Could Dr. Henderson be wrong or should I just accept that I don't have CCI/AAI?

[HappyClam11]

Hi everyone. I am new to this forum, so I apologize if this post is not perfect; I tried to make sure it follows all of the rules. I believe that I have some type of cervical instability as my symptoms match and after trying cervical traction, I became even sicker with sever body pains. So I reached out to Dr. Bolognese, Dr. Henderson, and Dr. Patel. They all gave me appointments, the first two only after reviewing my medical records. My appointment with Dr. Bolognese and Dr. Patel is not until July 9th and August 20th, respectively. However, I was able to meet with Dr. Henderson already. On April 26th, after looking at the scans he requested, he told me that I had atlantoaxial instability and probably Ehlers Danlos syndrome over a video appointment. Regarding the atlantoaxial instability, he said he was almost one-hundred percent sure but that I needed to get part of the CT scan redone because I had only turned my neck 65 degrees, not the full 90 degrees. He said this was important because I was at about 40 degrees but I needed to be at 41 degrees for insurance purposes. He then told me that I should redo the scan and then come to his office in person. He said I would likely require a neck collar and physical therapy, but that if that did not help within 6 weeks, that I would require surgery.

But then, I went to his office about two weeks later with the scan and after looking at the scan for about 3 minutes, he casually said “this is a perfectly normal neck, no atlantoaxial instability.” He also said that now my neck was at about 35 degrees, which is a huge difference. I was surprised because he seemed so certain before and how could my other scan show instability but this scan show a “perfectly normal” neck. He got defensive when I tried to get more of an understanding about how this could be, and I still don’t really understand what happened. He wouldn't explain to me how this was possible. But he said I am not unstable and that is that. He did confirm that I have Hypermobile Ehlers Danlos Syndrome though.

Now, I am at a loss because I am still obviously very sick without an explanation. And I feel like this is a very weird situation where he told me I had instability and then changed his mind. I wonder if he could be wrong and/or if anyone has had an experience like this with Dr. Henderson or one of the other doctors? Also, has anyone had one of the doctors tell them they have no instability but another doctor tell them they do have instability…and if so, how did things work out for you?

Thank you to anyone who answers; I am very confused and would greatly appreciate the help!

 

[SisterMarita]

Hey HappyClam11. So sorry I haven’t replied sooner—between getting an account approved and finding energy, it took a few days.

The short answer is yes, I have had a somewhat similar experience with Dr. Henderson, and then went on to see Dr. Bolognese who confirmed I definitely do have CCI.

I have a bit more experience to draw on than most people because my brother is also a patient of Dr. B, but tried to get in with Dr. H at one point as well. So my family has navigated these relationships twice.

Here’s the long answer:

I never worked with Dr. H directly, but rather I saw a new doctor in his practice, Dr. Narayanan, who I absolutely love. She’s very compassionate, interested, and energetic, and she really wants to help. I got an upright MRI with flexion and extension that showed I had forward-backward instability, and had an extremely positive experience wearing a neck brace. She had me get a CT with rotation next, but I was unable to rotate my head far enough for the scan to show what they needed. She also wanted me to see a special geneticist to ask about EDS, since I don’t have any EDS symptoms except CCI. But the geneticist was booked out a year.

It started to become a little odd—we had discussed surgery at one of my earliest appointments but yet I was getting the sense that she was stalling. Finally I went to see her in person to discuss surgery, but when she went to run my case by Dr. H (she’d left the door to my exam room open so I heard their conversation ?), he quickly dismissed my case to say I should try some common POTS medications and that those fixed almost every patient like me. I actually poked my head out of the room to tell him I’d tried those meds already. He seemed confused and just kind of walked away.?

Dr. N then spent a long time with me and my husband trying to explain things. She explained (in different words—this is my understanding after processing what she said) that the diagnostic criteria Dr. H operates under includes positive scans, EDS diagnosis, pain at the site of instability, and positive results from a collar trial. I only had 1.5 of those things. 1 out of 2 positive scans, and positive collar results. Without pain or EDS, I didn’t meet enough of the criteria for surgery. Dr. H has a lot of confidence in his diagnostic requirements and has refined them over years, and if you fall outside of those, he’s not confident enough to act. There is also very little research published on the MECFS and CCI connection. Despite many surgeons like Dr. B doing lots of CCI cases to relieve MECFS, Dr. B hasn’t published anything about it, and without those publications, other surgeons aren’t able to learn from him.

I also learned through my brother’s experience that Dr. H does not take results from traction into account at all. Apparently his thinking is that everyone feels better in traction (himself included), so it’s not a helpful diagnostic tool.

In contrast, Dr. Bolognese is all about the traction. Traction is his #1 diagnostic tool. When you see him in July, he’ll probably give you the spiel about looking for the diagnostic “smoking gun.” For him, the smoking gun is correlating your symptoms to traction, and if he thinks your results with traction at home are significant enough, he’ll have you come in for invasive cervical traction at his hospital, where he’ll take x-rays of your neck in traction and also have you report on how you feel. He measures vertical instability and settling (up-and-down instability), whereas Dr. H relies on twisting instability and forward-backward instability. Dr. B also much more experienced with MECFS patients than Dr. H.

At this point, I‘ve done invasive cervical traction with Dr. B and I have a positive diagnosis of CCI. Surgery is an option for me if I don’t respond to physical therapy. I’m 2.5 weeks into PT and surprisingly I’m responding positively to it, so we’ll see where things end up.

My advice for you is don’t give up hope!! It sounds like Dr. B will be much better suited to tell you if you actually have CCI. If you have any questions about anything he says, let me know. My brother has had four surgeries with Dr. B at this point and is probably on his way for a fifth, so we‘ve gotten to know him pretty well.

As far as what happened between your first CT and second CT, my best guess is that your head was in a more centered position during the second CT, so the instability didn’t show up? I’m not sure! None of the scans that show instability are standardized. Even in my flexion and extension MRI, the radiologist, Dr. Narayanan, and Dr. Bolognese all came up with different measurements. Same scan, same picture, really different measurements. So who knows.

Let me know if you have any questions! Hang in there!

 

[Apo Sci]

My impression is that you could have swelling around the brainstem which is compressing it. You might benefit from an anti inflammatory diet and supplementation (curcumin) to decrease the inflammation.