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Cervical laminoplasty surgery for balance: I'm scared

Posted by lilyteddy33 @lilyteddy33, Nov 28 6:24pm

I suffer in my legs & feet from PN for 6 yrs. I am losing my balance & cannot walk straight. I also have back pain, arthritis, osteo & facial post herpetic neuropathy. The neurosurgeon told me I must have Cervical Laminoplasty surgery (its in the neck & causing balance problems) in order to regain my balance. I'll be 82 & am scared to death of this painful surgery & question if I'll even recover since my body is at war with itself everywhere. I do not have a support system, friends have died, no family & lost my last 2 dogs just this year. Has anybody had this surgery & if so what did you experience? I'm a total disaster. Six yrs ago I could walk miles everyday & did. And did yoga.I think trauma may be the reason I find myself in this terrible condition. Thank you. Judy

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lilyteddy33 | @lilyteddy33 | Dec 7 10:56am

Are u happy u did spinal cord surgery? Was it of great benefit?
You are a wonderful human
Fostering so many animals. Savings lives. How do you manage with so much pain?
I have a selfish husband who gives me a very bad time about all my little donations;small but they add up. We fight constantly about it. I believe this may be the main reason my pain increases. He is the trigger for my yrs of nerve damage. I desperately want to leave him
Not a lot of money, almost 82, in great pain..no place to go, no friends , and divorce a very long process in Ca. Plus the stress on top of stress.
He does not have a good heart as I do. 1st 25 yrs was a better person. Last 18 from hell. Everytime we fight my pain jumps huge!
I’m totally on my own, no friend to support me or to talk to. Can I survive the 12-14 mos process of divorce? I will be close to end of my life when it’s final.
My so many painful conditions keep me prisoner. Forces me to remain here with a partner turned monster/selfish!
I have nothing in common anymore!

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Dec 8 3:34pm
In reply to @lilyteddy33 "thank you Jennifer. so sweet to take time to reply. No, I do not belong to..." + (show)
@lilyteddy33

thank you Jennifer. so sweet to take time to reply. No, I do not belong to any groups nor do I have anybody left in terms of "support system". I'm almost 82 & my entire body is at war. I can't begin to put words to my symptoms. Many new one's began after I caught covid early this year & my medicines which were a miracle & gave me hrs of relief, suddenly stopped working. My receptors in my brain were affected badly. New pain began in my legs after covid. Freezing as if inside a frig full time & layers of clothing can't help. It is so deep inside. I am not responding to any medicines at all. I'm also burning & freezing in my feet & legs. My face nerve damage began 18 yrs ago after undiagnosed shingles which destroyed right side of facial nerves. it's excruciating. The meds I was taking prior to covid kept my facial pain manageable, my neuropathy manageable & in the last 6 yrs I've gotten arthritis & osteo everywhere. I've had severe emotional trauma for the last 18 yrs which I can't put into writing. I'm really frightened to undergo surgery as my entire body is at war in pain. And now I can't take any pain meds as my receptors went through something that the medical world can't explain for post covid people. My circulation is not working properly. How could I get thru the cervical surgery or recover? Something unexplainable happened to my neurotransmitters after covid & I'm in unbearable pain. I am flammable everywhere & I am fighting to stay alive, Today is worse than yesterday. Each day it grows like a forest fire. It sounds like you had the surgery? How old are you? What other painful symptoms did you have prior to surgery? It sounds like you have a support system in place? How long did it take you to recover? And I'm sure you could take something for pain relief during your recovery? What pain went away after your cervical surgery. I know I'm full of questions. Did your neuropathy go away? My list is long so I apologize. I'm grateful I got one response so Blessings. I cannot find the right words to describe my condition but I can't bear another day of these horrible symptoms. Thank you truly. judy

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@lilyteddy33 Hi Judy. Have your doctors checked you for blood clots in your legs? My mom had them. The way you are describing your legs being cold and painful, that is what I think about, and I know Covid could cause micro clots and affect circulation. They can do an ultra sound to check. My mom takes a blood thinner Eliquis for this.

In answer to your other questions, at the time of my spine surgery, I was 59. My husband did all the shopping since I couldn't drive after my surgery for months. I chose not to have hardware on my spine, so I had to stay in a neck brace for 3 months until the bones fused, and then do rehab and physical therapy. Full recovery is about a year, and I felt pretty good after 6 months. I had all kinds of crazy pains everywhere in my body being caused by spinal cord compression in my neck prior to the decompression surgery. Those pains were gone when I woke up from surgery. I just had pain in healing that was caused by the trauma of the surgery itself and where they cut through tissue. In the hospital they gave me pain medication and it nauseated me so much, I chose not to take any after I got home and I did just fine. The meds didn't take away pain completely anyway, and I found I could tolerate it without drugs. I was on the healing side of the problem, so having "healing pains" was easier to accept than having pains warning of a problem. A few years later, the pain from breaking my ankle and the resulting surgeries, was much more painful and for a much longer period of time than the spine surgery. Compared to that, spine surgery was an easier recovery, but I wouldn't call it easy. Again it is different for everyone and can have different success rates depending on other conditions that affect health. Everyone is different in what they can tolerate, so I don't know what your result would be. You do need to mentally prepare yourself for major surgery and be on board with the plan. That leads to better outcomes and lower stress throughout the journey.

