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lineage (@lineage)

Undiagnosed rare problems.

Brain & Nervous System | Last Active: Mar 20 11:53am | Replies (30)

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@lineage

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.

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Replies to "Wow! Thank you for your reply. For me the pain has all been localized to the..."

@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.

“Lineage”, As I was reading your letter and then Jennifer’s response, I was wondering if any pain intervention doctor OR neurosurgeon had suggested that you try selective nerve root blocks at the levels of compression in your cervical spine? That can be done by one of those specialties or maybe even an interventional radiologist. They may only do one level at a time so they can find out what works/doesn’t work instead of doing multiple levels at once – the latter muddles the picture. More travel and pokes for you, but it is important to clarify the situation. I had both my neck and back done when I was being diagnosed. I’ve had both neck and back fusions and was a RN x 43 years, so speaking from multiple aspects of viewpoint!
Another thought is you could get an opinion on whether one of MD types I mentioned would consider trying this on you – at this point – by looking at your scans and chart online. Then maybe if you traveled to get one, you would know ahead of time why you were going back instead of feeling like wandering in circles. It is VERY frustrating to not get clear answers. As was said, you really have to be your own advocate these days! Not fun when you are already under the weather, but an evil necessity from my patient perspective!

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