severe multi level cervical issues and severe S1 changes

@janagain you mentioned cervical problems and your hand not turning palm up. Do you know if they’re related? I also have cervical issues and I didn’t notice until about 36 years ago when I started driving I had trouble getting my change. Over the years it’s got worse i can’t carry a plate in that hand anymore. I’m going to see a 4th neurosurgeon the 24th about my failed back surgery and bulging neck disc maybe I’ll remember to ask him

Hi Plumber,
That sounds familiar, I've got left arm weakness and as you mentioned, unable to turn my palm side up of my left hand. The Cat scan showed that all of my cervical vertebrae are filled with oseoarthritis. The C6-7 and T 1, there's pinched a nerve. I have bone spurs that have fused together at the C6-7. I've been having lots of weakness in the left arm. It was when I noticed that I was having weakness in my left arm, hand and fingers that scared me. I put a call into my Nuerologist (at the time) they instructed me to go to the ER and get an MRI. This is how I found out about my neck issues. I was focusing on my L4-S1 that has a severe problem. I can't even address that until I get my neck corrected. I've been in a lot of pain daily , some days are better than others.
I can't carry a plate either or most anything. Even something very light can be difficult. It works better for me to hold something like a coffee cup with my fingers around the top of the cup and held down at my side. It is getting worse for me , the arm is completely useless and it's exhausting trying to make it work and it doesn't want to. I'm hoping to have a successful outcome after surgery. (not scheduled for that just yet) I hope that answered your question Plumber. Good luck on the 24th.
Jan

Hi Jan
I'm glad you are getting in soon with a neuro. I just read your message to Plumber about your arm getting noticeably weaker. You definitely don't want that arm feeling real weak for too long. The longer that nerve is compressed the longer it will take to recover. If he thinks it was somewhat urgent and you feel comfortable that he is a good choice for you, I would schedule to have the surgery as soon as possible. Depending on how soon that is, you may still be able to get another opinion. When I first saw a Neurosurgeon for my initial problems 25yrs ago my left arm had become about 90 % paralyzed. I couldn't lift it from my side. He was quite alarmed that it had been that way for several months(as well as what the Mri showed ) and wanted to do the surgery the next day. I eventually got the full use of the arm back after about 3-4 months. Hopefully you will soon be on the road to recovery. At least for your cervical issues, and then you can tackle the back later.!

Ps-I'm having shoulder surgery on Monday and so will be out for awhile, but do keep us posted. I'll be thinking and praying for you.

Thank you orloffjr, I appreciate your thoughts and prayers. I sure hope that I get the use of my arm back because it's very weak. I feel like I couldn't carry a feather. The harder you try to force them to work , it ends up being exhausting. It's something I've never experienced before and I'm feeling anxious and scared. I hope it comes back again like yours. 90% paralyzed and you were able to function again, how incredibly wonderful. My arm has atrophied also but only I can really see that at this point. I'm getting a second opinion in a week and I've got to get copies of the MRI/Catscan CD's. This particular Neurosurgeon is not a part of the group of doctors that can view my images at random. My Neurosurgeon told me to go to the ER if needed but that they would assign me a Neurosurgeon. You don't know who is avaiable and how is that going to work out?
My thoughts and prayers are with you for your shoulder surgery Monday.
-Jan

@janagain Jan, I remember that feeling of exhaustion in my arms and I also had muscles atrophy on the back of my shoulder. I had trouble doing anything if I had to hold my arms up. One day when grocery shopping after pushing a full cart around the store, then loading groceries in the car, I curled up and slept in the front seat for an hour before I could get the energy to be able to drive myself home. It was that exhausting, and sleeping only helps until you try to do something else. It is shocking when you want your arms to work and they just can’t.

The surgeon I saw at that time thought my arms looked normal, but I knew how it used to look and judging shapes and mass is something I’m trained to do as an artist.

I did have surgery with another surgeon at Mayo to decompress the spinal cord and that brought some life back into my arms. I did get some muscle back through rehab, but not all. My strength is pretty good and I can pick up 40 pound bags, but a 50 pound bag is a bit much and I used to be able to pick that up. If I pick up that much, I can’t raise it past where I got both arms around it.

I can brush and saddle my horse and raise a 30 lb saddle up to my shoulder height to set it on his back. I wouldn’t be able to do this continuously, but I have enough strength to take care of one horse and the grooming required.

