Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[rainbowbluebells]

the doctor probably feels that there still could be craniocervical issues despite normal seeming MRI. perhaps that is why some doctors want a DMX, Upright MRI, etc etc

But this is what I don’t understand. If my MRI looks normal (and 3T supine scans are what he asks for in preference now, which I would’ve thought means he is able to see enough in them), and still he says it’s normal, then how could I have CCI? I did email back to ask him if other things are also ruled out but he says he cannot give a diagnosis without a consultation. And cannot give a consultation without knowing if traction helps me or not. I find the whole thing odd and confusing. I explained I have autism /aspergers and am extremely anxious but he still didn’t explain it.

 

[Michiel Tack]

Overall, @Michiel Tack, I appreciate the time you've taken to advance this discussion forward

Thanks Jeff. I appreciate you having a look at my concerns.

I'm glad that some neurosurgeons are trying to decrease the complications of this type of surgery for example by no longer using rib harvest. I do not think however that it's best to eliminate the information about these complications if we do not exactly know if the alternatives are safe, effective and used by all of the neurosurgeons you listed. When Henderson et al. reported this complication earlier this year (the surgeries reported on, date back to 2011-2012), he did not minimalize these negative outcomes by saying that this is an outdated technique that he and his team would no longer use.

The most advanced fusion technique to date does not use a suboccipital plate instrumentation. And so, patients with the advanced condylar screw fusions do not have this problem. In short, with the right choice of neurosurgeon, this concern you listed here can be eliminated.

I seemed to have accidently shorted the quote in the first version of the text (this has now been corrected). The actual quote is: 'One to four years after the craniocervical fusion, some subjects developed pain over the suboccipital instrumentation (the "screw saddles") due to tissue thinning, and requested hardware removal (8/20 subjects).' So it were the screw saddles that were causing the pain. I'm not sure if this was due to plate instrumentation and that such complications do not occur with condylar screw fusions.

I focused on the Henderson study because this is often referred to, but the rate and type of complications are similar in other studies. So I don't think these concerns should be eliminated. In my text, I didn't quote from Ashafai et al. who published an updated review on occipitocervical fusion this year. So this is recent information. The reason I didn't quote it is because the segment is a bit long: but here is what it says:

"The general complication rate varies from 10% to 33% [25, 27]. Minor complications that are encountered are wound infection or dehiscence, dural tearing and cerebrospinal fluid leakage. OCF-specific complications concern proper head alignment. Excessive flexion results in the patient having an impaired line of sight and swallowing difficulties. Fixation in exaggerated extension results in poor visualization of the ground. Potential complications of major significance include meningitis, posterior fossa haematoma, and direct injury to neural structures and the vertebral artery by misplaced screws."​

The complications you're detailing are not common when one enters the pre-op state with good hygeine, and when one chooses a highly-experienced specialist neurosurgeon.

Sorry Jeff, but this is not correct and it's exactly the reason why I wrote the text and used references to back my statements. The reviews I've listed all say that the "complications of occipitocervical fusion can be serious" and that the complications I've listed are common. These reviews used data from scientific studies on this intervention, so we can presume the surgeries were performed in a specialist setting (and that patients had good hygiene).

The statement that you challenge comes directly from Choi et al. 2013. "Surgical Outcomes and Complications after Occipito-Cervical Fusion Using the Screw-Rod System in Craniocervical Instability." According to the authors: "commonly reported complications include vertebral artery injury, dura tear, cerebrospinal fluid (CSF) leakage, wound infection, nerve or cord injury, screw failure, and bone fusion failure."

I cannot, in good conscience, post this disclaimer -- because I believe it to be inaccurate.

My text is not focussed on whether CCI/AAI could cause ME/CFS symptoms or not, but on what the current evidence says; what is known and written down in scientific publications. This is not a matter of belief. So unless one provides scientific literature that suggests otherwise, one will have to accept that current evidence does indeed suggest the conclusions I've listed.

The disclaimer could be adjusted to emphasize that this is only current understanding in the scientific literature. So you could say: "The current literature says ME/CFS and CCI/AAI cause symptoms that are quite different but I think there might be an overlooked connection because of reasons A or B..." Or: "There is currently no scientific evidence to suggest that CCI/AAI surgery relieves ME/CFS symptoms, but researchers have only just started to look at this possibility and some EDS-researchers think it might be that this type of surgery also helps to relieve other symptoms such as fatigue or POTS."

Human beings are not a monolith, and it's great that we can present different perspectives on this board. It's up to each person to do their own risk-benefit analysis.

For a risk-benefit analysis, people need to have information about the current scientific understanding of CCI and the risks of surgery. I'm concerned that yours and Jennifers blogs focus mostly on the possible benefits without giving much information about the risks.

