Seeking information on long-term outcomes with Dr. Kaufman

[jeff_w]

@jeff_w if cranial settling and often Chiari are only seen on upright MRIs does that mean people with those conditions only have symptoms when erect? and when lying down no symptoms as brain stem not being constricted?

Symptoms lying down can also be severe. In my case, I had to lie down in the Trendelenburg position (head of bed slanted down, relative to foot of bed) in order to feel relief. Lying down flat (without being slanted down), my symptoms were still severe, though less so than when upright.

 

[Rlman]

@jeff_w wow, that is scary! did you ever have a brain MRI lying flat? i'm guessing you did? that would be weird that it wouldn't show anything considering you were feeling so bad even when lying flat

 

[jeff_w]

@jeff_w wow, that is scary! did you ever have a brain MRI lying flat? i'm guessing you did? that would be weird that it wouldn't show anything considering you were feeling so bad even when lying flat

@Rlman -

The problem is with neurosurgeons. They aren't trained to evaluate MRIs for craniocervical instability/settling *unless* it results from an acute trauma. In those trauma cases, it presents differently on imaging, and they'll find it. There are literally only a handful of neurosurgeons in the world who are capable of diagnosing this problem when it does not occur from an injury.

To answer your questions: I had MRIs while flat. I was told by Cedars-Sinai neurosurgeons that the flat MRIs were "fine," "not even equivocal." But, flat imaging still showed problems. It's just way more subtle and very likely to be missed, so flat imaging is not recommended. It leads to missed diagnoses, which leads to being dismissed by doctors.

I also had a flat flexion-extension CT scan. This scan was useful, because it was dynamic imaging (flexion-extension) rather than taken with me lying still. This scan confirmed ligamentous laxity, cranial settling, occipiticervical dissociation, and brain stem compression. My upper spinal column was protruding into my skull, crushing my brain stem. However! The neurosurgeon who ordered that flexion-extension CT and interpreted it was already looking for those problems. He is also the very top neurosurgeon at Cedars-Sinai in Los Angeles, CA.

All of the neurosurgeons working under him missed my problem completely.

 

[Rlman]

@Rlman -
To answer your questions: I had MRIs while flat. I was told by Cedars-Sinai neurosurgeons that the flat MRIs were "fine," "not even equivocal." But, flat imaging still showed problems.

@jeff_w so just to confirm your flat MRI did show problems relating to cranial settling etc that should have been picked up, but was missed by the radiologists/neurosurgeons? did the top neurosurgeon take a look at your flat MRIs after the CT was done and tell you he saw the issues there as well? i'm just asking as i am wondering if i should get a second opinion on my flat MRIs, though of course i know upright flexion-extension MRI is better to do as you said.

 

[jeff_w]

so just to confirm your flat MRI did show problems relating to cranial settling etc that should have been picked up, but was missed by the radiologists/neurosurgeons? did the top neurosurgeon take a look at your flat MRIs after the CT was done and tell you he saw the issues there as well?

According to the top neurosurgeon, the flat MRIs without flexion-extension showed "abnormalities, but nothing specific." He also said the flat MRIs showed nothing that would account for my symptoms. So, the flat MRIs were harmful to me, because they resulted in missed diagnoses from all neurosurgeons, including him. But he at least had the curiosity to pursue further imaging.

i'm just asking as i am wondering if i should get a second opinion on my flat MRIs, though of course i know upright flexion-extension MRI is better to do as you said.

Don't bother with flat MRIs. Even the top neurosurgeons can't make use of them. Get upright, flexion-extension MRIs and send them to the three neurosurgeons in the world who know how to interpret them.

 

[Gingergrrl]

All of the neurosurgeons working under him missed my problem completely.