It took awhile to get the endurance back for painting, and I was 11 months post op when I did the painting for my surgeon. There were days I could only paint for 2 or 3 hours, then I would lay down on the floor to rest and I would fall asleep. It took a month to finish the painting that now I can do in about 2 weeks because I needed to rest. Painting became my physical and emotional recovery after spine surgery. Toward the end of that month, I was able to paint 6 hours a day if I had the break and a nap to rest. It was also fine tuning the coordination in my arms. I was trained to move my arm from the shoulder for artwork instead of resting my hand on the surface. I can do that again.

Jennifer

It's so encouraging to hear your story Jennifer. I'm hoping that I will get my strength back also. Even if it takes me a month or more, I've got time. I just want to hold my new grandbaby coming at the end of the year and not feel like it isn't safe to hold a baby. I already do things a little bit slower but with out coordination it's just about impossible. Jennifer, you are so incredibly talented. Your paintings draw you into the picture and make you want to see the fine details. The detail of the faces, the ropes, horses, saddle, trees ... amazing.
And the colors are perfect as in nature! Ok.. so I got off track.
I can't imagine how difficult it was but with determination, you are able to do what you love.
-Jan

@janagain Jan, How exciting to have a new grand baby on the way! I'm sure you can find a way to safely hold the baby. This brings to mind a picture my podiatrist showed me of his daughter who was around 3 when she wanted to hold her new baby brother. They had her lay on the floor on her back, and they put the baby on her tummy with her arms around him. It was a very cute picture. I hope that brings you a smile.

I see that very soon, you'll have a consult with a spine surgeon. I hope you get what you need and that there is an offer for help. You need to be able to trust a surgeon when you get on their table, so ask questions so you understand. Will you be having any other surgical opinions? Do you know what questions you want to ask? You may want to write those down now and take a paper with you because it's so easy to forget when you get nervous when the surgeon walks into the room. I remember that I felt shocked when I was told I needed spine surgery, not that I didn't expect it, I did, and I knew it was necessary, but suddenly it becomes real, and when there is a scheduled date, you start to think about what to do to be ready for that day.

Thank you so much for your kind words. If it helps to think about images that you like to help you get through the medical issues, go for it! One thing I learned when I had my first surgery ever (Carpal tunnel) was to create a "safe place" where I could go in my mind to relieve some of the stress and fear that accompanies the unknown of a medical procedure. I had a safe place that was real outside in nature, and it had a wooden carved sculpture of a whale and a big chair that was carved out of a large tree stump. It was a real place and I had pictures in a little spiral photo album to look at when I needed to escape, and I could imagine myself sitting in that tree-chair. When I went to Mayo for my spine surgery, the night before, I did something similar. I took one of my paintings with me to the hotel, and I just imagined myself inside the painting walking around. It was along a creek in Rocky Mountain National Park, and I also listened to music while I looked at my painting and did the deep breathing I trained myself to do. It was hard to sleep the night before surgery, but I did manage to relax enough, and I got tired enough that I did sleep until that early alarm to get ready.

I think you can use your music for the same purpose, and also choose images of things you love that are meaningful to you. You could have them on a cell phone or tablet in your hand to look at when you need them. Use the feelings of love to comfort you. So, you're not off track at all. You're reaching for what you need. I'm glad you did.

Jennifer

Thank you Jennifer for your awesome suggestions and support. I cannot wait for the grandbaby to arrive and I've got to have some patience because the baby is due in January 2025. I know what is going to keep me busy is working my way back in physical therapy and getting my strength back. I did get a 2nd opinion from a Neurologist. What are the rules with 2nd opinions? Do you tell the surgeon upfront it's a second opinion? He looked over all my results except my images came in the mail the next day. I did have all the reports and he feels pretty much the same as my Neurosurgeon said that was assigned to me when I was in the hospital.
He ordered a thoracic xray which I hadn't had. He was an older doctor and I'm trying to figure out whether a doctor that is ready for retirement has the most experience in his many years of practice? Or, do you go with the younger doctors that are up on all the latest improvements for the surgery? I have an appt with my Neuorosurgeon on June 11. It will be interesting to see what decisions he will make towards my multi level cervical fusion. I did ask a lot of questions to the 2nd opinion doctor and he was quite detailed about everything. He explained the procedure and what to expect. He cannot promise that my strength will return in my left arm that is so weak at this point. I'm remaining hopeful. I was hospitalized with left arm weakness in March and he wants to see me June 11th. It's been shear anxiety waiting and wondering why he isn't taking me into surgery now. In the meantime I've been doing some foot work to help me make my decision. There's always an option to go to the ER at anytime. I swear there are times I just want to drive to the ER and get it taken care of. But, I will have the "on call" Neurologist and not my own Neurologist. So it's seriously one day at a time. I'm just going to wait it out untill June 11. Then I'll make my decision and if need be get a 3rd opinion. I love my music and have surrounded myself with wonderful musicians. We have been working together making our music sound just perfect. It doesn't work by just one person playing their own tune, we have to listen carefully, slow down and figure out the timing , the notation and the emotions we put into the piece. Isn't that way with everything we do in life that is worth fighting for? Also trust, that my Neurosurgeon is on my side! Jennifer, you're right about "use the feelings of love to comfort you." I often listen to my music I've recorded at night before sleep. My mind slows down and I stay focused on the music. I Listen to the highs and lows and it relaxes my mind and I immediately fall asleep!
Similar to what Jennifer said about her art and imagining she's actually in the picture, listens to music and can control her anxiety. I hope by sharing my feelings it helps anyone that is going through a future with spinal surgery or any surgery to focus on trust and not be consumed by anxiety.

