Anyone head pressure comes and goes???

[seamatty]

Hello...I have chiari 1 and all chiari expert says I am not surgical. However I will go months with my head only hurting on occasion Somedays never and then bam...the pressure in the back of my head is horrific one day. This has happened to me 3 or 4 times in the last couple years. Anyone else have this. When I do get the 'bam' occipital head pressure it will last for a couple months and then subside some. Anyone else relate to that?

Seamatty

[mimosa7]

Hi Selma,

Where does one go for that kind of testing? (EDS and such)?
I doubt OHIP in Canada covers for specific thyroid testing you mentioned, if I go in requesting specifics they will simply tell me I'm too smart for my own good and tell me to live my life... bla bla...

I will try and see if my family doctor is willing to send me to the Genetic testing unit at the local hospital but I am not sure if they test for EDS?  

I also read that CFS leaks are hard to diagnose and would love to have that ruled out as my headaches/pressure are never morning ones, but again, supposedly it requires a special contrast and an expert.  I think the neurosurgeons looks at the overcrowding, if there's a lot, then your chiari tonsillar descent cannot be due to a leak, but I am not sure logic is the best way to go in something this serious and I wish CFS could be formally ruled out WITHOUT a spinal tap.

Let me know what you suggest for genetic testing... or what you heard of from Canadian posters...

Thanks Selma!!

[selmaS]

  Hi,.,,,I have heard and am aware that Chiari can affect and cause anxiety....in that the nerves are affected and just dealing with Drs trying to get answers....so frustrating all the way around,

As for the endoscopic procedures I was only repeating what my NS told me....and I know there is the bony decompression where they do not open the dura....so I guess it depends ....and I really think b4 u consider surgery u rule out ALL related conditions especially ehlers-danlos as it can affect how u feel and heal post  op should u be deemed a surgical candidate.

[mimosa7]

Hi Selma,

Dr. Jho's procedure supposedly mimics the full incision procedure including the dura.  However, I get your point, you can't possibly see the full scenario through a small opening.  I do however, with no medical background, think (and quite confidently) that the incision size has to do with persistent pain and headaches post surgery.  Since my only symptoms are chronic headache and pressure... I don't know whether to be thankful or frustrated, you know...  Those two seem to persist for life, even after surgery.

I have my full spinal MRI booked in the beg of September, and in Canada, it took a 2nd opinion to get that. I don't understand how it is the protocol in one hospital and not in another, but thank God that's booked...  I have no signs of a syrinx, but I read a lot on the topic, and they are quite a mystery themselves, disappearing on their own sometimes...
http://www.conquerchiari.org/subs%20only/Volume%201/Issue%203/Spontaneous%20resolution%201(3).html

There is also an interesting study that followed 10 Chiari cases of herniation range 10-11mm somewhere in Asia and only one got worse, rest stayed stable.   My herniation being 12mm and headaches my main symptom must puzzle you yet again, and let me tell you my tonsils are not pointy...

I will try to update my profile on here a bit and let you know re next MRI.  
I am just soooo tired of chronic pain.  Being with people I love and doing things I love really helps me forget. Therefore my pain is like 3/10 on a scale, just daily sigh...

Selma, have you ever seen this btw? It blew my mind.  That is why I want to rule out everything.  But we all know it's not in my head lol...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1188488/


Also for anyone reading this in the GTA area, I have found a good homeopath who is regulating my migraines (went from weekly to none in weeks!), just private message me :)

Hope you're well S!

[selmaS]

  Hi...to PM cougar move ur cursor over the name a box will open to send a note, a message, or to add as a friend....click on to send a message.....if u r not friends u may have to include a code to send the PM (private message) and if they have a privacy setting it may not go even with the code u may have to wait until u send a friend invite.

The PM will generate a e-mail so the member knows someone is trying to make contact.

I have not heard nething more of the min invasive procedure....as my NS explained when I asked about them, much of the time this is a bony decompression, they do not open the dura, and these tend to be redone in a short time as they do not seem to give long lasting results.

