Undiagnosed rare problems.
I have an issue that started back in March 2020. I will try to be as detailed as possible but some information may have nothing to do with my symptoms. At this point I do not know what is or is not important information as I have repeated my story to over 15 health care professionals to include urologists, neurologists, neurosurgeons, pain specialists, pelvic specialists etc with no diagnosis.
I am a spinal pain patient with a fusion of S1 through L4. I have been this way since 2006. I have been under pain management since then and up until March was only on 5mg Methadone every 6 hours and doing well.
In March I had a selective nerve root injection on my left side S1/L5. 2 days after I started having slight pain symptoms on the right side of my penis. I saw my PCM 4 days later who ran a STI and UTI test, all negative. Started on bactrim just to be safe. 3 days later the pain shot through the roof to a 10 out of 10. I had never felt pain like this before.
Went to 1st ER and was pretty much turned away after they checked for bladder obstruction. Immediately went to 2nd ER where they ran a bunch of tests. CT scan, UTI/STI test, blood work etc. All came back normal. Was given IV antibiotics, morphine and toredol. Nothing worked. They gave a diagnosis of urethritis. Went home then 6 hours later went back to ER. Pain had not subsided at all. Could not eat, sleep… this was pure torture.
The pain was on my right side penis in the corpus cavernosum right where the glans meets the shaft about the diameter of a quarter. It was cutting, stabbing pain that radiated out a bit. It was constant no matter what I did, nsaids, methadone, heat, cold, rest… nothing could alleviate the pain. I was also now urinating ever 30 minutes to an hour about 3 to 4 ounces. No pain anywhere else. No burning in urethra or pain in urethra.
Third ER just shot me with morphine again and reffered me to urology. They also put me on doxycycline. This was a Sunday so I had to wait till monday to see urology. Even with this amount of pain they did not call the on-call urologist. Morphine, once again, did nothing.
Next day urology emergency visit. He did an exam of the genitals and surrounding area to include prostate. He could not find anything wrong. Once again did a UTI/STI test… once again negative. No diagnosis and was told this is neurological. Reffered to neurosurgery (not sure why).
Following week saw neurosurgeon who verified the symptoms are neurological in nature but again stated he had never seen anything like this before. By the time I saw him symptoms changed. Pain was now in right penis still but also right side bladder, right inguinal crease, right foot. Bladder was very pin pointed pain only in one area. Inguinal crease was very sore and radiated. Right foot was only in my big toe and was stabbing pain intermittently. Before all this I had never had symptoms on right side. Neurosurgeon ordered MRI of lumbosacral.
While all this was occurring I went back to my pain management doctor. He stated the injection could have possibly caused this but it would be a 1st for him as he had never seen this before. He ordered an MRI of lumbar spine.
Both MRIs showed everything as normal. Only thing noted was a small cyst on left side S1 L5 near the nerve root but with no impingement.
Neurosurgeon was at a loss so he sent me to neurology. Neurologist did a neurological assessment and stated my reflexes of arms and legs were extremely exaggerated. He also did a test on the bottom og my right foot that cause my toe to go straight up ( forget the name of this test). He stated these were all signs of spinal cord impingement and ordered a cervical MRI. He also stated in his 25 years he has only seen something similar to this once. A man had one sided numbness (but no pain) of penis and right foot. Turned out to be cervical cord impingement.
MRI showed minor to moderate compression at C3 C4 C5. Neurologist sends me back to neurosurgeon with no other testing. Believes compression is root of all my problems. Worth noting I have no neck pain or symptoms in upper body e.g. arm pain, tingling etc. aside from reflexes exaggerated.
1st neurosurgeon replaced with 2nd neurosurgeon who is more adept at cervical issues. New neurosurgeon believes surgery could be good but also does not believe cervical issues has nothing to do with my pelvic and foot symptoms. No further testing and decides to send me to a neurosurgeon at MUSC Charleston.
MUSC neurosurgeon Immediately stated he could not understand why I was sent to him. He has no knowledge or training in my symptoms. Stated he could not help. Not even a guess as to what was occurring. He did state he could do cervical surgery but does not believe this has anything to do with my symptoms. Sent away with no real answers.
Spoke to 2nd neurosurgeon and Neurologist, both said they are at a loss.
