Any help please?

General
1

Hello everyone,

I'll try to keep this short by not going into too much detail unless requested. In March I suffered a heavy blow to the top of my head while standing upright and since then have suffered various symptoms. Neurologists have not yet diagnosed the problem, and I'm still waiting for an MRI which should happen in the next 4 to 6 weeks apparently.

One of the medical people I've seen suggested I may have suffered a cerebellum or brainstem injury from compression caused by the blow coupled with my upright stance at the time. As I was already booked for an MRI, they said they'll wait till that is done before going further with that idea.

So, in the meantime I've been trying to do my own investigating. Nothing I've read about brainstem or cerebellum injuries seems to fully fit with my experiences, but I noticed that a few symptoms matched this condition 'chiari' that I read about the first time the other day. But, I see it's normally genetic and the symptoms appear to be present all the time (?)

Biggest things which doesn't point to chiari (I think?) is that my symptoms come and go. After realising the stiff achy neck I've suffered with since the accident, along with the cracking noises it often makes when moving it and the fact it's 'locked' a few times completely, might be a part of the problem, I tilted my head to the left (as this is where the resistance and ache usually is worst) beyond the point of stiffness and well into the painful area, which immediately brought symptoms on. Left a very delicate patch on the left of my neck just beneath my skull which brought on symptoms if pressed. It has since settled down, but if I press fairly hard it makes me feel funny, like a lighter version of usual symptoms.

This information hasn't helped the neurologist understand what's going on though, so again must wait for MRI. Am I right that chiari has permanent symptoms? I get good days and bad ones, and lying with my head at a different angle can bring things on, as can tilting my head past stiffness and pain point sometimes.

I've experienced: twitching limbs down my right side, with trunk and head twitching too, almost like a seizure. Usually affects my speech too, like stuttering, and can make my eyes 'cry' without emotion or anything, and squeeze shut; twitching as above brought on by strobe flashing during EEG; feeling painfully hot all of a sudden for a few minutes; feeling cold; shivering like made from slight cold; headaches; shooting pains in head mainly left side; shooting pains in left side of neck beneath skull; inability (rare) to tolerate too may sounds; intolerant to bright light if not feeling well in my mind at the time; mind going blank, unable to think; mind spinning, sometimes feeling like something flowing through mind, robbing me of thoughts and ability to think properly; weak, shaky legs; balance inferior, stumbling more, especially if turning fast; feeling of balance going and going to fall over (even though don't fall); general weakness and shakiness; fatigue; tiredness that can come on in an instant, be very strong, then vanish as quickly; ache or sharp pain behind left eyeball; tired eyes, compulsion to squeeze them shut hard instead of normal blink; family say personality has changed a bit; sudden dry mouth; pressure around bridge of nose, often precedes twitching; nausea before twitching sometimes; neck quietly clicks/pops a fair bit when turning head; tremor in right hand, sometimes not present, other times bad. Sometimes rolling motion left to right; mind generally 'quieter', doesn't race like has done all my life, can zone out more easily; no facial tics from stress since accident, something I have always suffered.

That's some I can immediately think of. But they aren't present all the time. A neuropsychological assessment showed 3 areas of diminished cognitive function: short term memory, concentration, processing speed.

Has anyone heard of symptoms like these that are linked to the cerebellum or that area, which aren't always present, and have resulted from a blow to the head? I'm not here because I think I have chiari, but because I noticed some of the symptoms match, even though mine aren't always present as I gather they are with chiari. Is twitching as I've described it ever present? Neurologists so far are utterly without ideas and have admitted it.

Thank you.

2

Hello Christine,

Thank you very much for taking the time to reply to me. Anything is of help at the moment, because no one in the medical profession has been able to say what's going on. It was only 2 months ago that the neurologist I see agreed to an MRI when I asked for one.

You say that chiari's symptoms can come and go, but is it possible to do so frequently, such as with me? I can be unwell for days, then well for days. Sometimes it's weeks of being ok, and weeks of symptoms. Other times it might be just one or two days of symptoms, then I'll be alright.

It was actually the 'symptoms ist' on this forum that pushed me to write on here, because so many matched up. The trouble is, I've yet to see twitching down one side of the body as a symptom. Tremors and shaking I've seen listed, but not twitching resembling a partial seizure (which is what the neurologist thought it could be at first, except he said it didn't match completely; the head trauma wasn't sufficient to cause enough damage to bring on epilepsy as I wasn't knocked unconscious; and my EEG was clear despite the strobe light causing a 4-minute twitching episode).

Also, has anyone ever found that neck position, or forcing the head over against stiffness in the neck, has brought on twitching or any other symptoms? Or had a delicate spot beneath the skull which causes strange feelings or brings on symptoms when pressed?

