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

[StarChild56]

That just happened to me. Dr. Kaufman said he showed my supine 3T MRI to Dr. Bolognese, and he didn't see anything out of the ordinary.

I don't have typical CCI symptoms and moving my neck in different ways doesn't change how I feel. But I thought testing for CCI made sense because I'm very double jointed (9/9 on Beighton scale).

Maybe my problems (fatigue, POTS, brain fog, vision issues etc.) are just autoimmune instead. I did have very high results for most of the CellTrend auto-antibodies.

This is good to have input from patients that were screened and found negative for CCI. Thank you for sharing.

I did not realize how many patients Dr. Kaufman had that are on PR. Though that is how I found him so I should not be surprised.

 

[Cally]

I did not realize how many patients Dr. Kaufman had that are on PR. Though that is how I found him so I should not be surprised.

Yes, me too. PR is so helpful.

 

[nasim marie jafry]

Hey, everyone, I have not been on here for a good few years, I am not much of a frequenter of forums, but I have obviously been aware of Jeff's surgery through Jennifer Brea's commentary and her own publicised (at least, on social media) recent surgery for CCI. Jeff's experience sounds horrendous and I am truly happy for him he has found himself symptom-free after his gruelling journey of CCI diagnosis followed by surgery.

What brings me here is that today I saw someone on Twitter link to this PR thread, someone (Truthseeker) who was voicing concerns to Jennifer Brea: this tweeter seemed to be concerned that some pwME were being led to believe that CCI surgery might put an end to POTS, brainfog etc.

I just want to say - as someone diagnosed with Ramsay ME in UK in 1983 post-Coxsackie B4 by ME specialist/cons neurologist Peter Behan - that I think we should be very cautious and perhaps consider that these very frightening brain compression problems are scarily MIMICKING symptoms of ME rather than CAUSING actual ME. In the UK, for example, Chiari has to be *ruled out* before ME is diagnosed, please see differential diagnosis from recent ME Association clinical guidelines (2018).




Since Chiari has to be ruled out before a diagnosis of ME is made, I would imagine the same goes for CCI?

Today, I remain ill after 36 years of ME. And it concerns me a little that because of Jennifer's and Jeff's experiences of CCI that some with ME are perhaps now alarmed they have CCI, or similar, and also seeking neurosurgery tests/surgery unnecessarily. Of course, if one develops further new frightening symptoms, as both Jeff and Jennifer did, further investigations should be made. But troubling neck issues are also simply part and parcel of myalgic encephalomyelitis. That is a fact.

Jeff himself says in an older post that: 'I think many of us who have been diagnosed with ME/CFS/SEID actually have these neurosurgical issues'. But he has also on Twitter been advocating for an awareness of 'structural ME'. My many years of ME experience/advocacy tell me that ME is not structural and that we should be educating about possible misdiagnosis rather than comorbidities of brain compression issues with ME.

To be clear, I am not saying Jeff and Jennifer never had ME, I cannot possibly know that, but if a surgical procedure resolves all of one's symptoms should misdiagnosis not at least be considered?

Thank you for reading.

 

[Wayne]

Today, I remain ill after 36 years of ME. And it concerns me a little that because of Jennifer's and Jeff's experiences of CCI that some with ME are perhaps now alarmed they have CCI, or similar, and also seeking neurosurgery tests/surgery unnecessarily.

Hi @nasim marie jafry,

Thank you for your thoughtful post... -- I've been paying a lot of attention to this topic, as my own ME/CFS symptoms began after a head injury/whiplash as a teenager. Since then, various therapies have improved some of those symptoms at various junctures. -- I have not even come close to sorting throujgh all this information regarding Jeff's and Jennifer's experiences, but I do suspect that there are probably widely varying degreees of CCI and/or AAI.

The question for me becomes, "at what point of severity does fusion surgery become the ideal option?" If somebody has lesser degrees of what might be "full" CCI, would they be better served by employing any variety of other therapies first, such as upper cervical chiropractic; some kind of physical therapy--such as traction; cranial sacral work; temporarily wearing some kind of neck support device, atlasprofilax, etc.?

