Chiari Online Support Group

20 yr old with 2 yr headache but no diagnosis

#1

Hi everyone! My daughter and I are so excited to possibly, maybe, hopefully, have figured out her two year nonstop headache! She is 20 years old. When she was 3 years old she had an MRI with and without contrast done and it showed “borderline Cerebellar Tonsillar Ectopia”. No dimensions are mentioned. I just discovered this report in her medical records that I reviewed this last weekend and from doing online research I am finally understanding it and it’s impact on my daughter.

For two years she has had NO relief from her headache that neurologists call “migraine without aura”. She has tried 44 meds, been hospitalized 3 times for five days each time and been pumped with harsh drugs that collapsed her veins, had an occipital nerve block, 30 injections of Botox which made her sicker, and basically spent 2 years in her room in pain. No pain medicine has been given to her for two years. I didn’t know I had this MRI record but when I visited each of the neurologists with my daughter, I would tell them that when she was 3 years old the doctor said that she had a malformation that could be causing headaches. We even saw the original neurologist for 2 years beginning in 2014 and he apparently didn’t review his records from 12 years earlier.

I feel that her borderline MRI, headaches, scoliosis, and sleep apnea add up to Chiari I. She has also developed pain in her shoulder and tingling down to her pinky finger. This had just been dismissed by her primary care as a pulled tendon and hasn’t been mentioned to a neurologist. Not sure if this is related as it is pain in her shoulder mainly. Could it be?

We are literally excited just to have a name!! Let’s not even discuss that since 2014 no MRI has been done with contrast so this could have been seen. Four neurologists have just been happy with ordering an MRI and looking for a tumor. Her latest neurologist might be getting close to figuring it out as he has ordered a spinal tap on April 15th. However from what I am reading that spinal tap could do more harm than help. Does anyone have an opinion on a spinal tap if she has Chiari I? Tomorrow I am going to start begging for an MRI with contrast. Can someone please give me the exact name of the MRI I am begging for? Plus…does a Cefaly machine help Chiari headache symptoms? I am on week 3 of fighting to get authorization and an Rx for a Cefaly machine. I have been there all along advocating for her but didn’t know it would take me to crack the case! :smile: So glad I found this forum! Thanks for listening! Barb

#2

I would say give up the fight for the Cefaly machine.

Per you post none of the standard migraine treatments have worked for her and the Cefaly machine was developed specifically for migraines. In fact, it works external on the trigeminal nerve. Since the trigeminal nerve is involved in migraine, it’s theorized that stimulation of it can help with migraine prevention.

This has exactly zero to do with Chairi.

Has she actually tried 44 meds in only 2 years? If so, that’s sending up a huge red flag for me as that many meds in that short of time isn’t allowing for the medication enough time to work. Also, headaches have this nasty habit – if you over medicate one it can become self-perpetuating, the more meds you take the worse it gets. The meds will initially work but then wear off within hours with an even worse headache. This more traditionally happens with pain meds, but it can also happen with migraine-specific meds. I’m wondering if she’s not gotten into a vicious cycle of meds re-triggering headache (assuming there’s a headache involved that’s not chairi-based, chairi-based headaches are something total different).

A spinal tap is NOT suggested for anyone with Chairi. I would do more research before you agree to one – not only because it’s not recommended but because it’s not used to Dx Chairi in the first place. So, what are they looking for? Why do they want to do an invasive procedure at this point? Why are they wanted to do something invasive rather than a non-invasive MRI? Here’s more information about testing and Dx:

