HELP - How to get the MAYO Clinic review your case.

[tonyf3]

We are some exeperience with this exercise.
We called. They have a process to at least start you down the path.
We've been successful twice getting family into Mayo and treated, one for spine, one for cancer.

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www.mayoclinic.org

Good luck.

 

[Coyote Shadow Tracker]

There are times when surgery is the only option. But, surgery pain is harder to treat than non-surgical pain. I know I'm just a ray of sunshine about this. I also have neck and back issues. Plate and six screws in my neck and stenosis in all my lumbar vert. Plus transverse fracture of L1, healed on its own, hurt so bad in other places I didn't know it was fractured. I feel for you, as I know what you are experiencing. I pray you can find some relief. Do you have fusions? That may be an option.

C-2 & C-3 Fused first op. Then paralyzed from surgery. Had 2nd op and metal removed then larger metal installed. This is when the sever pain started. waited one year and then had C-4, C-5, C-6 fused. My neck is all Titanium. Made pain worse and was declared totally disabled. Lost a high 6 figure Management job. Went 3 more years and had a temp Spinal Cord Stimulator installed. After 4 days I had no pain.. The Surgeons then put in a Permanent SCS and it never worked for one year. Found out that the Lead moved about 1". Had another SCS installed by a Neurosurgeon that opened up my back spine from the base of my brain to the middled of my back. Tried over 100 electrical programs and none worked, just made the pain worse.
Been on high dose of Oxy and that doesn't work. My body is immune to opioids. Pain meds do not work.
Been through a dozen specialists over the past six years.
Hoping the Mayo Clinic can at least review my case.
I just have to power through the day whenever I build rifles, reload and shoot.

 

[belldar]

With my case it had to be accepted before they would admit me to Mayo. I didn't think I needed to go there but a couple doctors and family highly encouraged me to go and set it up for me to go there. They were interested in my weird circumstance and wanted to check it out. It was interesting but going there didn't make a difference besides finding out that severe migraines are triggered by your bodies response to making you chill out/relax(stress). They didn't even acknowledge why the doctors actually sent me there. Turns out a lot of you getting over things and better is NOT taking over the counter meds and it is in your head that you can convince yourself you don't need meds to get better. More often than not you can cure yourself with a positive mind set, good water intake, and just being healthier! Praying will get you nowhere if you don't take you own initiative to answer it yourself. There is no miracle cure in life, just common sense! Everyone seems to forget about that! In your case Sir you need to get out and move more and not post so much on an Internet forum!. Bet you will be amazed at how much better life can be.

 

[Rosebud]

C-2 & C-3 Fused first op. Then paralyzed from surgery. Had 2nd op and metal removed then larger metal installed. This is when the sever pain started. waited one year and then had C-4, C-5, C-6 fused. My neck is all Titanium. Made pain worse and was declared totally disabled. Lost a high 6 figure Management job. Went 3 more years and had a temp Spinal Cord Stimulator installed. After 4 days I had no pain.. The Surgeons then put in a Permanent SCS and it never worked for one year. Found out that the Lead moved about 1". Had another SCS installed by a Neurosurgeon that opened up my back spine from the base of my brain to the middled of my back. Tried over 100 electrical programs and none worked, just made the pain worse.
Been on high dose of Oxy and that doesn't work. My body is immune to opioids. Pain meds do not work.
Been through a dozen specialists over the past six years.
Hoping the Mayo Clinic can at least review my case.
I just have to power through the day whenever I build rifles, reload and shoot.

Have you tried any targeted nerve blocks, they chemically burn the nerves causing the most pain, they regenerate after about six months. Rinse and repeat. Helped a friend who couldn't get out of his chair without help. He's back hunting, as long as he has someone with him. I don't know if that will help, or if you have tried it. Only wish you the best. I may sound a little, or a lot clinical, I've come from a medical background, forced to retire as you have. I know the feeling of leaving a good paying job. BiLL

 

[Rosebud]

With my case it had to be accepted before they would admit me to Mayo. I didn't think I needed to go there but a couple doctors and family highly encouraged me to go and set it up for me to go there. They were interested in my weird circumstance and wanted to check it out. It was interesting but going there didn't make a difference besides finding out that severe migraines are triggered by your bodies response to making you chill out/relax(stress). They didn't even acknowledge why the doctors actually sent me there. Turns out a lot of you getting over things and better is NOT taking over the counter meds and it is in your head that you can convince yourself you don't need meds to get better. More often than not you can cure yourself with a positive mind set, good water intake, and just being healthier! Praying will get you nowhere if you don't take you own initiative to answer it yourself. There is no miracle cure in life, just common sense! Everyone seems to forget about that! In your case Sir you need to get out and move more and not post so much on an Internet forum!. Bet you will be amazed at how much better life can be.

Migraines are bad, my wife suffers from them. But he has a structure issue. His spinal discs have degenerated to the point where they have had to be replaced with cadaver bone and fused together, then a titanium plate and stainless steel screws placed in the body of the vertebra. This is called a fusion. The effected part of the spine no longer moves. Fused, Once all that carpentry work is done nothing is the same. As I stated before, surgical pain can be worse then the pain you experience before the surgery.

 

[3chester]

With my case it had to be accepted before they would admit me to Mayo. I didn't think I needed to go there but a couple doctors and family highly encouraged me to go and set it up for me to go there. They were interested in my weird circumstance and wanted to check it out. It was interesting but going there didn't make a difference besides finding out that severe migraines are triggered by your bodies response to making you chill out/relax(stress). They didn't even acknowledge why the doctors actually sent me there. Turns out a lot of you getting over things and better is NOT taking over the counter meds and it is in your head that you can convince yourself you don't need meds to get better. More often than not you can cure yourself with a positive mind set, good water intake, and just being healthier! Praying will get you nowhere if you don't take you own initiative to answer it yourself. There is no miracle cure in life, just common sense! Everyone seems to forget about that! In your case Sir you need to get out and move more and not post so much on an Internet forum!. Bet you will be amazed at how much better life can be.

