I’m 50, and a gr8-12 math/science/special ed teacher on long term medical now. I’m not new to back and spinal issues. The spinal cord issues are mostly due to an old trauma causing arthritis and early damage. I also have a birth defect(L5 fused on one side to hip-surgery first suggested at age 10 for this).
I have both cervical and lumbar stenosis at multiple levels each. I’ve had treatment for lumbar stenosis including medication and steroidal injections (8-10 at a time due to living so isolated in the great white north on the Alaska Hwy). I’ve lost control of function below the waist once but since functioned returned within 24 hrs it was determined that surgery could wait. I barely survived a severe pneumonia about 5-6 years ago so I’m high risk for Covid. I am monitored for a couple cancers including lung cancer due to some growths. Covid has caused surgery to be postponed multiple times. Now the surgeon isn’t sure surgery is the answer any more. The pain is ridiculous causing high blood pressure. Along with the stenosis most of the lumbar discs are bulging pushing against the cord and just recently my L4 slipped forward. The pain is referred over the butt and down both legs. The cervical stenosis has caused my body to go completely limp when I used to play tennis years ago, I could no longer golf. At least 4 levels are involved. I’ve had unilateral facial numbness and same side arm numbness for less than an hour at a time a few times over the last year. But in the last two days I had full body immobility for a couple minutes followed by left side facial and left arm numbness and immobility for an hour the one night. My doctor is having my flown to the closest hospital with MRI as my last cervical MRI was in 2016. Who knows, maybe it’s more than 4 levels now. Tonight though it hasn’t stopped. I can move but my entire left side feels numb and cold. I mean entire side. It’s weird because the other side is normal except for mild numbness on right side of my face. My left arm has a little weakness that comes and goes. I get my vaccine shot tomorrow and I will contact my doctor with the numbness progression.

I joined the support group last night because I’m just overwhelmed right now. I’m also wondering if the loss of control below the waist was actually due to the lumbar stenosis or the cervical stenosis. My husband gets too upset and worried so I’m on my own although I do talk to a counselor now and then. I’ve used other support groups for two other serious issues and figured it’s past time I did so for my spine. Being isolated I’ve met my neurosurgeon in person once and on phone once. In a couple weeks I’ll find out if surgery will even be done as the surgeon is not sure it will be best.

Welcome, Northernlights300!

I'm Joan and hang out mainly at the MS board--and am sorry I can't be more helpful but it sounds as if COVID has been making it hard for you to get medical attention, as it has been doing for many people.

Sometimes though it's not so bad if doctors stay out of the picture and just let nature take its course. I've noticed with my own back problems that that is often the best way. It takes time and more time but sooner or later a lot of back issues calm down.

But it sounds as if your numbness warrants medical attention, and I hope that when you go for the vaccine, the doctor will be able to help.

Welcome Northernlights300.

Hi Northernlights300

Welcome to the Community .

You might find the Search option here (https://www.neurotalk.org/search.php) a good way of finding threads and topics which could help you.

Best wishes.

Welcome to NeuroTalk Support Groups, Northernlights.
You must be in so much pain.

I snipped some of your message and quoted it above. What you are describing sounds as if it's a medical emergency and not something that can wait, Covid or not.

Another big red flag for me is when you write

Who is looking after you for all that and when was last PET scan?

When are you being flown to nearest hospital? You seem to have many different conditions affecting you at once. (edited to add: I re-read your message and you're off to the doctor for Covid vacc. I sure hope you got time to talk to them about these other very serious sounding problems going on right now)

I tried to upload a Spine map but it was too small to read so I removed it.
This image is large enough to read on this post from Jomar in Spinal forum.

https://www.neurotalk.org/1291179-post12.html

Regarding "loss of control below the waist" and "pain down both legs"

It would not be good to leave something so serious for too long. Have you heard of Cauda Equina Syndrome? If you check the link below and anything there sounds as if it pertains to your situation right now, then it is certainly an emergency also.

