from the previous neurologist). One of my main questions is what other conditions/disorders should I definitely get ruled about before accepting the diagnosis of PN? Again, my apologies for the long post, I really appreciate anyone who took the time to read this and to help me!! I will have more questions soon, I'm just a bit worn out to think of all of them now. Is there any group in MN that meets to talk about PN?
My apologies if this is long, I find more is better than less at this point!To give a little background about myself, I am 25 and have a quite extensive history with lower right quadrant pain. I was born with a hernia and an extra set of ureter tubes on both sides. I had both conditions repaired as a child through surgery and now have crossed trigonal reimplantation of both uterers (essentially each set was fused together in a Y formation and then pulled across the top of my bladder and reimplanted on the opposite sides of my bladder that the tube originate from). In 2007 I had multiple episodes of ovarian cysts, all of which ruptured. Due to continued pain I underwent a laproscopic surgery to look for endometriosis and though they did not find any they did remove a pooling of blood from underneath my cervix. A few years later my pain came back and I had multiple ER visits in which they found I had multiple kidney stones on my left and right side, though my right side was where the stones seemed to be stuck. Another year later I experienced kidney stones again but this time was admitted to the hospital under the care of Dr. Glesne with the Kidney Stone Institute. Because my ureters were stretched thin during the reimplantation process and there was an excess of scar tissue inside my right ureter, I was unable to pass the stones on my own and underwent surgery to remove them.
Most recently in January I began having lower right quadrant pain again with pain that radiated to my back. I also had frequent urination and painful/burning urination and noticed a tingling/pins and needles sensation on both of my sides when I laid down and tried to sleep. I have also been constipated though I have thought that was due to the narcotic pain meds I've been living on. My first step was seeing the folks at the Kidney Institute where they did a CT. They found no evidence of stones but the report showed L4 AND L5 pars defects with an improperly healed fracture to my L4 lamina with some sclerosis and hypertrophy. Because of my history I was referred to an OBGYN to consult about cysts/endo again. The pain worsened after his pelvic exam and I was forced to begin taking short term disability from work. We opted to do a laproscopic surgery again to rule out endo/PID and make sure there were no cysts or torsion happening with my tubes/uterus. The surgery was uneventful and I was sent home. I underwent a renogram with the Kidney Institute to double check on kidney function, but that came back normal as well. We did a lumbar MRI which showed no nerve compressions, only normal arthritic changes. The only GI workup thats been done is various blood testing, though I plan on keeping my appts with MN GI this week and had an additional CT with contrast done to double check appendix/pancreas/etc. I also have seen a neurologist who sent me home with a pat on the shoulder and a confident statement that there was nothing neurologically wrong with me.
My primary care physician referred me to Dr. Antolak (when my doc. ran out of ideas) and I was able to get in two days ago to see him due to a cancellation. I felt as if he already had decided his diagnosis before he met me. I was a gymnast for 14 years and did recently start a modern dance class that I could see aggravating my condition, if its what I really have so that information made sense to him. I told him about my symptoms, though my main problem has been abdominal pain, he continued his examination thinking I had PN. He did the spikey pinwheel test (no idea what that instrument is called) and found that I have sharp pain bilaterally along my T11 and T12 (basically around my hip bones). He did his pin prick test and I was almost jumped off the table when he tested my labia and clitoris, though I did not feel much pain when the area around the anus was examined. The heat test that he did came with normal results. He also did the Pudendal Nerve Motor Latency Test through my rectum (even though I requested that happened vaginally,he seemed to have forgotten the request in the minute it took him to hook up his machine). That test came back abnormal. I was very offput by his bedside manner and felt as if he was not actually listening to me and seemed frustrated at my questions. He offered to do some local nerve blocks and I ended up having 8 injections in my abdomen and pelvis, though if he had taken a moment to explain to me how painful they wouldve been with only 4 hours of some relief, then I would not have done so. I have now been in awful pain that not even my pain meds are helping with since the injections and have opted to stay in bed mostly as sitting does seem to irritate the pain. He sent me home with a self-care kit (that he seemed to have written himself, with plenty of typos!) and directions to get his series of 3 injections in my back in the coming months. In reading about him on the forum, it seems as if not many of you trust him and his history with Mayo seems a bit sketchy to me. I am becoming weary of the diagnosis and am not ready to change my entire lifestyle habits and request special equipment from my work until I get a second opinion. I called and told them that the procedures and testing were too overwhelming for me the other day and I'm not comfortable not knowing exactly why he believes this is my diagnosis. Because he is such a busy man and "people come from all over the world to see him", I am on a long waiting list to hear back from him. It bothers me that I saw him, he diagnosed, and then left as if I understood what the diagnosis meant for me in my life. I'm not even sure if I understand if this can be cured or not, or if I'll ever be allowed to sit again
I am frustrated that there is not more information about this condition and regulated/studied treatment plans available, so I appreciate all of the activity and support I've seen here on the forum thus far. If any of you have words of advice or know of anyone else in the MN area, including PT folks that I could visit that would be great. I do have appt requests in progress with Mayo Clinic and the U of M Medical Center (per referral from the previous neurologist). One of my main questions is what other conditions/disorders should I definitely get ruled about before accepting the diagnosis of PN? Again, my apologies for the long post, I really appreciate anyone who took the time to read this and to help me!! I will have more questions soon, I'm just a bit worn out to think of all of them now. Is there any group in MN that meets to talk about PN?
they only removed one polyp and are doing a biopsy so I should know more later this week!
) and chat with some of you in person, its a bit easier for me that way. Please feel free to send me a PM!