https://csfinfo.org/education/patient-information/chiari-malformation/

azurelle

#3

Hey Barb,
I can fully empathise with you and your daughter. Looking for answers to what I refer to as ‘head pain’ can be hell. I say this as I too have been there. For many years I have suffered with ‘head pain’, some may define it as headache, some may define it as migraine, some may define it as cluster headaches and there can be any number of causes for all of these. They can do tests and scans to rule out the obvious, but when it comes to the more obscure causes it can be extremely difficult to pinpoint a single cause. In some cases it may not be so much a direct diagnosis but more an elimination of other conditions ie If it’s not ‘X’ and it’s not ‘Y’ then it leaves ‘Z’. When the medicos have no idea they have a tendency to point at anything and everything. The issue I have found is that each and every dr, specialist, genius and quack will all have their own opinions. They may make out they know it all, but the reality I have found is that nobody knows it all. Often rather than admit they don’t actually know the cause can be put back on the patient or they give a non definitive diagnosis such as nerve pain or give it a title such as psychosomatic. Trying to obtain a definitive answer can be VERY difficult, but, believe me well worth pushing for until you have that definitive answer.

I must also agree with Azurelle in regard to “44 meds in only 2 yrs”. Medication can be a bit of a fall back position for Dr’s. ie “Here try this… …ohh that didn’t work, well, try these instead…” and that merry-go-round can go on forever. The problem is that meds can be self perpetuating cause too. Some need to be taken at a set dose for a certain period to be come what is known as ‘therapeutic levels’, but then when ceasing such meds it can take time for the body to detoxify from those therapeutic levels before trying another medication as another option. Trying to get a clear picture of a particular med, at a particular dose takes time. Adding one medication to another can have any number of untold effects and this can also, as Azurelle states, have the effect of ‘re-triggering headaches’.

I must also agree with Azurelle that a spinal tap is not used as a diagnostic tool for chiari. A sample of cerebral spinal fluid maybe taken during a tap but this will not be able to be tested for chiari conclusively. It maybe able to be tested for other abnormalities such as for the presence of blood or abnormal cells within the cerebral spinal fluid. But not a direct chiari diagnosis. An MRI scan with (or without) contrast will show any chiari malformation.

I do hope that you can obtain a decent physician who is willing to do a full and thorough investigation, to be able to pinpoint the exact cause of what is occurring for your daughter. Some people truly have no comprehension of just how BAD a headache can be. Some think a niggle in the temple is a bad headache. It’s not until they have a mind numbing explosion of agony beyond measure can they ever grasp this reality and some never will.

I do hope you can obtain the answers you are searching for and if we can assist in any way, then please ask.

Merl from the Moderator Support Team

#4

One other belated thought for you — and this is going to taken as sexist in the extreme by many people —if you haven’t already, get to a woman doctor.

Study after study has shown that woman listen better and Dx better than men. It goes back to the fundmental difference between the sexes, women want to understand, men want to fix. You and your daughter are dealing with something that needs to be understood before it (maybe) can be fixed. A woman may do this for you.

As a personal example, I have always made it a point to go to female doctors when possible. I honestly believe that’s one of the major reasons my neurologically complicated migraines were Dx and properly medicated within a month – complete with the referral to the nuerologist and the MRIs. Same with nerve damage in my face, one visit to a female nuerologist gave me a Dx and a medication that worked.

So… you may want to consider speaking with a woman.

azurelle

#5

Thank you Azurelle & Merl. You have made some good suggestions for us. When I say 44 meds in two years I am adding up all her meds ranging from headache, migraine, anti-anxiety, nausea, sleep, and anything else. I recently had to write down all her meds and was surprised to see this number.

She saw her primary care a couple of days ago armed with this old MRI showing borderline Cerebellar Tonsillar Ectopia and a new MRI with and without contrast has been ordered. We’re anxious to get that underway. If it shows a Chiari malformation, I agree that we won’t submit to a spinal tap. (And hopefully the neurologist would have the sense to cancel it so that will be telling.)

Does anyone have any thoughts on why a 2002 MRI would show borderline Chiari malformation but 3 subsequent (2 CT scans and one MRI) did not show it? Is the measurement of the tonsillar area just not done, not seen, missed on 3 scans, not progressed enough to notice? No measurement was given in 2002, just “borderline” so from what I am gathering a borderline classification is given with a measurement of 2-4 mm of the cerebellar tonsils protruding into the foramen magnum. With her headache for two years now I’ve got to believe that the number has increased but no one has picked up on it.

