Possible Ehlers-Danlos Syndrome with craniocervical instability

What is FND?

Hi @29821,

Functional neurological disorder (FND) is listed on the National Organization for Rare disorders as a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals. FND is a common cause of disability and distress, due to chronic pain and fatigue, limb weakness, seizures.

Often, FND co-exists with other illnesses – it can have similar symptoms to most types of condition seen in neurology such as multiple sclerosis, stroke and epilepsy. Some patients have both a neurological disease diagnosis such as stroke and FND. A neurologist will usually conduct tests such as
-MRI brain scans, X-rays, functional brain scans (fMRI) to identify whether symptoms are related to brain injuries or abnormalities.
-EEG (electroencephalogram) scans which can track brain waves, allowing doctors to detect problems associated with the brain's electrical activity, such as epilepsy.
https://rarediseases.org/rare-diseases/fnd/
As with any chronic illness, it is important that patients diagnosed with FND fully understand their diagnosis. Also, due to the size and complexity of this condition, the number of specialist nurses and allied health professionals dedicated to this condition has grown significantly.
Hope this helps.

Hi:
I now know for a fact that my problems are in my neck and Cervical. I was at the Mayo Clinic back in 2011 for severe chest pain and at that time I had X-Rays of my spine. I located my reports from the Mayo Clinic regarding my Spine X-Rays and the report says: Dengenerative arthritis cervical facet joints. Narrowed C3-C6 interspaces. Low grade retrolisthesis of C4 on C5. There is more too long to write. No mention of Subluxation for the 2011 report. The Subluxation is on the 2018 report now. So I am assuming that my condition is getting worse. Why Mayo did not tell me that I needed to have an Orthopedic for my future. Or even recommended one for me there. Also why didn’t one of those Doctors at the Mayo look at all of my records from my visit of 2011, it’s right in my record that I have spine problems and they took X-Rays of my Cervical in 2018, all they had to do is look at my results before Diagnosed me with Functional Neurological Disorder. Is it because they are lazy or is it because I am a woman? I do have male friends that go to the Mayo and they get excellent care in the Neurology Department. Back in 2011 the Mayo Clinic misdiagnosed me and told me that I had nothing wrong with my heart. Well I went to the Cleveland Clinic and I was diagnosed with a heart problem. My staggering and lightheadedness is all related to my spine and I just have a hard time understanding why I have to be the one to figure this out when all the information is in my record. The sad part is now I have to lie/not tell the whole story to my Ear Specialist because of the diagnosis that was given to me by the Mayo Clinic. It’s like starting over.

Hello, Redhead. I know this has been frustrating, and I have been through a lot of that myself, but not at Mayo. Doctors try to let you keep hope, and if they were moving right toward an invasive procedure right from the start, that would be cause for concern. If someone told you that your future would be absolutely include spine surgery in 10 years, it would give you something to worry about. I spent 3 years worrying about this, and that caused a lot of anxiety which was affecting my health. I had to learn how to get past the panic attacks I was having because surgery was necessary for me if I didn't want to become disabled. Yes, they can overlook something and make mistakes, and they do have to connect the imaging with a structural problem before any surgeries are considered. Often a physical therapist can improve conditions a lot, and they can help assess where the problem is and relay that to the doctor in charge. You are right to be your own advocate. Often old records are not very helpful because what matters is what your condition is currently. It's easy to start thinking about yourself as a diagnosis, but those are just ways that are used to categorize the issues. As a patient, you do have a lot of power in your health, and if you believe you can improve, you'll increase your chances of that. If you believe that your condition will get worse and no one will help you will increase your chances of that.

I spent 3 years and was seen by 5 spine surgeons before I came to Mayo and all of them missed the diagnosis. I could see the ruptured disc and bone spurs compressing my spinal cord, and I was documenting the progression of my symptoms. My case had an unusual presentation of symptoms which is what confused the surgeons. Cervical stenosis can produce pain anywhere in your body. This was my experience. It was my own research that led me to Mayo because I had just been dismissed by a department head at a university medical center, and then I found medical literature with cases like mine, and none of my doctors would advocate for me and confront him. I didn't think he would listen to me. My dentist offered some advice and said that I wouldn't want someone who is not confident doing my surgery. He was right. I needed a doctor who was familiar and confident. I contacted a Mayo neurosurgeon with the literature, and I did have surgery at Mayo that fixed the issues.

