Ok......So How Big is yours? (giggle)

[danicafontaine]

Im trying to get a handle on the cerebellar tonsil thing.  If youd like a good laugh here's my first reaction:

"Ok, so take my tonsils out...." lol.  I have since been educating myself, and would like to get a feel for how outrageous or how insignificant my issue will be perceived when I finally do manage to get an appointment with Neurology....

My cerebellar tonsils are 9mm below the craniocervical junction.  How big are yours?

[selmaS]

  Hi I saw u have another post, I will answer there : )

[Jemwill85]

My daughter got diagnosed with chiari about 6 months ago... She's only 6 years old and its 22mm :-( seems like no1 I've read about so far has 1 bigger than her.... Panicking slightly

[selmaS]

Hi and welcome to the Chiari forum.

As u will learn from reading this thread, size of the herniation is not really the main concern...shape can be if it is blocking CSF flow and creating overcrowding.

Consider this image ..I am borrowing from another member (CW)

u have a long straw..... now u can insert 1 long piece of shoestring licorice thru ur straw and still drink thru it.....but, u can not put a gum drop at the top and get ur drink to move thru....

No matter how long the herniation may be if it is thin, it may be of little consequence....moreover one that is short and round or wider may obstruct and cause more issues......

Be sure u get to a true chiari specialist and only when quality of life is an issue should surgery be considered and then benefits should out weight  risks.

Glad to have u here, but not happy for the reasons that brought u.

"selma"

[jeppste]

My wife just got diagnosed at 20mm.  The neurologist didn't want to advise on surgery and is referring us to a neurosurgeon to meet on the 2nd Dec.  Her symptoms aren't incredibly bad compared to some of the ones I've read here, but we're nervous because hers are just so large!

[JENANDMIKE]

i was just diagnosed last week and the first radiologist read it at 6mm and my NS read it at 7mm,  he said reeally depends on who is interpreting it.    I also have hypothyroidism.    I work for an orthopaedist, so im lucky b/c he is friends with the NS in our area, and I have been able to get my appts within 2 days!     for the person who is having medication issues, ask your DR to call the drug rep for the medication that you need, the drug rep will be more than happy to provide your DR with enough meds for you to get you going, we do that all the time for our patients.   I personally dont want to be o n meds to control the pain and all the other 20 symptoms, I want to do the surgery.  unfortunately, I see at my job everyday the addicts who come in for their meds and its so sad.  I have been on Dilaudin (?) for the past week and that is HIGHLY addictive, so I have stopped taking it.

[*Stormy*]

I trialed Gaba more for the nerve/body pain then for the headaches. It did help a little with my legs but wasn't worth the side effects it caused. I felt like a zombie and had difficulty functioning which didn't wash with 3 kids!! I switched to Lyrica and Amitriptyline together and it does help too, I usually at least get a morning of less pain anyway. I would be looking for more of a migraine med if you are trying to help the headaches, I didn't find any change there.

I have Hashimotos too...weird huh? It seems that many of us with CM do, it would be interesting to have a study done.

Carolyn

[AJ29349]

Hi,
Sounds great!  My appointment is November 22nd.  Will probably come into town that Sunday.  Fill me in, have you had surgery yet?  Do you see doctors there in your town?  

[ploink]

My radiologist measured 3mm. But the tonsils do not herniate straight downwards and are not 'peg shaped'. They sort of wrap around the brainstem sideways and seal the foramen magnum like putty.

The deepest herniation is not at the back, where they usually measure from the sagittal image, but on the right side of the brainstem. When I measure it there myself, I get 7mm!
Look at my profile for images.

[selmaS]

Hi...drs just hand out what the pharmaceutics reps give them...the best thing I can think to do, is go to ur local pharmacy and ask what they may have comparable to this med and see if ur insurance would cover it...they r better at helping with that then drs.

Well one can tell u r a writer...lol...love the train reference and understand the need to vent in a humorous way.

I would think the use of crutches is not good for a chiarian...the pressure and strain it puts on the neck and shoulders.

Let us know if ur pharmacist is able to help u find something similar and acceptable with in ur insurance  constraints.

"selma"

[danicafontaine]

doctor gave me samples of MAXALT said- here take one- if that doesnt help wait two hours take another- if that doesnt help take another- take the samples before you fill the script.........drumroll please.......the samples contained one tablet. My insurance wont cover it anyways, so I should take the one sample, and then be completely frustrated that i still have a headache and dont have the others to take....heaven forbid it should work and then I cant actually have it.Why do doctors do that? Is it a test of our patience or a testament to their lacidasical, non-chalant attitude intended to inspire a return trip for another billable visit to my insurance company? Speaking of billable hours.... My insulin was 80. Doctor said it should have been ten.  My goiter has resulted in hypothyroidism, and my vision is shaking in my right eye again, the left side of my head went and got itself caught in a vise grip.  Some one clearly spoiked my Mountain Dew, because I wouldnt be able to walk a straight line if my life depended on it.   In other words, im dizzy again.   My right side of my nose and lips are numb, but my neck shoulder ear jaw and face are throbbing right along to the rhythm of the ringing and rushing which now coexist out of tune and harmony with my rapid pulse.  And as if it couldnt get any better than that, Im now throwing up the lortab and butalbital i took to try to get rid of the headache I have had since Halloween.  Oh, and lets not forget.....my shoulders hurt from the crutches I was using when I fell over because i am having severe spasms in spinabifida area which are just fabulous!!!! Needless to say, if I didnt have such a wonderful family, son, husband, and life, Id probably just throw myself in front of the nearest speeding freight train about now.  Yay.  (disclaimer: The suicide reference is intended as a descriptive adjective used in a humorous tone, in no circumstance is it intended to be reflective of my actual intent to throw myself in front of train.  Since I feel like I already have.)  Cheers.