Very sorry to hear all your challenges.
Ask the surgeon about piano. As a fellow musician I know the importance of having your music. It sounds like you should wait till June and let the surgeon you know and trust do this. The statistical likelihood of a car accident causing this damage is minuscule. Drive when necessary only and focus on the cervical issue first.
Like me address the lumbar later.
I’m sure you terrified but know that He is always with you and think of how much suffering he did on the cross, it helps when I just say Jesus help me , be with me now I need you I trust you.
Somehow it helps me deal with my chronic migraines and lumbar sciatic pain. Operation September likely after stress test.
God bless and look after you. You are never alone!
Tony

@janagain Jan, There are no rules about needing to tell surgeons you are getting other opinions. Good surgeons should expect this and not be uncomfortable about other surgeons challenging their opinion. You are looking for the overlap and general agreement among opinions that you are on the right course. It is an elective decision and as a patient, that is in your hands. Multiple opinions gives you, the patient, the education and confidence to make the decision. That is how it should work, but there can be doctors who miss the diagnosis as it was in my case, but I knew so much about why I had my symptoms and when I found medical literature that my case aligned with, I knew I was right. I had only one surgeon in agreement with my opinion and he understood the reasons for the diagnosis in the medical literature like my case, so I was confident this was the right solution.

Surgeons don't promise to resolve pain or that your function will get better. A lot depends on how much damage or permanent damage has already occurred and that is hard to access before decompression. There are a lot of other unknowns with other health conditions and patient compliance with after surgery recommendations. We are all different. Surgeons can give you their statistics of success with a particular procedure and should be able to tell you how your age and health status would affect your potential success.

As for emergency surgery, if you arrived at the emergency room with a broken spine that was a life threatening risk to breathing and heart function or brain function or paralysis, that would be an emergency to take a patient right into surgery. When you've been living with spinal cord compression or nerve compression with a deteriorating spine, it is unlikely that would elevate the case to having emergency surgery right after you get to the emergency room. My broken ankle qualified for emergency surgery on arrival at the hospital because you can't leave a broken bone sticking out of a wound with a huge risk of infection that could result in limb loss down the road. The surgery that day only cleaned and debrided the wound placing the bone inside, but did not set the bones, and and external cage outside the ankle. Fixation surgery came 2 weeks later in a planned surgery after swelling had subsided a bit.

Getting on a surgeon's surgery schedule is likely going to be a few weeks to a month or more out depending on how far out they schedule and how they access the urgency of each case.

Judging the experience of an older surgeon vs a younger one should really be about their personal success rates and the volume of similar procedures they have done, so ask that question. Newer surgeons with more recent training may know other newer ways to solve the problem or about relevant research . I wondered this too myself, and my surgeon had 10 to 11 years experience at the time of my surgery which probably includes surgical residency and fellowship, and 4 years experience as a full surgeon and teaching at Mayo. I thought of him as a younger surgeon. I do know that being a surgeon and leaning over a table is hard on surgeon's backs and that can lead to their retirement if they develop spine problems themselves. From what I've noticed online, it seems like early career surgeons are out there more at spine conferences and learning instead of settling into private practice somewhere, but that may not be accurate since I am not attending the conferences. I think being connected to a respected teaching medical center makes a difference in the quality of the surgeons on staff, but of course there is a lot to consider, so you can't generalize . You have to consider each surgical opinion for it's own merit and for what track record the doctor brings with them.

Knowing the time needed for scheduling may help you decide which surgeon you want to consider for the job. I would not make a decision based solely on who can schedule the patient sooner, but you need to take this into account while waiting for appointments for tests or other surgical consultations. You should reach a point where it just seems and feels right to proceed with a particular surgeon and you have to be able to trust them completely, because you will trust them with your life by gong forward.

Jennifer