I’ve been a little absent more than usual. I have so much going on at home it’s been hard for me to focus.
I’ve mentioned briefly in previous blogs I have been having some health problems. I’ve avoided saying much details about them till we had more answers, well we have those.
Things have happened so quickly, yet ever so slowly when you are living in so much pain day to day. I’ll mention on a side note though that I would take this physical pain and health problems over mental health problems. Mental health is so hard! Not to mean what I’m dealing with now is easy but people can physically see it, they can’t see my mental battle. Sometimes people even act like depression or anxiety is even contagious.
Anyway, back to the point. I have been battling chronic pain due to Ehlers-Danlos Syndrome (EDS). It has caused instability in my head and neck. Craniocervical Instability (CCI), Anltoaxial Instability (AAI), and Subaxial Instability.
In English my head doesn’t sit or move properly on my cervical spine, also known as the neck. My neck when moved forward and back the discs slip and slide incorrectly. When I move it left to right it also slips and slides. My discs have compressed leaving them to grind as they move. It feels about as awesome as it sounds.
My EDS is the root cause of this. It is a condition in which I don’t have proper collagen in my ligaments. The ligaments dominantly are what hold us together. To make up for this my muscles have worked overtime my whole life to hold me together. Ultimately with all the stress my body has been under through pregnancies, injuries, and just life my neck muscles just couldn’t handle it anymore and gave out.
I have been living in a hard neck brace for 5 months, sleeping in it for the last 4 and even showering with it.
There are no cures for my conditions only ways to help give me best quality of life. For this reason after months of consulting Drs. and finding the best specialists we have decided to move forward with a head and neck fusion. It will be C0-T1. Basically attaching my head to my neck and my neck to the top of my spine. They will put rodes in my neck and screw it on to my skull and each disc. We will also be adding cadaver bone.
There are only a few specialist in the world to handle this large of a surgery. The one that accepted my case is in Barcelona Spain. Surgery will be April 6th. I always joke you can’t put a price on your quality of life but if you could it would be 80,000$. Unfortunately insurance doesn’t cover any of it. To pay for it we have sold our house, it will close in just a couple weeks. We are moving into a 1 bedroom apartment for now.
So we have been busy with showings, inspection, appraisal, packing, prepping for Spain, pre-op blood work and appointments. That combined with a brain that struggles to think straight writing blogs have been a bit difficult.
I’ve started a YouTube channel about my conditions, and to share my experience through surgery and recovery. I’m sure there will be a little break blogging while I’m in my initial recovery. I appreciate you being patient with me. I do love sharing my life with you here and hope to feel well enough to blog again quickly.
Mother Hidden 
I apologize if this ends up posting multiple times. I can’t figure it out! 😅
Hi. I found your blog through the KSL article. I opened it because your picture – a smiling mom LYING DOWN – and the headline “mom’s life changing surgery postponed because of coronavirus” sounded so much like my life.
In January 2018, my healthy body suddenly called it quits. Out of nowhere, I developed severe headaches and nausea and confusion/forgetfulness/fog. But whenever I laid down, they went away. So I’d stand up again an hour later, thinking “oh the tylenol worked,” or “whew, I’ll go finish the dishes now that I’m better,” and I’d stand up again. Then slowly, the headaches would return. Over the next couple of months, I got to the point where I could hardly stand up without excruciating pain. My story takes less twists and dramatic turns than yours does, but I want to tell you about my condition because it could be an important piece of your story too. But before I do—PLEASE know, I’m not saying this as, “oh my friend got migraines and she took this vitamin and now she’s better!” Or, “oh, I read such and such on the Internet, have you tried that?” I’m saying this as a mom of 4 kids who can barely function and is trying to homeschool and keep kids fed and the house clean (ish….?) while dealing with incredible amounts of pain every single day of my life. I GET IT. Hearing about people’s medical miracles that are so unrelated to mine is not just annoying, it’s downright offensive. My story may or may not have anything to do with yours. But the second I saw you, I knew we had at least three things in common: we are bedridden mothers, we are waiting for our procedures, and we are hopeful for a cure.
I have a condition called spontaneous intracranial hypotension. It is commonly referred to as a CSF (cerebrospinal fluid) leak. Somewhere along my spine, I have a hole – maybe large, maybe a pinprick- and I am leaking CSF through this hole. CSF has many important functions, but one important function is that it keeps your brain floating. If you don’t have enough, your brain sags heavily, pressing down on your brain stem, causing pain in your skull, nerves, and down into your back. It is EXTREMELY common to have EDS or other connective tissue disorders, when you have a spontaneous leak. (Most leaks are caused by an accidental dural puncture, often when receiving an epidural.) But when you have EDS, you have weak collagen, and that often makes a weak dura that tears and punctures easily. CCI, etc, are also caused by this. Generally, but not always, when we lie flat, the CSF can pool in our heads rather than draining down and out through our spine, so our brain can float a bit and the head pain is relieved and the ability to THINK returns. Most people have a few signs of this on their MRIs but up to 50% of them have no signs. Many simply go unnoticed and undiagnosed by radiologists who don’t know to look for them.