Also, I've wondered: -- Have these kinds of therapies thus far been fully explored by CCI experts before choosing to do fusion surgery? Looking at my own situation, I would prefer to explore these options thoroughly to see if I could avoid surgery. Which is in fact, what I'm beginning to do with my intuitive physical therapist.

As far as the diagnosis of ME is concerned, given its definition, it's seemed to me nobody ever really has ME, only ME/CFS symptoms. Because apparently, as soon as something is tracked down which identifies what's causing the ME symptoms, then they no longer have ME--kind of a puzzler for me . So I rarely think in terms of whether somebody actually has ME, but whether or not they have ME symptoms.

Again, thank you for your caring and thoughtful post!

 

[Gingergrrl]

In the UK, for example, Chiari has to be *ruled out* before ME is diagnosed, please see differential diagnosis from recent ME Association clinical guidelines (2018).

I read through the paper that you linked and that is amazing that all of those diagnoses are ruled out in the UK before an ME/CFS diagnosis is made. This simply is not done in the US and I cannot imagine that it ever will be. Insurance companies would never pay for all of that and the average doctor is not very familiar with ME/CFS.

We are lucky that we do have specialists (but they are few and far between). My specialist initially diagnosed me with ME/CFS (as did every other doctor that I saw in 2013 and 2014) but then he dug deeper to figure out what was going on in my case and he felt that other diagnoses were a better match. But I am extremely lucky to have him (he is the same doctor as Jeff and many others in this thread). He really looks at each individual case as it presents (immune symptoms, dysautonomia, structural issues, viruses, neurological, cardiac, endocrine, autoimmunity, mast cell, or whatever the case may be).

And it concerns me a little that because of Jennifer's and Jeff's experiences of CCI that some with ME are perhaps now alarmed they have CCI, or similar, and also seeking neurosurgery tests/surgery unnecessarily.

I think the individuals who have symptoms similar to Jeff and Jen's are now pursuing the appropriate testing (such as a cervical MRI) to see if they fall into that group. To me, this is an appropriate thing to do, and there are cases of people finding CSF leaks or brain stem compression that would never have been found without the appropriate tests and imaging (MRI, etc). Why would someone not correct this (if it is found on imaging and diagnosed by a qualified doctor and/or surgeon)?

But he has also on Twitter been advocating for an awareness of 'structural ME'. My many years of ME experience/advocacy tell me that ME is not structural and that we should be educating about possible misdiagnosis rather than comorbidities of brain compression issues with ME.

How do we know that there are not some cases in which ME/CFS has a structural cause? It seems that there are many subgroups and co-morbidities. From your paper that you linked, it would rule out anyone even with anemia or Hashimoto's as a "misdiagnosis" (if I am understanding it correctly?) let alone with POTS, MCAS, or CCI.

To be clear, I am not saying Jeff and Jennifer never had ME, I cannot possibly know that, but if a surgical procedure resolves all of one's symptoms should misdiagnosis not at least be considered?

I cannot possibly know either but I have never found it helpful to diagnose other people and it has been challenging enough to try to obtain the correct diagnosis for myself!

The question for me becomes, "at what point is fusion surgery actually the ideal option?" If somebody has lesser degrees of what might be "full" CCI, would they be better served by employing any variety of other therapies first, such as upper cervical chiropractic; some kind of physical therapy--such as traction; cranial sacral work; temporarily wearing some kind of neck support device, atlasprofilax, etc.

I totally agree with you on this @Wayne (and I know that we don't always agree on everything!) but I appreciate the way that you explained it. I agree that some people have a much lesser form and that temporarily wearing a cervical collar or doing PT or traction is all that is needed (and surgery is too risky or not even necessary in those cases).

