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← Return to Cervical Neck Instability
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Where do I begin…. I feel lost and scared because I cant find the right doc or a doc I need that will see me.
I have always had neck and back issues, which I can usually control with a visit to the Chiropractor. I have also had this gaging feeling or choking feeling in my throat for about a year. It wasn’t till the first of 2020 I started to notice a trend in my symptom.
I started to get really fatigued and had a burning in my throat with the gaging feeling at time when I would turn my head a certain way, or try to do crunches at the gym, a whooshing sound in my ear when I would lay down. Still all manageable,. I even got test for COVID-19 thinking that was the case, but negative.
I went to my OBGYN thinking it was hormone related, all checked out normal. Then I went to a Endocrinologist and thought maybe it was my Thyroid or Adrenals. I thought maybe my Cortisol was off too, because certain sounds, like a smoke detector would send me into a panic. Those tests came back fine. So I took a break and tried to overlook the symptoms. I started to need to drink a coffee in the morning and an energy drink in the afternoon to just get by, but then I couldn’t sleep in the evenings.
It wasn’t till the end of 2020 I started to notice more symptoms. By February 2021 I looked into a ENT doc and told them about my symptoms. They check the throat and they thought it was GERD, so I went on a strike diet, but it didn’t work. They checked my earing due to the whooshing sound in my ear and the neck pain. That is also when I also notice a small bump under my ear sticking out. The doc said it was the Transverse process of the upper cervical and that its completely normal. “Normal!” I didn’t have it before. During this time, I started to research my symptoms and came across CCI. I mentioned it to him, but he said he could only test for the certain things. So I got a MRA brain without contract, MRA of neck without contract, and a MRI IACS with and without contract. All that came back was a 4mm pineal cyst in the brain. They didn’t see anything alarming, so they said they couldn’t do much else to help. So I requested for a referral. Once I found out about the transverse process, I went to my Chiropractor who said he could adjust the neck( which I have never done), reluctantly I agreed. After two sessions the bump went away, but that when things got worse. Not sure if there is any relation to the adjustment or not, just stating the facts. The Chiropractor also suggested I try to do some neck stretching exercises to help with my posture and that it could help the neck pain. So I did a couple of them and that’s when I notice major changes.
While this was all happening, I started to notice new symptoms:
• stiffness in neck, Tension headaches everyday
• head shakes when upright too long
• heart palpations and chest pain
• sensitivity at base of skull and upper neck
• pressure on top, lower skull, upper neck when upright too long- once pressure has increased it hurts to lay head down
• stiffness in neck
• tenderness at base of skull
• blurred vision
• brain fog- have hard time finishing sentence or completing a verbal thought
• pulsating in varies body parts
• ear issues- pulsatile tinnitus, fizzy sound, and ears fill full, sensitivity to sounds
• cold and sweaty hand and feet- comes and goes
• dizzy and off balance after upright
• electric stimulation throughout body daily
• chronic fatigue
• cognitive and memory decline
• difficulty swallowing or sensation of being choked
The ENT gave me a referral to an Orthopedic doc, but that didn’t do much help, because they went by the ENT notes and only wanted to examine one thing. I got a couple xrays and they said maybe try a Neurologist. Really? No further test? You won’t look into more based on my symptoms? He couldn’t tell me if the adjustment to my neck could have started this, nothing about the transverse process either. Frustrated, So I have currently took the referral and I’m hoping to get into a Neurologist, but it’s a waiting game to see if they will even take me based on previous doc notes, which could be a misdiagnosis. I tried to get into the Neurology group at Mayo but got denied. Orlando doesn’t have the best rating of Neurologist in the area, which is depressing.
I think based on my research it is CCI, but not sure at this point. I feel I need a upright MRI of the neck and brain with/ and without contrast. I need to know there is no tumors in the brain and need to rule out if this is CCI.
I’m so scared. I see so many people on here who can’t get to the right docs. I was laid off due to Covid in 2020 and just starting to get some freelance work, but I can barely work. No job is going to hire me, if I can only work a couple hours a day. Being bounced around from doc to doc, I’m starting to getting a lot of bills. My family is frustrated at the situation, and I think my husband almost thinks it’s in my head. I deal with anxiety and OCD on top of this so most doc sum it up to that and it just makes me obsess about it more.
Can anyone give me suggestions? I cant seem to find the right docs or get the right referral.
I want to rule out brain tumor, so it’s that a MRI with contrast of the brain? Is the 4mm cyst in the brain adding to this?
I want to do a test for CCI and maybe CSF- do I do a upright MRI of the upper cervical spine?
Replies to "Where do I begin…. I feel lost and scared because I cant find the right doc..."
@slw18 I read your symptoms and I think a physical therapist may be able to help. Find a PT who rehabs spine surgery patients. You are describing symptoms with muscle spasms that can be caused by misalignment of the spine or muscle spasms that cause the vertebrae to be pulled out of alignment. A good PT can be a great source of information and will likely know doctors who can help because they get referrals from doctors. Your imaging didn't indicate any brain tumor, and if there was an issue like that, they would have told you. It would say something on the report.