Cauda Equina Syndrome – Symptoms, Causes, Diagnosis and Treatments

Thank you for the warm welcome and the information.

I had to laugh when whatever you said I had quite a few issues. You only know about half of what’s going on. I like to joke that if it wasn’t for modern science my family would’ve died out long ago.

I was born with bronchial asthma and possibly some autoimmune issues right to begin with that were never diagnosed until I was an adult. I have Hashimoto’s which ended up causing over 30 food allergies not intolerances. I stayed off those foods for over six years. I have actually been able to add some foods back in. Hashimoto’s itself can cause the food allergies. I’ll never be able to eat gluten again. I tend not to get anaphylaxis but rather rash instead. We are currently checking into if I might have vasculitis which can cause nerves and joints to be more painful than they really are. I also have Reynauds,, another autoimmune disease.
I’ve tested positive for the smooth muscle antibody which actually indicates if there’s a possibility of developing autoimmune hepatitis. So far it hasn’t developed into the hepatitis yet. My doctor monitors all of this. I have had problems often on for the last 10 years relating to the spine both lumbar and cervical. The worst of it was that I also have reflux sometimes silent meaning you can’t tell it’s happening and sometimes with all the chest pain that can go with it. When I sleep liquid coming up from the stomach can go down into my lungs. This resulted in severe pneumonia four years ago. The day I checked into the hospital my oxygen was cycling between 52% and 75%. Needless to say I did not leave the hospital that day. I almost died The first night. I filled my D dimer test which has to do with the heart. All I know is I couldn’t actually sleep for three nights. I also had to sleep or try to sleep sitting straight up. If I went back at all I couldn’t breathe, and this was on oxygen. It took a long time to get over. Close to a year went by until I felt almost normal. I still have to take all the long medication and this is what we found the growths in my right lung. The reason I am including all of this that has nothing to do with the back is that two of the doctors involved in my care believe I would not survive Covid if I was to catch it. So we are holding off the MRI for at least 12 days so that the shot has had a chance to work. It won’t necessarily be as effective as a healthy person to do autoimmune issues. It caused a flare of my Hashimoto’s And possibly vasculitis if that is indeed what I have. My hands when I woke up this morning were completely swollen with no knuckle lines and painful. This is something I deal with every time a flare comes up.

Now the doctor did say if I lose a side like that again for more than six hours I am to go to hospital immediately at the six hour mark to be flown out right away for the MRI, I can have the lung CT at the same time as long as I’m not too worried about the amount of x-rays needed for my back and neck. Now on the Alaska Highway, if you were in an accident or any kind of emergency and require medical flight to another hospital that means within three to four days after the flight Is requested. (Pregnant mothers have to leave town for the month before the birth and have their child in a hospital with maternity available. We no longer have anyone that can deliver babies here where I live. The mother is expected to pay for her own transportation and cost of living for the month in a strange town and then have her baby with a doctor she doesn’t even know.) Each morning the schedule is worked out for the medical planes. They’ll tell you if you’ve got a spot but they can’t guarantee what time they’ll arrive or if they will arrive because if a more serious call comes through like hearts or anything that could cause death would trump my being paralyzed and then I’d have to wait.

The time I totally lost control of washroom function below the waist I had to be flown out immediately and I think my doctor was going to have a coronary because we couldn’t get a Neurologist to answer the phone. We needed to know where to send the plane. You see the emergency occurred after 4 o’clock on Friday. It took over 72 hours to get a flight out. That’s what I’ll be on the recommended 48 hours as a surgery window so that the patient doesn’t become paralyzed if it’s Cauda equina syndrome. Cauda equina syndrome was suspected but eventually the neurosurgeons involved felt because I got feeling back in control back the surgery could wait.

I forgot on my last message to include a photo showing what I did today to get my spirits up plus He didn’t traduces you to what spring break is like on the Alaska Highway. Check out the photo attached below.

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