Here are some of the signs of a CSF leak:
Headache that is worse when upright and better when horizontal (but other patterns do occur) (often better in the morning, or a “second half of the day” headache)
Nausea and vomiting
Neck pain or stiffness
Change in hearing (muffled, underwater, tinnitus)
Sense of imbalance
Photophobia (sensitivity to light)
Phonophobia (sensitivity to sound)
Interscapular (between shoulder blades) pain
Pain or numbness of arms
Changes in cognition (“brain fog”)
Dizziness or vertigo
Less common symptoms:
Visual changes (blurring, double vision, visual field defects)
Facial numbness or pain
Changes in taste
Pain or numbness at various nerve root levels below the arms
Fatigue
Galactorrhea (fluid discharge from nipples)
Rare signs or complications:
Quadriplegia
Dementia
Parkinsonism, other movement disorders
Ataxia (unsteady gait)
Stupor / coma
Cerebral venous thrombosis
Reversible cerebral vasoconstriction syndrome (RCVS)
Posterior reversible encephalopathy syndrome (PRES)
Stroke
Death
Now, here’s the really good news followed by the less-good news… leaks can be repaired!! Most “leakers” only need 1 or 2 blood patches for long term healing. A blood patch is a very simple procedure where they draw blood from your arm and, while under fluoroscopy (x-Ray) insert it just outside of your dura, ideally in the location you are leaking from, but they can do a blind patch in the epidural if they don’t Obie the leak location. The blood pushes against the dura so the hole can close, it forms a scab, and boom, you’re back to normal. Ok, now for the not so good news… for SOME people… especially people with EDS/CTDs… it’s not so simple. I have had four blood patches that haven’t lasted. (Most gave me some healing, including a blissfully symptom free summer!) I am waiting on being able to receive a fibrin glue blood patch, possibly here in SLC, which is when they add glue into the blood, to make the patch hold more successfully. I also need better imaging to get an idea of what is going on, as my imaging didn’t show signs of a leak. (Your MRI, and bear in mind, I am NO expert, seems to show your brain sagging, which is one of the 5 signs they look for in a brain MRI.) It is possible I have a leak that will need surgery, as there are a few causes that can’t be repaired by a blood patch alone, such as a bone spur cutting into the dura.
All that said… I have no doubt that all of your diagnoses are correct. (And major kudos to you for following your gut on that!!) But I would urge you to look into a CSF leak as well. You can send your imaging to one of the country’s (few) top leak doctors. He is located in California and reviews records for free. I’m happy to send you more information about that. I imagine a trip to Barcelona will still be in your future, but national restrictions will likely lift sooner than international travel restrictions… and if, by chance, you have a leak, then I imagine the weight of your brain is greatly aggravating the CCI-AAI-SAI issue…
Here is one website, if you’d like more information:
https://spinalcsfleak.org/about-spinal-csf-leaks/overview/
There is also an amazing Facebook group, many of the members have many of your ailments as well, especially EDS.
I feel a little crazy posting this on a complete stranger’s blog, but as I read your story I just kept feeling I needed to tell you about CSF leaks! I hope you don’t think I’m too crazy. 🙂 I just hate knowing there is another mom out there, watching the dust bunnies grow on her ceiling, as life passes her by. Even if you dismiss this as all craziness, I pray you will find healing and will be able to get your surgery soon!! Please feel free to reach out to me, even if you just want to talk to another mom who kinda sorta understands.
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You’re so wonderful to take the time to write all that! It’s great to hear someone who also understands all this.
We have done extensive scans to confirm I don’t have a leak. Gilete is also comfortable agreeing with that. I also did a Cine flow scan. I’m lucky to not have complications there.
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My heart goes out to you. Dr. Bolognese in NY did my first fusion (skull-C2) as well as my fusion extension. I hear Dr. Gilette is an amazing doctor, but for me it was much easy to stay in the US for my surgeries. Dr. Gilette has consulted with Dr. Bolognese on my complex case several times. I hope you are able to have your surgery soon and get on the road to recovery. Feel free to contact me if you are in need of any suggestions or other tips to get through this. My email is julie.rasmussen04@gmail.com
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Thanks! Unfortunately surgeons in the country did not accept my case.
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