Chronic Pain members - Welcome, please introduce yourself

From Grandma @peggyella to @grandmar
My husband has had cancer 5 times... 2 of them, melanoma. You wouldn’t believe the size of his scars! The first time, tubular melanoma, very aggressive. In 12/2018, they found a spot on his back the size of a dime. It took 60 stitches to remove it bc it was deep and wide UNDER the skin. It’s always better large and a lot, than too little too late.

5 times. Your husband must be so strong. CANCER SUCKS! Ihad stage 4 throat cancer 4 years ago. I'm cancer free now but it was a tough time.

@peggyella
Good Morning,
I am so sorry to hear about your husband! Melanoma is a VERY scary cancer!!
My brother-in-law was full of moles and marks on his body. I can't remember HOW they found the first Melanoma, but the doctor did. They found it behind his calf. He went to Sloane Kettering, one of the BEST cancer hospitals. The doctors said this kind was like jumping jacks and could jump to another site that is unrelated. He also became what they called a chronic cancer patient. He would get the cancer, have it operated on, stay clear for a couple of years, then it would reappear.
To make a long, sad story short. The doctor was right! The cancer eventually jumped to his brain. He survived! Finally, it went into his groin in-between all sorts of muscles and veins. That is what finally got him at age 36. Rest his soul!
I live in Florida and after my diagnosis, I was afraid to go outside!
Bless us all!
Ronnie (GRANDMAr)

Good morning, Ronnie. I’m so sorry about your loss. Truly. I know my husband, Barry, may die the next time he gets cancer. If not, he may have another hemorrhagic stroke and the neurologist said he’ll never survive another one like that. It was a miracle he survived the first one. He has a hole in the frontal lobe so his ability to handle his mood and anxiety are nil. I never know when I walk into the room what mood he will be in, I know God is using it to teach me more patience. I take care of him but he takes care of me as well. So I know you must miss your husband very much. It is hard to nurse someone with cancer.

Because God healed me from my abusive childhood, I have a passion to help other abused women. I also work with the homeless and most all of them have been abused, men and women. I am sponsoring a few women right now to guide them in the right direction to recovery. One of them nursed her husband with bone cancer for three years until he died. It put her over the edge and they found her on the sidewalk unable to tell the Deputy anything except, “my husband died.“ It is very sad.

Please forgive me because my memory is so bad… LOL… But did you write about having chronic pain? I can’t see the post. I’ve been in chronic pain from various sources for 49 years. I can’t say that you ever get used to it. I gave up on pain medicine a couple of years ago and told them to get me off of it. Because I was on the pump 10 years, I t took 11 months to wean me, but I’m glad that I did. Everything worked for a year or so, but eventually I needed more and then a different opiate.

I started out on morphine after few years it didn’t work anymore so they put me on snail venom. That worked until I started having audio hallucinations. I’m not kidding! I heard music all the time. I couldn’t make out any words but I could hear the instruments and voices in the background. No, I was not schizophrenic! LOL. It got so bad and so loud that one day I called my sweet neighbor and asked her if her teenagers were blasting a stereo. She said she was taking a nap and the kids weren’t home! Boy did I feel like an idiot. When I first told my doctor she said she had never read that but when she looked at blogs, lots of people complained about it.

So finally it was Dilaudid. When I had my last spinal surgery for degenerative disc disease, the lunatic surgeon cut the lead to my spine and I overdosed. He said it was an accident!!! My local pain management doctor and neurologist said that no surgeon accidentally cut the lead to the intrathecal pain pump. It was in his way and he was lazy. When I return from my follow-up visit I said to him, “Dr., you put me through hell.“ It didn’t go over too well. LOL. Like I would ever go back to him. For 12 days I hallucinated, Head sweats, nausea and vomiting constantly. I couldn’t even keep down water. When they finally discharge me, I was sent to a nursing home for rehab for two months. It was awful. So unless I have a broken bone or surgery, I won’t take narcotics ever again. I have had to since then and I only take them for a few days. I saw it destroyed my father. He was already an angry man, but it turned him into a raging maniac. Constant doses of hydrocodone day after day, year after year, decade after decade. If he tries to skip a few days, he has rebound migraines that make him feel like he’s going to die or wants to.

I never impose what I need to do for myself on others. Some people it works for and I’m happy for them. Have a nice day my friend and God bless you. I’m in Florida also.