Spoke to PCM about pelvic dysfunction specialist, reffered to pelvic specialist/physical therapist.
Pelvic specialist poked, prodded, bent etc and could not replicate the symptoms. Does not believe this to be pudendal neuralgia. She has never seen this before.
This is where I am now. I did not add in any doctors I saw that had no answers as nothing they did or said would help with my story.
The very first ER visits I was given so many antibiotics and Nsaids it caused tremendous pain in my stomach. This led to yet another ER visit for intense stomach pain and burning. Once again this pain was at a level I had not experienced before. ER did scans and found something that concerned them near my appendix. Called specialist in who tested me for appendicitis. This led to a colonoscopy which turned out to be nothing. Everything looked healthy. I have been recovering from this stomach pain ever since.
This whole ordeal has been a nightmare. After months of doctors and specialist I do not know what this is. We know a few things it is not which is good but it is hard to believe what I have is so rare that nobody can put a name to it which means no treatment. I know this story is long but I hope somebody can help me. I would not wish this on anyone. I feel as though most of these doctors did not truly do their due diligence and just passed me off as soon as they could.
To this point I am still only on methadone. Pain medication doesn’t help with this pain so no point in asking for or taking anything else. Tried lyrica and it did not do anything. Gabapentin causes myoclonic jerks in my legs.
At this point the penis pain is intermittent and usually does not exceed a 3 of 10. The right side bladder pain is minimal but still there. I still urinate frequently. Right foot still has burning pains on all the toes on top. Inguinal crease still is sore and feels tight all the time.
Strangely enough there are times when I am laying down and I put pressure on my sacrum area and it can cause the pain symptoms to elevate. If I get up it often will go back down.
These minimal symptoms are very new though. Past 2 weeks. It has taken months of constant elevated symptoms to get to this point. I have researched so much and can not find anything that can put a name to what I am experiencing.
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
I wonder if it could be nerve related. Did you or your doctor bring up that possibility? Id ask if an EMG and/or nerve conduction study would be useful. Frequently in Neuropathy there is the type of pain you describe in the feet and/or toes. Do you have type of sexual disfunction that started after your surgery? Post surgical Neuropathic pain can occur years after surgery. Just a thought.
Best of luck to you,
If you think neuropathy could be a possibility you might want to post your story on that thread.
Here’s a link,
Hello and thank you for your reply.
My spinal fusion was in 2006 then in 2008. Qside from left side leg and lower back pain I had no other symptoms. I never had issues with pelvic, urinary, sexual function etc. It all came on so suddenly with no injury to speak of.
Concerning the pain in my toes. Early on the pain in my toes and penis would move back and forth. Penis would have stabbing pain then 2 seconds later it would move away from the penis into the toe/s. I thought that was a huge clue as to what might be occuring inside but the neurologist and neurosurgeons did'nt seem to think anything of it.
I live in SC where health care is consistantly ranked in the bottom 5 in the U.S. I am truly wondering if this is a case of just bad medical systems and doctors versus complexity of the case. I dont know… just thought finding answers would be easier than it has been for us.
Hmmm… it would not allow me to post because I have this post. Guess this board does not allow duplicate posts. Thank you for your suggestion, I'll give it a shot if I do not get any traction here. I imagine I would need to delete this thread first.
Hello @lineage, There is another discussion that you may find helpful since you mentioned you are a spinal pain patient. It does sound like some of the problems could be related to nerve compression in the spine but then I'm not a medical expert and have no medical background.
Chronic pain and spinal fusion: https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/
@jenniferhunter may be able to share some suggestions with you.
Have you thought about seeking help at a major teaching hospital or the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
@lineage Wow! Your story is similar to my story. Thank you for writing about it in great detail. As I read your history, I kept saying to myself, check for cervical spinal cord compression. I was glad to see that your doctors did this, but when they found some cervical involvement, they stopped looking, and they didn't know what to do with those results. Your doctors kept on saying they didn't know if spinal decompression surgery would help you. They are afraid to try to help you because they cannot connect your symptoms with your imaging.