I am having a cervical MRI on Mon b/c I have bulging discs, cervical stenosis, and radiculopathy (where the neck pain radiates down my arm). My doctor does NOT believe that I have CCI and I agree. But if the MRI can pinpoint what is going on, it might help my current PT or confirm that I should purchase an at-home traction device. I am not considering surgery, no matter what is found, b/c it is too risky for me on all levels (and I don't even think it would pertain to my case). But I cannot see how getting the MRI and having that information could hurt, especially b/c my doctor has strongly recommended it.

My symptoms are very different than Jeff's, and I hate posting about someone else, but am hoping he will jump in so he can speak for himself! I visited him in hospital (several months) prior to surgery and his suffering was unimaginable. I rejoice that the proper diagnosis and treatment was found for him. He is sharing it in case it pertains to others (and for some it will and for others it will not). I think that is a great thing.

 

[nasim marie jafry]

I read through the paper that you linked and that is amazing that all of those diagnoses are ruled out in the UK before an ME/CFS diagnosis is made. This simply is not done in the US and I cannot imagine that it ever will be. Insurance companies would never pay for all of that and the average doctor is not very familiar with ME/CFS.

We are lucky that we do have specialists (but they are few and far between). My specialist initially diagnosed me with ME/CFS (as did every other doctor that I saw in 2013 and 2014) but then he dug deeper to figure out what was going on in my case and he felt that other diagnoses were a better match. But I am extremely lucky to have him (he is the same doctor as Jeff and many others in this thread). He really looks at each individual case as it presents (immune symptoms, dysautonomia, structural issues, viruses, neurological, cardiac, endocrine, autoimmunity, mast cell, or whatever the case may be).



I think the individuals who have symptoms similar to Jeff and Jen's are now pursuing the appropriate testing (such as a cervical MRI) to see if they fall into that group. To me, this is an appropriate thing to do, and there are cases of people finding CSF leaks or brain stem compression that would never have been found without the appropriate tests and imaging (MRI, etc). Why would someone not correct this (if it is found on imaging and diagnosed by a qualified doctor and/or surgeon)?



How do we know that there are not some cases in which ME/CFS has a structural cause? It seems that there are many subgroups and co-morbidities. From your paper that you linked, it would rule out anyone even with anemia or Hashimoto's as a "misdiagnosis" (if I am understanding it correctly?) let alone with POTS, MCAS, or CCI.



I cannot possibly know either but I have never found it helpful to diagnose other people and it has been challenging enough to try to obtain the correct diagnosis for myself!



I totally agree with you on this @Wayne (and I know that we don't always agree on everything!) but I appreciate the way that you explained it. I agree that some people have a much lesser form and that temporarily wearing a cervical collar or doing PT or traction is all that is needed (and surgery is too risky or not even necessary in those cases).

I am having a cervical MRI on Mon b/c I have bulging discs, cervical stenosis, and radiculopathy (where the neck pain radiates down my arm). My doctor does NOT believe that I have CCI and I agree. But if the MRI can pinpoint what is going on, it might help my current PT or confirm that I should purchase an at-home traction device. I am not considering surgery, no matter what is found, b/c it is too risky for me on all levels (and I don't even think it would pertain to my case). But I cannot see how getting the MRI and having that information could hurt, especially b/c my doctor has strongly recommended it.

My symptoms are very different than Jeff's, and I hate posting about someone else, but am hoping he will jump in so he can speak for himself! I visited him in hospital (several months) prior to surgery and his suffering was unimaginable. I rejoice that the proper diagnosis and treatment was found for him. He is sharing it in case it pertains to others (and for some it will and for others it will not). I think that is a great thing.

I would never post about anyone else's symptoms but much has been made of this CCI surgery, publicly, that is why I am responding. I think the links with CCI are at risk of being overstated and that can be dangerous, pwME are often desperate for answers and will pursue all kinds of therapies.. As I said, I find it unlikely that ME is structural, but I am only informed by my own experience of the illness and what I have seen/read since early 1980s. Of course, if people with a CCI diagnosis are helped that is wonderful. My point is, is this still ME? Perhaps it is easier to request MRIs in USA, I do not know. And to be honest I doubt v much all UK doctors rule out the conditions I linked, to, these are recommendations. My point was Chiari has to be ruled out. I guess this means one could be misdiagnosed with ME when one had Chiari instead, my point being - is that not the same with CCI? And I am sure Jeff's suffering was unimaginable, nowhere have I suggested it wasn't. Is brilliant his CCI surgery was so effective.