I do like the recommendation to see a female neurologist and if one is available in our area and with our insurance I will aim for that. She does have a female primary care doctor.

Thank you all for reading and taking time to give us suggestions. Barb

#6

Hi Barb,
I was diagnosed at age 45 with Chiari stage 1 and was having headaches too. My neurologist said the headaches may not be coming from the malformation and to look into other causes, he didn’t think surgery wouldn’t work. After a few years of headaches and looking for something else, surgery was my only option for relief. It did not work. I found a headache clinic that was offering botox to headache sufferers. BINGO, it worked. after a few years of injections, we calculated that I needed them every 3 months, if it went to 4 or 5 months, the headaches would come back.
I was receiving the injections for about 6-7 years, but due to another surgery needed for an unrelated issue, I stopped the injections. I am now 8 years headache free, with no injections. If you haven’t tried botox, please find a headache clinic and give it a try.
James

#7

This popped in my email. Forgot I had ever signed up here.

I had a sporadic headache… I searched high and low. Had several MRIs and test and saw 15+ providers in a 20 month time frame.

MRI showed low lying tonsils which led me here. All my symptoms matched!!

Turns out though… I had a CSF leak. It took 8 months to fine. 3 spinal taps- which did not hurt my low lying tonsils. 3mm

Finally after 28 months I was fixed! 5 years later… my “Chiari” or low lying tonsils are unchanged. Appeared to be a incidental finding.

My headaches became intermittent and confused the DX more. But…!! My CSF leak specialist knew that this could happen.

Just wanted to share as this popped in my email and I felt I had to :slight_smile:

#8

Thank you. She got one treatment of Botox with 30 shots on forehead, above ears, neck and shoulders. It made things worse & she was in a lot of pain. An occipital nerve block was before that and it didn’t work either.

#9

That’s a lot of shots. What worked for me was, 7 shots in forehead, 3 around each ear and 3 down each side of the back of my neck. It was a total of 19 shots.

#10

Hi Barb,

I had severe headaches for 8 years. I was eventually diagnosed with a Chiari 1. It was only visible through an upright MRI (not supine). When laying down, the tonsils were not visibly hanging below the foreman magnum, but with upright MRI, they were able to diagnose. I did not go the surgery route. Instead, I chose to seek assistance from a NUCCA chiropractor (adjusts upper cervical only). It took about a month for the headaches to go away, but they did! I have since referred two young children with Chiari malformations to an upper cervical chiropractor. Both kids were not in school because of headaches. Both are now back in school and doing much better. For me, the once a month adjustment gives me enough room in my skull to take away my headaches. The other thing that I noticed brought great improvement to my health was changing my diet. I followed the auto-immune protocol where you eliminate just about everything in your diet and slowly add them back. I was able to pinpoint foods that triggered headaches.

It pays to do your research because each person is different. I pray your daughter finds relief quickly.

#11

Thank you momojamer for mentioning this! My daughter saw a holistic chiropractor for about 4 months. The first adjustment he did she felt better driving out of the parking lot. The ease in headache pain only lasted about a month or so. She went back to him but he was never able to achieve any relief again. Now that I discovered Chiari as a possibility for her pain I thought that he must have adjusted it that once whereby she gained some space. I’ve read not to do regular chiropractic adjustments with Chiari so I perked up when you mention an NUCCA chiropractor. I will look into this.

I just looked up an NUCCA chiropractor in the Sacramento area and made an appointment for next week for a consult! He knew of Chiari and says can treat it. About $365 for exam, xrays, and adjustment. $65 for follow up adjustments. I’m just basing my hope on this based on the first helpful adjustment from a regular/holistic chiropractor.

