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Undiagnosed rare problems.

Brain & Nervous System | Last Active: Mar 20, 2021 | Replies (30)

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@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.

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I wanted to ask you a question about your symptoms if you dont mind. Were you able to reproduce your pain by twisting or bending your neck consistantly?

My issue is that no matter how much I move my neck it does not cause any pain in my pelvic region or foot. Its hard for me to connect my neck to my symptoms as they do not seem to correlate. Of course I could be doing things incorrectly.

To answer your question, I had the nerve root block injection then 2 days later I started exhibiting the penis pain symptom and about 7 days later the pain went through the roof. Over the course of the following few weeks I gained more symptoms and had wavering amounts of pain. It would go from a 10 for 2 to 3 days to a 5 then to a 2 then sboot back up to a 10 for another 2-3 days. I have had multiple acute attacks since then but they do eventually calm down. There have been a few very rare days where the symptoms went away altogether but it always seems to come back.

Before this injection I absolutely never had any of these problems, no pain at all on my right side or pelvic region. All of this started after the injection. The thing is half the doctors believe its too big of a coincidence while the other half say there is no way the injection did this considering the injection was on the left side and all the symltoms are exclusively on the right.

I was only able to find 1 report that was somewhat similar to mine. A man who had a spinal fusion in his s1 l5 had a nerve root block injection on one side. A few hours later he exhibited pain on both sides and had uncontrolled prolonged erection. The doctor used radiological fluid during the injection so they were able to put him under flouroscopy and they saw the fluid had found its way to the opposite side somehow. His symptoms eventually subsided thankfully but this does prove these injections can become bilateral and cause symptoms that are unexpected. It seems to be extremely rare though.

I wonder if having a spinal fusion somehow causes routes to exist that normally wouldnt allowing fluid to go in unexpected places. I had a s1 l5 fusion which was done improperly leadinv to a second fusion 2 years later. The 2nd fusion reqiired removibg all of the old hardware and installing new hardware properly as well as addinv the l5 l4 layer. Ive had a lot of work done in that area. Just an idea.