I don't know that I can find a neurosurgeon to help me. I'm in the UK and as such I'm using the NHS (National Health Service) which means treatment is free, but if I want to see a specialist, I must be referred by a doctor and for there to be good reason cited by the doctor or consultant in the field.

I will certainly give an update once the MRI scan is completed and I've seen the neurologist for the result. If the MRI shows nothing abnormal, then I don't know what I'll do. If I can't have my old life back, I at least want to know why... One thing I have learned is the same as you have said, which is not enough research has been done into this area of the brain in general. It must be frustrating as can be to be told that they don't know if it's causing all your symptoms. For me, I have a need to know, and I hope I don't end up getting told the same.

Once again, thanks for your reply, it means a lot.

3

Hi …sorry to hear that your waiting so long for your MRI. I too know the stress and worry that goes through your mind before you get a defiiate diagnosis. My chiari symptoms come and go but some are constant and are complicated by other meds I have to take.
I don’t know the UK doc system but from my experience with the Irish one is get a second opinion.
And ask for your MRI scan on a cd for yourself to take home not just one for your consultant.
Best of luck!

4

Hi...Welcome....

Your Sx's sure do sound like Chiari...When is your MRI??? Let us know what shows up on that...I hope you don't have to wait too long to have an MRI..

Christine gave you a lot of great info so I won't repeat it!!LOL

Peace,

Lori

5

Hi there,

I am so sorry to hear about your injury and what you are experiencing. From what I have learned over the last couple of months; people with chiari can be asymptomatic and then all of a sudden something such as a blow to the head can trigger it, or you can have symptoms. I can relate to you somewhat; I had symptoms all my life and was slowly progressing but I suffered a blow to the left side of my forehead which pushed my chiari over the top and now it is just progressing. Anyway, I cannot believe that you have to wait so long for an MRI, I waited two weeks but that is because I requested to be put to sleep for it. I have the same symptoms as you. Please keep me posted. God Bless!

6

Hi,

Id just like to let you know that yes you can "get" chiari by a blow to the head of any sort and or being born with it. I was told mine was genetic, another thing i would like to say is- my symptom list was large and life altering once they came to a head- WHICH WAS BROUGHT OUT BY STRESS!- however i suffered symptoms all my life and was treated throughout life for them just NEVER knowing or connecting the dots or never having a MRI/CT to find out! Now I DID have surgery and at the time i did NOT have a syrinx OR hydrocephalus. Stay informed!

7

Christine, I do have headaches sometimes, which is unusual for me as previously it was very rare for me to get headaches. Often it's a feeling akin to a hangover. The worst headache lasted 3 days and nights and left me barely able to move for the pain and didn't respond even to codeine-based painkillers. I just wanted to be unconscious as I couldn't bear it. Thankfully, that was an isolated case and they haven't been as bad or as long lasting since. For some reason I seem to need more sleep too, last night I slept for 10 hours and feel rotten today and have had some of the symptoms come back after a few days feeling the best in a while, with more energy than usual, something I enjoyed so much I found it hard to believe I could feel so depleted and unwell. Right now my head is booming and I've just taken more painkillers because the first lot didn't help.

Often I go days and days, sometimes weeks with no headaches, and the ones I do get are mild enough for me not to take painkillers. Interestingly, earlier on I was lying on the sofa with my head on my wife's leg which was pressing into my neck near the base of my skull, and a few minutes later I started getting some twitches in my right leg and abdomen, my eyes became sensitive and sore, and the mild headache I'd had since I awoke became much worse, with shooting pains around the top and an underlying pulsing headache. I had to move quickly, which stopped the twitching and the shooting pains, but has left me with a much worse headache and sharp pains occasionally around my temple area. It's all very odd, because I can be well for weeks, and sometimes I can be unwell and headachey for weeks without respite. Other times it's just hours or days where I feel unwell. It's all over the place, and this is one thing the neurologist said he finds confusing and is making it hard to find a possible cause for it, as it doesn't follow set patterns of known injuries or conditions.

I'm looking into it myself because, quite frankly, I'm scared that the MRI might not reveal the problem, and since it's the last test they've said they can do which might help, I don't know what will happen if it doesn't show anything. I can't live like this and just keep being told they don't know what it is. I can't drive (doctor said so) because of the twitching episodes and the way my mind can go blank or start spinning. I'm not supposed to go up ladders, work at height or do anything that might be dangerous if I suddenly feel unwell or start twitching. Not only that, but I don't feel up to doing much most of the time anyway which is frusttrating as I have so much work to do at home, and I may lose my job if I don't give them an idea of when I'll be back because it isn't diagnosed. I don't feel up to working and my employer's say they won't have me back until this problem has been diagnosed so they know what I can do, if anything, and ensure I and others around me would be safe, especially as my job involves driving. They've stopped paying me and it's made things very hard.