Peggy

@peggyella
Hi Peggy,
First, let me say, that you are a very strong person! Your ability to take care of your husband and yourself is admirable.
I must correct you. You misunderstood my post. I did not lose my husband (thank God), but I did lose my brother-in-law to melanoma.
Yes, I suffered from chronic pain brought on by Fibromyalgia and numerouse spinal issues. For years, I tried many procedures that I thought might help, but non did. I did NOT take pain meds. I had to work, drive and think and I did not feel comfortable taking pain meds. Basically, I just suffered. After years of trying, I decided that the only course of action, for me, was surgery. If I did not have surgery, the chances of having any quality of life would have been nil.
Just about one year ago, I had my first spinal surgery. I had C5/6 replaced. The surgery went well and the recovery was quick!!! Within a couple of weeks, all the symptoms and pain I was experiencing was gone.
About 5 months ago, I had my 2nd surgery. I had what is call an X-Lift Fusion on L3/4. This surgery was very painful and the recover was VERY long! It took about 3 months for the pain to go away!
I am happy to say that I am now pain-free!!!! I do have other issues going on around my spine and it is starting to look like surgery 3 might happen. If so, I am hoping it will be more like the first one than the 2nd one. So, in the meanwhile I am enjoying my pain-free life since I don't know what the future holds.
That is enough about me!
I love the work you are doing with abused and homeless people! It must give you great satisfaction to know you are making such a difference in the lives of others. I always wanted to work with women who either has never worked or have fallen on hard times and need to prepare for the work world. Maybe one day. I cannot commit to anything because I never know from one day to the next how I will feel or what I will be physically able to do. I don't want to disappoint people who would be expecting me and counting on me.
BTW......there is certainly NOTHING wrong with asking for help for yourself when YOU NEED IT!!!! If you want to help others, you need to learn to accept help for yourself!.
I live in central Florida and used a FANTASTIC pain doc and neurosurgeon if you need one.

Best wishes to you!
Ronnie (GRANDMAr)

Thanks, Ronnie. I’m in Sarasota, south of Tampa. LOL, I guess just about everyone knows where Sarasota is. You are too kind. I get such satisfaction from helping people who are less fortunate than I. Even though one of the women showed up extremely intoxicated today and wanted to fight me. LOL. The director made sure she was near me and kept the lady in line until she left on foot. When this lady is not intoxicated, she is the sweetest thing. It’s terrible what alcohol can do to a person.

I’m sorry about your brother-in-law passing. And also for your chronic pain and multiple spinal surgeries. You’re an inspiration! Living with chronic pain, as we all know, is extremely challenging every day of our lives. Got bless you and everyone who is suffering, my friend.

The reasons that you stated regarding why you would not use pain medications are the same reasons that I quit using them. They made me completely dysfunctional and eventually did not alleviate my pain. I would rather be alert and able to drive and spend my time in ministry than to be somewhat out of pain and in a stupor and a wheelchair at home like I was two years ago. The pain does make it more difficult, but as you know, life must go on. Either that, or we can choose to give up. I chose to live in pain. I did for decades until I tried the pump, so I. can again. It’s good and quite necessary for many. I have people in my life with everything from lupus to cancer to advanced stages of AIDS. Without pain medication and medical marijuana they would have no quality-of-life whatsoever. So for them, it is a necessary evil.

The first spinal surgery in 1997 did alleviate my pain. It was cervical and I had an excellent surgeon. My recovery was quicker than prognosed even though the fibromyalgia did cause me to take longer to heal than the average person of my age.

The second more recent surgery, about eight or 10 years ago, was lumbar. I think it was the same disks that you mentioned. Did you also have a lot of instrumentation inserted? I had a few cages with nuts and bolts, but unfortunately, it did not eleminate the pain or the forward bend. I can move pretty quickly with my walker. But take it away… And my spine just wants to collapse. The pain is always there. Due to my stomach problems, I can occasionally tolerate a few ibuprofen. It gives me slight relief for a short time... not really enough to mention.

When I was at the Mayo Clinic Clinic, Jax, in 2016-17, I had two neurologists and a spinal surgeon examine me and run tests. I have a large deformation on the thoracic spine that is visible through some shirts, so I’m careful about what I wear. They told me that if I had it removed, it would just grow back. Fortunately, that particular protrusion is not painful.

The same physicians also diagnosed a pinched L/5. I was able to tolerate it until I began having sciatica on one side. Within a few months, I developed it on both sides. It doesn’t usually bother me when I am upright, but lying down is so painful it is difficult to fall asleep. I slept for one and a half hour last night and then I just had to get up.

My insomnia is so crazy, but that has become normal for me. Somehow, God has enabled me to function not only in spite of pain, but in spite of no sleep as well. LOL. I have to laugh about it because it is so rediculous! That is why I often don’t tell people about my health issues for fear that they will think I am exaggerating to gain attention. In fact, my step-daughter is one of those people. She was so unkind to me that we haven’t spoken in nearly two years. I tried to reconcile with her, but she lives in a fantasy world. So I’ve forgiven her and let it go. As I like to say, let GO... D.

I know a lot of us feel that way because unless someone has suffered, I find that they are often quick to judge and can be superficial. They live in a La La Land of their own making. That is exactly why I stress to people not to judge those less fortunate because we know how it feels when people act as if we are exaggerating our symptoms. That’s why this site is wonderful that we who are suffering with physical or emotional pain can relate to one another and encourage each other. It hurts when people act as if we are exaggerating how are symptoms or health problems.

If it looks like I’m going to require a third surgery like you are facing, I will be in touch to find out about your doctor. The hard part is that my spouse cannot stay with me while I am going through testing or surgery. It was hard enough when I was in Tampa for the last surgery and he had to drive so many miles. I am concerned about his driving and safety.