Here are some similarities in our cases. I had cervical cord compression because of a collapsed C5/C6 with a disc osteophyte complex (bone spurs), and I have a bulging lumbar disc. It may be L3/L4, but I would have to check my records to say for certain. Thisa lumbar vertebrae clicks on rotation, and I had forgotten about it. I was turned down by 5 spine surgeons who said similar things to me. The symptoms you listed are the same as with spinal cord compression and your doctors admitted that. Here is what they seem to be missing. When you move or change position, your pain changes location. That was true for me too. At the beginning, if I just turned my head, I turned a pain in my ankle on or off, and that was reproducible. I told all the surgeons that, but none paid attention to it. Your spinal cord floats in spinal fluid in the spinal canal. Because your spine is mobile, if you bend, the cord will also bend and slide within the canal. Now consider what happens if the cord is compressed anywhere… it is tethered by the compression and gets stretched or further compressed by your spine movement, and if you have a slipping of vertebrae, that canal changes shape effectively getting smaller. I had pain all over my body caused by spinal cord compression. I also had bone spurs raking the front of my spinal cord as I moved. I had a diagnostic cervical spinal injection ordered by a surgeon, and for 5 days it took away ALL of my pain everywhere in my body. As the pain returned when the steroid wore off, I charted where it returned and what type of pain it was for both a standing position and lying on my back and there were differences. When I shifted position when laying down, my lumbar spine cracked and stopped the leg pain I had instantly. I charted this for a few months and it progressed and got worse. What I was seeing was a gradual return of the my same symptoms that I had immediately after the whiplash from the traffic accident that had happened 20 years earlier. Twenty years earlier, I had sciatic pain and even some difficulty walking correctly. I now had gait imbalance and walked with a limp that was intermittent. When my physical therapist realigned my spine, I walked normally again until another muscle spasm in my neck moved my vertebrae increasing the compression on the cord and I walked with a limp again. I had 2mm of retrolisthesis (backward slipping) of C5 over C6. If the spine injection had not helped me, the surgeon could have said that the pain was not spine related, but I was never given an opinion about why the injection DID help me temporarily. I think he did not know why and avoided the issue. When I saw this surgeon a few months later with my charts that showed pain all over my body, he remarked that I had pain in every dermatome and this could be an inflammatory problem like MS, and he didn't know if fixing the bad disc would make me better or worse. When I developed vertigo and told his nurse about that, he declined to offer surgery and told me to stay in physical therapy. A few months later if I bent my neck forward, it sent a big electric bolt shock down my body.
I have a biology science background and had worked in neuroanatomy research at a university, so I was familiar with scientific publications. I was reading everything I could find about spine issues, and I read the publications of spine surgeons I was interested in seeing for an opinion to see if they would be a good match, and I was turned down so many times, I would pick out the next surgeon just in case things didn't work out. After 5 refusals, I started looking at Mayo surgeons, and I read a paper from a surgeon that mentioned a term called funicular pain. When I looked that up, I found medical literature about "rare presentations" of symptoms of cervical spinal cord compression that were very similar to my case. One of the big clues was the spinal injection I had that took away all my pain; that was also true for these other cases. It is something can not be proved unless surgery is done that fixes the pain by decompressing the spinal cord. The case studies talked about leg pain being caused by spinal cord compression and that it could change the location of the relayed pain to unexpected areas of the body. If the patient had an asymptomatic spine issue, and the cord is also compressed in another area, it can cause this pain to be referred to another location. You have that in common with me with your lumbar/sacral issues. I wanted to bring this new information to the surgeon who had just turned me down and tried to enlist the help of the other doctors at that institution who had evaluated me, and none would help me. No one wanted to point out what was missed by a highly ranked surgeon. My only option was another opinion somewhere else, so I contacted the surgeon who's name was on the paper that lead to my discovery. His name is Jeremy Fogelson at Mayo Rochester, and I sent the new medial literature I found to him with my request for an appointment. If you can come to Mayo, you can save yourself a lot of time and frustration. Cervical spinal cord compression can cause incontinence which can become permanent if there is no decompression surgery. I was warned about this by the doctor who did my spinal injection. I think you are on knocking at that door with your symptoms.
My surgery at Mayo replaced my disc with a donor bone graft and was done without hardware. The surgery resolved ALL of my all over body pain. I knew this would happen even though the doctors could not promise this. There is no test to confirm funicular pain, except the cervical spine surgery that corrects it.
