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

[5vforest]

has this been debated here ? any studies ?

Yeah, it's been debated a lot here, and elsewhere on other forums. It is kind of a sore spot amongst the community actually, from what I can tell. There have yet to be any studies or for that matter, anything reported in the medical literature.

 

[Pyrrhus]

There have yet to be any studies or for that matter, anything reported in the medical literature.

Except for this one:
https://forums.phoenixrising.me/thr...l-obstructions-in-patients-with-me-cfs.81446/

 

[valentinelynx]

I know Dr. Bolognese prefer a supine MRI but what about Henderson, Patel and Gilet? I'm trying to figure out if I should do a supine or an upright MRI.

While I've heard that those 3 surgeons prefer upright flexion-extension MRIs for diagnosis of CCI/AAI, I would strongly recommend checking with their offices before getting any studies done, to avoid wasted time and/or money.

 

[bensmith]

The type of MRI you get depends on the surgeon. Upright if it’s Patel. Your surgeon should be the one to order it so it contains the views they require.

I think dr b wants you to come with the mri in hand. You also have to see improvement with traction before you see him.

Have read the blogs now from jeff and jenn ( saw her film but didn't know what happened to her following that ! )... shocking stuff. To think it was possible to cause this issue with a viral infection.... such a straightforward model that yields answers to all the questions.. unprecedented. Surely we are forced to consider here whether the vast majority of me/cfs cases are actually caused by these undetected changes to the macro function / structure of this area of the brain ? has this been debated here ? any studies ?

I wish it were that simple but its not. For some it it is but others no.

I know some prominant me group came out and said, basically, be careful of the cci craze atm, no studies and prob not a good idea for many. And we have little idea who the ones who will benefit will be beofre hard.

We have traction but that really isnt enough. Dr b even says there is no way to know if this will benefit your me.

All that being said im still pursuing it atm. My neck is a mess and my symptoms seem to connect to it. Im worried i dont show improvement though. I seem to show improvement but not in a traditional way.

 

[rel8ted]

I think dr b wants you to come with the mri in hand.

That does not mean that the surgeon is not the one who should order his preferred views. I am not making that statement as a guess.

I am again going to make an unpopular statement here that some are putting too much hope into this as a cure. Not everyone is going to 1.) need surgery or 2.) experience fantastic results from surgery. Speaking from the perspective of someone who had a less serious spinal issue (than CCI/AAI), spinal surgery is a very big deal. Over a year out, I can say that the results were not all that I had hoped.

I understand that we all want our lives back. The truth is that surgery did not fix everything for me. It is not a panacea.

 

[PisForPerseverance]

And there are other treatments. Prp and possibly fsm are two I know of in addition to the support of physical therapy. Prp may not be effective unless deep enough in the spine that only trained doctors like anesthesiologists can get to safely with guided ultrasound. Even then, results vary. This has been said on this thread but I'll say it again for people to know. Regenexx is a company(?) and network of doctors that zeroed in on regenerative medicine for cervical instability, among other things. Dr centeno created the picl procedure, which he considers the last line in the regenerative medicine sequence of procedures that they do, before he recommends opting for surgery if necessary. It's prp in locations one would need general anesthesia to get to. If I remember correctly. He's pretty anti fusion and discusses the risks but thinks it's necessary sometimes. First line would be prolotherapy, if that doesn't work well enough then prp without general anesthesia then picl. All using MRI and other imaging to see exactly where instability is and treating accordingly. And combined with good physical therapy I believe they suggest. I have no personal experience with him but I do with one of the doctors in his network and I might pursue prp in this way at some point. That doctor did not suggest prolotherapy first, just prp first. He also, even though is in the network and knows how to treat cci with prp, was not as knowledgeable as I'd thought, for example he didn't know the possibility of tethered cord along with it and I'm almost sure Dr centeno does. Could be wrong. Quite a serious issue and I'm not clear if these procedures could lead tethered cord to be symptomatic the same way a fusion can, but it's something I will ask about at some point. This doctor I saw seemed pretty knowledgeable but him not knowing the connection to tethered cord scared me. My neurologist (different person) who speaks to Dr b is aware of the picl and supports it and wants to send a doctor to learn it. I watched a webinar centeno did that Jeff posted, Here. Seems Jeff did a picl to try to resolve any last remaining issues after his two surgeries. I don't remember what he did it for, you'll have to ask him.