 

[StarChild56]

I just want to throw out there that as far as chiropractic adjustments on your neck - if you have CCI - Dr. Healy (@Diwi9 posted his video on this thread I believe, but here it is again:

“Unique Manual Physical Therapy Approach to Treating Craniocervical Instability & Chiari” - Dr. Michael Healy

Healy, who is an osteopath and a PT stated that you risk becoming quadriplegic if you have any manipulation of the neck. Additionally if you have EDS or other connective tissue disorders it puts you at risk of possible stroke or other problems with your arteries and such (he also used the word dissection which I am not sure what it means in this context).

I have always believed in and have used chiropractic but when my neck degeneration became very severe, 2 primary care doctors who had previously been happy for me to get chiropractic care stated emphatically that I should never have adjustments on my neck and that it is very dangerous. This was before being diagnosed as likely CCI/AAI and CSF leaks.

Again I am completely pro-Chiropractic generally. This is just one instance that I feel is important to consider the ramifications.

ETA: this video is 2 years old and Dr. Healy is advocating for upright MRIs when supine with the correct additional views (including flexion and extension) are now considered superior and the standard to screen for CCI/AAI (and of course regular neck issues as well).

 

[StarChild56]

Chiari instead, my point being - is that not the same with CCI?

Chiari and CCI are not the same thing.
ETA: So sorry for being wrong - my brain fog was very bad and I answered something that was not even asked. I will leave here so as not to "dirty delete".

 

[StarChild56]

I think that getting cervical MRIs if you have pain or problems in your neck - no matter what other illnesses you have or do not have is only a positive thing (as long as the doctor reading it is able to diagnose CCI/AAI and there are not many who can). If there is nothing there, then you have ruled out those issues.

If there is something there - whether it just be whatever degree of degeneration (which is almost always treated "conservatively" - PT, NSAIDs, etc.) OR if it is CCI/AAI - then you have something which can be fixed by surgery (potentially).

I guess I do not see a downside in folks who have neck problems getting an MRI to find out what is going on in there. If my previous PCP was not so unwilling to order an MRI for me since I'd had one 4 years before (which was VASTLY different than the recent one) I would be 7 months ahead in my process of getting surgery and recovering from CCI/AAI and CSF leaks. He cost me a lot of pain and disability that could possibly have been lessened.

 

[nasim marie jafry]

Chiari and CCI are not the same thing.

Yes, I know they are not the same thing but according to MEpedia they are grouped together under conditions that can cause Cervical Medullary Syndrome, hence I wondered if it is the case that Chiari can 'mimic' ME, so can CCI.

https://me-pedia.org/wiki/Cervical_Medullary_Syndrome

 

[nasim marie jafry]

I think that getting cervical MRIs if you have pain or problems in your neck - no matter what other illnesses you have or do not have is only a positive thing (as long as the doctor reading it is able to diagnose CCI/AAI and there are not many who can). If there is nothing there, then you have ruled out those issues.

If there is something there - whether it just be whatever degree of degeneration (which is almost always treated "conservatively" - PT, NSAIDs, etc.) OR if it is CCI/AAI - then you have something which can be fixed by surgery (potentially).

I guess I do not see a downside in folks who have neck problems getting an MRI to find out what is going on in there. If my previous PCP was not so unwilling to order an MRI for me since I'd had one 4 years before (which was VASTLY different than the recent one) I would be 7 months ahead in my process of getting surgery and recovering from CCI/AAI and CSF leaks. He cost me a lot of pain and disability that could possibly have been lessened.

I don't think I said there was a downside to getting an MRI if you have *new* neck problems, my whole comment was about people with a robust ME diagnosis now thinking they have CCI, when they most likely don't. It seems relatively rare compared to Chiari too, I believe?

