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Possible Ehlers-Danlos Syndrome with craniocervical instability

Posted by derrickbff @derrickbff, Sep 25, 2018

I'm sending my scans into the Rochester neurosurgery department with some papers regarding symptoms, measurements, etc. I guess I'm just trying to gauge my chances for being taken seriously with this. I've been seen by 25+ physicians for the same symptoms over 8 years to no avail. I've included the pictures shown here as well as others in the package. Symptoms: loss of balance and coordination, tinnitus, dysphagia, fatigue, formication, constipation and bloating, tremor in both hands, cold hands and feet, slurred speech, 82% oxygen via sleep apnea precursor test. I hope they don't get upset as I've added some pictures of diagnostic procedures for measuring skull angles. I just can't help myself after more or less being dismissed for 8 years. I took the measurements with the image with the red lines. Via the report from Barcelona neurosurgeon Vicenç Gilete the measurements are close. His measurements were 129 degrees neutral CXA (which is pathological) and Grabb-Oakes at 9.4mm which is also pathological.

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rjmtwit | @rjmtwit | Aug 21, 2023
In reply to @jnd2023 "Csalter I am new to this and just learning somewhat how to comment. I was just..." + (show)
@jnd2023

Csalter

I am new to this and just learning somewhat how to comment. I was just fixing to ask the same question about cervical instability at the Mayo Clinic in Rochester. I have been dealing with cervical instability for years, and have teardrop pain daily. I am fused c3-c-6. With the transverse and alar ligaments loose causing the issue. You do need to find a Dr that does the DMX films they are rare I know of one in Denver and ft myers Florida I’ve been to them both. That is the best way to determine if you have instability and how bad. I have been treated at the centennial/Shultz clinic in Broomfield Colorado 5 times with bone marrow steam cell therapy. Since my problem is the alar and transverse ligaments they went in threw the mouth and injected these ligaments the only place in the world to do this. It normally takes 2-4 times since I was fused it has been and still is a difficult area to treat with good success. I’ve spent two years in the process. It is extremely expensive. I’m seeking other options of anyone on this topic and or experience. I messed up and tried soft wave therapy after I had made good progress with steam cell therapy due to the pain I was still experiencing, but my neck was much tighter at the time. . Huge mistake. It took away everything I had done for two years all I had gained. I am broken over this, I was told it would help with the pain, also the doctor said he had done it on necks and no problem, but it breaks everything down and you have to rebuild I was so mislead, now my neck is loose again I’m Dizzy all the time and chronic tight muscles and hard knots in my muscles that bring tears just turning my head and total fog in my thinking. It’s been a long hard journey, I don’t think I have it in me to start over and sure don’t have the kind of funds stem cell therapy cost. Hope this helps be glad to share more or support, but also asking if anyone else is on this journey and if Mayo has anything to offer.

Jump to this post

Sorry for your unsuccessful search. I have had 4-7's ligaments tightened by a Dr. who learned the techniques at Schultz and it was successful. Number 4 was the worst as described by a Digital Motion Xray. The work stopped the worst symptoms but I still have some, so I just do a 'palace guard" neck movement .... chin to the chest and stretch the neck up. I seems to realign the joints. Have had the SI Joint worked on as well and again the same kind of results ... no more partial dislocations or wild hip swings but again I have a movement to realign the joint when it goes off a bit. Good luck.

REPLY
1 reply
colely | @colely | Aug 21, 2023

Hi. I would recommend Dr. Jon Weingart. Neurosurgeon at John's Hopkins. It was from an article about him in the New York Times that lead me to diagnose myself at the age of 52 with Chiari malformation Type 1, causing life- long neurocardiogenic syncope. I had a brain MRI, and a tilt- table test. I had brought this condition up to at least 30 doctors up to that point

REPLY
jnd2023 | @jnd2023 | Aug 21, 2023
In reply to @rjmtwit "Sorry for your unsuccessful search. I have had 4-7's ligaments tightened by a Dr. who learned..." + (show)
@rjmtwit

Sorry for your unsuccessful search. I have had 4-7's ligaments tightened by a Dr. who learned the techniques at Schultz and it was successful. Number 4 was the worst as described by a Digital Motion Xray. The work stopped the worst symptoms but I still have some, so I just do a 'palace guard" neck movement .... chin to the chest and stretch the neck up. I seems to realign the joints. Have had the SI Joint worked on as well and again the same kind of results ... no more partial dislocations or wild hip swings but again I have a movement to realign the joint when it goes off a bit. Good luck.

Jump to this post

Thank you for your kind reply. Is the Dr you saw a name or clinic you can share? I really don’t want to give up. But I’ve heard second opinions are always good. I could give you my phone number or email if you don’t want to share here. So glad your turned out successful.