So I hope this serves people well. On the regenexx website there's the list of doctors in the network around the us (and other countries perhaps?) and some do cervical injections. Shopping around and checking out options is good because my guess is some charge a lot more than others for these prp procedures, although the picl done in Colorado is whatever price it is and probably very expensive. I know someone on this thread did one picl and didn't benefit. On webinar he says this happens but not often. He states some percentages of how many of his patients recover a certain amount with each stage. And that fusion surgery makes it much harder to benefit from the picl. I think he has done some really good work and this issue has clearly been in people's awareness before the mecfs community. Especially eds people I'm gathering. He writes on his blog about various aspects of ccj issues diagnosis and treatment. For example This. Someone asked a really good question about MRIs in the comments which was answered.

So this is a really promising area and we can hope the cost of these things will go down over time. More things may be in the pipeline for ccj issue treatments in coming years. I'm exploring how frequency specific microcurrent can help. The thing Malory tomaro wrote about in her blog about how she healed these issues. The doctor who I'm going to do fsm with (different person than the previous mentioned two doctors I see) uses it for people with eds among other things and has lectured on ccj issues and knows me/cfs. I do believe surgery is not the best choice for many. But... There are complex factors and varying severity and we should all decide for ourselves with guidance from the surgeon and other docs and peers. Just know there are options and will be more.

 

[bensmith]

@PisForPerseverance thanks this sounds interesting.

Sorry bud im sorry to hear that. Would you
have not done the surgery then? What else would you have done? The problem i have
Is im too sick for pt, just hearing about stem cells in this post so that sounds interesting.

@rel8ted

I also called dr patels office and his reception said to come with mris already completed.

 

[bensmith]

Any pt excersizes you guys can share?

 

[Markus83]

Question to those of you who had an MRI Review by Dr Gilete: I have an Upright MRI in neutral position, side bending and rotation but not flexion/extension. Is this fine for Dr. G. or does he need flexion/ext. as well?

Is there consensus about Dr G. in the meantime? In the past I had a bit the feeling that practically everyone gets diagnosed with CCI/AAI by him.

 

[PisForPerseverance]

@bensmith I'm not sure if you meant for me about pt and surgery but... If you're referring to the thing I said about being scared that that doc didn't know how tethered cord was related... I don't know if I have tethered cord since getting an MRI is taking forever and I'm waiting to review my x rays now, but if I'm going to do prp treatment for various spine issues, which I most definitely am at some point, I want to first find out whether these procedures can trigger tethered cord symptoms like correcting cci with fusion potentially can if there's an existing issue not known about. If it can, I'd need to have a plan beforehand for how I'd deal with that.

Too sick to leave the house to do pt or too sick to be able to handle potential flares you're anticipating? I'll update with how my PT is going when I start. The woman I was referred is supposedly world class in diagnosing instability with a keen ability to detect the subtleties, I hope it pans out as far as actually being helpful for repair. She does a whole assessment for instability much more involved than traction only, but likely I will be doing more repair than full assessment next week since I'll already be in a flare from dental work that I couldn't afford to get any worse from assessment. I'll definitely share whatever I can find out and perhaps there's a network she's a part of that knows ccj and instability well that I can share so people can look. My understanding is that going to any pt is not wise if there's a choice. If there's not, can still be helpful but I have seen warning.


An important correction is that I misremembered what the picl is, it's stem cells and not prp, I said it was prp in an area one would need anesthesia to get to (through the mouth, uck), but it's stem cells (always using them from a person's bone marrow? Or sometimes non autologous? I don't know but I think it's only autologous). Prolotherapy and prp are the first line treatments before that.

 

[frozenborderline]

I have lots of disappointment with bolognese and his office. He's very smart but has major blind spots. Because of him I am left out in the cold and suffering for a long time without help . I am too tired to write up my whole experience and we cannot post videos here but if anyone must know my experience I can message it to you, for the full details.

All i can say is his screening methods are extremely flawed and he misses a lot of cases

 

[frozenborderline]

Leaving severely ill people to suffer without help. I also have to wonder if it's even worth seeing him if you don't already see Kaufman or chheda, the high end internists/mecfs docs, who advocate very intensely for their patients AND have a working relationship withbolognese, so he respects them. I don't have a primary me/cfs doc that organizes treatments for me, mine is extremely scattered and spacy, and will not advocate for me. But I couldn't afford Kaufman, or thought I couldn't and didn't consider fundraising for it, earlier in my illness. I think if you looked at a study of patient outcomes for bolognese, it's more likely that kaufman patients get the surgeries they need without being overlooked by bolgonese , and that he helps with the advocacy and communication that are very very difficult for me/cfs patients that are severe.