You're right on the money!!

 

[Coyote Shadow Tracker]

Have you tried any targeted nerve blocks, they chemically burn the nerves causing the most pain, they regenerate after about six months. Rinse and repeat. Helped a friend who couldn't get out of his chair without help. He's back hunting, as long as he has someone with him. I don't know if that will help, or if you have tried it. Only wish you the best. I may sound a little, or a lot clinical, I've come from a medical background, forced to retire as you have. I know the feeling of leaving a good paying job. BiLL

Yes I have had at least (6) RFA (Radio Frequency Ablaction) on each side of my spinal cord AND Epidermal injections. Nothing worked.
I also went to a place in Louisiana and had a Vudu rifle builder rub Vudu firearms on my spine. Didn't work. Then had a Shaman and Acupuncture.

 

[Lee7588]

This is the aftermath of what my brother-in-law just had done. He is now walking better and is in less pain than what he was before surgery. He is still healing. The doctor that did his is in Lakeland, FL just east of Tampa. If you would like the Dr info I will be happy to get it for you. My BIL says his Dr is the best he had seen and I believe he had gone to the Mayo in Jax.

 

[Varmint Hunter]

I have nothing to offer but my best wishes for your improved health. Be well Len and thank you for your service to our country.

 

[waspocrew]

Hi Len,
I'm sorry to hear of your troubles. As others have stated, I believe you can reach out to Mayo to request appointments or you can ask your physician for a referral.

I spent the last 5 years at the Cleveland Clinic for my Dermatology residency and Mohs surgery fellowship. We had many many patients that were referred from out of state. Again, I'd touch base with your Dr. regarding the referral to Mayo. I'm biased with my training, but if you don't get anywhere with Mayo, Cleveland Clinic (#2 Hospital in the world) is a great option to look into as well.

Neurological Institute | Cleveland Clinic

The Neurological Institute is a leader in treating and researching the most complex neurological disorders and advancing innovations in neurology.

my.clevelandclinic.org

Follow the link above and click "request appointment" on the right of the screen.

 

[Coyote Shadow Tracker]

This is the aftermath of what my brother-in-law just had done. He is now walking better and is in less pain than what he was before surgery. He is still healing. The doctor that did his is in Lakeland, FL just east of Tampa. If you would like the Dr info I will be happy to get it for you. My BIL says his Dr is the best he had seen and I believe he had gone to the Mayo in Jax.

Wow we wish the best for your brother in law.
If I posted the pictures and x-rays from my surgeries it probably would make some members have upset stomachs.
Praying for your brother in law.
Please PM us the Dr information.
God Bless
Len & Jill

 

[Coyote Shadow Tracker]

Just an updated that I don't want to post.
I have had several posts the past years on my spinal cord issues.
I saw my neurosurgeon a with the results of my MRI and X-Rays and was told he cannot do anything more. The last surgery I had from him made the pain worse.
Today I went to my Pain Clinic and they got a new Dr, in. She was very rude and condescending. Instead of helping me with more options for pain meds, she is reducing my current pain meds and said it is because of the new guidelines of the FDA, DEA. So not only is my pain out of control, but I am also getting less medication. Another thing is all the pharmacies are limited to opioids so everyone is out of the meds I need when my prescription is due.
Now 5 minutes ago I got a call from the Neurosurgery Department at the MAYO Clinic, and they told me that due to the high volume of cases that they can NOT take my case on at this time or any time in the future.
Thanks to Obama Care, Government Control, Illegal Alien Health Care.
I am also a Vietnam Vet, but all the BS I went through the years with the VA I can't see ever going there again.
GOD BLESS AMERICA!!!

 

[Berrnard]

no experience with mayo but i have had my own medical issues with multiple abdominal surgeries with my crohns and a 20hr brain surgery with my tumor. and a lot of hospital and doctor experience that comes with it.
are you tied to your neurosurgeon for some reason?
if not, the best advice i can give and used myself a couple times. get a 2nd or 3rd opinion. read online reviews of docs that your insurce covers and call and ask if they take new patients and explain that it is urgent. then get more advice and probably better personalities. and a better shot at a referral. walking in cold to a facility(mayo or another hospial\clinic) is a lot different than having a dr. referral

 

[Lee7588]

Just an updated that I don't want to post.
I have had several posts the past years on my spinal cord issues.
I saw my neurosurgeon a with the results of my MRI and X-Rays and was told he cannot do anything more. The last surgery I had from him made the pain worse.
Today I went to my Pain Clinic and they got a new Dr, in. She was very rude and condescending. Instead of helping me with more options for pain meds, she is reducing my current pain meds and said it is because of the new guidelines of the FDA, DEA. So not only is my pain out of control, but I am also getting less medication. Another thing is all the pharmacies are limited to opioids so everyone is out of the meds I need when my prescription is due.
Now 5 minutes ago I got a call from the Neurosurgery Department at the MAYO Clinic, and they told me that due to the high volume of cases that they can NOT take my case on at this time or any time in the future.
Thanks to Obama Care, Government Control, Illegal Alien Health Care.
I am also a Vietnam Vet, but all the BS I went through the years with the VA I can't see ever going there again.
GOD BLESS AMERICA!!!

I wonder if you traveled down to Jax and went to Mayo's er with unbearable pain in your back if they would admit you that way and get to see the Drs you need to see