Mairead, thanks for your post. I will ask for a CD of the scan (do I ask when I go for the MRI or before or something, and do they charge?) and regarding a second opinion, the neurologist said that I am welcome to have a second opinion if I want, and then kept asking me if I was going to or not. Considering he'd only just mentioned it, I declined to answer as I hadn't had time to think about it!

Lori, I haven't been given an appointment date for the MRI yet. The request was put in to my local hospital by the neurologist early October after I asked if I could have one, with a 12-14 week waiting list. When my wife telephoned the hospital to ensure the referral had gone through and to try to find out when the MRI scan might happen, she was told that I'm on the waiting list and there was a further 6-7 week wait, which at that time meant the scan would likely be the end of December 2011 or beginning of January 2012. So far I haven't received an appointment letter giving an exact date...

Destini, thanks for your kind words. I haven't considered that there might have been a pre-existing condition; I've never knowingly had symptoms of chiari or anything else before. I'm not so much thinking I might have chiari, it's just that a lot of the symptoms for chiari match my own, and as such I was wondering if it might at least show that my problem is located in a similar area, even if different factors are causing it, so that I can put forward an educated guess to the neurologist in case it's been overlooked or the MRI scan analysis may overlook it if they aren't searching for it, aware of it, or perhaps are focusing on the top of my brain, since the blow was to the very top of my head. So, perhaps the trouble is linked to the cerebellum or brainstem, even though it might not be chiari. After months of searching and research, I haven't found anything that seems to coincide with my multiple and very varied symptoms, but when I found out about chiari, I saw for the first time something which seemed to come with similar symptoms.

Interestingly, one of the neurologist's assistants did say to me that she thought it might be relevant the heavy metal object hit me on the top of the head while I was standing upright, perhaps causing brainstem compression or something to the cerebellum, as the balance issues I'd mentioned made her think about how the cerebellum is involved with balance functions. Sadly, I don't think the neurologist took her thoughts seriously, or my subsequent account regarding my stiff neck and how tilting my head forcefully to the side against the stiffness and pain brought on the same symptoms I've suffered since the blow to my head. It was what she said that got me researching the cerebellum, brainstem and injuries to these parts. But nothing matched very well until I found chiari.

Lisa, thanks for the information. I've read that it's a contentious issue, with some doctors believing that chiari is genetic only, while others have considered that injury might cause asymptomatic chiari become symptomatic. I haven't read anything claiming that injury alone can bring it on though, without already having the condition. the USA tends to be well ahead of the UK medically though, so this could be interesting. Can you cite a reference that I could then give to the neurologist? Part of the reason I'm on this forum is because I'm well aware that medical advances usually happen in the USA first and don't cross the pond for a long, long time, and often it takes ages for UK doctors to research the new ideas themselves before finally accepting the new findings.

I read a sad newspaper cutting online the other day about a British man with chiari who could not get diagnosed from his symptoms, and MRIs were incorrectly interpreted as being fine - they told him it was probably just stress. He sent his MRI scans to a US neurologist after frequenting US forums and doing his own research, who said it looked like he had chiari, a condition I gather was well known in the USA, but not well known in the UK. Using what he was told, he was then able to get neurologists in the UK to look at his research and the US neurologist's findings and not only get diagnosed, but receive surgery for decompression (I think that's right). The newspaper headline was 'man self-diagnoses brain condition' or something similar. What a shame he had to do all that.

I've added this forum to my favourites and of course will return once the MRI is done and results given, even if the scan is clear or shows something completely unrelated to chiari. I hate it when people never return to forums and give the outcome because it can help others in the future who are carrying out searches and looking for help.

8

Hi chappers
I always ask for a cd and print out from the nurse just before the MRI. They should be free. I only once had to pay e 25 for the print out. Also since your waiting so long for your MRI they cost e350 in st vincents private …the main private hosp in dublin…and the waiting list is about a week or so long.
Also I would suggest try finding a prof of neurology to get your second opinion with.
Hope I have been some help

9

While the injury may not be the primary cause it may have Triggered your symptoms please read the links below

http://www.conquerchiari.org/subs%20only/Volume%206/Issue%206(6)/Minor%20Trauma%20Sparks%20Symptoms%20%206(6).asp

http://www.mayfieldclinic.com/PE-Chiari.htm

http://www.pressenter.com/~wacma/trauma.htm

http://chiaricare.com/Chiari-1-Malformation/Symptoms.aspx

10

a few i dont see on that list are

Tremors (body not just hands)

drop attacks

inability to keep conversation or have a complete thought

inability to keep up with a conversation

confusion-(in general)

unable to handle moving crowds AND esclators--dizzy/confusion factor

unstable hands- meaning unable to lift heavier objects- or even a pot of boiling water

eye/hand coordination seems to be diminished or completely gone.