Although I do not fully understand the details of EDS or this issue, I can tell you after having visited Jeff at Cedars back in July, he did NOT give up. He and his family and his main doctor (who is also my doctor) advocated until they got the right tests and got an answer and he will be having surgery with the top specialist in NY at the end of Jan. If anyone in this thread thinks you may have this same problem, do not give up until you find the answer. Jeff was very inspiring to me re: not giving up (even though I was fighting for a different treatment).

 

[Isaiah 58:11]

I did not tolerate LDN

Care to elaborate? It doesn't seem to work for me either.

 

[bspg]

Anyway, in May of this year, my neurological symptoms that you're describing became so severe, that Dr. Kaufman ordered an upright, flexion-extension MRI.

I'm always amazed by the breadth of things Dr. Kaufman knows. How does he know about so many things?! I feel like most doctors don't know their ass from a hole in the ground and he's over here diagnosing all this crazy stuff. He's a wizard! ╰(•̀ 3 •́)━☆ﾟ.*･｡ﾟ

Also, I agree with @Rlman in that it's great to see you here @jeff_w! You and @Gingergrrl were hugely inspirational in my decision to go see Dr. Kaufman. I feel that I owe you both a debt of gratitude. Thank you!

 

[Nickster]

You bet! When Dr. Kaufman wrote my MRI order, he said it was not common to order an upright flexion-extension MRI. So it might be a good idea to double check that your order is for that exact type of MRI.

Any other type of MRI or X-ray will miss the problem if you have CCI.

@jeff_w Did Dr Kaufman prescribe you IVIG or rituximab? If so, what type of results did you have?

My son is very sick and his Dr talked about doing ivig.

 

[Rlman]

I came back positive for 4 antibodies on the cunningham panel. and waiting on other testing. I wonder how reliable the cunningham testing is compared with controls?

just found this study from Nov 2017: https://www.ncbi.nlm.nih.gov/pubmed/28919236. in the abstract it says that "A majority of the healthy controls had pathological Cunningham Panel results and test-retest reliability proved insufficient."
So it seems healthy people are positive too.... the full study is available to read, i haven't read it yet.

 

[jeff_w]

@jeff_w Did Dr Kaufman prescribe you IVIG or rituximab? If so, what type of results did you have?

We've discussed doing this but haven't pursued it yet. I'm having surgery in late January, and we'll see how much improvement I have from that. If I'm still unwell, then IVIG and Ritux are next steps.

 

[Nickster]

@jeff_w I wish you much success with the surgery!

 

[Rlman]

just found this study from Nov 2017: https://www.ncbi.nlm.nih.gov/pubmed/28919236. in the abstract it says that "A majority of the healthy controls had pathological Cunningham Panel results and test-retest reliability proved insufficient."
So it seems healthy people are positive too.... the full study is available to read, i haven't read it yet.

Another excerpt from the study: "Ten out of 21 (48%) healthy controls had positive CaMKII results as compared to 35 out of 53 (66%) in the study sample. Seventeen had at least one positive autoantibody titer, resulting in a total of 18 (86%) healthy controls with at least one positive value on the Cunningham Panel, compared to 92% in the study sample.

also in Dec 2017 there was a corrigendum to the article https://www.ncbi.nlm.nih.gov/pubmed/29153602 by the authors but i can't get access to it

 

[Vojta]

@Rlman Yeah, I don't take Cunningham Panel seriously despite being positive on D2 ab. The test is just poor. Dr. K told me that the border is lower for adults than in the test fo children. So I asked the lab and truth is they don't have any data supporting that and they don't even have much data for healthy population. So it's pretty much useless expansive test. I don't feel very convinced that this test and low positive on some celltrend ab (not those who were positive in CFS study) were enough evidence to start Rituximab which I started over month ago.

 

[pattismith]

@Rlman Yeah, I don't take Cunningham Panel seriously despite being positive on D2 ab. The test is just poor. Dr. K told me that the border is lower for adults than in the test fo children. So I asked the lab and truth is they don't have any data supporting that and they don't even have much data for healthy population. So it's pretty much useless expansive test. I don't feel very convinced that this test and low positive on some celltrend ab (not those who were positive in CFS study) were enough evidence to start Rituximab which I started over month ago.

