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

[xrayspex]

@jeff_w do you have any opinion/information on Dr Dan Haffez or Wisconsin Chiari Center? I'm asking because my MECFS specialist happened to be at a symposium where he lectured on the link between fibromyalgia and chiari in a certain subset of patients. He seems to understand the connection but I need to know about his skill level

surfergirl did you find out any updates information on Daniel Heffez in Milwaukee? Before Jeff so excellently researched and highlighted the potential cervical/cranial issues that can relate to cfs/me Heffez had some of the only info I knew of about similar issues in CFS world. I am also curious how folks in the EDS world view him (because I live in midwest). I have instabilty in my neck and some other issues and in many ways i fit this model of CFS that Jeff is talking about although I don't think I have classic EDS but hypermobility syndrome worsened by some injuries right before developing CFS and pain etc

 

[Mary]

hi dear PR admin/moderator: might we be able to change the title on this thread to include CCI, since that is widely discussed on this thread and would be easier to find if it were included in the title?

Hi @RRR and @JenB - I changed the title, that was a great suggestion.

FYI, to get the attention of a moderator, it's bests to either "report" a post (hit "report" button at the bottom of the a post) or do a PM to one of the moderators. I just happened across the request to change the title of this thread, but it could have been easily overlooked.

edited to add: or actually the easiest way is to tag one of the moderators (@Sushi, @Learner1 or @Mary) with your request

 

[jeff_w]

Hi @xrayspex and @surfergirl

@jeff_w do you have any opinion/information on Dr Dan Haffez or Wisconsin Chiari Center? I'm asking because my MECFS specialist happened to be at a symposium where he lectured on the link between fibromyalgia and chiari in a certain subset of patients. He seems to understand the connection but I need to know about his skill level

I just looked into Dr. Heffez at the Wisconsin Chiari Center. There are many posts about him in Beyond the Measurement. Based on people's experiences, I wouldn't recommend him. There are about 2 positive posts for every 10 negative posts.

He at least understands that conditions like Chiari and CCI exist. He also knows the basics of how to identify and fix these issues, which puts him way ahead of most neurosurgeons. But, the themes I'm seeing in people's posts are that he's dismissive, has hit-or-miss surgical results, poor follow-up, won't investigate multiple causes, and fails to catch problems that other neurosurgeons find on second opinion.

Frustrating. I really want to be able to recommend more expert neurosurgeons, because the need for them is overwhelming

 

[StarChild56]

@jeff_w - we share the same doctor (Dr. K). Because of what you have gone through - he knew what to look for in me and push and push and long story short, he actually met with Dr. Bolognese and showed him my MRI and they determined I am a candidate for the CCI (and I believe AAI, as well) surgery - Dr. K already suspected CSF leaks, which Dr. Bolognese can also fix. So now I am at the step where I am to fill out the online new patient forms (he spoke to Dr. Bolognese again, that I am ready to go forward) and gave me the email of I guess the new patient coordinator for any questions. Meanwhile, I am having manual cervical traction from a PT who has her doctorate and who Dr. K spoke to personally to instruct her (she said that has never happened before); and he just sent me the links to the cervical collar and the home traction machine I am to use, sitting, with 20 lbs of pressure daily for 20 minutes (or was it 30 lbs?). I will take the traction machine to my PT next Monday for her to show me (and my family, who will have to assist me, I am very weak) how to use it properly.

Like you (did), I have MCAS, POTS, I also have EDS and a bunch of other stuff. But in many ways similar to you.

I recently watched a video Dr. Bolognese made and was interested when he noted that the cervical collar only immobilizes the neck; so that would not help someone with cervical settling. I thought of you...and I don't know if I have cervical settling or not but I know that I am at the very end of my rope with the pain, weakness, dizziness and inability to do most things most of the time.

I don't know how soon they will be able to get me in but I am guessing probably no sooner than 6 weeks.

Anyway, I thank you for paving the way and for being so curious, and relentless in the face of aggression and malpractice.