I can see that no one is really going to read my comment and respond to what I have suggested ie. *possible* misdiagnosis of ME when one had CCI all along. It seems taboo to even suggest misdiagnosis of ME on this thread so my original, carefully written comment was probably a waste of time and energy. That's fine, but I've said what I wanted to say and will leave it that. Thank you.

 

[StarChild56]

Yes, I know they are not the same thing but according to MEpedia they are grouped together under conditions that can cause Cervical Medullary Syndrome, hence I wondered if it is the case that Chiari can 'mimic' ME, so can CCI.

https://me-pedia.org/wiki/Cervical_Medullary_Syndrome

My apologies - I completely read that wrong! Bad brain cement day for me, sorry.

 

[StarChild56]

I don't think I said there was a downside to getting an MRI if you have *new* neck problems, my whole comment was about people with a robust ME diagnosis now thinking they have CCI, when they most likely don't. It seems relatively rare compared to Chiari too, I believe?

I can see that no one is really going to read my comment and respond to what I have suggested ie. *possible* misdiagnosis of ME when one had CCI all along. It seems taboo to even suggest misdiagnosis of ME on this thread so my original, carefully written comment was probably a waste of time and energy. That's fine, but I've said what I wanted to say and will leave it that. Thank you.

I actually did read your whole comment and I do have cognitive issues at times which can impede my understanding.

My intent in what I wrote was not at all to dismiss what you wrote and I apologize if that is how it came across. I am just advocating that no matter what, if someone does have neck problems an MRI is only a positive in my opinion. It is totally fine if you disagree or if anyone disagrees. And I would also say old neck problems are included in my opinion, as I've had them over 5 years when I had my last MRI which diagnosed my CCI/AAI and CSF (along with some other tools).

I realize I did not respond to the main point of your post, but that is why I intentionally didn't reply directly to you because my comment was just my thoughts about how important cervical MRIs are if having neck problems.

I don't think the subject is taboo and I feel you have every right to bring your thoughts to the table just like anyone else and I am sorry if I have made you feel differently. Truly.

 

[anniekim]

I am just advocating that no matter what, if someone does have neck problems an MRI is only a positive in my opinion. It is totally fine if you disagree or if anyone disagrees.

When you say above to Nasim ‘it’s totally fine if you disagree or if anyone disagrees’ are you still implying Nasim is saying she disagrees with getting a MRI? If so, it is clear to me Nasim is not saying she disagrees with getting a MRI to look at possible CCI if symptoms develop that strongly suggest some structural issue could be happening. She is, rightly in my opinion, saying it is possible CCI in someone with a ME diagnosis was misdiagnosed with ME. I too think it’s much more likely that if all symptoms are resolved by CCI surgery then it should be considered ME was a misdiagnosis. As she said Chairi (which I know is not CCI) is listed as an differential diagnosis and so it makes sense it’s the same with CCI.

 

[StarChild56]

When you say above to Nasim ‘it’s totally fine if you disagree or if anyone disagrees’ are you still implying Nasim is saying she disagrees with getting a MRI? If so, it is clear to me Nasim is not saying she disagrees with getting a MRI to look at possible CCI if symptoms develop that strongly suggest some structural issue could be happening. She is, rightly in my opinion, saying it is possible CCI in someone with a ME diagnosis was misdiagnosed with ME. I too think it’s much more likely that if all symptoms are resolved by CCI surgery then this was a ME misdiagnosis.

So when I read this part:
"Today, I remain ill after 36 years of ME. And it concerns me a little that because of Jennifer's and Jeff's experiences of CCI that some with ME are perhaps now alarmed they have CCI, or similar, and also seeking neurosurgery tests/surgery unnecessarily. Of course, if one develops further new frightening symptoms, as both Jeff and Jennifer did, further investigations should be made. But troubling neck issues are also simply part and parcel of myalgic encephalomyelitis. That is a fact. " -

The "But troubling neck issues are also simply part and parcel of myalgic encephaloyelitis. That is a fact." - part is what prompted me to write my concerns, my opinon - that cervical MRIs are necessary if you have neck pain. Old or new. That it is not exclusively part of ME. Additionally, "seeking surgery unnecessarily" is also rather difficult as it is a giant process to go through to even get the surgery and you would be screened out way before surgery would happen - for instance, when an MRI came back negative (for CCI/AAI, Chiari).