11

I had the MRI scan on Monday after a wait of over 3 months. Now have to wait until the neurologist gives me an appointment to go over it, until then I know nothing. Asked about having a copy of scan but was told I must ask to see my medical notes which here in the UK is quite a job apparently and will probably cost.

Lisa W, of the symptoms you've mentioned above, I've got (not permanently but randomly and time to time) the body tremors, like shaking as though very very cold, trouble with conversations and thoughts, very occasional confusion, and if by unstable hands you mean tremors or shakes, especially when coming to the end of a movement such as placing a cup on a table and just before it touches the table your hands shake much worse, then I have that occasionally too, although much more often in the past two or three months. The tremors only started around August. Head injury was in March.

Also, when pointing at something my finger trembles very badly sometimes and is beginning to be a nuisance. The rolling tremor in my right hand that comes and goes has worried my GP because as a sufferer of Parkinson's she said she knows very well that it is a symptom, so is concerned that there might be two separate things going on, either coincidentally or brought on by the head injury. I think she's worrying too much, and my Googling shows I have no other Parkinsonian symptoms.

Of course, that some of those symptoms you've listed are happening to me doesn't really confirm anything, I need to see what, if anything, the MRI shows. At least it's finally done!

12

I hope you are getting the answers you are looking for, When do you hear about the results of the MRI?

I really dislike tremors for me personally i think they are embarassing.

So you also have Parkinsons's too? Its no wonder your doctor got concerned then.

I wish you all the best.

13

I have to wait for an appointment letter to see the neurologist for the results. I have no idea when that will be.

The tremors are getting me down and making some things a little harder to do and can be frustrating.

I may not have worded my previous message very well: I do not have Parkinson's. My GP (local doctor) has Parkinson's. Because of this I think the rolling tremor in my hand worried her greatly, because she has such acute knowledge and experience of the disease. I should have remembered that GP is a UK term and may not be well known to people on this forum - it means General Practitioner, basically the doctor at the local surgery (do you call them clinics or health centres?).

I think she is worrying excessively, and that the slow-downs I have very rarely suffered also made her worry about Parkinson's because I described one or two instances of my leg moving slowly and then my foot briefly feeling like it was stuck to the floor. I do not think I have Parkinson's, I think the tremor is to do with the head injury and whatever that caused. I'm only 30...

14

Oh Ok...i was like oh no you are going to be a tough one--lol-- glad you dont have that. I hope you get your letter soon and you dont have to wait long to get the results.

when i have the upper back tremors or body tremors as my son calls them I press my back up against something hard and it seems to help them and they stop after a little bit, doesnt seems to take long- and that also lets me know to get off my feet PDQ. when i get them in my hands i press them flat palm down on a table to the elbow...looks silly but it too does help these seem to take a bit longer to calm down and then once they do i try and stretch the arms/fingers a bit

15

Thanks Lisa. I'm glad I don't have it too! Does one hand shake more than the other, and is it random and only from time to time? And does your hand sometimes 'roll' , a side to side tremor, moderately quickly?

I've been getting palpitations the past month or so, and today is particularly bad with 3 lots so far. The first lot were immediately accompanied by twitching down my right side, especially my abdomen which lasted a few minutes, and I felt very strange. The palpitations started with a slight sharp pain and a feeling that middle of my chest was pulled together.

Once I have had the appointment for results, I'll post on here again.

16

I now have an appointment for the MRI results, the 22nd of February. Hopefully they'll be helpful.

17

I had a head trauma and these link were provided, please check them out:

18

Chiari is inherited but can lay dormaint until trama to the head or upper spine activate symptoms.
Most patients will have a preliminary diagnoses of MS (Multiple Sclorosis) due to tremors.
Hope you get speedy diagnoses.
Renee

19

Saw the neuro today for my MRI results. Said they are normal, doesn't want to see me again, suggested I see a psychiatrist as my symptoms must be psychological.

I managed to get the MRI scan on a CD. I've looked at the scan, having read that neuros can miss chiari if not familar with it, but I can see there's no herniation at all, cerebellar tonsils are above the line across hole in base of skull, and lots of space around brainstem for CSF flow.

So, I don't know what to do. I can't believe he's right that I had subconscious "expectations" of suffering trouble from a head blow, and so created these symptoms. I've banged my head lots of times, and this time wasn't any different in so far as I just though "damn, I'll have a headache now" and feeling a little spacey, but otherwise tried to get back to my work, didn't even call a site first aider as I wasn't concerned.

:-(

20

Hi, its your body , you know whats going on with it, even if you dont know why. You have
Your scans. I believe that if you can afford it, always get 2-3 opinions from different Docs.
Good Luck
Renee