I thank @Gingergrrl for sending me to this thread.

I also wondered, @jeff_w - and you do not have to answer if it is too personal - about pain control. Now that there is such opoid hysteria, how did they go about managing your pain?
Also, I used to take hydrocodone 2x daily and then became "allergic" to it - I believe it was my MCAS though I was undiagnosed at the time, I started becoming allergic to meds I'd taken many times and this is when my environmental allergies got out of control as well, which then made my asthma absolutely horrific to manage. I stopped taking them, after taking them for years.
So I also need to discuss with Dr. K, because after having so many MCAS meds for a while - one of my huge allergies - adhesive - seems gone. I had an IV in 2015 and my tagaderm (the clear tape over the IV) caused red, raised blisters. They couldn't even use paper tape - finally they went to the Children's ER (same hospital) and found a non adhesive covering that worked, but even the finger monitor they had to move every hour as the adhesive caused irritation. After that, a band aid for 10 minutes caused a raised, itchy rash.

But early November, I had an infusion (for MCAS) and the nurse used the tagaderm tape over the IV - 2 hours. Not a singe problem, not even pink skin.

So I will have to talk to Dr. K and Dr. B's team about pain management. Cause this sounds like a painful surgery and recovery.

Thanks.

 

[Gingergrrl]

I thank @Gingergrrl for sending me to this thread.

You are sweet but no need to thank me. When I learned about your situation, I knew immediately that you HAD to talk to Jeff (who has been a trailblazer for patients with CCI/AAI). I'm going to reply to your other thread shortly.

 

[jeff_w]

Hi @Forçe e Honra ,

@jeff_w - we share the same doctor (Dr. K). Because of what you have gone through - he knew what to look for in me and push and push and long story short, he actually met with Dr. Bolognese and showed him my MRI and they determined I am a candidate for the CCI (and I believe AAI, as well) surgery - Dr. K already suspected CSF leaks, which Dr. Bolognese can also fix.

This is great. Dr. Bolognese is one of the best neurosurgeons for these issues. I had both CCI and AAI, so I was fused from my skull to my C2.

Like you (did), I have MCAS, POTS, I also have EDS and a bunch of other stuff. But in many ways similar to you.

We sound very similar. If your POTS and MCAS are being caused by these same mechanical neurological issues, then they might go away after surgery. After my fusion surgery, once the surgical swelling subsided, my POTS was 100% gone and my MCAS was 80% gone. I have since had a tethered cord release, and after that, my MCAS was gone completely.

I recently watched a video Dr. Bolognese made and was interested when he noted that the cervical collar only immobilizes the neck; so that would not help someone with cervical settling. I thought of you...and I don't know if I have cervical settling or not but I know that I am at the very end of my rope with the pain, weakness, dizziness and inability to do most things most of the time.

Have you tried to see if different positions help you? Such as Trendelenburg?

I definitely had cranial settling. The collar helped my symptoms, but only partially, and only for a month. After a month, the collar wasn't enough to keep me upright, but it did help keep my neck stable while I was bedbound. Although there was still weakness and dizziness while bedbound, the collar made it a bit less severe. The Trendelenburg position helped me a lot.

I don't know how soon they will be able to get me in but I am guessing probably no sooner than 6 weeks.

Yes. The waiting is rough.

Anyway, I thank you for paving the way and for being so curious, and relentless in the face of aggression and malpractice.

Thank you.

I also wondered, @jeff_w - and you do not have to answer if it is too personal - about pain control. Now that there is such opoid hysteria, how did they go about managing your pain?

Dr. Bolognese's team has really good pain management. When you wake up after surgery, you'll be hooked up to a pain pump device that delivers IV pain meds when you press a button. The timing and amount of pain meds are completely under your own control. After a few days on the pain pump, they will transition you to oral or transdermal pain meds. I did well on the Fentanyl patch and had very little post-op pain, because they were on top of everything.