I appreciate the work you have put in this in providing information, helping others, having the courage the go through with such major surgery to get better. I find yours and Jennifers story intriguing and I sincerely hope that this can lead to a breakthrough in ME/CFS research. But I do find it concerning that your blog does not mention the costs and risk involved with CCI surgery. You tell your story in great detail with more than 6000 words but the seemingly severe complications you had due to surgery are not mentioned. Likewise, I think it is necessary to inform readers about the current scientific understanding of CCI and fusion surgery so that readers understand that the link between CCI and ME/CFS is not supported by the current scientific literature.

I do not understand why it is not possible to add a simple and short disclaimer about this at the top of blog posts. That would inform readers about the current scientific understanding of CCI and help make their own cost-benefit analysis.

 

[valentinelynx]

@jeff_w but when you say there is a very low rate of complications, you are talking about just 1 or 2 level fusion, right?

I expect he is specifically speaking of craniocervical fusion, done by the few neurosurgeons he recommends. Not other kinds of cervical spinal fusion, such as fusing cervical vertebrae, which can be 1 level or several levels, done anteriorly or posteriorly.

 

[valentinelynx]

But this is what I don’t understand. If my MRI looks normal (and 3T supine scans are what he asks for in preference now, which I would’ve thought means he is able to see enough in them), and still he says it’s normal, then how could I have CCI?

Do you have symptoms of CCI? MRIs and symptoms do not always correlate. If you have reasons other than your MRI for suspecting CCI, then he is simply suggesting you investigate by trying the traction. If your symptoms are relieved by traction, that provides data that your symptoms may be due to CCI. There are probably a small subset of patients with a normal supine MRI who have symptomatic CCI.

 

[bombsh3ll]

probably something mild. but since dr. gilete says i likely need total cervical fusion

What is concerning me a little, especially after getting Dr Bolognese's email saying no instability evident (albeit without any mention of traction & without the DMX that Dr Gilete did) is that I have now spoken to a large number of people on various sites who have sent imaging to Dr Gilete, and ALL of them have been recommended surgery. Granted, everyone pursuing this has symptoms or they wouldn't be doing it, and many of them have been diagnosed with EDS. However, statistically it is highly unlikely that 100% of people sending in their scans would have this issue and/or need surgery.

I would really like to hear from anyone who has sent scans/consulted Dr Gilete and been told their structures are normal and they don't need surgery. Maybe they just disappear from the CCI forums once they are told this, but it is bothering me that everyone seems to be recommended surgery.

B xxx

 

[Daffodil]

An average of 5 years. I would argue if you don't see improvements in fatigue, IBS etc. 5 years after surgery, then it's unlikely that that surgery will cause improvements after those 5 years.

dang 5 yrs. yea i guess that is enough time

dr. gilete's admin person also told me of the 4 ME patients they had, 1 did very well, 1 i think partially, 1 i cannot remember and 1 did not improve

 

[Daffodil]

With gastroparesis you feel full all the time because the food stays too long in your stomach. Is it Domperidon your mother uses?

that does sound familiar but i cannot remember for sure..she stopped taking it because her acid reflux resolved.

 

[Daffodil]

What is concerning me a little, especially after getting Dr Bolognese's email saying no instability evident (albeit without any mention of traction & without the DMX that Dr Gilete did) is that I have now spoken to a large number of people on various sites who have sent imaging to Dr Gilete, and ALL of them have been recommended surgery. Granted, everyone pursuing this has symptoms or they wouldn't be doing it, and many of them have been diagnosed with EDS. However, statistically it is highly unlikely that 100% of people sending in their scans would have this issue and/or need surgery.

I would really like to hear from anyone who has sent scans/consulted Dr Gilete and been told their structures are normal and they don't need surgery. Maybe they just disappear from the CCI forums once they are told this, but it is bothering me that everyone seems to be recommended surgery.

B xxx

this is an important point

 

[bombsh3ll]

dr. gilete's admin person also told me of the 4 ME patients they had, 1 did very well, 1 i think partially, 1 i cannot remember and 1 did not improve

But no-one got worse or died right? I feel it is pretty clear the only way for me to know is to do the surgery. I am not going to waste 8k on a halo for 48 hours which may be nowhere near long enough to see the potential benefits, or a Philadelphia collar which doesn't provide adequate traction to be certain.

It is just a massive financial undertaking, like a remortgage or house sale. I am unable to work, so it would really threaten my family's financial security.

B xxx

 

[bombsh3ll]

how do you improve gastric emptying? isn't it called gastroparesis (sp?)?

Domperidone, metoclopromide and erythromycin are drugs used for this.

B xxx

 

[Daffodil]

But no-one got worse or died right? I feel it is pretty clear the only way for me to know is to do the surgery. I am not going to waste 8k on a halo for 48 hours which may be nowhere near long enough to see the potential benefits, or a Philadelphia collar which doesn't provide adequate traction to be certain.