Thank you again for your support. You would be an asset to any ministry! Enjoy your pain-free days. God bless you, and please stay in contact. I’d like to know how things go for you.

I pray you and all our friends sleep peacefully tonight.
Peggy 💖

@peggyella
Good Sunny Morning!
Wow, I cannot believe how you and I are facing some of the same challenges.
The neurosurgeon I use is actually in Lutz; he also has an office in Tampa.
Sadly, my pain doctor would probably be too far for you, unless you don't mind travelling. He is located in Altamonte Springs.
We live in the Lakeland area so we are smack in-between Orlando and Tampa so we frequent both areas.
If you are interested in the docs, I will be happy to give you their information.
I just started with a neurologist, too. She seems to be very good and is in Whesley Chapel.

Have a sunny rest of the day!
Ronnie (

Hello @albiet, welcome to Mayo Clinic Connect. I'm glad you found Connect and I want to thank you for the private message. I thought I would take the opportunity to answer your message in the Chronic Pain members - Welcome, please introduce yourself discussion so that you can meet other members and learn what they are doing for treatments.

You mentioned that 8 years ago a biopsy showed that you had small fiber neuropathy. You also said you have had massive burning and pain in 1990 and 1998. After a car accident in 2004 you have multiple herniations in your cervical and thoracic spine and your pain has started again after 8 years. You asked if you need to see doctors locally before going to Mayo Clinic.

To answer your question, I don't believe you need to see a doctor locally before going to Mayo Clinic but a referral may help. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I would also like to invite @jenniferhunter and @artscaping who have posted about pain from spine injuries and conditions to see if they are able to offer any suggestions.

@albeit have you seen any doctors recently for your pain?

@albeit
The recommendation I would make is to see a neurologist who is familiar with spine injuries. If it has been 8 years since you had imaging done, you don't know if the herniations you described in your spine have progressed or if there is nerve or spinal cord impingement. When a disc is injured and bulges, it causes the distribution of pressure to be uneven, and that can cause bone spurs to grow. If the disc is damaged enough, the jelly like nucleus can be expelled through cracks in the outer fibrous layer. That can happen years after an injury because discs naturally dry out and shrink a bit as we age, and posture plays a role as well because poor posture will also cause an uneven load on the discs. Physical therapy can help try to restore the normal curvatures in the spine and reduce pain, but that also depends on what else is going on.

I am a Mayo spine surgery patient, and when I requested an appointment at Mayo, 5 local surgeons had missed understanding the diagnosis, and I had MRI and X-ray imaging that I sent in for review. I had been turned down for 2 years and none would help me. If you wish to start that process at Mayo, you might ask to be seen by a spine center neurologist first and they would make referrals based on what they find. If you possibly could be a surgery candidate, they would arrange an appointment with a specialist. I did request an appointment with a specific neurosurgeon when I sent in my imaging, and he had me see the neurologist he works with, who then ordered the tests I needed, and some consults with other specialists outside of neurosurgery. All of that was completed before my surgery consult and he had all the information he needed and he explained what he could do to help me.

Spine injuries are different in that the symptoms they cause vary a lot depending on what part of the spine is affected. There is a dermatomal map of the body that shows where all the nerves go after leaving the spine, and this applies if the problem is at a nerve root (in between the vertebral bodies). If the problem is spinal cord compression inside the central canal, it's more complex, and not so easy to understand specifically what would be affected, but that causes a lot of issues and weakness and can affect the entire body even if there is only one level of the spinal cord that is compressed. That was what happened with my case. I had pains all over my body from cervical stenosis, and atrophy of arm and shoulder muscle.

With your injuries from the car accident, there could be some additional issues with something like thoracic outlet syndrome. It can be caused by a whiplash or repetitive stress. TOS will also cause pain and numbness in arms and hands as well as decreased circulation. A lot of doctors do not understand TOS (which I have), and that is also why I came to Mayo because they can diagnose and treat it, and I needed to be where they understood both TOS and spine injuries.

Here are some links that may help.
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961
https://www.mayoclinic.org/diseases-conditions/spinal-cord-injury/symptoms-causes/syc-20377890
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://en.wikipedia.org/wiki/Dermatome_(anatomy)
https://teachmeanatomy.info/the-basics/embryology/dermatomes/

@albiet
Welcome,
I read John's response to you. I would just like to add that you should not put all your eggs in one basket as far as getting an appointment at the Mayo Clinic.
I don't about other facilities, but I've tried to get an appointment 4 times. I rejected 3 times. I was told that they had the max number of patients with my issues, even though I had been through many, many traditional and not so traditional procedures and shots.
The 4th time, I came close. I had a referral from my neurosurgeon to see a neurologist. When Mayo called to make my appointment, I was told I needed to see some sort of other doctor. You guessed it, they were full up, too.
I am just telling you all this because I don't want you to be disappointed should you not be able to get an appointment. And if you do, that would be FANTASTIC!!!!!!!!
Best of luck to you!
Ronnie (GRANDMAr)