Here are some links and the medical studies I talked about. You will need to advocate for yourself and with doctors who understand this funicular pain. I highly recommend by neurosurgeon, and I know he will understand these issues. My knowledge of this comes from my experience, my biology background, from working with a great physical therapist, from reading literature, and from watching surgeons online presenting spine cases for neurosurgery conferences, and my own troubleshooting, and even my 3 dimensional understanding for the body because I am an artist and have studied anatomy. Let me know if I can be of further assistance. You will need to interview doctors in order to know if they understand funicular pain or see Dr. Fogelson who is one of Mayo's best. I can't diagnose this, but I do believe that your case and mine are very similar. Surgery gave me my life back. It was a big step, and I was on my way to becoming disabled without it. Your doctors are not thinking outside of the box and are afraid to risk their reputations on a possible poor surgical outcome so they can't help. You really don't want a surgeon working on you who doesn't understand the problem, so you'll need to keep on looking for a qualified opinion.
Comprehensive list about spinal cord compression in a Merk manual
Wow! Thank you for your reply.
For me the pain has all been localized to the pelvic areas and right foot/toes. The strangest part of all this is how new symptoms would show up over time. First the genital pain then a coulle weeks later added big toe pain then bladder, inguinal etc. It never showed up all at once.
Then when the pain was more advanced it would move around to different parts of my foot. At first Laying on my sides would somewhat alleviate the symptoms but then later laying on my side would do nothing but laying on my back would help. Then eventually laying on my back would cause my bladder and genital symptoms to elavate to a certain extent.
The fact that so much was intermittent and moving around made it difficult to pin down and I could see the confusion in every single doctor's faces as I explained all of this. Honestlu not one single neurosurgeon or neurologist touched my body to try to reproduce or investigate my symptoms. The most they did was a reflex test. The only persons who actually tried to touch me was tge urologist and pelvic specialist. No matter what they did in my pelvic region they could not reproduce any of the pain.
Most all of my doctor's appointments has been about ruling out what I do not have, cauda equina, ddd in lumbar, pudendal neuralgia etc. The neurologist came close with his neck idea but like you said, he had no idea what to do with the results and the neurosurgeons would not commit to the idea that cervical issues could cause these problems. All everyone kept saying is how strange, rare and mystifying all this is. In my field of work, aerospace technology, we never took any information for granted and we never stop until we find the answer…. with so many doctors I've learned that not knowing or caring to find out is acceptable to them… I used to see these folks as heroes who know everything… then all this occured. I know there are compassionate, knowledgeable good doctors out there but I cannkt seem to find them. I have wept so much throughout all this. Not getting help has caused me so much pain.
Sorry to unload on you… as you know, this has been an ordeal of enormous proportions with steel walls everywhere.
My pain management doctor is amazing and it was his idea to look into Mayo clinic. He was a bit shocked that the neurosurgeon at MUSC, the best learning and teaching hospital in SC, would not really help me. I even asked the neurosurgeon for a referral to a MUSC neurologist and his reply was that I would just be disappointed with anyone he sent me to. I was floored by his unwillingness to help me find an answer. As I researched Mayo I foubd these forums.
Mayo Atlanta is about a 4 hour drive from me so it's not too bad but I've now become conditioned to be let down by any medical professional. I still have hope but it's more a flicker of hope than a flame. All tge ER doctors were astounded the morphine did nothing. It got to the point I just refused morphine because the only thing it did was make it more difficult to urinate which is horrible when your bladder is screaming at you every 30 minutes. A lot of the medical professionals I have dealt with have preconceived notions and if you dont respond how they think you should they give up and pass you off.
Right now the symptoms are very mild but I am terrified it may come back again. I keep hoping it was somehow the injection that caused this and it will gradually resolve but I dunno… I may be putting my hope into something that may not be possible.
Again, thank you for your very detailed reply. I am so happy to hear you found your answer and you are better… I would not wish these symptoms on anyone. I am truly happy you found hope and strength to keep pushing.
Thank you @johnbishop for your post. I will definitely look into it. I am trying to arm myself with as much information as I can.
MUSC is a teaching hospital for SC and I did not get a positive result. I am now looking into Mayo clinic Atlanta.