It is just a massive financial undertaking, like a remortgage or house sale. I am unable to work, so it would really threaten my family's financial security.

B xxx

if you are paying out of pocket, perhaps you should get a 3rd opinion? though i guess you would have to travel to the USA for that.

 

[MEPatient345]

If I do too much traction I get a rebound effect. This is pretty standard.

Thanks so much @debored13. By rebound effect — you mean a negative effect? Like PEM? But so with just enough traction, you have a positive effect on your symptoms? And the idea is that when you tell Dr B in your follow up, he will have an opinion on what to do next based on this? I’m interested to hear how your next appt goes for you.
The reason I’m asking so much is I have seen other people in Facebook groups and in other posts here on this website say they became further disabled out of either their own manual manipulations, or PT. How do we all know how much is enough, not too much, or whether or not to continue from manual to a device, and how mich time does Dr. B want us to try these different variations on therapy and achieve how much improvement with them before he recommends surgery. I’m saying all this rhetorically.. Since obviously you cannot answer these questions yet. I’m sure it’s just a process.

 

[JES]

dang 5 yrs. yea i guess that is enough time

dr. gilete's admin person also told me of the 4 ME patients they had, 1 did very well, 1 i think partially, 1 i cannot remember and 1 did not improve

I think the more curious point is that both Jen's and Jeff's POTS (if I remember correctly) immediately resolved following surgery. When there is an improvement in ME/CFS that only presents over several years post-surgery, there is always a risk of (any) other factors being at play. But with such an immediate improvement in one symptom, it can quite reasonably be asserted that the surgery itself is the cause for that.

 

[Daffodil]

But this is what I don’t understand. If my MRI looks normal (and 3T supine scans are what he asks for in preference now, which I would’ve thought means he is able to see enough in them), and still he says it’s normal, then how could I have CCI? I did email back to ask him if other things are also ruled out but he says he cannot give a diagnosis without a consultation. And cannot give a consultation without knowing if traction helps me or not. I find the whole thing odd and confusing. I explained I have autism /aspergers and am extremely anxious but he still didn’t explain it.

maybe he can usually see enough with a 3t supine MRI but there will always be some uncertainty unless you do the other stuff (see him, try traction, etc) and see if your symptoms improve. so he is saying he does not see CCI from your MRI but cannot rule it out completely unless you see him......for now, he gave you his tentative dx

dr gilete said the same thing to me...that it looks like, from the imaging i sent, that i have CCI/AI but he cannot give a definitive dx until i send him other stuff.

(although in my case, the admin person told me he commented after seeing my scans, that although it (CCI and/or AI?) is not always clear in people, with me, it is very clear)

 

[ebethc]

if you can get a PT to just do traction therapy, sure, although some may want to know why and to hear it from a neurosurgeon. In my case I showed the email from bolognese after I'd had my scans done, to my PT

I have a chiropractor who was a PT for years before becoming a chiropractor.... I could go to her and ask for "traction therapy" but what kind of traction therapy do patients require? I would need to explain it to her... can you tell me more? thx

 

[Hip]

@mattie, before surgery, when you were put under neck traction to see if your symptoms abated, did you experience an instant remission from POTS?

I believe Jen and Jeff's POTS disappeared while under neck traction.


By the way, how do they test for POTS when your neck is under traction? Is the bed you lie on while under traction able to tilt, so that the doctor can perform a tilt table test?

 

[bombsh3ll]

[QUOTE By the way, how do they test for POTS when your neck is under traction? Is the bed you lie on while under traction able to tilt, so that the doctor can perform a tilt table test?[/QUOTE]

I'd like to know this as well, not that I would let anyone pull on my head! Can you imagine asking an NHS physio to do that & explaining why?!

The only way to tell that is with a halo brace, neck collar or other device that can be worn sitting or standing up if you are able to.

B xxx

 

[Pondering]

So my sister has had CFS for 30 years and has seen a number of the experts in Canada over the years as well as numerous specialists. I have taken it upon myself over time to keep an eye on the research.

I forwarded her a summary of the information and apparently the consistent thing she has told every doctor for the last 30 years is that her head feels too heavy for her neck (I had no idea of this, having never attended any of her appointments). Speaking to my Mom, apparently the initial bout of CFS (besides being associated with a virus) was also preceeded by her crashing her bike landing head first and an ambulance needing to be called.

She is now going to try and be diagnosed with CCI.

 

[Daffodil]

@Pondering keep us posted! thats exactly how i always felt...head too heavy for neck. but i never made the connection that maybe my brain stem was being compressed.

 

[mattie]

@mattie, before surgery, when you were put under neck traction

I was not.