Putting my money where my mouth is: NUCCA

Wino,
Thanks for sharing, and I hope things work out for you.

Hank,
Regarding your theory on people being less likely to have a virus if they are bilateral, I do not think this is correct. Dr. Gacek, who has treated hundreds of cases, told me very specifically that there is potential for the virus to activate in the opposite ear, and that it is wise to take antivirals as a preventive. This is based on actual studies he has done and evidence that he has collected. I don't claim to know how it all works and what makes the virus activate in one place or another, only that it can and does. If anyone wants to contact Dr. Gacek personally, I am sure he can explain the science behind his findings.

 

Thanks, Jordan. We all have our opinions and I give my reasons. I would be interested to know how he believes the herpes virus would travel from one 8th nerve to the other while affecting nothing in between. Like I said, I believe it is possible, however much less likely for a bilateral Meniere's sufferer to have a viral cause than an upper cervical cause. I expect that your doctor does not even believe in the upper cervical cause. So we have another area of disagreement. Probably more.

 

I do not know what Dr. Gacek believes about upper cervical causes, and I would not want to make any assumptions about that or anything else. As far as I know, cervical vertigo is acknowledged by the medical community, and I have not read anything to the contrary. Have you?

 

Is Gacek responsive to e-mails? The reason I ask is that my local ENT seems so deadset against even trying anti-virals that I wonder if maybe he has some recommendations for someone in my area who will give it a shot.

 

I suspect the opposite, it is more likely to be viral if it is bilateral.

 

You see, we all have our opinions. And I always give my reasons.

 

Can fullness without vertigo or dizziness be the result of a neck injury? And can arthritis in the neck have the same effect?

 

Wino

Im so sorry you are suffering and I just wanted to wish you the best and tell you that I truely hope you can find some relief.

 

Awesome Wino for giving NUCCA a whirl! I heard that doc is good! I have had great success with NUCCA and have been going since last Oct. I go once a month now and very stable. Don't be surprised if you hit a point where you have issues and then boom you are better. I had a bad month the second month after starting but didn't give up and stuck with it. I think it was just the phase of getting my head on straight. I have since been driving allover and doing vacations. Good luck and looking forward to reading your progress!!

 

I have been bi-lateral from the start. I have more that one herpes virus in my system and my C-1 was out of adjustment. Taking antivirals and adjusting my C-1 has had no effect on my MM, although I still take antivirals for other issues and I continue to see an Upper Cervical Chiro to handle lower back pain & hip issues.

Just goes to show that not everything is viral or cervically related. I don't know my cause but surgery has eliminated the vertigo & fullness.

 

hey wino!
i want to wish you the best with all of this and will be eager to hear of your results. i think we're all inclined to lean a certain way or another in as far as what we believe is worthwhile to pursue as treatment for our conditions. the fact that you are going into this with as open minded as possible is great. i assume since you've been with an ENT for so long that you'll have hearing tests from your past and possibly some other tests done as well. are you considering, after giving nucca a reasonable enough time period to work, having these tests repeated? that would be some great evidence to see and i truly hope it's for the better!

as far as dr. gacek and e-mailing goes, just wanted to share that i e-mailed dr. richard gacek a few months ago and did get a response to the question i had. (aren't there drs gacek-as in father/son??) if this is the right one, here is his e-mail address if you are interested... [email protected]. he didn't seem to mind at all answering my e-mail. i kept it VERY short and to the point. it was at most 4 or 5 sentences long and i got the reply i was looking for.

anyways, good luck to you!!

 

and by the way, regarding dr. gacek...i was asking basically for a second opinion on the next treatment to consider in my situation, he didn't recommend antivirals to me which i thought was interesting. he said the same thing that my Oto had been telling me and said i should do the gent. i guess because i'm in the later "stages" of this disease.

 

Hey Wino,
Thanks for sharing your story and treatment.
I have written Dr, Gacek and he does respond.

[email protected]

Somehow I missed Wileryrileys post?!
This is the address I had when I wrote last year.

Hope it works for you!

 

I think bilateral is an example of the virus becoming active again. Many parts of the body can be affected by a virus and it is not necessary that they be physically close to one another. For instance, cmv can affect the eyes, the spleen etc etc, organs do not have to be close to one another to be affected by the same pathogen.

 

Good point, June. In my correspondence with Dr. Gacek, he did not state that the virus "travels" along the nerve from Side A to Side B, only that it has good potential to activate on the other side.

As others have stated, Dr. Gacek is responsive to e-mails and also seems keen to help people as much as possible.