Right now I’m trying to get a new MRI with & without contrast authorized and done. Her symptoms just all fit perfectly with Chiari I. If it does not show on this MRI, I will pursue the upright MRI as it does make sense. Her MRI done when she was 3 (and it showed borderline herniation) was a supine MRI so I am hoping a new MRI focused on this will show it again. Thank you! Barb

#12

Thank you! I have a pharmacy tech who just found out a CSF leak was his problem too. He mentioned this to me and told me a sign of CSF leak was after laying down the symptoms get better. Did you find this? They had him lay for 48 hours with barely getting up to determine that his got better after 30 hours. My daughter is taking online college classes so we haven’t been able to test this at all but her headaches do not get better lying down for long stretches of time so we thought - only based on this - that her headaches were not CSF leak related. However, maybe that’s what the neurologist is looking at with an Apt 15th spinal tap.

#13

I had the foramen magnum decompression for chiari I and a duraplasty for a small hole in the top of the spinal cord C1 . preceding the operation which took 6 hours I had headaches like what you describe your daughter has . I had an MRI whicih confirmed the syrinx(hole) and the cerebellar tonsils hanging out of my skull, sitting one tonsil on either side of my spinal cord .
I would never go near a chiropractor with this condition . Because I didn’t know what was causing my headaches until the MRI , one day I went to a masseuse who sat astride me and held my head in his hands and jerked my head around to the side. I passed out and when i came to
I felt my head was like a pumpkin sitting on an iceblock stick- if you can get the gist of that - for the rest of the time before the operation . .
I The other thought I have had since reading your post , is whether you have looked up neuro-surgeons on the internet who specialise in Chiari and Syringomyelia operations . I am womndering if you rang their private nurses whther you can find out what the MRI is called .

Also I found neurologists were not as helpful as neurosurgeons on chiari and syringomyelia . That was my experience anyway . I live in New Zealand.

#14

Hi Madeleine! I agree about not seeing regular chiropractors again. I think we lucked out seeing the first one and no more damage although I guess we can’t be sure. We were so excited about my daughter experiencing SOME relief that I wonder now if the NUCCA chiropractor couldn’t help. I looked it up and they only do “gentle touch” not the violent crack. Do you think this is too close to your masseuse experience?

I have seen a neurosurgeon listed in our area that does Chiari surgery but thought she should stay with the neurologist before jumping to the neurosurgeon. I’ll wait for this MRI which I am slowly getting moved along and if it shows a Chiari malformation then I’ll ask to get her to the neorosurgeon. My daughter is ready to sign up for the surgery tomorrow she is so sure and in so much pain. How long did it take you to recover? Are you now pain free? Does the surgery impact your daily life as in movement of your neck?

Thank you for replying! I’d love to visit your country!!!

Barb

#15

Totally agree about seeing a neurosurgeon over a neurologist. I saw a neurologist (I was 37) that told me everything was fine, including my mri, she was adamant that it was all mental because i have a history if depression. Did not feel right about this and obtained a copy of my mri. In it it said that I had a 7 mm cerebral ectopia. I didn’t know what this was, but it didn’t sound good. I looked it up and it said that it was a chiari and listed the symptoms. I was shocked when I read the symptoms. They were problems that i had been going to doctors for my whole life. My mom had even wondered if I had mild cerebral palsy as a kid because I was so clumsy. Anyway, I looked up neurosurgeons that knew about chiari and luckily one of the leading one in the country is in Seattle, about 3 hours from my home. I called his office and they wanted copies sent to them so he could review them. Within the week they had called me to set up an appointment. I had surgery less than 2 months later. I am so glad that I did. I woke up in pain yes, but the excruciating pressure pain was gone. Since I had the surgery 10 years ago 4 of my cousins have also been diagnosed with chiari and had the surgery. Two of them had also been going through the doctors telling them it was all mental. So long story short you would benefit from having the mri reviewed by a neurosurgeon.