So I am not implying anything - I am asserting my beliefs. I did not want to reply to her OP because I was not arguing with her only adding my opinion about MRIs.

Since it seemed I had offended her, I apologized if I made her feel her opinions are not welcome. Whether I agree or not.

I made no comments about her post directly as I was not trying to argue any points. I did feel that as I noted above, cervical MRIs are often needed if you have ongoing neck problems, period (not just if CCI is suspected). Her statement I quoted above - including: "also seeking neurosurgery tests/surgery unnecessarily" - could refer to cervical MRIs given the context of her post. So I do not know what her opinion is about cervical MRIs beyond what I read. What she wrote could mean she does not think one should get an MRI of the neck even if you have neck problems unless as she wrote, "if one develops further new frightening symptoms, as both Jeff and Jennifer did, further investigations should be made". But I believe that if you have neck pain and problems, even if they are not "new frightening symptoms" - a cervical MRI is often in order. As a matter of fact, it is pretty standard practice that if you have ongoing pain and problems in your neck, you get some PT and still have problems, an MRI will be ordered to find out what is going on in the neck. It happened to me, I've known many people that have had this experience and their problems were nowhere near as frightening as Jeff's or Jen's. Including myself in that.

The whole reason I did not reply directly was to not argue - only to add emphasis to something that I felt was important and seemed to possibly be a different opinion than hers. And I am entitled to that, as she is to her opinions.

I did not feel I was being rude or argumentative - but apologized when it seemed that she may have felt I was.

Why you are questioning me about it in the way that you are, I am unclear. Especially since I apologized to her already.

 

[StarChild56]

If so, it is clear to me Nasim is not saying she disagrees with getting a MRI to look at possible CCI if symptoms develop that strongly suggest some structural issue could be happening.

To be more clear: I was asserting that a cervical MRI is indicated with on going neck problems in many cases, even if there are absolutely no reasons to suspect CCI/AAI or Chiari. I can a very important diagnostic tool.

 

[toyfoof]

From my own point of view, as one who has sought out an MRI after reading Jeff's and Jen's stories, I feel that having the information from the MRI will only help guide me in my next steps. If nothing shows up on the MRI, I stay the course. If it does, I have new information to process with my doctors and family.

I never had Chiari or CCI ruled out or even mentioned during my (long) search for a diagnosis. I am officially diagnosed with CFIDS and chronic, active EBV. So I feel like I'm going back and completing that step that was missed in my diagnosis.

stated that you risk becoming quadriplegic if you have any manipulation of the neck. Additionally if you have EDS or other connective tissue disorders it puts you at risk of possible stroke or other problems with your arteries and such (he also used the word dissection which I am not sure what it means in this context).

This is a little off topic, but I have direct experience with it -- he means aortic dissection, which is when the aorta separates or an aneurysm bursts. My boyfriend had an aortic dissection 2 years ago; only about 10% of people survive a type A dissection (the top part of the aorta that feeds the other arteries). My boyfriend survived with surgery. When he heard me talking about EDS, he got upset because EDS is commonly comorbid with dissections. But I'd rather know I have it and be alert for the warning signs so I could get help right away like he did.

people with a robust ME diagnosis now thinking they have CCI, when they most likely don't.

I don't feel that I have a "robust" ME diagnosis, and I remain open to other diagnoses that might explain my symptoms.

I can see that no one is really going to read my comment and respond to what I have suggested ie. *possible* misdiagnosis of ME when one had CCI all along.

I'm open to having been misdiagnosed, especially since I feel that my CFIDS diagnosis is pretty useless. If it turns out my symptoms have been caused by CCI, then I will turn my attention to treating that issue. If not, I will keep working with my doctor to treat the immune, viral, hormonal, etc. irregularities we have uncovered so far.