And my NS said it is too easy to nick something and not be able to see, or to see to close properly....u do not want a CSF leak and he felt it was not as easy to prevent in such a limited space.

Have u had a MRI of the cervical , thoracic and lumbar spine to rule out a syrinx?

[dixiestevens]

Sorry Cougar, just saw this request. I live in Alberta and my neurosurgeon is in Calgary. I am happy with her thus far. If you want to talk pm me and I can tell you all about my experiences here in Alberta.

[mimosa7]

Hey,

I am still getting used to this website, I don't even know how to PM, but we definitely could get in touch.

I just wrote a long post above. You definitely want to see Dr. Tator. But they're very conservative about surgery here, especially because you're at 5mm. I'm at 12mm, imagine, and my tonsils are not pointy/peg like.  

We will connect to get into details. Stay strong! :)

M

[mimosa7]

PSS.
He can tell my CSF is cut in half at the back... Based on a 1.5T MRI... Cine is not done here but there's def obstruction...

[mimosa7]

Hi Selma,

Thanks for all your input, I sort of got busy and forgot to log on... Exactly what you said about people on here, only around when scared, so we cannot really say how many had success with procedures to then go on and disappear...

I saw Dr. Tator at the Toronto Western Hospital, and he's amazing. Too bad he only consults, he retired from neurosurgery if I understood correctly.
This is his info for anyone reading this in the GTA area:

http://www.uhnresearch.ca/researchers/profile.php?lookup=5950

Having said that, my herniation is 12mm!!!! How I score 100% on the 1 hour neurological exam, I have no idea.

My newest flare up (first time ever) is itchy scalp but I can tell it's coming from the inside (irritation) or simply nerves... It's so annoying and makes me feel coo coo lol! Also my eye hurts if I look to the left... Like a pressure.  And I now feel a constant head pressure. I agree with the post above by cougar5 that it may be weather as we nearly had a tornado the other day up here. Global warming definitely isn't Chiari friendly, I can feel it lol.

I stopped counting little nerve lapses. As Dr. Tator confirmed, with different nerves being compressed, it's normal to experience different tingles and whatnot on different days, it's not in my head.

I am seeing a homeopath to control my anxiety over this whole matter and that seems to be helping, I think.  Or maybe mankind get used to everything they're dealt with time. Not sure.

My spinal MRI (which the Oakville Hospital neurologist advised me is unnecessary after saying my actual 12mm herniation is just a "few" mm and mild) is finally booked through Western for September and they're redoing my Head MRI on a better machine.

I am going back to grad school for a year so I need to buy time. I really do. I hope for no syrinx. Will keep you posted.

PS. Any updates on Dr. Jho's minimally invasive procedure?
PSS. Is talking in your sleep a symptom of Chiari (ever read that since you're so active online)? It's something that runs in the fam, but increased for me, maybe health anxiety only lol, so I'm trying to connect the dots...

I hope you're well Selma!

M.

[cougar05]

Where in Canada do you live and do you like your ns? I was referred to one Hamilton that had terrible reviews. The not something that I want to mess with so curious what your rating is of your Dr.

[cougar05]

i live in ontario too. i was just diagnosised with chiari 5mm.there are some doctors in toronto one being the chief of neurosurgery that are suppose to be fimilar with this condition if you are interested check out the doctors list on this website.i'm like you where nothing is showing in the brain but the pressure is there at certain times like during my period. if you have an info or need someone to talk to please write. since we both are dealing with similar doctors in ontario maybe we can help each other chart this course.

[dixiestevens]

I also have tremendous head pressure pains, I recently saw a ns in Canada and I am waiting to have a CINE MRI, she tells me I have symptoms of Chiari, but I also have some atypical symptoms.  She wants to make sure that surgery will give me relief. I have had an MRI that shows CM1, but the it's only 7mm, not that the amount matters in my opinion. My pains definitely come when I put any pressure on my body, coughing, laughing hard, bending over, even going to the bathroom some days is excrutiating. I hope you get some help soon, as I understand the pain you are experiencing.