My case had been confusing to doctors because they couldn't pinpoint the exact cause of the pains all over my body (even in my feet and legs), so 5 surgeons refused to help even though my imaging showed the ruptured disk and bone spurs, and they all knew how to treat that. It was in coming to Mayo, that I found a surgeon who understood my symptoms (called funicular pain) and he helped me. My arms were getting weak and uncoordinated from the spinal cord compression, and the surgery gave me back my coordination. I had to rehab to get strength back. I am an artist, so it mattered to me a lot.

It's good to ask questions, and I see that you are getting responses from others as well.

Jennifer

REPLY
lilyteddy33 | @lilyteddy33 | 6 days ago

I AM SO HAPPY YOU HAVE A KIND HUSBAND WHO SHOPPED AND HELPED AFTER YOUR SURGERY. I DONT HAVE BLOOD CLOTS. I WAS CHECKED BY A VASCULAR SURGEON. THE ICY LEGS STARTED AFTER COVID SO I DEFINITIELY THINK MY CIRCULATION HAS BEEN COMPROMISED. DRIVES ME NUTS, FREEZING NO MATTER THE TEMP OR THE LAYERS OF CLOTHES. BURNING FEET ONGOING. THE PAIN MGMT GAVE ME SOMETHING CALLED BUPRENORPHINE (ITS USED TO GET PEOPLE OFF OF OPIODS BUT ALSO FOR PAIN), I DON'T THINK IT'S HELPING. OCCASIONALLY HELPS W/BODY TEMP BUT OFF AND ON AGAIN RESULTS. ALSO MANY SIDE EFFECTS ESPECIALLY INSOMNIA SO HAVEN'T SLEPT MORE THAN A FEW HRS SINCE STARTING 2 WEEKS AGO. LEGS & FEET ARE ESPECIALLY BAD AT NIGHT.NOW I BOUGHT A FEW "GROUNDING" ITEMS (A MAT & A SHEET) BUT I'M NOT HOPEFUL. IT'S NOT LIKE GOING OUT INTO NATURE BAREFOOT WHICH IS TRUE GROUNDING & HELPS W/HEALING. I HAVEN'T BEEN ABLE TO BE BAREFOOT FOR THE LAST FEW YRS DUE TO THE PAIN & BURNING. EXERCISE IS DIFFICULT BECAUSE STANDING ON MY FEET IS PAINFUL. I KNOW THE COVID CAUSED ME NEUROLOGICAL PROBLEMS BECAUSE I KNOW MY BODY WELL & I'M NOT WORKING OFF MY PARASYMPATHETIC SIDE AT ALL SINCE COVID. PAIN RECEPTORS BECAME COMPROMISED, ABILITY TO TAKE MEDS IMPOSSIBLE.
MY NECK...I DON'T KNOW WHAT TO DO. I HONESTLY DON'T THINK I WOULD GET THRU THAT SURGERY AT 82 YRS OLD, A YEAR OR MORE TO HEAL & NOBODY TO TALK TO OR HELP ME THRU IT. I ALSO HAVE NO IDEA IF IT'S CAUSING ALL THE SYMPTOMS I'M HAVING IN MY LOWER EXTREMITIES.
PS..I USED TO PAINT CERAMICS..FOR YEARS. SOLD A LITTLE. LOVED IT & FOUND IT PEACEFUL BUT IHAD A WONDERFUL LITTLE HOUSE W/LOTS OF NAT'L LIGHT & NOW LIVE IN A VERY DARK APT & NO SPACE TO PAINT. PLUS MY LEGS CAN ONLY MANAGE 30 MINS OF THE SITTING & MY HANDS SHAKE. I HAVEN'T PAINTED IN 7 YRS. I ALSO HAD MY ANIMALS AROUND ME, MY SOURCE OF JOY. I KEEP PROMISING MYSELF THAT I WILL GET BETTER. THAT I MUST BE AROUND ANIMALS, VOLUNTEER, ADOPT BUT MY BODY IS VERY UNRELIABLE. LOTS OF BACK PAIN ALSO. USED TO TAKE LONG WALKS . NOW CAN'T WALK FAR, BALANCE & PAIN OVERWHELMING. YOU ARE YOUNG & YOU WILL BE OK. I THINK THE WORST IS BEHIND YOU. YOU ARE A FIGHTER! AND YOUR HUSBAND MUST BE VERY KIND.
THANK YOU FOR YOUR INPUT. J

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Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago
In reply to @lilyteddy33 "Apparently, I can only respond on my cell phone and not on a computer. I do..." + (show)
@lilyteddy33