Mayo gets lots of patients trying to see neurologists and it is hard to get into Mayo for that. May I ask why you have been seeing a chiropractor for years and what has actually been diagnosed as a spine issue? If you do have a problem like a bulging disc, seeing a chiropractor can be dangerous. I am a spine patient and had a bulging disc resulting from an old whiplash injury, and all I had to do to rupture that disk was turn my head while I was stretching. That didn't hurt, but had an odd feeling. In the next few years, I grew bone spurs pressing into my spinal cord trying to stabilize that ruptured disc. It caused spinal cord compression, and I had to have surgery to remove that damaged disc and a fusion of the 2 vertebrae. I had the same symptoms you describe. The suboccipital headaches are caused by the vertebrae twisting or tilting from a muscle spasm. Those muscles are attached to the spineous processes on the vertebrae and to the base of the skull and they get stretched if pulled out of alignment causing pain.
My physical therapist is also has an expert level myofascial release certification from John Barnes who developed the treatment techniques. I would caution you against further chiropractic work if you have an un-diagnosed spine issue. That is a jolt to your spine to have an adjustment and the cumulative effect of that over years may not be good. A doctor would have to advise you about that. Discs develop cracks from trauma, and years later as the discs dry out with aging, the cracks weaken and can open causing the disc to herniate and spill out the jelly like substance inside. For me that happened 20 years after a traffic accident.
A physical therapist can gently work on the muscles to realign them and restore normal movement, and has modalities to treat pain and spasms with out blunt force to the spine. You skull may be sitting crooked on top of your spine. That sometimes happens to me, but I also have thoracic outlet syndrome that puts uneven pressure on my neck with one side being too tight, and that can cause independent rotation of vertebrae. If you have a spine issue, getting a referral to a spine surgeon would be a good idea. That doesn't mean that you would automatically need spine surgery, but would be evaluated. Sometimes, they only look for problems to fix, but they can send you to physical therapy to try to prevent surgery. They should want to prevent surgery unless it is necessary. At the very least, you need to do PT and have it fail to help before advancing to surgery.
I didn't wish for surgery, and I was scared. I had to do a lot to get over that. I was loosing the coordination of my arms which was serious since I am a professional artist. One piece of advice I would give you is let the professionals diagnose the problem. Don't tell them what tests to do and what you think the problem is. No one wants to be told how to do their job. Your job as a patient is to accurately describe your symptoms, when they started, what your health history is, and if your symptoms change with different positions of your neck or body or have changed over time. You can ask them to review your imaging with you. Try to be calm. If you are demonstrating anxiety, they may be put off by that or refer you for mental health help. Surgeons are nervous about the patients they select for surgery and want to insure the outcome will be favorable. Anxiety will get in the way of good communications and can interfere with a doctor patient relationship. Their understanding of the problems are based on communication and it is easy to get it wrong or miss something.
Do not put your doctor in the position of having to decide if the chiropractor caused the issues. Tell them your history and they can have an opinion on it if they choose, but they may leave that out of the records. If the doctor thinks they will be pulled into a malpractice lawsuit because of the chiropractor, they may not take you as a patient because that will put them in an awkward position that may be very time consuming. Often there is a question on intake forms about this. Surgeons pick and choose their patients carefully, so make sure you are the best patient you can be. Some fear is normal, but don't scare the doctor out of helping you. If you need counseling, find a counselor yourself who can help you navigate the issues.
Here is our discussion about Myofascial Release and there is a provider search at http://mfrtherapists.com/
My physical therapist has done a lot of this in treating my spine issues, rehabbing me after spine surgery and treating my thoracic outlet syndrome. Let me know if you have other questions, and I will try to help.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Did you ever find someone within Mayo that was able to help? They did a supine MRI on me, and it didn't show instability. Which is actually common sense as you are laying down rather than up, which is when your instability is the worse. Also, MRI is a state test, so you aren't moving, again showing the instability. No one wants to order an Upright MRI and they state there are NO studies that show an upright MRI is better at diagnosing CCI. (Which I could find more than a few studies on google right now that have been peer reviewed etc). The hard thing with CCI, is there are not that many neurosurgeons knowledgeable on the measurements. There are VERY few surgeons that specialize in it. I am at a loss. With even not getting the correct care and diagnose of EDS and then CCI, I honestly don't see any hope in the future. Mayo in Jacksonville, FL may know more on EDS, than here in the Midwest, BUT again, no surgeons familiar with CCI.
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Hello @slw18 and welcome to Mayo Clinic Connect. You certainly have been through quite a journey but also pursued finding answers for your symptoms, which I commend you on.
You will notice that I have moved your post into an existing discussion on the topic of CCI in order for you to connect with members such as @jacklynn12 and @kdj who may be able to share more information with you.
As for what type of diagnostic exams you need, you should be directed by your care team. Have you had coordinated care across the various departments you have sought care so far or are you organizing the information on your own?