Hey Guys, My name Is Gabe, I’m a 16 male from Pennsylvania. I was diagnosed with Loin Pain Hemoturria Syndrome about 2 months ago. It all started last November when I started having the worst lower back pain in the world. It was the worst pain I had ever felt. I told my mom about it thinking it was nothing so we let it go. After about 2 months of this I went to an Orthopedic doctor who thought I had a hairline fracture in my spine somewhere. I got a bone scan along with several other texts for the Orthopedic’s. Unfortunately I had no bone damage. After that appointment trying to figure out what to do next I started urinating dark brown, that night i was checked into the ER. I got to leave that night diagnosed with an UTI, wrong again. Then we were referred to an Urologist. By now it was about March or April, the entire time i had been in daily pain with no pills giving me any relief. The urologist then sent me to the nephrologist . Our first appointment she scheduled tests for me and sent me to the Chronic Pain Clinic in my area. The doc gave me a steroid injection of some kind. All it did is put me in worse pain. He sent me on my way until 2 weeks later. By now I had gotten annoyed because it wasn’t until late May that I got an appointment to see the nephrologist again . I had several tests done by her, one involving them putting a catheter down my neck to check the pressure levels on both sides of my back/ kidneys. That was the first test that had showed any indication there was something actually wrong with me. My doctor then called me back in to tell me the news. I then found out I had LPHS, I had no idea what that meant, and I didn’t care. She said she would talk to a cardiovascular Surgeon and give me a call back when she had everything figured out. By now it was about Early July. Between this time i had been given Vicodin and that did nothing for me, some sort of a muscle relaxer, and Tramadol. Soccer season was coming up my appointment with the surgeon was for late August, another month of waiting. Shortly before the appointment the Chronic Pain doctor gave me an anti-seizure medication called Gabapentin, apparently it was supposed to work. All that did was put me in a very bad mood. I had stopped taking it and I was just waiting for my appointment with the cardiovascular surgeon. The day came and I met with Doctor. Atnip of Hershey Medical Center, apparently this guy was one of the best. When I got there a resident nurse came in fascinated asking me so many questions about LPHS, it was like I was a science marvel. Then Doctor Atnip finally came in with another resident who just stared at me in awe. Then he told me all my options to possibly fix this, waiting was the first thing he said. Which was not an option for me. After just a year of this i had worn on me so much and I just need it to be done. He talked to me about doing some sort of bi-pas by taking part of a vein from my leg and bi passing the compressed vein of leaving my kidney. He was against putting a stent in the vein that needed to be fixed. So as of today September 18th I just got a vein mapping done to see if my veins would even work for the surgery. When the nurse said they would I felt some hope finally. Now Doctor. Atnip had talked to my nephrologist and they both feel this is the best option, and apparently due to my body weight and type this surgery had a good chance of success. After reading up on LPHS a bit i discovered what other patients were taking to manage pain, so on the 20th i have another pain appointment, hopefully to actually get something that works. The only thing that worries me is it seems like no one actually gets rid of this or fixes this. But I’m hoping for the best. If anyone has any advice of surgical experience, pain advice, anything i would be more than happy to hear.
Gabe,
Please email me I’d like to share stories.
[email protected]
Gabe – you can email me too. Be very careful about surgery. Research success rates. I live in British Columbia, Canada. I consulted the Head Transplant Surgeon for our Province. (= State in US) He was very honest with me about the surgery. He said that they experiment with these surgeries on pigs … but that they do not do this type of surgery on humans in our Province. Not Recommended. Yes, LPHS produces pain, but we have kidneys that do their chemical job in our body of processing blood. At that time I had just returned from the Cleveland Clinic because they have one of the best centres in the US for Urology/Nephrology. The doctors at the Cleveland Clinic were keen to do the surgery. And they gave me a success rate somewhere in the 70% range – it was either 70 or 75%. But … this was based at the time on 300 surgeries total! This is statistically an irrelevant number at that size! Outcomes can not be predicted until much larger numbers are studied … plus you have to ask …. for how long were the surgery patients followed up … did they have successful long term outcomes … because when you go into LPHS chat forums you will meet people online you will give you their stories of pain returning … mostly because the neurological pathways are so complicated and not yet understood. The pain is more than the kidney having problems – your brain & nerve pathways have been fired up and this is the most complicated part. I have also worked over the years with two doctors at OSU. This is “the” research centre for LPHS. You can contact Dr. Lee Herbert’s office to ask for their current research package on LPHS. It will give you the most accurate info & best practises for treatment. He does not recommend