TJ
14 posts
January 5, 2015 4:17 PM MST
Has anybody had Botulinum toxin injection into the muscle? Did you have it for diagnoses before cricopharyngeal myotomy or as a treatment? Did you get any relief?
This post was edited by tj at January 5, 2015 4:21 PM MST
Jersey Girl
Moderator
65 posts
January 20, 2015 8:02 AM MST
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I have not yet had anything done to my throat. However, I am rapidly approaching the need.
My neurologist at the MD Clinic wants me to have a swallowing test done, but he wants it done at the U of MN’s Medical College which is out of network for my insurance coverage.
I respect that he wants me to have it done closeby where he can collaborate with the ENT, but neither can I afford to spend money that I would not have to spend if I have this done in network.
It is a conundrum, and one I will have to address soon, as my swallowing gets ever so slowly worse with time.
Carol
MD
4 posts
January 29, 2015 1:00 AM MST
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Carol, have you tried to find an MDA clinic in your area. At times they will help pay for procedures and help with equipment. Just a thought.
Jersey Girl
Moderator
65 posts
January 29, 2015 6:35 AM MST
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MD said:
Carol, have you tried to find an MDA clinic in your area. At times they will help pay for procedures and help with equipment. Just a thought.
Hi MD,
Great thought, unfortunately, the MD Clinic at the U of MN in Minneapolis is the closest to me. There is another MD Clinic two hours east in Marshfield, WI but I would run into the same issue; it is out of network.
I am going to see Dr. Karuchinski at the MD Clinic in Minneapolis in about a month, as I do once per year. This time I am going to have to do the out of network swallowing test whether I like it or not.
We do have a branch of the Mayo Clinic half an hour from my home, and they have top notch doctors there. That is my in network medical system. However, Dr. K. was hoping for me to have the swallowing test and subsequent procedure done at the U of MN Medical College Center so that he could collaborate closely with the doctor(s) who did it.
I am from NY City originally and it is really hard, even after 18 years in WI, to adjust to living so far away from everything. I’ve told my husband that when we retire, wherever we retire to, that take out food and top notch medical services have to be within 15 minutes of us or I’m not going to live there, lol.
Carol
MD
4 posts
January 29, 2015 12:13 PM MST
I understood from our MDA, even with insurance they can help with some expenses. This includes stuff your insurance provider will not pay for. I had a power chair the insurance would not pay for and the MDA has a loan bank and even does some maintenance care for a power chair whether they paid for it or not. You would of course have to call the MDA in your area and ask them if some of this applies to you.
I live in a city where the clinic helps me with an OPMD Speech therapist, OPMD Neurological Eye Doctor and more. I see a group there at UNM Hospitals. It is great to be in a place where many know about OPMD and they do studies here as well in Albuquerque. I also have a primary who studied OPMD because there are about nearly 400 of us who go to the OPMD Clinic once a year and coordinate, physical therapists, speecha therapists, GI doctors and more. All of them know and specialize in OPMD.
It is difficult to live far away from everything, I had to move closer due to my OPMD. Though I donot like living in the city much.
Take care
Wishing great care
D
Jersey Girl
65 posts
January 29, 2015 5:43 PM MST
Unfortunately, my MDA office told me that their grant money will not help me with out of network medical costs. However, all costs associated with my visits to the MD Clinic are paid for and that includes the neurologist, physical therapist, genetic counselor, etc. That alone would be worth a fortune; the first time I went to the clinic for a “meet and greet”, about three years ago, they spent almost four hours with me! I was VERY impressed! I never felt hurried or as though anyone was being less than 100% thoughtful and thorough.
The MDA is very helpful. Its somewhat odd, however, they will not help me to pay for a lift chair, but they will help me pay to repair it. This applies to a myriad of other “gadgets”; they won’t help with the purchase of a stair lift either but will pay to repair it, and the list goes on.
It has changed a lot; my mom had a completely different experience with them back in the late 90’s when they would pay for more.
I never make a decision without asking them first, to see if I can get monetary assistance. You never know what they will or won’t pay for, nor when their policies change, either.
I’ve always lived by the creed, “Ask. The worst you can get is a no.” lol, and that applied to all things in life.
Thanks for your thoughtful replies, D.