 

[PisForPerseverance]

@frozenborderline I'm so sorry. I thought his screening methods were flawed as well just by comparing it to everything else I've read both from people and what other doctors, non surgeons and surgeons, look at. I will be sure to share the feedback and discrepencies more clearly with my supervising neurologist who has worked with him with a patient, so she knows not to use his standard as the only standard. Being clearly disadvantaged just because you don't have an advocate due to cost is an awful experience. I'm curious if you have any ideas or hope for where you might go next with treatment?

 

[PisForPerseverance]

I just wanted to add that a doctor of mine who had a lot of extreme eds hypermobility in his spine said he did prp years ago and that stabilized him, he said, and took away his pain for about 4 years, then he did it again and it's stayed gone. He said it tightened what needed to be tightened. So that was compelling for me. I have no idea where in his spine was painful and hypermobile, it didn't sound like extreme pain or disability, but it was good to hear.

 

[valentinelynx]

Any pt excersizes you guys can share?

Dr. Bolognese recommends the Muldowney protocol. However, many people with ME/CFS and/or EDS find it difficult. In fact, Dr. B says specifically in a lecture that patients should buy Muldowney's book, but not try the exercises on their own. Instead they are supposed to take it to a EDS-skilled physical therapist to read and select/modify exercises to suit you individually (I'm taking a lot of license in interpreting what Dr. B meant here).

Some people see Kevin Muldowney, PT in person at his practice in Rhode Island.

 

[frozenborderline]

I have lots of disappointment with bolognese and his office. He's very smart but has major blind spots. Because of him I am left out in the cold and suffering for a long time without help . I am too tired to write up my whole experience and we cannot post videos here but if anyone must know my experience I can message it to you, for the full details.

All i can say is his screening methods are extremely flawed and he misses a lot of cases

 

[bensmith]

Dr. Bolognese recommends the Muldowney protocol. However, many people with ME/CFS and/or EDS find it difficult. In fact, Dr. B says specifically in a lecture that patients should buy Muldowney's book, but not try the exercises on their own. Instead they are supposed to take it to a EDS-skilled physical therapist to read and select/modify exercises to suit you individually (I'm taking a lot of license in interpreting what Dr. B meant here).

Some people see Kevin Muldowney, PT in person at his practice in Rhode Island.

thanks. This disease is so fucking trying. Im essentially bed bound. Damned if i do damned if i dont. So sick of all this patchwork treatment. Im not skilled enough to really do some of the work many people on here have done, like people deconstruction their own illness, somehow convince doctors to help them, get on crazy trestments, etc. nor do i realy have the energy. Really wish we had treatment today. I hurt my neck using a blow up collar, now one of my disc is bulging. Seems you really have to get it under control
Fast or surgery will likely be needed soon. My body is deteriorating because of this negligence.
Sorry to rant.

and of course we have no listed pt speciaist for
Eds in oklahoma.

Ilet us know how it goes, im hearing they are screening out eds now in colorado regenexx.

@PisForPerseverance​

I might try the regenexx here in oklahoma for the pre thraor injection, see if i can handle
Stems and if it works.

have you thought of doing stem cells in mexico? More/id assume better. Just not injected into cci area directly. A lady said she had cci on fb and said she did it and it worked. Anybody know if this could be true or makes sense?

 

[valentinelynx]

have you thought of doing stem cells in mexico? More/id assume better. Just not injected into cci area directly. A lady said she had cci on fb and said she did it and it worked.

I'd avoid most "stem cell" operations. Huge source of income for scammers. Regenexx and Caring Medical have better reputations, and only use cells derived from your own tissues. According to Chris Centeno, MD at Regenexx, interviewed in the movie I mention below, embryonic stem cell products derived from umbilical cords or amniotic fluid have little to no living cells in them. Plus the people administering these things tend to be crooks. As for Centeno himself he has now thoroughly pissed off the CCI/tethered cord community by publishing incorrect propaganda stating that surgery doesn't work and is never indicated, but that's another story.

This film uses Centeno as a source about the stem cell industry and it's appalling and revealing: "From Jail Cell to Stem Cell: the Next Con for the Ex Con". It costs $5.99 to rent for 24 hours here, or it's included if you have Amazon Prime.

 

[bensmith]

Thanks. Sad to hear he says they are scammers. And also sad to hear surgery is bad that is very odd.

 

[valentinelynx]

Thanks. Sad to hear he says they are scammers. And also sad to hear surgery is bad that is very odd.

I'm afraid Centeno either doesn't know much about craniocervical fusion (I heard from someone else that he said people just have their cervical spine and skull fused in their current positions, which is just plain false), or that he is motivated to sell his procedures, or both.