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Constant never-ending headache for 1.5 years straight after whiplash
Asking for any insight here because no doctors have been able to help me. Diagnosed with chronic daily headache/chronic daily intractable headache. Never-ending headache that varies in severity (but has never stopped) alongside blurry vision, burning eyes, light sensitivity, floaters. I have many medications with no change: muscle relaxants, antidepressants, nerve pain meds, blood pressure meds. 6 physical therapy sessions (massaging upper neck severely increased headache and neck pain following day), and tried neck injections in lower neck/upper back area (no improvement).
After whiplash, had headache rest of day. Then for a month had bad neck weakness (when laying down, can’t lift up head) and neck pain in general especially with movement like rotation, then all that seemingly improved after that. Then I started getting bad light sensitivity, blurry vision, and burning eyes. 3 months later the never-ending headache began, I don’t know of the specific day it started, I can only approximate the month. A few months later I began getting floaters for the first time also.
Currently my neck has some weakness when looking down, like my head can’t support itself fully. And a lot of neck tension and sometimes aching pain. However the headache pain is much worse. My headache is pressure and painful aching, when at a lower pain level, it is often replaced with a pressure pain instead of the aching pain. I don’t have any nausea, I have never had a migraine before, and have no prior history of headaches.
First brain mri showed I have Cerebellar tonsillar ectopia by 2.5 mm, deviated septum and mucous retention cysts in maxillary sinuses.
Second brain MRI showed 3 mm gliotic focus in the right superior frontal lobe gyrus subcortical white matter.
Neck MRI showed canal stenosis and foraminal narrowing, minimal annular bulging from C3-4 to C6-7, and minimal hydromyelia of the cord at the C7 level, and the orthopedist that went over this with me also pointed out one facet joint looked arthritic.
Next I’m waiting to try facet joint steroid and nerve injection to see if that improves anything. I want to get a lumbar puncture when I get into new neurologist to check for increased intracranial pressure or other causes. Not sure if cervical instability is likely, could try to get into a place that does cervical motion x rays and different kids to check for that.
Anyone with any knowledge of what I should get tested for to figure it out or what it could be? Feels like I will have to live like this and it is very hard to do so with a debilitating permanent headache.
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@account00
Do you mind sharing your age and what were you told after your accident? Were you hit from behind or did you hit with front impact to cause your whiplash?
From what you have shared, it sounds like you need to see a neurosurgeon and/or orthopedic spine specialist based on your MRI results. Have you already met with them and shared your MRIs?
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When I read your MRI notes, I looked up a couple key terms. If these were my results on MRI, I would have a sense of urgency getting answers about stopping the worsening of symptoms and progression of spinal cord injury. It sounds like the auto accident has caused trauma to your brain and spinal cord/canal.
Here are the MRI results that concerned me the most:
Cerebellar tonsillar ectopia by 2.5 mm
3 mm gliotic focus in the right superior frontal lobe gyrus subcortical white matter
canal stenosis and foraminal narrowing, minimal annular bulging from C3-4 to C6-7
hydromyelia of the cord at the C7 level
It seems you do not have the right specialists or need 2nd and 3rd opinions by neurosurgeons/orthopedic spine specialists and neurologists. You seem like you may need surgery to relieve you of your headaches. I have cervical and lumbar stenosis, degenerative disc disease, cervical myelopathy, neurogenic claudication and had cervical and lumbar decompression surgery. My cervical myelopathy (spinal cord flattening/compression injury) caused daily headaches, neck/shoulder pain, weakness/numbness in arms/hands, bladder control issues, and difficulty walking. I had ACDF decompression surgery on C5-C6 to stop the progression of my spinal cord injury. It helped relieve my daily headaches and some symptoms but I have permanent injury because I was misdiagnosed for over 5 years. I had to fire a couple doctors as a result, one of them even said I was a hypochondriac when I was experiencing a spinal cord injury. Some doctors egos blind them and affect patient care.
Please advocate for yourself getting more longer term treatment of your cervical spine that is behind some of your symptoms. It seems like you are getting some short term therapies but not treating the root cause of your serious symptoms.
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5 Reactions@account00
P.S. I meant to mention I am a 55 year old female and my symptoms started when I was 47. I was born with a congenitally narrow spinal canal which has caused symptoms earlier than average (many don’t start to have issues like mine until 60’s-70s).
Here are the links I looked at for key terms in your MRI.
1.
https://www.dovemed.com/health-topics/focused-health-topics/tonsillar-herniation-causes-symptoms-and-treatment
2.
https://healthncare.info/gliosis-meaning-definition-symptoms-causes-treatment/
3.
https://www.mayoclinic.org/diseases-conditions/herniated-disk/expert-answers/bulging-disk/faq-20058428
4.
https://www.healthline.com/health/hydromyelia
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2 Reactions**I don't know if I can edit my post, I have a typo sorry.
It should say, "Examination negative for disc extrusion, canal stenosis and foraminal narrowing," not "canal stenosis and foraminal narrowing."
The hydromyelia and annular bulging is correct though.