 

Okay, guys, super busy day today and I just now am getting a chance to do my "real time" update:

As noted above, after re-starting prednisone orally on Friday evening, I had two days of normal hearing. I woke up this morning and my hearing was way low again. Not as low as before the prednisone, but just not very good at all. It didn't change much before my 2:00 PM appointment with the NUCCA practitioner, Dr. Gumberich.

I got to the chiro about 10 minutes early for my appointment, and he had me fill out another extensive "review of systems" type of form that asked very specific questions about symptomatology in virtually every system of the body. When I finished out the form I was called into the exam room for another discussion with the doctor. The first thing that struck me is that he had my x-rays lined up very neatly on the view-box when I walked in. The x-rays were all marked up with his hand-written notes, the various cervical spine levels were clearly denoted and one of the x-rays had a series of measurements and calculations written on it documenting the doctor's findings regarding the degree of subluxation and the calculation of force he felt would be needed to correct it based on the numbers.

At that point, the doctor walked me through my lateral x-ray and showed me that I essentially have no lordosis (the normal curvature of the spine) in my cervical spine, which basically meant that the x-ray showed my C-spine as being almost completely straight. X-rays do not show actual discs, but what they do show is the size of the disc spaces between each vertebrae. The doctor showed me that I have very good disc space height at every level EXCEPT for at C6-7 where he saw clear evidence of degenerative disc disease. Not advanced, but enough to be of concern. He explained that the reason for this is that C6-7 was bearing too much of a load since it is essentially supporting the full weight of my head and cervical spine without the assistance of the normal curvature. He further explained that this is a condition that is treatable with chiropractic therapy. As an example, he pulled out films from another patient of his that is the same age. He showed me the pre-treatment films (slightly worse than mine) and the post-treatment films (showing the normal lordosis). To the doctor's credit, he made sure to tell me that this does NOT mean he can cure me. Rather, that the condition CAN be treated in patients and should be addressed by a chiropractor. No guarantees were made, and he underscored this point repeatedly. At the same time, he felt that it was something that could be treated with a reasonable chance for success.

The next thing the doctor did was to show me the part of the film that revealed a misalignment of the axis (C-1). I don't recall if he gave me the measurement of the precise degree of misalignment and I just didn't hear it, or he only spoke about it generally. What I do recall is that he told me the atlas was shifted to the left. To confirm the diagnosis, he did a series of clinical testing. He stood behind me and pressed down on my head until I told him I felt tenderness. When the pressure was applied, I did feel a "twinge" in the left side of the neck. He then pushed my head downward to the right, and this caused no pain or discomfort. He did it to the left, and again I felt a twinge in the left side. He saw these results as confirmation of the x-ray findings. He then tested the reflexes in my biceps and in the wrists, and those were fine. This was good as it showed that any pathology in my neck had not progressed to the point of causing peripheral damage. He once again had me do active range of motion where I moved my own neck from side to sode, and again I was completely fine on the right and limited to 3/4 on the left. Finally, he measured my leg lengths for dicrepancies. I didn't see any actual measurement myself as I was lying down, but he told me that my left leg was 1/8" shorter than the right, and this was consistent with the physical exam and x-rays.

After going through all of that, the next thing he told me was that today he was going to only do a "test" manipulation. In other words, he explained that despite the best efforts and techniques, there are some patients whose atlas simply cannot be manipulated. There is no way to know that until you try it once yourself. So, rather than give me a treatment plan, he wanted to attempt a manipulation and see if I was even a candidate for continued care. He had me lay on my right side on a special table, and he placed a padded head board inder my head. My right ear was resting on the headboard, and the idea was that this would create a fulcrum wherein the application of downward pressure would allow him to move the atlas. He then stood over me and felt with his fingers until he could sense where the atlas was. At that point, he used the palm of one hand as the contact point with the atlas, and with the other hand he applied a very quick and focused pressure on the atlas. There was no "cracking" (cavitation) sound, but I could feel a very slight grinding sensation. The actual adjustment lasted less that 20 seconds. Two pushes and I was done. Now that he knows my atlas is moveable, he plans to write up a care plan for me tonight and he will discuss it with me on the next visit Wednesday morning (at 9:00 AM), where the next adjustment will occur. After the adjustment he measured my legs again and reported that they were now even.

Subjectively, I can tell you that right after the adjustment I felt a sense of warmth in my neck. Almost like when blood flow returns to your leg or arm after it's been asleep. I did not notice any difference at all in my hearing (and I was later proven to be correct, because I had an audiogram two hours later that showed my hearing was the same; more of that in the next post). I can say, inequivocally, however, that whatever it is he did immediately resolved the range of motion restriction in my neck. I can now turn my head all the way to the left just as easily as I can on the right. Why? Don't know. I just can. It hasn't changed anything else for me, and I frankly didn't feel any difference in my walking despite the correction of any leg length discrepancy. This is not to say I expected anything miraculous to happen on one visit, but just to document what has and has not happened so far.