Dr. Bolognese will discharge you with a prescription for several weeks of pain meds. After about 2 weeks post-op, I found that pain was minimal. But sometimes, people will need pain meds for longer than 2 weeks. Do you have a local pain management doctor? If not, it would be good to connect with one now, prior to surgery, if you're able to. That way, if you end up needing pain control for longer than a few weeks, you'll have someone local to help you. I think most pain management docs will understand post-surgical pain, and they'll be more likely to believe that you're in pain, and to treat your pain, given your recent surgery.

Also, I used to take hydrocodone 2x daily and then became "allergic" to it - I believe it was my MCAS though I was undiagnosed at the time, I started becoming allergic to meds I'd taken many times and this is when my environmental allergies got out of control as well, which then made my asthma absolutely horrific to manage. I stopped taking them, after taking them for years.

Yes. You might want to experiment prior to surgery. If Dr. Kaufman is on board with this, maybe he can have you try a small amount of pain meds to see how you react to them. If you have a MCAS reaction to hydrocodone, then you could try a different pain med and see how you react. A lot of MCAS patients handle Fentanyl better than the oral opioids. This was true in my case.

If you can experiment with this ahead of time, you'll have a good idea about which meds will work for you post-op.

So I will have to talk to Dr. K and Dr. B's team about pain management. Cause this sounds like a painful surgery and recovery.

I found that as long as I stayed on top of the meds, I didn't have to be in pain.

Good luck with all of this! I'm looking forward to reading about your journey.

 

[xrayspex]

Hi @xrayspex and @surfergirl



I just looked into Dr. Heffez at the Wisconsin Chiari Center. There are many posts about him in Beyond the Measurement. Based on people's experiences, I wouldn't recommend him. There are about 2 positive posts for every 10 negative posts.

He at least understands that conditions like Chiari and CCI exist. He also knows the basics of how to identify and fix these issues, which puts him way ahead of most neurosurgeons. But, the themes I'm seeing in people's posts are that he's dismissive, has hit-or-miss surgical results, poor follow-up, won't investigate multiple causes, and fails to catch problems that other neurosurgeons find on second opinion.

Frustrating. I really want to be able to recommend more expert neurosurgeons, because the need for them is overwhelming

Jeff thanks so much for vetting him......I have heard some similar critiques but I didn't know the odds were that stacked against him--very helpful to know! Bummer tho because he is closest one to me. I am trying still conservative approach but if things get worse looks like I will have to travel....my reflexes have been jumpier since concussion this summer and I know my neck got tweaked....its so interesting to watch as all my care providers have no clue to connect it to my cervical spine issues....I am too weary to try too hard to educate them but am just monitoring and will try to find a way to consult one of the experts you mention if things get dire

another neurosurgeon I consulted during a bad flare was Dr Lao in Seattle---he isn't an expert on all the issues you and Jen are highlighting but he was utilized by Andrew Holman who studied fibromyalgia/CFS patients with cervical issues for many years and he sent the surgical candidates to Lao that didnt respond to conservative care. Lao was voted one of best surgeons in Seattle at time I saw him few years ago, I don't know if that counts for much but he was respectful and validating of my problem and discussed pros and cons of surgery. I have not fully vetted him (feels hard for my brain these days). Here is some stuff about Holman http://www.positionalcordcompression.com/images/J_Pain_2008_PCMS.pdf
https://www.practicalpainmanagement.com/pain/editors-memo-fibromyalgia-time-be-secondary-diagnosis
My impression is that after researching and advocating for years he faded away because I don't think he was able to rally the med community to explore more how cervical issues play into chronic poorly understood disability like CFS or fibro and auto-immune etc

 

[StarChild56]

This is great. Dr. Bolognese is one of the best neurosurgeons for these issues. I had both CCI and AAI, so I was fused from my skull to my C2.

This helps me as I was trying to ask my PT where each one was and she said the atlas (I thought) was the top but I got confused so thanks.