Hello Vojta, are you doing well under Ritux? Maybe it's to early to say yet?

 

[Vojta]

Hello Vojta, are you doing well under Ritux? Maybe it's to early to say yet?

So far no change at all. There were no complications. I don't think it will work for my ME/CFS. It is just exapansive long shot in my opinion. But I was just hoping for some improvement of MCAS and other rarer symptoms but nothing so far. I still need to source some other medications for other things which were expansive in US but I don't have doctors to prescribe them to me at home yet. It means I will have to try to convince like 5 different doctors for every drug I should try.

Anyway if someone takes Ketotifen I have bottle (1mgx178caps). I can't take because I got sick from it just after 1-2 doses and it cost me like 220$...

 

[Nickster]

So far no change at all. There were no complications. I don't think it will work for my ME/CFS. It is just exapansive long shot in my opinion. But I was just hoping for some improvement of MCAS and other rarer symptoms but nothing so far. I still need to source some other medications for other things which were expansive in US but I don't have doctors to prescribe them to me at home yet. It means I will have to try to convince like 5 different doctors for every drug I should try.

Anyway if someone takes Ketotifen I have bottle (1mgx178caps). I can't take because I got sick from it just after 1-2 doses and it cost me like 220$...

Have you tried ivig? If so, what was your outcome?

The doc wants my son to do ivig.

 

[aquariusgirl]

I have been wondering about Consulting Kaufman but I feel my issues have a lot to do with toxins...heavy metals ....oxolates...maybe copper & iron dysregulation & he doesn't seem to factor that in ..,

I have infections also. I currently work with a MAPS or autism doctor.

It's such a big investment of time & $$$ ..,it's hard to know what to do.

 

[ivorin]

Update:

I am experiencing increasing chest and neck pains as well as neuro-mental issues. The meds I've been given, that I listed before don't seem to be helping at all with MCAS (which I don't believe I have) and could possibly causing me to feel worse.

I feel very torn about submitting myself to Rituximab treatment based on the Cunningham panel given the information provided by Riman. The only other proof of autoimmune involvement is a slightly positive Celltrend panel which is also a very questionable finding.

I don't know what to do. I am declining and have nowhere else to go. I don't think I will make it for another few years which we need even by the most positive expectations. I am unhappy and in pain beyond what I could have even have dreamt before ME, I want to live so badly but whatever I try just keeps backfiring and making me worse. I feel like this has only one way of ending and that's with me taking my own life.

I really need help with coping with the sadness and loneliness but I have extremely bad reactions to antidepressants and supplements meant to help with mood and stress, and I've no idea what to do.

 

[Rlman]

Hi @ivorin, i'm so sorry to hear about the tough and despairing situation you are in
In older threads of yours you mentioned you were investigating heavy metal toxicity as cause of your illness. did you ever end up trying chelation like the Cutler chelation protocol to see if it would help?

Btw if you think your case could be similar to @jeff_w's, this site http://www.thepainrelieffoundation.com/craniocervical-instability/ suggests an at home test: "How is Craniocervical Instability Diagnosed:
Upright MRI and Rotational 3d CT scans are the standard imaging techniques used to determine if CCI is present individuals with EDS. A definitive diagnosis of CCI can be made by a technique known as Invasive Cervical Traction (ICT). ICT is an inpatient procedure where the paitent’s head is pulled upward by a pulley system. If, over the course of 48 hours, the patient’s symptoms are cleared, CCI is confirmed. Because ICT is rarely available in typical hospitals, as an alternative a doctor may simply pull the patient’s head up off the spine in the doctor’s office. If there is a reduction in pain and symptoms, it confirms the diagnosis. Patients may also have an extreme worsening of symptoms if their head is pushed downward."

Please don't give up hope. I wish you strength and blessings for a full recovery to vibrant health.