Two hours later, I went to the ENT for my third and final dex injection. I will add those details in my next post (for some reason, when posts get real long it causes the reply box to get really jumpy and I cannot see what I'm typing ). In any event, what happened at the ENT is equally important for the purposes of documenting this journey.

 

So, on to part two of my day.

After leaving the NUCCA office, I headed over to my 4:00 PM appointment with the ENT. As soon as I got there he sent me straight to the audiologist for an audiogram. I told the audiologist right up front that my hearing had been bad all day and had only very slightly improved as the day went on. At least enough to be functional in conversation. But that I fully expected a poor audiorgram. The test was conducted and I was unfortunately proven to be correct. My low frequency hearing loss had improved by only 10 dB since the time of the last audiogram. This is despite two rounds of oral prednisone, two dex shots, 4 acupuncture visits and now one NUCCA adjustment in the intervening time.

The ENT took note of evrything and seemed disappointed with the lack of response to steroid. We discussed my concerns that I am becoming refractory to steroid treatment, and he echoed my sentiments. On the bright side, now that steroids seem to be losing their effectiveness for me, he finally FINALLY agreed to give me a prescription for antivirals. He prescribed some Valtrex for me. Also, his office has a deal with some neurotologist who is a professor at the University of Miami, and he sees patients in the office twice per month. It just so happens the neurotologist will be there tomorrow and they made an appointment for me to see him at 2:45. We are going to discuss further treatment options. Right now, the antiviral prescription is only for one week, but I'm hoping the neurotologist extends the trial for at least a month. We'll have to see.

I dropped off the prescription at the pharmacy on the way home, but they cannot fill it until tomorrow. So for the time being I am holding off on trying that. After all, I am still taking the L-lysine so I don't see the harm in holding off another week or so before introducing the antiviral to my regimen. Plus, it'll give the NUCCA chiro at least another shot at seeing if his approach works.

The one thing that sucks for me is that it seems this third dex shot in 7 days has really bothered the heck out of my ear. My eardrum itself feels painful and numb at the same time. He also overloaded me with steroid so I still get the sensation of bubbles popping inside my ear and my hearing is muffled. The muffled sound is clearly mechanical from the fluid, as it feels completely different form the normal MM distortion. Plus, each time I feel a bubble pop I can tell my hearing improves just a tad. I'm almost back to normal right now some 7 hours after the injection. I also took some Advil for the ear pain.

So that brings us up to speed for now.

 

It sounds like you are really working hard to deal with your symptoms and get relief. It takes courage to be proactive...or perhaps you are just fed up with feeling sick!

My doubt is that you may never really know what exactly worked to help relieve your symptoms since you have a few things going on at once. This doesn't seem to be purely about NUCCA. My wish for you is that your combo of treatments helps you overcome your situation, however, how will you (and us) know what exactly helped?

 

Nucca takes more then one adjustment. I have been going for close to 3 months now. It takes time for you to hold each adjustment, and you will mostl likely throw that alignment out a few times before your body gets use to the new position. good luck

 

Thanks, Wino, that was an excellent write up. Your C-6/7 degenerative disc is most common. That vertebra is a sort of hinge point between the thoracic and cervical verterbrae. It is the one most likely to develop a bulge or herniation. Symptoms are generally either some pain in the arm, and/or numbness in the fingers. A bad disc in this location can make your adjustment precarious. Because each vertebra sits atop a disc, if a partcular disc is, say, deflated, on one side, especially that one, then the vertebra above it finds it difficult to stay in line.

So many folks here who have these symptoms also have straight necks. Winde's neck was straight. It now has some curvature, but it has taken a long time. She also had a herniation at C-6/7, as verified by an MRI. An MRI might be a good idea to really look at that disc. If you have any symptoms, like the arm pain or numbness, your doc might order it for you.

I do not see where you listed tinnitus as a symptom. Was that an oversight? Many times tinnitus is one of the first symptoms to be affected by this treatment. Also, did your shoulders and neck have any tilt going in? I did not read that from yesterday?

Also, yesterday I had asked about any head or neck trauma in your history. Any to speak of? Something threw you off.

Continued best luck to you. And as njspingirl pointed out, this will take time. The treatment plan will very likely be in the low four figure range. So do not be shocked. It is what it is.

Hank