We sound very similar. If your POTS and MCAS are being caused by these same mechanical neurological issues, then they might go away after surgery. After my fusion surgery, once the surgical swelling subsided, my POTS was 100% gone and my MCAS was 80% gone. I have since had a tethered cord release, and after that, my MCAS was gone completely.

Wow. Gives me so much hope.

Have you tried to see if different positions help you? Such as Trendelenburg?

Will look up Trendelenburg. Laying flat/reclining flat is most helpful to me. Sometimes, like on the PT table, when my head was a little lower than my body, it was even more helpful (the table has that indented part I am guessing for when patients lay face down, so it only had my head an inch lower than my body but I noticed a distinct positive difference).

Dr. Bolognese will discharge you with a prescription for several weeks of pain meds. After about 2 weeks post-op, I found that pain was minimal. But sometimes, people will need pain meds for longer than 2 weeks. Do you have a local pain management doctor? If not, it would be good to connect with one now, prior to surgery, if you're able to. That way, if you end up needing pain control for longer than a few weeks, you'll have someone local to help you. I think most pain management docs will understand post-surgical pain, and they'll be more likely to believe that you're in pain, and to treat your pain, given your recent surgery.

Well I'm relieved to hear that the pain was minimal after about 2 weeks, very relieved. I do have a pain management doctor I have seen in the past that is part of my health system so I could go there if needed. Thanks - it all makes a lot of sense.

Yes. You might want to experiment prior to surgery. If Dr. Kaufman is on board with this, maybe he can have you try a small amount of pain meds to see how you react to them. If you have a MCAS reaction to hydrocodone, then you could try a different pain med and see how you react. A lot of MCAS patients handle Fentanyl better than the oral opioids. This was true in my case.

If you can experiment with this ahead of time, you'll have a good idea about which meds will work for you post-op.

Such great advice. Will definitely take it.

I found that as long as I stayed on top of the meds, I didn't have to be in pain.

Good luck with all of this! I'm looking forward to reading about your journey.

Thank you so so so much I will update as things arise

 

[StarChild56]

@jeff_w - so correction needed. Most often I lay in my recliner and my feet are raised a bit and sometimes I put a giant fluffy pillow under my legs so that my feet/legs are raised another 6 inches or so - which sounds like the Trendelenburg. That is often my most comfortable (vs. actually flat).

 

[Gingergrrl]

This helps me as I was trying to ask my PT where each one was and she said the atlas (I thought) was the top but I got confused so thanks.

@Forçe e Honra I keep meaning to ask you, is your neck pain exclusively where your skull meets your neck?

My neck pain shoots down the entire right side of my neck but the most severe part is much lower where the bottom of my neck meets my right shoulder (trapezius muscle?) and then it shoots down my right triceps. It almost never goes past the upper arm except on rare occasions when the entire arm feels numb.

I think that is why our doc does not feel whatsoever that I have CCI (and I agree) vs. bulging dics/stenosis, etc. My PT thinks the messed up discs are C5 and C6. I still need to order my old MRI image & report but am almost positive that it said the problem was with C3 and C4 (back in 2010). I expect it is a lot worse now eight years later.

 

[toyfoof]

In preparation for my doctor's appointment today (in which I will ask for an MRI order), I looked up EDS/hEDS diagnostic criteria, in case it will help me make my case. Interestingly, I pretty much meet most of the hEDS criteria: https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

(You can see pictures of the Walker sign and Steinberg sign here -- I can do both: http://www.mamcjms.in/article.asp?i...me=3;issue=2;spage=111;epage=112;aulast=Gupta)

Hopefully bringing all of this information with me will get me the MRI. I only have health insurance through May (and then I may have to go on Medicaid) so I'm very hopeful we can get this moving.

I am SO thankful that I found this thread (and @Forçe e Honra and @JenB's which I am also following with interest). Thank you all for sharing your stories and giving hope where it's been missing for so long!

 

[StarChild56]

@Forçe e Honra I keep meaning to ask you, is your neck pain exclusively where your skull meets your neck?