Apparently, I can only respond on my cell phone and not on a computer. I do not understand all the computer requirements that are in place in order for me to attempt to write you back. This whole computer world drives me nuts but keep in mind that I’m very much older than you And never really learned about computers so I am relying on my speaker and all the mistakes it seems to make.
I’m so sorry you have so much to deal with and you are so young. And I wish you did not have to have further surgeries going forward. Not to be negative, but I have seen people that I’ve had too many surgeries and it is not good.
I have tried pretty much all the medication’s you mentioned and I have tried so many creams. As far as the burning, I cannot use ice. It makes me totally crazy and worse. I find that a heating pad is more soothing.
I’m really not in good care from my point of view since I feel like I’ve basically been pushed over to the side of the road being a senior. This is not important to anybody including doctors. I have not been able to find a therapist unless I can pay out-of-pocket, which is extremely expensive. And of course you’re right if I could find someone to talk to, that is a form of support. Also not having a dog anymore is a killer. I want a little senior dog and although there’s places that specialize in senior rescue, they are not Close to me. There’s a great one in San Francisco but I need to be there in person and they have mostly little dogs, which is what I want. There’s another place in San Diego, again. I cannot get there in person. My driving is limited and even at that it’s very painful since my feet carry 70% of my pain. The Neurosurgeon office tells me that she does surgery, but they cannot help me in terms of answering any of my questions about my physical battle, my inability to take pain medication.(which of course I would need with surgery). It’s all rather cold and without much concern.
I do have spinal compression, cervical compression which she said is causing my balance problems. I know in my heart that I would not be able to recover and even if I could, it would take several years so at age 82 it’s not something I feel I should even attempt.. I have so little time left to be here, to be alive, even though I can’t really call what I am alive. The pain just consumes as I’m sure it must for you.
But for your son and for your dog, you have incentive and love.
I never was fortunate to have children. Just a stepdaughter from hell.
And I am married to a man who has not been my partner for 18 years. A man without empathy or compassion. As much as this sounds terrible I am jealous that he has no pain and sleeps through the night. Other than that, he does nothing productive. He was once a very vital, active working man in a very top golfer. We actually had a life although I know now he is a narcissist. I regret that I stayed to keep saving his life. In truth, I had nowhere to run to! My family consisted of my mother who had a terrible life, and I was fortunate enough to be able to be her caretaker, her friend, until she left. I did not grow up in a family, and only started living with my mother at age 12. Long story but Will hold back.
By the way, some of the creams you mentioned have pepper and if it’s anywhere near my feet, I go insane so I’m careful not to make that mistake again
I think that is something for people who have numbness and it gives sensation to the nerves. My nerves are overactive.
My nerve damage is widespread and now coupled with back pain, balance, tremendous physical pain, I’m scared. I won’t have another dog because I question if I can take care of anything.
My husband is my biggest disappointment and my heart is forever broken. He doesn’t even try to imagine what I am going through.
I know your dog knows and probably your son and because they love you, they feel you.
I will pray for you because you are kind. And because you love animals.
I am trying to find the courage to keep going, but I want it all to end.
There is no moment in the day or night that my body is at peace. The nights are even harder because I can’t sleep at all, and my legs are desperately painful.
I will remember that I cannot use the computer to reply because even though it tells me to verify my email which I do, I cannot logon to comments except on my phone. I know there’s a way, but there is no one to ask for help.
God bless, and I wish you so much love on your most difficult journey.
If I hear from you again, I will respond. Computer wise I am not literate.
Blessings ❤️🙏🐕

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@lilyteddy33, you have so much going on. I can see why you are overwhelmed and asking what to do. @dlydailyhope and @jenniferhunter are such wonderful supports. I can see you are appreciative of their helpful comments.

I wanted to step in with a couple of items for you.
1. You can sign in to the website on any device: phone, tablet or computer. Here's how:
a. Go to the link https://connect.mayoclinic.org/
b. Enter your email and your password
c. Submit.

2. Check out https://www.findhelp.org/. FindHelp is a place to find free or reduced-cost resources like food, housing, financial assistance, legal assistance, health care, and much more. Simply enter your zip code to find resources close to you.

I know even navigating a search tool like FindHelp can be overwhelming. I suggest starting by looking for social work. Perhaps you can find a low cost, no cost social support who could help coordinate services with you.

REPLY
loriesco | @loriesco | 2 days ago

I am sorry you are frightened. I am always overwhelmed. I am by myself. I have had all my surgeries by myself. You should be on Medicare, right? So they place you in a rehab facility until you are totally ambulatory. I paid someone to care for me at my home for 2 - 3 weeks. I preferred that.
I want to suggest you get a second opinion that the surgery needs to happen because of your neck. With an orthopedic surgeon. They will know from looking at your records. That will 1) give you the piece of mind. You have to trust your intuition. I have a long story about how I was going into this HUGE spine surgery. The doctor got mad and wouldn't do the surgery! I had it done by another doctor at a different healthcare system. I had a total of FOUR opinions - all different! When I finally had a much smaller variation of the surgery with a different doctor -- years later -- I found out the original surgeon was a BAD surgeon! I was lucky he got mad at me!
There's always something really wonderful that happens with all my major surgeries. I get my life back. I also meet nice people! I always plan my surgeries at the holiday if possible. I am guaranteed to be with people, have an excuse not to go to stuffy parties and be in traffic, and I get to RELAX!!!! Good luck. Be sure you are confident in your doctors and surgeon. It means everything for your success and the support you will need after surgery when you are home.

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