Hi Ms. Trudy,
After 2+ years I am finally close to a diagnosis/cause of my neurogenic bladder. In March, I began experiencing numbness and tingling down my right leg plus a deep groin pain. I also had an obvious leg length discrepancy that I was not born with. These symptoms were new and in addition to my already diagnosed neurogenic bladder.
My story is very long as I have been to many doctors, most of whom told me they have never seen anything like this. I have also seen many doctors that told me they could not help me and wished me luck.
Through all of this, I’ve learned many very important lessons when navigating the medical world:
(1) always trust your instinct because you know your body best;
(2) never let the doctor convince you that you are imagining things, being overly dramatic, or aren’t feeling what you know you are feeling;
(3) always get a copy of your records, especially test results/reports;
(4) be your #1 advocate and do your research;
(5) always get multiple opinions; and
(6) never give up!
As I mentioned, my story is very long and has many twists and turns so I’ll fast forward to the future and get to the diagnosis. I’ve been diagnosed with a very rare arachnoid or Tarlov cyst that is sitting on my spinal cord at the S3, the part of the sacrum responsible for the parasympathetic nerves that control the bladder.
The cyst is approximately 3 inches long spanning from the S2 to the S4. I say it is either arachnoid or Tarlov’s because I have two different opinions from two different radiologists as to what type of cyst it is. I am still in the process of seeing specialists to determine the exact type. These types of cysts cause a wide variety of problems from bladder issues to radicular pain and can cause permanent nerve damage if not surgically excised.
The only reason this cyst was finally discovered was because an Orthopaedic Surgeon (OS) that I went to asking about my leg length discrepancy and groin pain (I thought they were related symptoms) ordered me a neurogram (at my request) which is a type of MRI and a nerve conduction study. To get the nerve conduction study, I went back to my regular neurologist. The study was performed and indicated radicular nerve pain on the lower right side (down my leg) of my body.
Now that I had nerve pain, my neurologist was more interested in my case than he was when I first came to his office only presenting with neurogenic bladder. Now that I had his attention, I explained all of my symptoms and showed the doctor the difference in my legs. After hearing my story, he ordered an MRI of my sacrum as he thought “something might be hiding in my sacrum.” Sure enough something was: the cyst!
To make matters worse and more interesting, the cyst did not explain the leg length discrepancy or the deep groin pain. I had been to several OS and a Physiatrist about these symptoms; all of them said nothing was wrong with me despite the fact that they measured my legs and could tell they were unequal (there’s about a 1.5 inch difference between the right and left leg), they could see my right leg turning inward and I had an MRI of my pelvis (the neurogram the first OS ordered) that indicated something could be wrong with my hip (the radiologist couldn’t say for sure what/if something was wrong because the MRI was designated for the pelvis/nerves and not the hip).
Thank God for my neurologist because he was the only doctor that would listen to me about the groin pain and leg length discrepancy and the only doctor that ordered me an MRI to look specifically at my right hip. In addition to the cyst, the MRI revealed that I have Grade III chondromalacia and a labral tear in the right hip joint. This diagnosis explained the groin pain I was having and the leg length discrepancy.
So where am I now? Well, I am looking at two surgeries, one to repair my hip (I may need a total hip replacement -still seeing OS to determine what to do) and the other to remove the cyst. Luckily the hip issue is common so it is an easy fix. The cyst on the other hand has proven more difficult and has taken me to a whole new realm of the medical world -what I like to call the Super Specialty Specialist realm.
This is the realm of doctors who are so specialized that they: (1) usually don’t take insurance and (2) will only see you if they are “interested” in your case. I say “interested” because that is what my neurologist always says. He says that with rare diseases, you have to find a doctor that is “interested” in both your disease and in helping you specifically.
So that is where I am at right now: trying to find a doctor who is interested and who is willing to help me. My neuro did refer me to a Super Specialized neurologist at Johns Hopkins, Dr. Robert Gerwin, who is supposed to help with coordinating my care for both the hip and the cyst. I need a coordinator because the doctors have to be sure what symptoms are caused by my hip and what are caused by the cyst. I believe this is to justify the spine surgery because the spine surgery is risky due to nerve roots that may be tethered or entangled with the cyst.
I’ve called Gerwin’s office and like the rookie I am in navigating the Super Specialized Specialist realm, tried to make an appointment to see him. I was told that he would not consider seeing me until I sent him all of medical records and test results. I’ve sent my records to his office and am now crossing my fingers that he will be “interested” in my case and willing to help me. He is just the first step though. I still have to find a neurosurgeon that will be “interested” and willing to help me.
So that’s the short version of my story. I wanted to send you an update because I hope that my story can help someone else. I also wanted to share because many doctors tried to make me feel like everything was in my head. I was also turned away by many doctors.
Having an issue like neurogenic bowel or bladder is frustrating enough without having doctors that either won’t help you because they aren’t interested in your case or dismiss you as delusional or whiny because they can’t solve your problem in fifteen minutes.
Hopefully my story can help motivate those that may be struggling to keep pushing for a diagnosis or help someone who may have neurogenic bladder/bowel know that there are other diagnosis out there besides MS (I heard on more than one occasion that I either had MS or nothing was really wrong with me).
I appreciate you taking the time to listen to my story and help those of us suffering with this often irritating disability. The community you foster through your blog is very helpful especially when it feels like nobody else on this earth understands what you’re going through.
Keep on keepin’ on
Many Thanks!!
This sent sometime later… We are so happy for Jennifer.
I have been recovering from major surgery related to my neurogenic bladder condition: meningeal diverticula cyst. Please note, the condition on record may have been Tarlov Cyst but this was changed to meningeal diverticula in the last couple of months by my neurosurgeon.