[selmaS]

  Hi and welcome to the Chiari forum.

This is also a Syringomyelia forum as well....we have many members with a syrinx some with and some without Chiari.

Do u know if ur's is congenital or if it is injury related.....???

What have ur Drs suggested for pain relief?

[eesha66]

i have syrinx but not chiari. my headaches are influenced by pressure on my spinal cord. some research i found and agree with suggests weather pressure changes affect us. thats been my experience for the last 6 years.

[selmaS]

  Good Question...I have not added ne MRI's as I am not sure how to do it as u also need to remove personal info from the MRI, using photo shop......????

I am not that comp savvy....lol....wish I was.

U may want to put the disk in ur comp pull it up and take a pic with ur camera....and then upload it that way...not sure what the quality of the pic would be tho.

Really? The Drs would not review them for u?...hmmmm many do that and I was suggesting it to a few people....please PM me who u contacted so I know......I know not all pre viewed MRI's were free some will, while others charge a nominal fee....I think I know who u mean bcuz of where u say u called....sigh.

As for the ventricles....not sure u can determine how Chiari is affecting u by looking just at that and not the cervical spine or a CINE....I am just not sure....there area few from Canada....*Stormy* is from up there and had surgery, not sure where she is in relation to u tho....but if u PM her she may be able to help u....did u look at the Chiari Dr list for Canada?

[mimosa7]

Hi Selma,

First question is how you all get a screenshot of your MRI to add to pictures?  Lol

I saw a neurologist yesterday and because my pain is unilateral she thinks it's chronic migraine.  I wish! She also says Canadian surgeons are busy people and she hasn't heard of a local Chiari surgery in years... great...  I mean I trust her opinion and it's celebratory news but fact is my headaches have taken a daily presence,  starting by 2pm and relieved by laying down. Odd?

Do you know if brain ventricles look normal upon presence of a syrinx? She did not order cervical/spinal MRIs, CINE is unheard of in Ontario and she says if ventricles look good the CSF flow must be okay... Again, yey, but why CINE in US then? I also see a white dot in the spinal cord circle on Axial Brain MRI and have googled that can indicate a syrinx within spinal cord... but a radiologist and neuro both missing a bright dot seems surreal so I'm staying put together or so I think... look how much is going through my mind lol...

Finally, called a few top names in NY, Colorado.. They all require you to come in for a full consult now, no pre-viewed MRIs for free anymore as some on forum claimed 2 years ago... just my luck... thinking of calling our health care to see if they'd cover if I pre-apply...

Thnx Selma, you're the best.

Hope you're well!

M.

[selmaS]

  Hi..well to first address ur family history it is possible for Chiari to sit dormant or for the symptoms to cycle and the dots are not connected...so a HA may be considered the result of a bad day, or stress, and other symptoms can be thought to be a flu etc....so with out a MRI it is hard to say noone has been affected, but none to the point as u have been...same with me...

A fall or MVA or nething such as a hard cough or sneeze can trigger symptoms to increase.

So u may have had symptoms longer, but thought them to be "normal" or from daily issues and nothing so sinister as Chiari.

What do u mean u have yet to see a 100% review of the surgery?

[mimosa7]

Oh and noone ever heard of migraines in my fam except mom's sissy after 2nd pregnancy for a few months only... Mine have been increasing in frequency and severity (had what I'd best describe as Oscillating Scotoma (flashing snow but no full loss of vision)) a few weeks ago, first time, and hopefully last, after an exhausting workout.  They are a lot less scary once you go: Ok it is migraines.

Also worth mentioning, I never lifted weights until last year... I am starting to think neck strain can initiate Chiari symptoms, even low one. I lift 4x a week (now stopped), so you can imagine how much harm I did to myself in the past 12 months LOL. I feel ridiculously mean to my body, it tried speaking up...

I am yet to see a 100% review of this decompression surgery. Honestly, I need a drink. lol

Cheers,

[mimosa7]

Hi Selma,

I have my report and my MRI captured on a CD. I could post a picture I guess.  The report does not specify length but it does say Chiari in brackets and mentioned overcrowding at the foramen m.