#16

Hi Barb

I hope your daughter doesn’t t have to wait too long for the MRI. You asked me some questions…

Regarding pain. I haven’t had any pain in my head and neck for years now , but for about 6months after the surgery my head and neck was very tender and I had to avoid going in vehicles over bumpy roads, digging the garden and pulling weeds out or doing the hoovering . My surgery was in 2004 and for about 3 weeks I could not turn my head fully from side to side ,so I had to avoid crossing roads with traffic and it even hurt to open the door of the fridge and get food out . I was put on about 1000mgs of tramadol a day for 12 weeks . That helped a lot with pain relief . but a warning to anyone being given such large doses.of synthetic morphine . It can be addictive and I would have preferred to have not been given such a large dose for so long, and to have been advised on what tramadol actually was.

Regarding life-style since the surgery l avoid being around violent people who could bang my head or stomp my neck or squash me flat , and games that have the possibility of me jumping up ,or ending up being hit on the head.eg volleyball , netball, softball

I also avoid any job where I constantly have to turn my head or where there are very heavy weights to carry or lift . . So 8hr a day data-input jobs are a no-no and I avoided nursing the elderly jobs where they require lifting

… I can play golf , a slow easy-going game of tennis , I can dance , enjoy a good laugh (without my head hurting badly ) and I love playing musical instruments …now without pain.

I hope it all goes well for your daughter and you .

All the best

Madeleine/Jane (Madeleine is my performance name for my music .)

I find soft touch massage is really nice to have occasionally and currently I am learning Chi Gong which I find less strenuous than Tai chi . .

#17

mydogsmom – quick note on why chairi showed up on one but not the other… chairia is fundamentally a type of swelling, the brain is swelling into the hollow spot left over from how bones fused (or didn’t fuse) or formed. By definition swelling comes and goes. Which is also why symptoms come and go and can be different. So depending on how much of the brain has “swelled” into the cavity on any given day will determine what actually shows up on the MRI. Sometimes it can be so little the MRI slice picture misses it completely. Sometimes there’s not enough there to be picked up by the MRI. Sometimes it’s obvious. Which is HIGHLY annoying and frustrating when you’re trying to nail it down!

azurelle

#18

Thank you everyone for all the help and support! My daughter had her MRI on Sunday & from reading on here in my other post I understood that a Chiari malformation might not be reported if it was under 5 mm so it was imperative to me that I get those measurements reported. I wrote on her forms in big letters to please report ANY Chiari measurements. I spoke to the tech and he was also going to mention measurements. We got the report back today.

It showed 3.8 mm left and 4.4 mm right herniation. My daughter has suffered for two years straight and no doctor requested measurements and no radiologist reported these on 2 previous MRIs.

Now we have a neurologist appointment on Tuesday and I’m not sure what to go in asking for (other than an apology for canceling the MRI because I told him there had been two negative MRIs but the insurance authorization went ahead and approved the MRI. I told him it was approved & asked if he wanted us to have it done & he said “my daughter could decide”!)

It doesn’t seem to show any CSF flow void although all the jargon is hard to understand. I contacted an advocate per @Merl suggestion. Although she can’t take my daughter on she is helping me through an occasional email and I’m hoping she will help me with jargon. I feel like I would like to get a CSF flow study and a referral to a neurosurgeon. Maybe a Cine MRI but I feel like he’ll dismiss that. He is scheduled to do a spinal tap next month but I want to cancel that.

Any suggestions?

Thank you all!

#19

Request a referral to a neurosurgeon who can assess the MRI’s actual images in conjunction with your daughters signs and symptoms. The neurosurgeon will request any further tests to assist in the diagnosis and course of action. A spinal tap is not recommended for Chiari unless there is an underlying cause of the Chiari - there would need to be a reason for it other then just gathering all information possible

#20

I presented the PC with my daughter’s MRI results and she is referring my daughter to a neurosurgeon!!! Thank you all for helping me on this journey!