No it is not.
I do have very bad pain where my skull meets my neck - but it also goes down the left side of my neck, into my shoulder, arm and down my hand/fingers - and I get N&T as well. Sometimes the pain goes down the right side of my neck/shoulder arm and I get N&T there as well. I have congenital narrowing in my neck as well as stenosis, severe at some of the facet joints (bi lateral) and the herniations I have in 3 discs protrudes into the dura - 2 others are also severe but not as bad as the 3. I have a lot of bone spurs. I have severe problems at almost every cervical vertebra. My cervical MRI was horrific. My PCP said she'd never seen one as bad as mine.

I did have the extra views that Dr. K wanted done with that MRI.

My MRI from 2014 to 2018 - drastically different.

I've had the left side of neck down arm pain much longer, though, than the skull meets neck area. Since 2013.

I think that is why our doc does not feel whatsoever that I have CCI (and I agree) vs. bulging dics/stenosis, etc.

While I can't say why he doesn't think you have CCI, I can say I have horrific completely herniated (much bigger than most bulges) discs and stenosis, bone spurs, etc - at almost every level. So having those types of problems for me are in addition to CCI (maybe AAI) and did not rule it out...Struggling for wording so forgive me if it does not make sense.

 

[StarChild56]

In preparation for my doctor's appointment today (in which I will ask for an MRI order), I looked up EDS/hEDS diagnostic criteria, in case it will help me make my case. Interestingly, I pretty much meet most of the hEDS criteria: https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

(You can see pictures of the Walker sign and Steinberg sign here -- I can do both: http://www.mamcjms.in/article.asp?i...me=3;issue=2;spage=111;epage=112;aulast=Gupta)

Hopefully bringing all of this information with me will get me the MRI. I only have health insurance through May (and then I may have to go on Medicaid) so I'm very hopeful we can get this moving.

I am SO thankful that I found this thread (and @Forçe e Honra and @JenB's which I am also following with interest). Thank you all for sharing your stories and giving hope where it's been missing for so long!

I pulled up your links I would like to look at them later when my brain is not filled with cement.

I hope you can get your MRI with the needed flexion/extension views very soon. Hope it helps you on your journey to better health

 

[toyfoof]

I got the MRI order! My PCP was very interested in the stories I shared from here, as well as my EDS research. He agrees that this is worth looking into and he put in the order with all sorts of diagnostic codes and notes in the hopes that my insurance will not have any reason to decline. He said he has other patients that may benefit from this research and he will be following my case closely.

My ME/CFS doc, who I also saw today (video) is much more skeptical. We talked for a long time about it and he looked back through his notes and found that when he first saw me, over a year ago, he noticed that some of my neck and shoulder joints were out. He wants me to try osteopathic manipulation, which I am open to trying, if I can find someone nearby (Sedona, AZ is great for living in natural beauty and fresh air but not so great for healthcare options). He wants me to tread very carefully with any diagnoses from the MRI and is pretty much anti-surgery.

Overall, I feel very good that I got the MRI order and from here on, I just have to go through the steps and see what happens. If it turns out that Dr. B (who I will send the scans to -- I've already corresponded with him via email) thinks I have CCI and am a candidate for surgery, I will work with my doctors and family to make the right decision. I will let you all know, so @jeff_w can update his count if I am also diagnosed!

 

[Wayne]

I've been out of the loop on this thread for a while because I wasn't getting alerts to new posts. -- Just wanted to mention that I had what felt like a new experience this morning that immediately made me think of CCI. I was laying in bed pretty comfortably upon awakening. I was feeling unusually relaxed, so I thought I'd stay in bed a bit longer and enjoy it instead of getting up right away.

But I decided to shift positions from laying on my left side to laying on my right side. As I turned, I slightly stretched, and got into my new position. I was immediately hit with a pretty major dose of vertigo, followed shortly after by a sense of nausea. I thought it would go away fairly quickly, as I'd never really experienced this before. But it didn't.

