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My Experience with Neuropathic Therapy Center at Loma Linda University
In 2010 I was diagnosed with a cancerous tumor in my fallopian tube. The treatment was surgery and five months of intense chemotherapy. With much gratitude to the professionals at the Mayo Clinic in Scottsdale AZ I can now, nearly eleven years later, proudly say that I am still cancer free. However, one of the side effects from the chemotherapy has been neuropathy in my feet which has become more pronounced in recent years. I also have been managing hypothyroid disease for the past forty or so years and stand for hours a day as part of my work as a soft tissue therapist. All contributory factors for peripheral neuropathy.
The neuropathy for me presented as random shooting pains/lightning bolt type sensations which had become very debilitating and limiting my ability to walk any distance. After researching and finding only drug related options, I had become discouraged. During one of what had become many a sleepless night looking online for related information I just happened across the Neuropathic Therapy Center at Loma Linda University in southern California. As a manual therapist myself, and one who has many clients also struggling with neuropathy’s, I found this approach very intriguing.
When I called the Neuropathic Therapy Center to learn more, I was encouraged to set up an online conference call with Mark Bussell, PT, the primary developer of the work, to discuss my situation and determine if I would be a good candidate for this type of therapy. On that call we determined that I would be a good candidate for this therapy. As I live out of state, we also decided a good therapy option would be to schedule for a two-week intensive therapy regime which would screen for food sensitivities and during the same time frame receive physical therapy to facilitate improvement in neurovascular function.
I was found to be severely sensitive to dairy, sugar, chicken, almonds and moderately sensitive to gluten, mild to corn. These sensitivities are not to be confused with allergy, but foods that I am sensitive enough to that they cause a reaction to normal neurovascular circulation. Now knowing this and having had time for these things to clear my system I can definitely tell you that when I eat too much of any of these foods, I can feel a reaction or a triggering of symptoms.
It has been five weeks now since completing the two-week protocol. I have been very diligent with my diet and doing my daily exercises as part of the continuation of the physical therapy protocol. There have been ups and downs, diet modification is not easy. The neuropathy symptoms I am still aware of, but I can honestly say that overall, I feel that I have achieved nearly a fifty percent reduction in symptoms and with due diligence to the diet and exercise I feel that I am still continuing to make improvements.
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Hey guys! Just thought I’d add my experience with INF here as well, in case anyone interested happens upon this.
To give you some background, I was diagnosed with bilateral TOS (all three) in Dec. 2020, and had a surgical decompression Jan. 2021 (I was 19yo at the time, and had been suffering for years with no diagnosis). While the surgery helped alleviate my venous and arterial symptoms, I unfortunately did not get any relief from my neurogenic symptoms. I’m sure you all know just how stubborn neuropathy can be. Over two years post-op, I was still in immense pain and had tried everything I could possibly find to try and get some relief, to no avail. My dad came across INF when doing research into chronic pain therapies in the US (we are Canadian) and set up a consultation with Dr. Mark Bussell (DPT who developed the therapy). He changed my life.
I was treated by Dr. Bussell and another one of their physical therapists named Paul, however everyone at this clinic is extremely kind and very dedicated to making their patients feel better. Dr. Bussell is unlike any doctor I have ever come across: kind, compassionate, dedicated - it is easy to see how much he truly cares for his patients. I had 5 weeks of therapy, and now a home program to do myself, and for the first time in years, I am completely pain-free and off of all medications.
I also made major modifications to my diet. It seems I have a minor form of MCAS (probably from the trauma to my nervous system) and so I had inflammatory reactions to gluten, dairy, chicken/eggs and soy. Cutting these out of my diet helped immensely. The modifications can be difficult at first, but once you start noticing a difference in how you feel, it makes it much easier. I no longer have the desire to eat any of these foods (as they cause me pain)!
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6 ReactionsThanks for your post.
I am just about to book in to have the same treatment.
You have given me confidence in it.
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2 ReactionsHi Julia! Thanks so much for sharing your story. My sister has been struggling with post-surgery nerve compression and we've been considering Loma Linda. We're in the east coast and are nervous about making the journey until we've spoken to at least one person whose undergone the treatment. Would it be alright to connect to learn more about how your experience was? Do let me know! Look forward to hearing from you!
Would you please tell me more about your experience-i.e. where you stayed while there-how long where you there? 5 weeks ? I do have very good insurance-did your insurance pay for alot of the Loma Linda cost? How long did it take to get your appointment? I have had terrible pain
for many years now-started when I had COVID Been everywhere in Atlanta and really getting nowhere. Thank you so much!!
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1 ReactionI would like to have contact with anyone who has gone to Loma Linda Hospital for neuropathy. I am considering going because I haven't found anything that has helped and Mayo declined my admission because they said they would be testing for the same things I have already had done here in Atlanta. Thanks, Betty G.
@bettyg81pain, I moved your question about the neuropathy program at Loma Linda to this discussion where @leslierh @juliabasa and others share their experiences.
- My Experience with Neuropathic Therapy Center at Loma Linda University: https://connect.mayoclinic.org/discussion/my-experience-with-neuropathic-therapy-center-at-loma-linda-university/
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1 ReactionThank you!!
Would you please let me know about your experience? Am looking into Loma Linda myself and would like to talk with someone who has gone there for neuropathy. Thanks!
Hi Betty,
I have had this treatment two years in a row.
Last year I found it extremely helpful and had feeling return to my feet. All at the clinic are the highest quality providers and really care about their patients.
This year the result was not quite as good as the symptoms have changed and the condition has worsened.
I would recommend going and following the diet changes and the home program, it does work.
Where did you stay? How many days? What diet changes did you make? I'm sure they check each individual patient for the changes they should make. Thanks for your response!!