Originally Posted by shanebox

Hi Mark

I am a frequent visitor of NT, yet this was my first post. I have appreciated your input on many subjects, just as I do here to my query.

Please don't mistake my post for a promotion of this company (thanks for the tip about bold text). I have both some hope and also some skepticism in their offering, hence my desire to reach out to others to get some more info.

I'm two years into my PCS, still struggling with chronic headaches, sleep disturbances, exercise intolerance, and fatigue. I also have a 14 month old who has often made the recovery more challenging at times. I have tried many avenues including traditional medicine, vitamins, cbd oil, exercise, and many eastern medical approaches. you name it, I feel like I've tried it.

I am a physician assistant working in medical research (mostly cardiovascular). I do share your incredulity in the claims they make about vascular re-establishment in the short time frame of treatment. They do however perform a post functional MRI, and claim consistent, objective evidence of re-establishing NVC consistent with normative data, which if true is very promising. They also re-image some patients about a year after treatment, showing stability in their treatment and continued improvement in symptoms with adherence to home exercises they give you to continue the treatment. Remember, they don't need to create vascular changes per se, they just need to re-establish the existing physiological NV relationship that was in existence before injury (get the train back on its tracks). so plausible, I suppose, but probable, not sure.

I have not seen their symptom questionnaire, but am curious as to how you propose to measure improvement in symptoms, as they are by nature subjective. The questionnaire is also only half of the measurement of results. the other being the findings on the post functional MRI, which are objective.

I don't doubt their functional MRI capabilities of diagnosing abnormal activation patterns. They have published multiple papers to back this up. I do wonder about the efficacy in their treatment and if it really is reducing symptom burden like they claim it to. I have a friend who corroborates this. I am curious about the one NT participant who claimed no benefit as this is not in alignment with what they told me over the phone. Their claims of improvement have been more all-encompassing, with the exception of some malingerers seeking legal action.

thanks again for your input, any additional info you can share will be helpful in my decision to fork over this kind of money or not. An average symptom reduction of 65% would be hard to turn down for $8K.

Originally Posted by Mark in Idaho

MicheleV,

Welcome to NeuroTalk.

ShaneBox has not posted since January.

What symptoms are you struggling with? Headaches, worse with any exertion or loud noises, even worse with minimal mental effort. Cant't read, watch TV, do much on computer. Nausea, much worse riding in a car! Eye symptoms-double vision, eye strain, trouble focusing for very long.

What things have you tried?

I've had some balance therapy, vestibular PT. I had nystagmus and BPPV and was much improved with the PT maneuver to correct that.

Saw a neuro-ophthalmologist. I have convergence insufficiency and double vision. I have done eye exercises and patching. But recently was told to stop for awhile because the headaches are still so bad they thought that may be making it worse.
Saw a neurologist. I was started on Trokendi XR- long acting Topamax for migraine headache prevention, helped a lot with the light and sound sensitivity and helped with the dizziness, allowed me to be able to move my head more naturally. Headaches are now less severe but still present daily and worse with exertion, noise, mental effort.

What are your daily activity levels like?

I've great if I do nothing! No symptoms at rest! But I've been all over the place from strict rest to PT 3 times a week to brisk walking 2-3 miles twice a day. Currently, I walk very slowly 1-2 miles twice a day keeping my heat rate 80-90 max. I am not doing any eye exercises at all now for about a week. Not working. Not driving. Not doing any of my usual activities like singing in two groups. Singing, even trying to read my music, makes my head really bad!

Do you get good sound sleep?

Originally Posted by todayistomorrow

I just did a brain map which showed why my sleep is affected and my brain fog(ADD they call it).

Thought insurance would cover it but was wrong. 30 sessions is around $2100.

What makes these places that use fMRI so much better? rTMS I’m also interested in and seems to act similarly as NF but more advanced. That’s more costly but insurance might approve it for depression.

Originally Posted by Mark in Idaho

Michele,

I have three ideas for you.

First, read the Vitamins sticky at the top of the index page. Note the soft ice recipe.

Second, consider the likelihood that you have suffered a subtle neck injury. It can cause many of the symptoms you have. It will not image because it is just a subtle injury that causes upper cervical instability. This can be problematic during sleep. It made bumpy rides in the car a problem. Just turning my head back and forth to scan the back yard when picking up after my dogs would trigger symptoms.

I did a lot of neck icing and focused on good posture during sleep and rest. Gentle traction and mobilization by a PT or chiro helped. No 'twist the head and pop the neck' chiro work. No range of motion exercises until after months of limited motions to help strengthen and stabilize the neck.

Third, you may have a sleep disorder due to your neck or other PCS issues. A recording Pulse Oximeter to track your pulse and oxygen levels as you sleep could be helpful. I developed Central Sleep Apnea that was triggered by poor head and neck posture. I would have stressful dreams, fitful sleep, foggy days and sleepy spells during the day. Once I resolved this, my improvement was noticeable.

Have you had your hormones assessed by a neuro-endocrinologist. Many have found it to be helpful.