Surgery is a very big step that you cannot undo. Surgery can make you better or worse, and no surgeon wants to make you worse. There can also be communication issues or personality conflicts that interfere with getting the diagnosis right. Surgeons are under a great deal of stress and they are human. I had to get 6 opinions before I had a good one. I had an advantage as I have a biology degree and I can understand a lot of medical literature and I was reading everything I could and watching presentations by and for spine surgeons online to learn more for a few years, and I discussed everything with my physical therapist.

Cervical spine problems do cause dizziness. That was my experience, and I had vertigo hit suddenly when I looked up at birds flying overhead while on my porch. I stopped immediately, but I could not stop myself from falling backward on my porch even though I had my hand on the rail. When I told the university dept head surgeon that this happened, and that my physical therapist had been able to correct it, he told me to stay with physical therapy and declined to offer surgery. What was happening was that the muscle spasms generated by the spine problem were rotating C1 & C2 causing horrible headaches, dizziness, and nausea. I also have thoracic outlet syndrome that makes one side of my neck tight, so it threw everything out of whack. When I came to Mayo, I talked about muscle spasms and headaches, not falling down because of dizziness. I also did not use correct medical terminology talking to the doctors even though I was able to describe my symptoms in medical terms. Doctors don't want patients to diagnose themselves and then tell them how to do their job. It is their job to diagnose, and your job as patient is to provide accurate information. I had to start over many times myself, but I brought the imaging with me to the next specialist who's opinion I sought. That does help and gives them a comparison on progression, but usually my doctors were not interested in old records and didn't have time to review them.

What matters is how you feel and not what the reports say. Some people have no pain from spine disc problems and as we age, the discs to dry out a bit and bulging is common. Focus on the symptoms and if things are functioning correctly. I learned a lot about heart disease watching my dad go through that, and he stressed about a lot of things and was talking himself into having heart problems. It's what he believed and it happened. He should have focused and what he could do to better his health with his choices. This is the reason that when I was having severe anxiety about surgery, I asked myself why was I doing this to myself? Then by beginning to answer that question, I was able to discover the clues that lead me to deprogram that fear. I enabled my choices and health by doing this.

I don't know if you have seen anyone recently for your spine. I hope my experience helps in some way. I certainly can give you more specifics about my Mayo neurosurgeon if you are interested. I think so highly of him that I will not go anywhere else if I need spine surgery again. It was a long journey to find him, and I've had a great recovery from surgery that was close to 2 years ago. I do have an issue with a bulging lumbar disc, and he told me the best way to prevent future surgery was to maintain core strength to support the spine. I'm doing that with exercise. When you find the doctor for you, join their team because everyone has an interest in your recovery.

I completely understand as my 15 year old has battled this since 2-1-18. We've tried to get into Mayo and no such luck. They do have a PNES clinic but I don't know alot about it

Hi @jcnel,

Since you mentioned PNES or Psychogenic Non-Epileptic Seizures, here are a few related discussions you and other members might like to read:

– Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
– Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/
– Non-Epileptic Seizures or PNES https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/

Paolo Bolognese, neurosurgeon in New York, has got a specialist interest in this area and is highly recommended for people with CCI and hypermobility.

All these symptoms can be many things, do not get overly scared, talk only to a medical doctor. I have ehlers-danlos syndrome, was diagnosed when my primary, & radiologist could not figure out what was going on, this in Tucson Medical Hospital1997. I saw a specialist for EDS. I have the only one that is not genetic, there are many 14 kinds, changed from 97 when they refineries 7, but still the same. I am hypermobile where my joints sublex, (almost dislocate)knees, wrists, fingers, shoulder blade issues in past, left knee bad, orthopedic dr felt both knees. I have fallen a lot many broken bones between the ms, & eds I got the falls cornered! Over 75 falls around 18 years, plus more, been falling since 88. 2 double compound fractures both with rods put in, one from standing still. I know my body well. My skin is not loose, just joints are fragile.

I would love to know the name of your recommend Mayo neurosurgeon, please! thanks!

Thanks for asking! My Mayo neurosurgeon is Dr. Jeremy Fogelson. Here are some links about him and one of them is my patient story. He's a very kind compassionate person and a gifted surgeon. Let me know if I can answer any questions.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
http://www.startribune.com/in-second-term-minnesota-gov-markdayton-dealing-with-more-health-problems/361662931/
http://www.startribune.com/gov-mark-dayton-to-undergo-third-back-surgery/497015811/
https://www.mayoclinic.org/medical-professionals/trauma/news/geriatric-winter-falls-when-a-simple-bump-on-the-ice-can-be-serious/mac-20451017@
Mayo Clinic Minute
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/