Anyone connected to a specialist in Canada re cauda equina surgery?

@kmf I wanted to welcome you to Connect. I'm sorry you are going through so much trouble. Did your doctors give you a reason for your sodium blood levels to be so low? You also mentioned that you stopped some of the medications you were taking. Do you know what the purpose is for any medication you take?

Blood chemistry including sodium and potassium balance is very importation for functioning of muscles including the heart which is your most important muscle. I do know that sodium and potassium are involved with muscle contraction in a delicate balance and a chain reaction as the contraction proceeds down the long muscle cells. I have no medical background and don't know how medical care works in Canada, but wanted you to know you're not alone. If I may ask, what level of your spine was fused? Will you be doing further rehab with your therapist?

Jennifer

Thank you Jennifer for replying. I live in Toronto Ontario and a Dr encouraged me to reach out to the Mayo clinic. When I woke up from surgery I was now hyponatremic and I have continued to stay mildly hyponatremic sodium, rarely getting back up to normal
range. I have asked for a treatment plan and proper monitoring as I have no way of monitoring. This condition has resulted in 2 hospital admissions. I would simply like to get those levels back within normal range. I take sodium chloride pills 3 times daily and have been asked to restrict my liquids since May 2023. The low sodium as you suggested is likely effecting the heart and also likely why I am experiencing headaches, dizziness, nausea etc. Coming out of surgery I was placed on pain meds, anti nausea, anti gas/ heartburn pills, opioids, muscle relaxants, Tylenol, a few others. Previous to experiencing back issues, a protruding disc in the lower back, I was a health focused person, not on meds living a very healthy lifestyle. As I left rehab, after a couple weeks stay, I requested that some of the meds be lowered in dose as I was eating so many pills. I woke up from surgery, hyponatremic, unable to eat with a feeling of fullness, numb foot and leg including my private area, chest pressure, shortness of breath and tremors in my spine and weird chest pulses which really tired me out and have progressed to a chest flutter. I asked immediately for a second opinion and to see Ortho as I'd just come out of emerg surgery on the back/spine, also couldn't eat except small portions of purred food and lots of difficulties sleeping as my body was now tremoring and having sudden shakes throughout the night. I am still experiencing the same symptoms since my surgery. I'm fatigue, have difficulties with easy breathing, leg and back numbing on the left side, other side effects as a result of still having a feeling of full stomach therefore lost a lot of weight and nutrition, sleeping issues as my breathing and involuntary body shakes wake me up all night. I have asked non stop for a neurosurgeon or back surgeon to intervene and have a look at and monitor my post cauda Equina surgery complications. I continue to be sent to other specialists, both times I was hospitalized I requested Ortho to check out my back and weigh in on the tremors and body movement/ numbing and pain that changes daily, this did not happen and the continued response seems to be to investigate other areas of my body. My precipitating factor to poor health was the surgery. When I lay on my back, most of my left leg up to my belly goes numb and feels swollen, turn on my right side and alot of the numbing goes away. I stand up the leg goes numb and most of the foot
I really am hoping someone on here is connected to a medical professional in the spinal field in Toronto who may be willing to look at my case of post cauda Equina surgery, discectomy to hopefully assist and provide treatment support so that I can move forward

Thank you Jennifer for replying. I live in Toronto Ontario and a Dr encouraged me to reach out to the Mayo clinic. When I woke up from surgery I was now hyponatremic and I have continued to stay mildly hyponatremic sodium, rarely getting back up to normal
range. I have asked for a treatment plan and proper monitoring as I have no way of monitoring. This condition has resulted in 2 hospital admissions. I would simply like to get those levels back within normal range. I take sodium chloride pills 3 times daily and have been asked to restrict my liquids since May 2023. The low sodium as you suggested is likely effecting the heart and also likely why I am experiencing headaches, dizziness, nausea etc. Coming out of surgery I was placed on pain meds, anti nausea, anti gas/ heartburn pills, opioids, muscle relaxants, Tylenol, a few others. Previous to experiencing back issues, a protruding disc in the lower back, I was a health focused person, not on meds living a very healthy lifestyle. As I left rehab, after a couple weeks stay, I requested that some of the meds be lowered in dose as I was eating so many pills. I woke up from surgery, hyponatremic, unable to eat with a feeling of fullness, numb foot and leg including my private area, chest pressure, shortness of breath and tremors in my spine and weird chest pulses which really tired me out and have progressed to a chest flutter. I asked immediately for a second opinion and to see Ortho as I'd just come out of emerg surgery on the back/spine, also couldn't eat except small portions of purred food and lots of difficulties sleeping as my body was now tremoring and having sudden shakes throughout the night. I am still experiencing the same symptoms since my surgery. I'm fatigue, have difficulties with easy breathing, leg and back numbing on the left side, other side effects as a result of still having a feeling of full stomach therefore lost a lot of weight and nutrition, sleeping issues as my breathing and involuntary body shakes wake me up all night. I have asked non stop for a neurosurgeon or back surgeon to intervene and have a look at and monitor my post cauda Equina surgery complications. I continue to be sent to other specialists, both times I was hospitalized I requested Ortho to check out my back and weigh in on the tremors and body movement/ numbing and pain that changes daily, this did not happen and the continued response seems to be to investigate other areas of my body. My precipitating factor to poor health was the surgery. When I lay on my back, most of my left leg up to my belly goes numb and feels swollen, turn on my right side and alot of the numbing goes away. I stand up the leg goes numb and most of the foot
I really am hoping someone on here is connected to a medical professional in the spinal field in Toronto who may be willing to look at my case of post cauda Equina surgery, discectomy to hopefully assist and provide treatment support so that I can move forward

@kmf Thank you for further details. I can understand why the doctors are focusing on the issues that could affect your heart because the heart gets priority over everything. What I wonder about is why your symptoms change with different body positions? Have they confirmed if the fusion process has started? By 9 months post op, it should have, but sometimes there may be a non union. If there is any instability of other vertebrae that can slip or move position, that may be a clue. I also think about possible changes in circulation that may bring about symptoms since you said your leg feels swollen.

Have the doctors done x-rays in these positions to check if your spine is actually fused or to look for any hardware failures and if change of position changes spine alignment? Likewise, a Doppler study on circulation can show if your circulation is being diminished or if there could be a deep vein thrombosis or if there are circulation changes with different body positions. I have a situation where that happens because of my arm position with Thoracic Outlet Syndrome. There could be a similar issue with the lower limbs. Those would be simple tests to request if not done already. If you have an online patient portal with your medical system, you may want to read your medical records and look up everything. That will tell you what your doctors are thinking.

Here are a few links to information that may be useful for information.

I can also tell you that one way to find specialists is to look for medical research papers and look to see who the authors are and authors of other literature that is cited. That will take a long time, but you may find some experts who understand complex situations. If you start looking up terminology in your medical records, you may find literature about similar cases.

I was also able to find this on the Mayo website with an Information Service office for Canada you can call with questions, but not medical visits.

Jennifer

Hi I am from Toronto and had spinal cord surgery last summer. Who was your doctor - were you at Toronto Western for your surgery? I know the team there.

Thanks again for your reply. I just got a new family doctor so he's just catching up on things. My neurologist saw me twice, noticed I had a mild tremor and other symptoms. He was more focused on some brain MRI findings, I asked him to send me for a full spinal MRI. He cut me loose in a nice way mentioning that he could only provide 2 specialist appts. I wanted a second opinion since early June. Was wanting another orthopedic surgeon or neurosurgeon who are more familiar with movement disorders and cauda Equina surgery.