I did an eContact through my hospital but wondering how long it usually takes and if they contact me to ask questions. Thanks!
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Hello @lrlrl. Unfortunately, that may be a question that is too specific to answer and would be best answered by the appointment office, https://www.mayoclinic.org/appointments. If this is the site you have used, it does state that they will try to respond to you within three business days, but depending on volume, it may be more. @lrlrl, if you wouldn't mind sharing, did you do an online request with the help of your current provider?
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My provider made the contact directly within their partnership program. I am in the dark from my provider. I called Mayo Nero and was told who the Dr. was that will review the request and then send it to my provider. She was to look at it Monday. I have not heard. I am nervous as if they say no, where do I go syndrome-LOL
My neurologist did an eContact with Mayo Neurology. I am waiting to hear from Mayo through my neurologist I am scared. I have had 4 back surgeries. My last was an L5/S1 fusion on June 08, 2019. In April my pain returned worse than before fusion. I did 2 epidural sessions and PT with no success.
I was then referred to the Unversity of Iowa Neurosurgery for a 2nd opinion. My Neurologist as not comfortable making another surgery recommendation.
She said due to the heart issues she wanted me to see the University. They did not see "conventional surgery options." They recommended a nerve stimulation placement in my back. (I have turned that down)
I went to the ER last Tuesday due to pain and was admitted to research meds I could take as an interim pain reliever. ( I do not like pain meds)
So, I am on the meds and waiting to hear from my Neurologist.
I don't know what I will do if Mayo says no.
My hope is that if the Neurologist who is looking at my information at Mayo passes it on to someone if she can't see a path.
I want off Oxy asap. I read 2 weeks is usually the max.
I was 98% fixed after fusion until the 2nd week in April.
I too have had 4 back surgeries and had a spinal fusion at the L5-S1 as well in 2013. As soon as my back was recovering and having less pain, I developed a nonstop pain in my right big toe. It felt like my toe was a balloon that was over filled, or that someone was always standing on my toe. Nonstop. Unbearable to the point I had to start taking pain meds, including oxy. I was finally diagnosed with CRPS, or Complex Regional Pain Syndrome. It got worse and moved to left side of foot, developed neuropathy in my right foot, started having nerve pain coming from within my thighs, as if pins and needles were sticking out, and sometimes a sharp pain like a poker stick shoving into my lower back from my tailbone. So I know where you are coming from. I had a Medtronic Neurostimulator for over a year with implants lined up against each side of my spine. After literally 100s of adjustments, I had surgery to have it removed as it did not relieve any pain. So I can totally understand your pain and frustration. I have tried epidurals, acupuncture, laser therapy, PT, and I could go on and on.
I just recently started using MayoConnect, and it’s really helped me realize I’m not alone, and that Drs are hesitant to advise alternatives. My Neuro Dr, would respond to my alternative medical treatments with not much thought or response. Just hope it helps. They try their best, and when it comes to nerves and pain, there is still a lot of uncharted territory and that is why they usually throw their hands up and say- deal with it.
This site is an advocate for yourself, with others to offer support and options to help with your condition.
Just recently I have found that a treatment called Myofascial release therapy, or MFR, and it’s been very effective after a few treatments for me. It’s not a cure all, but it has dramatically reduced my pain to a tolerable level on many days. I would recommend that you research this therapy and locate a therapist who specializes in MFR.
Stay strong and with the help of the great coordinators here on Mayo Connect, they might be able to offer more options. Good luck. Mitch
Update. I joined a group on pre-dementia. I read the above and have no clue as to what I was referring to.
I ended up having a POEM procedure at Mayo. They could not treat my dysphasia. This is scary.
So sorry it appears they couldn’t help you! I, too, have the same concern, especially after spending mega-bucks to get/stay there (MN).
One of my fears is that they’ll want to do more surgery (I’ve already had 7); however, if (and it’s a BIG if), if it can give me relief from 16 years of pain, it just might be worth it!
Decisions, decisions…..and so far away from home, too!
@mlross4508 Mitch, I'm glad you find myofascial release work helpful! I do too and I talk a lot about it here on Connect. I wanted to share our discussion about MFR and the link for a provider search for everyone who is curious.
Neuropathy – "Myofascial Release Therapy (MFR) for treating compression and pain"
I am a spine surgery patient (fusion C5/C6) and also have tightness in my neck and shoulders from thoracic outlet syndrome. My physical therapist uses MFR to work on all of that, and it helps a lot. I do need to do some self treating with home stretching to maintain my progress and keep it all from tightening up again. MFR also helps some people with neuropathy. It gets tissues re-hydrated and moving again, and that's all good.
I also have a request in and wat told that it would be spring for a second opinion. I'm not sure I can wait that long!
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