My neurologist is booked for June 5th but it is the same guy who didn't order an MRI because I scored perfect on his exam. My main problems are all on the left side of head only and started last summer including:
-constant neck tension, lumps that are either lymph nodes or knots on the side of the neck but more towards back
- temporary relief after massage but not always
- sore scalp can't sleep on the back in the middle only with head tilted to the right
-sore occipital left area when shampooing head not always
-in midst of all this got this Dx without knowing Chiari exists and a tetanus shot for unrelated wound all in the same week, with the Tetanus giving me upper arm numbing, so now I can't tell if it's Chiari escalating or stress/somatization lol
- night jolts that got better overtime as I took some Klonopin/Clonazepam when doctor assumed it's all anxiety but still happen from time to time, I wake up in the middle of the night (it used to happen at 10 minute intervals up to 10x) with my head numb for 10 seconds... I am hoping stress/sleep paralysis and bad timing with Chiari finding
- eye floaters in bright lights/sky only but 24/7 now in shape of vague smoke corner of my eye as I blink or clear nodules. Had full eye check with dilated pupils, all good...
- low blood pressure 113 on a good day over 70, 105/65 on a bad day... Dizzy ONLY when I stand up from a chair on certain days

A big part of me hopes it's all unrelated but I'd be very lucky.

I will try requesting the doctors you have enlisted Selma but based on my research I'd only let Dr. Frim and Dr. Oro near my precious head should things escalate, just not sure where I'll get 50k from...

I hope you're having a good evening! :))))

[selmaS]

  Hi and welcome to the Chiari forum.

It is sad that so many look to the herniation length when in fact it is CSF obstruction that is more important...and over crowding is next ...the length can be very long over 13mm and not cause obstruction bcuz they r long and thin, but u can have someone with a 3mm herniation that is wide that causes the CSF to cork up and severe symptoms.

Chiari symptoms can cycle....so u can have a flare and then it can calm down for weeks, months or yrs at a time....so there are many that can related to what u r saying.

Do u have copies of ur MRI and the reports? Did u see the Drs list for Canada?....it is only meant to be used as a tool to research Drs that some members here have used,..this list is not an endorsement or referal.

[mimosa7]

Hi Selma,

I have seen your name across many forums but some don't allow new sign ups unless one can specify herniation size and all the diagnostics. I am a newbie, and other than the report mentioning overcrowding at c-whatever it's called junction, I cannot estimate the mm size of my herniation, but it reaches the dorsal arch of C1.

Anyhow... I called my neurologist's office to move up my late June follow-up appointment (I had to get a new fam doc who ordered the brain MRI as I score 100% on neurological tests) and his secretary mentioned she has no idea why we assume CINE MRI is needed and where all these Canadians find a CINE MRI, probably Buffalo... Isn't CINE MRI key? Noone scanned my spine yet but I can tell in the brain MRI that my cord looks intact down to my neck...

Your presence and support is admirable Selma.

Cheers,

M

[actressmouse]

I experience the severe pressure headaches...only mine never really leave.  I always have some pressure in my head, but usually, I "power" through until it gets to an 8 or 9 (on a scale of 10).  My pain tolerance is pretty high, I guess.  But yes, I can relate to the "I feel like my head is going to explode" feeling.

[selmaS]

  Yes, Chiari symptoms can cycle and this is y it is so diff  to get a dx as many times we do not see all the episodes as connected....

But this is very typical of chiari and how the symptoms affect us.

[nsalem656]

Yeah but you said in your first post that your doctor said your not a surgical candidate.

[sunnyset]

I didn't have any symptoms other than occipital headaches and lightheadedness upon standing (infrequently). But I generally got my headaches when exerting pressure- ie, working out, straining, laughing too hard, etc. forcing myself to sleep usually did the trick.. I think that helped stabilize the csf flow. But I had a syrinx, so I was a surgery candidate. Had I not had a syrinx I wouldn't have been recommended surgery.