[dpulum]

My herniation was 21 mm before surgery, about 5 mm after surgery (didn't shrink up as much as the doc hoped).  I took Topamax before I had the surgery for about a year.  I thought it helped with the migraine type of headaches & I was having ocular migraines and it definitely helped with those.  I didn't find that it helped at all with the pressure in the back of my head though, steroids are the only thing that I've found that help with that and I can't tolerate those full time.  I also got nystagmus after I started taking Topamax, which makes your eyes move back & forth involuntarily, so that made me dizzy, which was a definite down side and if you don't already have tingling hands & feet, it can cause that too. Selma,  I hope the Topamax is helpful.

Tina

[selmaS]

Oh my goodness...when it rains.....

Please keep us posted as to what u find out.....I am also hypo...Hashimoto's.....just had my 6 month US and waiting on the results to see if  my nodules grew ne...and the labs to see if the meds need adjusting.....

Sending prayers and good vibes~~~ that it is a false alarm on the diabetes and pancreas issues.

"selma"

[danicafontaine]

Well....was just diagnosed with hypothyroidism. Not a surprise. Sent to neuro with roper. My insulin levels wereb 8 times higher than normal. So being tested for diabetes and. Pancreatic probs now.

[selmaS]

I wish I had more info on it...just started the topomax last night.
I did not like the gabapentin at all...it messed up my IBS issues and did nothing else for me.....so that was a bust for me....and if it will interact with ur other meds best not give it a go.

Have u been tested for HASHIMOTO'S?....it can cause a goiter....I have small nodules right now that r being looked at every 6 months to check for growth....waitng on the last US reports ...praying there is no increase to their size.

Ask to have ur thyroid checked via freeT3 and free T4 and TPO antibodies along with TSH.

Good luck with the neuroendo
"selma"

[danicafontaine]

I was researching meds last night and stumbled on topamax myself. Its because of the spina bifida pain I suffer from that I was thinking gabapentin but they both say to use it with a headache med and since I use butalbital and lortab and since gaba is contrindicated with lortab I figured id ask about topamax as well. Hm? I'm off to the neuroendocrinologist to tell them I don't have the pituitary tumor they say I have......lol. maybe they can figure out why I have a goiter the size of my a## cuz. That's just more crowding in my neck......a lot of test results this morning. Sigh.

[burdzmom]

HEY!

thats a funny start to many many comments to follow im sure ;)

Mine WERE 11mm and falling. They were sitting on my brain stem and spinal cord.
Im 9 months post op on the 11th and am headed to Johns Hopkins to see specialist there since im still having alot of issues. (my chairi inexperienced doctors in NJ are all about what the tests and pictures are showing)
My brain stem is now bent at about a 30 degree angle as a result.....i know i know....that explains the lack of judgement in many of my brutally honest posts and comments....just blame it on  the brain injury. LOL....

[killypumpkin]

Mine is 5.5-6.0 depending on who reads it..lol.

My crowding is in the back of my head, not by my actual brainstem.  If you look at my MRI pictures I have kind of a "misfit chiari".  Round not peg shaped but still gives all the same lovely side effects.

I've said it all over the place on here but I sleep sitting up.  Lying down is NOT my friend.

[Givenstrength]

Thanks Carolyn! Must admit sometimes this stuff is pretty scary

[selmaS]

Hi...I took gabapentin...and it did not help....I am starting topamax tonight...I will let u know how it goes...nothing I took in the past helped...I am post op, but still have related issues to deal with and have been dealing with a lot of pain  again lately...so I hope it helps : )

"selma"

[danicafontaine]

OMG! You took the words right out of my mouth! All of that started almost over a year ago! And sometimes when the arteries thump, it hurts.  

This forum thread has been really helpful.  Next, Id like to know what meds everyone takes that actually  help the headaches. Any suggestions? Im tired of butalbital and lortab and flexeril and phenerghan. Any body tried gabapentin? I read somewhere it really helps?

[*Stormy*]

I wasn't even given a measurement really...just told that I "met the criteria" which to me says it must have been over 5mm. Never really thought to ask as I found this forum long after my surgery. What my NS was more concerned with was the overcrowding at the back of my skull (right near the foramen) that is where he said there was little or no CSF flow.

Givenstrength..I would get the whoosing sound you describe after exercising long before I knew I had Chiari. I also get it when I lie down if I am having a high pressure day (I can tell by the ear fullness, louder ringing and pressure HA). When I get the whoosing I can actually feel my arteries thumping hard in my neck like they are having trouble getting the blood flow through. When the pressure is high in your head I think it puts pressure on the arteries making them pump hard which is probably what we are hearing. I find the throbbing of my head pulses with my heartbeat.

Carolyn

[jptdad]

18 mm at surgery.

[danicafontaine]

I hear the rushing sound in my ears when I strain, and When i lie down.  Of course, I lie down and both arms go to sleep.  yesterday i had a dizzy spell unlike anything i have ever had before where I blacked out and fell down a flight of stairs and screwed up both ankles. A little while later, I had my first dose of what I would consider genuine tinnitis- but only in one ear.  High pitched ringing- lasted about 45 seconds.  Then, my face went numb and I limped my but to the cabinet for the aspirin for the migraine that popped in to remind me of just how miserable I was now, and wasnt before I fell.  Sigh.  still waiting to find a doctor that will accept my insurance and see me.

[n40066]

you're going to come to maryland????  you'll be in my back yard!  we should get together for lunch or dinner or something!  if you'd like, i'll message you my #!
elizabeth