@lineage Now you know the reason that I make efforts to help patients like you. It is frustrating and I feared I would loose all of my art ability that I had worked so hard to achieve. I did loose control of my arms from the shoulder, and they were so weak I could not hold them up to work on my paintings……it was because I struggled for 2 years to find a surgeon who would take my issues seriously as I only continued to get worse. I kept going to my physical therapist and she bought me some time by constantly realigning my spine and treating pain with a dolphin neurostimulator which works by repressing the neurotransmittors of the pain impulses. I lost about half of the muscle in my arms and shoulders to atrophy and a lot on the back of my shoulder so I didn't see it happening right away. I am used to judging volume and nuances of shapes because that is what I do as an artist, and I could not convince a particular surgeon of that because I looked fine to him, but he did not know what I looked like before the spine problem surfaced. This was a very hard 2 years as I was also a caregiver to my aging parents and my dad passed from end stage heart failure. I did have bladder retention when my spine was out of alignment as an intermittent issue which was again dependent on my spine alignment and it didn't happen when my neck was aligned properly. I reported that only to be told to see a doctor about it by the surgeon's nurse. She was clueless; this is a real symptom of spinal cord compression. After my spine surgery, I did get a lot of my shoulder muscle back, but not all of it. You should chart your symptoms like I did and draw where you pain is on a body diagram and date it. It's easy to forget. This will show you a clear progression of if you get better, worse or stay the same. Your doctors may not pay attention to that, but you will know.
Spinal injections can cause problems. The epidural I had in my neck also caused a new pain that I didn't already have; a paresthesia that gave me shooting electric pains into my hand because the pressure of the fluid had no space to go which began during the injection. I had to just lie in bed and try not to move or I would get another shock. It took about 5 to 6 weeks for that to stop happening altogether, but the frequency of the attacks gradually got farther apart. It gave me cold sensitivity in my hand that lasted a year and a half before that went away. I will not do these injections any more. If you had the symptoms before your injection, the injection isn't the cause, but it probably can add to existing issues. That would be a question to ask.
Would you consider Mayo in Jacksonville? What I suggest is to use the research case studies like I did. Begin your inquiry to any surgeon with how your case is similar in what you found in this study, and send that in before they form an opinion of you. That is your test to see if a surgeon is worthy of your time investment and consideration. If they don't want to consider the literature, they can miss making the connection to your symptoms. I knew that Dr. Fogelson would understand this because it was mentioned in a paper he co-authored and that was the key to successful treatment, and I had his attention. You need to interview doctors and hire the best one for the job based on how they answer your questions and if they are interested in your case. I drove 5 hours to get to Mayo and it was worth it. Mayo gets all the testing done right away, and you'll see the surgeon and have an answer. I think my cervical cord compression was also listed as moderate, but in the eyes of the right surgeon there was no hesitation to offer surgery so I would not get any worse. Your imaging report is enough to warrant getting help. It does take about 6 weeks for injected steroids to be absorbed, otherwise they interfere as grain in MRIs. If you do get better in that amount of time, it might be reasonable to think that the injection was causing some symptoms. Mayo is known for taking more difficult cases, and for taking patients like me who have been refused surgical help because of complex cases. You need to match with the surgeons area of interest. At Mayo, all of my testing was done in 3 days, and I was offered surgery at my first appointment. I compare that to wasting the prior 6 months with the surgeon #5 doing what ever test he wanted, waiting for tests, waiting for follow up appointments, and then other tests only to be refused help because it might damage his procedure success ratings at least in his mind. Any of the surgeons could have resolved my issues, but I am glad that I had the best by coming to Mayo. I wish I had come there first and I could have saved 2 years if I had known the rules of the game. If you can't find a surgeon who takes your case seriously, you should consider traveling to get the best care. It really is worth it. I tried to get help locally and could not. Everyone at Mayo is an employee, so they don't own a practice and have biases based on if something would help or hurt the reputation of the practice, or just cherry pick cases that are easy and contribute to ratings. They really do put the needs of the patent first and it makes a big difference. I had never experienced that before. Please stay in touch and let me know how you are doing. Best of luck.
I am so sorry for what you are going through. Please keep us posted.