So I got up and did my normal things, although it felt like I was moving through pea soup, and this lasted for several hours. During this time, I thought of some of @jeff_w's descriptions how turning his head even slightly in different directions could bring on profound symptoms. Jeff, I was wondering if vertigo was one of the symptoms you experienced, and whether you think this experience could be a symptom of CCI? -- Thanks!

 

[jeff_w]

Hi @Wayne

But I decided to shift positions from laying on my left side to laying on my right side. As I turned, I slightly stretched, and got into my new position. I was immediately hit with a pretty major dose of vertigo, followed shortly after by a sense of nausea.

That is exactly what I felt. Vertigo followed by nausea when turning to my right. (I eventually felt it when turning to my left, too, but that came later.)

So I got up and did my normal things, although it felt like I was moving through pea soup, and this lasted for several hours. During this time, I thought of some of @jeff_w's descriptions how turning his head even slightly in different directions could bring on profound symptoms.

Yes.

Jeff, I was wondering if vertigo was one of the symptoms you experienced, and whether you think this experience could be a symptom of CCI? -- Thanks!

Yes! That sounds extremely consistent with CCI/AAI, and I experienced those exact sensations.

 

[StarChild56]

I got the MRI order! My PCP was very interested in the stories I shared from here, as well as my EDS research. He agrees that this is worth looking into and he put in the order with all sorts of diagnostic codes and notes in the hopes that my insurance will not have any reason to decline. He said he has other patients that may benefit from this research and he will be following my case closely.

This is great news, very happy for you and that your PCP shows a willingness to learn and sees how it could help other patients. That is good for you and also for other patients so really good to hear. Best wishes on your journey.

P.S. - I have one suggestion which you may feel free to ignore. I would personally ask Dr. B if he thinks it is okay for you to have any manipulation done on your neck. I have always been pro-Chiropractic (for good providers only just like MDs) - and my PCP was totally on board for me to see my chiro until I had my MRI for my neck. He still said I could have my back adjusted but my neck could not be touched due to the damage there (and it was less severe then than now). My next PCP said the same - was perfectly happy for me to get chiro care, just not the neck. I realize that the osteopath is different, but it is still moving your neck.

 

[StarChild56]

That is exactly what I felt. Vertigo followed by nausea when turning to my right. (I eventually felt it when turning to my left, too, but that came later.)

Wow...when I've had my bouts of Vertigo - turning to my right while laying in bed would bring on violent vertigo at times!
Interesting.
I haven't had it in a while, and last few times it was just mild. But my first 2 bouts (around the same time of the year, 2 or 3 years in a row) were so bad that I fell and hit my head passing out the first couple times I stood up, till I used my husband or adult kids to actually hug me from behind and walk me to the restroom or wherever I had to go (obviously, avoided doing anything I didn't have to do).

 

[Dakota15]

Not to derail this thread, but is anyone in this thread familiar with lumbar outpouching? I ask because Dr. Bolognese shared with Dr. Chheda that he saw this abnormality on my spine MRI and Dr Chheda mentioned she thinks it could present CFS-like symptoms. Just looking to see if the community is familiar with this abnormality.

 

[toyfoof]

This is great news, very happy for you and that your PCP shows a willingness to learn and sees how it could help other patients. That is good for you and also for other patients so really good to hear. Best wishes on your journey.

P.S. - I have one suggestion which you may feel free to ignore. I would personally ask Dr. B if he thinks it is okay for you to have any manipulation done on your neck. I have always been pro-Chiropractic (for good providers only just like MDs) - and my PCP was totally on board for me to see my chiro until I had my MRI for my neck. He still said I could have my back adjusted but my neck could not be touched due to the damage there (and it was less severe then than now). My next PCP said the same - was perfectly happy for me to get chiro care, just not the neck. I realize that the osteopath is different, but it is still moving your neck.

I actually was thinking the same thing - I’d like to get my MRI results and have Dr. B look at them before I do anything to my neck. I’d hate to change anything or make it worse. Thank you for suggesting this, it makes me feel better about waiting.