surgery. And just to sum up, my nephrologist works in partnership at the same hospital with the Urologist who is the Head Transplant Surgeon for our Province … so he keeps me aware of all best practises considered in Canada for LPHS. I try to see him every 2 yrs – He does not recommend surgery either. I was diagnosed with LPHS 12 years ago. My first symptoms appeared when I was 19 & started becoming very evident with the strain of pregnancy & raising children until I fell into a huge 2 year crisis. I have pain in both kidneys. The only way to truly confirm that you have LPHS is to have a biopsy. I had one done with the 2 doctors here in Canada I have mentioned. I then followed up by sending all my biopsy material to Dr. Hebert and Dr. Tibor Nadadsy. If they confirm you have LPHS – then you know you have LPHS. Lastly, I use Dr. Heberts name reluctantly online, because he is getting older & could be retired. He gets searched as the LPHS guru by patients in pain and, of course, it is hard now for him to help all. I think I was lucky because 12 years ago he would still respond directly, but I don’t know if he will now – and maybe he may have finally retired! But Dr. Nadasdy and his staff were also very helpful and his name is beside Dr. Heberts in all the research so they have a team that has studied LPHS. I hope this helps. I have finally found a drug treatment plan that enables me to live with dignity, not pain-free completely, but I manage better now. That is more private, and I would discuss in an email if you wish. Take Care – Gabe – Most of all … follow your GUT instincts! And never let a doctor get you down! They can do that surprisingly well for a care giver … you can leave an appointment pissed off, shamed, or more … just listen to your gut instincts for all your decisions. Susan
Hi Susan
My wife has the symptoms of LPHS and we are just learning about it – we also live in BC – would we be able to connect with you? If you could email me: [email protected] that would be great.
Dan
I was just diagnosed with this dreadful disease I have dealt with this pain for over a year every test imaginable I have had!! I was referred to OSU but the dr. is not excepting anymore patients !!! So now I am being being referred to Cleveland Clinic!!! I do not wish this on anyone!!! I just pray to god that my chidren or grandbabies get this!!!
I pray to god my children or grandbaies DONT get this!! It has taken over my life
I Dont wont my family to get this !!!! this has taken over my life!!!! Hoping to get some answers soon!!!
Hello everyone, there is an Extremely active support group called “Living With LPHS” on Facebook. New members suffering from LPHS join on almost a daily basis. It’s so comforting to talk to people from all over the world for ideas, support and encouragement. Good luck to everyone on this site!
Gabe, I’m a 36 year old male who has been living with this for five years. I, too, am from Pennsylvania (Bucks County, just north of Philadelphia). I’m very sorry that you have to suffer with this at such a young age. If you ever want someone to talk to, I’m available.
Also, Susan, you mentioned that you were on a medication regimen that was working. If you don’t mind, I would like to know your experience. Personally, I take 20 mg of Methadone 3 times a day, and 8 mg of Dilaudid 4 times a day. Unfortunately, as is the case with any pain medicine, I have developed a very high tolerance, and now even on those medications, I often am in too much pain to function, or even to sleep.
Either of you, as well as anyone else suffering from this that would like to contact me, can reach me at [email protected]. My greatest comfort is knowing that one day, I’ll be in a place with no more suffering, no more pain, no more sorrow, no more death, and God shall wipe away every tear from our eyes. Until that day, I pray for God’s grace and mercy for anyone dealing with this extremely difficult disease.
Hello Gabe, I too have LPHS and also struggled with the pain very much when I was your age & I am now 29. I just want to caution you about meds. PLEASE PLEASE PLEEEEASE be careful and do lots of research before starting pain meds. My nephrologist gave me methadone & said it was “the safest pain pill i could take” but I had no idea at that time that once you start methadone, you cannot just stop whenever you want. It isn’t a med that you can just take when in pain. Now, I have to take it whether I have pain or not just to keep from getting sick from withdrawal. Methadone is NOT the only pain med like this, so please be careful. You are so young with your entire beautiful life ahead of you…I don’t want to see anyone else fall into the same “trap” that I fell into. There is no easy fix for lphs. However, i can tell you what has worked for me and that is yoga, seeing a chiropractor, using a heating pad, NOT sleeping on my back, eating healthy/organic & taking extra vitamin D. Best of luck to you Gabe! Just hang in there, you can do this!! 😉
look into intrathecal pump implant .
Dear Gabe my mother has spinal stenosis and many other pain factors in her life I do not like when she is in pain because I cannot help her medically so in the mind I try to help her she has bad headaches I’m worrying about her ,doctors try to help, and they are genuine in sense sometimes I fear the doc because I’m not sure how to say things being uneducated? I want to help so my decisions are nurture her and be passive aggressive towards her feelings so I can help! I’m interested in my decisions in my life and I need them yes I am off topic and I’m sorry please forgive me! Todd?!