Personally, I think I can come across as very excited and focused on one thing (in this case possible CCI diagnosis and surgery) because I joined this group in order to discuss it, and I tend to talk a lot about what is currently on my mind in order to work through things in my head. I can't speak for everyone, but I'm glad everyone is posting so openly and sharing their experiences because it's helped me find new avenues to explore and research to conduct.

 

[StarChild56]

I feel that having the information from the MRI will only help guide me in my next steps. If nothing shows up on the MRI, I stay the course. If it does, I have new information to process with my doctors and family.

Agree wholeheartedly.

This is a little off topic, but I have direct experience with it -- he means aortic dissection, which is when the aorta separates or an aneurysm bursts. My boyfriend had an aortic dissection 2 years ago; only about 10% of people survive a type A dissection (the top part of the aorta that feeds the other arteries). My boyfriend survived with surgery. When he heard me talking about EDS, he got upset because EDS is commonly comorbid with dissections. But I'd rather know I have it and be alert for the warning signs so I could get help right away like he did.

Thank you for that information. It was explained a bit on the video, but it was over an hour long and with my cognitive issues that part was a hole for me. I am glad your boyfriend survived. I understand his fears for you. I'm glad you know and know the warning signs. Would you share them with me, even in a DM if you prefer? I have EDS and had no clue.

I'm open to having been misdiagnosed, especially since I feel that my CFIDS diagnosis is pretty useless. If it turns out my symptoms have been caused by CCI, then I will turn my attention to treating that issue. If not, I will keep working with my doctor to treat the immune, viral, hormonal, etc. irregularities we have uncovered so far.

Personally, I think I can come across as very excited and focused on one thing (in this case possible CCI diagnosis and surgery) because I joined this group in order to discuss it, and I tend to talk a lot about what is currently on my mind in order to work through things in my head. I can't speak for everyone, but I'm glad everyone is posting so openly and sharing their experiences because it's helped me find new avenues to explore and research to conduct.

I am also open to being misdiagnosed but also know that I may have CFIDS and CCI/AAI and CSF leaks - just like I have CFIDS, POTS, MCAS, SIBO, EDS, etc. I just want to identify what I have, and treat it if possible. Already doing that on many fronts, the CCI/AAI and CSF leaks are the most recent discoveries.

I too am very excited about the CCI/AAI and CSF leaks and surgery because Jeff and Jen have given me hope that I can recover - at the very least I can expect the constant, horrific neck/base of skull pain and 28 horrific migraines a month. If I still have CFIDS I will still be very ill but taking away those structural issues will be amazing. If I am lucky and it resolves POTS/MCAS...wow even better. If it turns out I am recovered and so did not have CFIDS in the first place, great!

If Jeff had not pursued his diagnosis so doggedly, shared it with the doctor we both share - then I would not know about CCI/AAI and my doctor probably would not either. I would be doomed to crippling and disabling pain and taking dangerous amounts of meds to try to control the migraines. My own PCP was so thankful that my specialist is spear heading my treatment because she said that in her decades of experience with people with neck problems she's never seen an MRI as bad as mine and would not know what to do with me.

If I did not check in with my specialist, and this was before my MRI was reviewed by the neurosurgeon - and tell him that since I was on a forever waiting non list to Stanford to fix my probable CSF leaks (I was approved but they have so many people waiting and I've already waited 6 months, they could not even estimate when I'd be seen) - I was going to ask my PCP to send me to an ortho to get epidural shots and even consider surgery. My specialist warned me that with my issues - that would be very dangerous. Which I did not realize and was just desperate to get relief.

So I am grateful for the info being put out here.

 

[toyfoof]

I'm glad you know and know the warning signs. Would you share them with me, even in a DM if you prefer? I have EDS and had no clue.

I'm sending you a DM. If anyone else is curious, I can start a new thread or answer in DM.

 

[StarChild56]

I'm sending you a DM. If anyone else is curious, I can start a new thread or answer in DM.

Thank you!