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rjmtwit | @rjmtwit | Aug 21, 2023

The Dr, Dr. Ben Newton, works out of Stem Cell Arts in Chevy Chase, MD . They are part of a group of Regenerative Medicine Drs. that also have offices in Tysons Corner, in VA. They all trained in Denver, I believe.....
Hope you can find a solution .... I do think that some prolotherapists work differently than others ....

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jnd2023 | @jnd2023 | Aug 23, 2023

Much gratitude for your feedback! I don’t know that I can go threw another year and a half of doing the bone marrow stem cell therapy it was really hard the first time. It was way too long before anyone discovered what the root cause was cervical instability, 40 plus MRIs disco grams catscans you name it . Plus 30 years of living with it and all the damage that was done threw this time. I wish I could talk to someone who has had their complete neck fused and the outcome and pain reduction. I would travel overseas also if I had more insight where and who to see.
I am so limited to what I can do, it seems everyday I’m more and more dizzie more blurred vision and I stay at a level 10 on my pain scale, that’s with taking high doses of pain medication, so thankful to talk to someone.

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x999x | @x999x | Aug 24, 2023
In reply to @colleenyoung "Hi @derrickbff, welcome to Connect where you can meet other patients talking about Ehlers-Danlos Syndrome like..." + (show)
@colleenyoung

Hi @derrickbff, welcome to Connect where you can meet other patients talking about Ehlers-Danlos Syndrome like @kariulrich @jigglejaws94 @blossom2016

Derrickbff, have you been diagnosed with EDS? Or is this what you are trying to get confirmed? Do you know what type you have or suspect to have?
https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes

Jump to this post

Can you add me to EDS groups? I can seem to do it

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Cassie Marie | @csalter | Jun 19 11:33am
In reply to @jnd2023 "Csalter I am new to this and just learning somewhat how to comment. I was just..." + (show)
@jnd2023

Csalter

I am new to this and just learning somewhat how to comment. I was just fixing to ask the same question about cervical instability at the Mayo Clinic in Rochester. I have been dealing with cervical instability for years, and have teardrop pain daily. I am fused c3-c-6. With the transverse and alar ligaments loose causing the issue. You do need to find a Dr that does the DMX films they are rare I know of one in Denver and ft myers Florida I’ve been to them both. That is the best way to determine if you have instability and how bad. I have been treated at the centennial/Shultz clinic in Broomfield Colorado 5 times with bone marrow steam cell therapy. Since my problem is the alar and transverse ligaments they went in threw the mouth and injected these ligaments the only place in the world to do this. It normally takes 2-4 times since I was fused it has been and still is a difficult area to treat with good success. I’ve spent two years in the process. It is extremely expensive. I’m seeking other options of anyone on this topic and or experience. I messed up and tried soft wave therapy after I had made good progress with steam cell therapy due to the pain I was still experiencing, but my neck was much tighter at the time. . Huge mistake. It took away everything I had done for two years all I had gained. I am broken over this, I was told it would help with the pain, also the doctor said he had done it on necks and no problem, but it breaks everything down and you have to rebuild I was so mislead, now my neck is loose again I’m Dizzy all the time and chronic tight muscles and hard knots in my muscles that bring tears just turning my head and total fog in my thinking. It’s been a long hard journey, I don’t think I have it in me to start over and sure don’t have the kind of funds stem cell therapy cost. Hope this helps be glad to share more or support, but also asking if anyone else is on this journey and if Mayo has anything to offer.

Jump to this post

I am so sorry you are going through all of that.

I completely understand the dizziness, brain fog, pain etc. I don't have the financial means nor ability to travel and try to find someone who is more knowledgeable in CCI/Atlas instability.

I was told on my supine MRI that my ligaments were ok? Again, I did not see anyone familiar with instability. As with a lot of people, the supine MRI did not show instability. Which at times, is why an upright and DMX films are requested, from my understanding.

I do need to do PT again with someone who has more knowledge with bendy folks. My muscles are so tight in my neck/trap area on the left from tying to keep my neck where it should be. I need to be more proactive in getting some dry needling and work on relaxing the muscle and building up the right muscles. I am so sorry from work sometimes; all I want to do is go home.

I'd like to avoid surgery, but we will see. I don't have the energy to try and find a Dr like Henderson, Patel and get on their waiting list. Insurance probably won't cover much, and I already have medical bills, school loans, credit card debt. I would honestly just probably "give up". Sounds awful, but I just don't have the energy to deal with it all, nor worry about the cost.

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crazykbl | @crazykbl | Jun 20 10:24am

I know there's a stem cell doctor in the Denver area I do not know where but I hear on the Manny connell show now and then she mentions that she goes to a simcel doctor and she says see what they can do she's on 6:30 a.m. on the AM station she comes on at 2:00 mountain Time and that's the Mandy connell show. And I know there is a doctor in the Denver area someplace . She talks about having bad needs having a bad knee and doing stem cell and she can now walk around and her has been checked doing stem cell on on something on him too and he's doing a lot better.

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