I have a typo, I do not have canal stenosis and foraminal narrowing. I do have the minimal annular bulging from C3-4 to C6-7, and minimal hydromyelia of the cord at the C7 level. Do you still think I should be seeing a neurosurgeon still?
I was previously referred to a neurosurgeon for the hydromyelia, but I never got to go to the referral as it was right as I was moving. So I am currently waiting on a new pain management orthopedist referral, neurologist referral, and my new PCP didn't refer me to a neurosurgeon for my neck MRI, which I'm not sure if I should ask them for.
I am 21. I assumed I will be fine and the semi truck driver didn't want me to call anyone and report him to insurance, so I didn't get medical care after the accident.
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You should definitely go to a neurosurgeon, orthopedic spine specialist and neurologist to review all history of imaging since the accident. Did you go to the hospital after the accident or file a police report at all after the accident? Do you have the information from the driver of the semi truck or pictures of the license plate? You would have a medial injury claim against that drivers insurance and if he drove for a company, you could get an accident/injury attorney to cover all medical costs and impact to future ability to work/disability.
Do you have family that could help you work through this? You have some serious injury, in my opinion, and if I was your mother I would be all over this case to help you navigate the complex medial system and legal accident claim.
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If your MRIs are older than 6 months, a new neurosurgeon/spine specialist and neurologist would want updated ones and I would assume with and without contrast. The build up of spinal fluid in the base of your skull/top of cervical spine is causing pressure and may be one cause of your headaches.
My son is 15 and has had 2 concussions and has adhd so I am somewhat familiar with brain injury/bruising and whiplash due to my own car accident where I was rear ended while idling and the other car was a top speed on the highway.
@account00
Here is a link in the statutes of limitations by state for filing an accident report/claim. If you were not at fault for the accident, you could have a liability claim against the driver and company for the accident and injury.
https://injuryexperts.org/car-accident/law/statute-of-limitations/
@account100 symptomatically I was in similar shape 10 years ago. But I did not have the diagnoses from imagine that you have. I am mystified as to why you are not being helped. Was whiplash your only injury or did you have head trauma? Have you had the Babinski reflex tested for spinal cord damage? I read the links but as a lay person found the tonsillar herniation to be the most concerning. But your doctor would know.
Ten years ago, stepping off a curb, looking up, a handshake or a bumpy road could all give me what felt like horrendous symptoms. Over time it did improve. I believe tai chi helped me a lot because it stretches and aligns the neck. I have baclofen and clonazepam on hand, but honestly topicals like BioFreeze and Ben Gay, lidocaine and capsaicin patches, seem to help me some. I have a positive Babinski reflex (ask the neuro to check this) which indicates spinal cord damage, stenosis, myelopathy, radiculopathy, facial pain and numbness and a few other things. But my brain is okay. I am not certain that your only issue is neck..again when you see a neurologist they can look at these images and explain.
Every story is different. Another poster had surgery that helped a lot. I know I will need it at some point. It sounds like you may need more imaging, and possibly surgery. I am so sorry. You are so young! On your side if the ability of the CNS to heal itself when young. One of my kids almost died from an accident w/brain and neck injury and is fine now. but they had intensive care.
I am also confused why it seems so hard to get help, it's very frustraing since it is affecting my life so much. I guess doctors don't believe how severe/persistent my symptoms are or its not common, I don't know.. I don't remember hitting my head on anything, or losing consciousness. I do remember my head/neck getting whiplash trying to hold my head in place from the sudden impact I didn't see coming, and I had a bun in my hair that instantly came out. Which I'm also not sure if its possible the acceleration-deceleration (causing brain to move inside the skull, even with the head not hitting something itself) could have caused TBI or how to check for that. I think contrast MRI could check. I don't have any memory issues though which seems common with TBI, but do have some overlapping symptoms it seems like.
I have not tried the Babinski test, when I get into the neurologist I will ask. I think the first things I'm going to ask the neurologist is for an MRI with contrast, and then a lumbar puncture. The one neurologist I saw previously and waited 3 months to get into just blamed it on stress and refused to try any tests or treatments for me, didn't listen to any concerns about my neck and downplayed it. Just claimed my brain is 'perfect' and somewhat tried to shame me saying how other people have brain tumors etc, and 'I don't have that.' I disagreed with them and believe they just wanted to send me away, my symptoms line up exactly with the accident, but I tried more antidepressants since then as they wanted which all did nothing. They said about the MRI of the Cerebellar tonsillar ectopia by 2.5 mm that 'they've seen tons of people with that' and that was it. And the second brain MRI with 3 mm gliotic focus in the right superior frontal lobe gyrus subcortical white matter, I haven't had reviewed by anyone yet.
So I'm hoping the new neurologist (my new one will be a NP, MD wasn't avaliable for 7 months) will be more knowledgeable and helpful. My previous orthopedist on the other hand was good, and I got the referral today and looks like my new orthopedist will be a spine surgery specialist, while my last was only pain management. So I'm hoping they'll have more insight into my issue.
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