Boxing gloves at the ready!!!!!

Well It's started already, that knock back that so many of you on here have warned me about!!!

Im stressed,distressed,angry and sad!!!!  Wo thats a whole lot of emotions.

Had appointment today with my gp who had recieved a letter from the radiologist.... It stated a mild cerebal ectopia, thorasic clear and stated that his findings are that this is a mild congenital issue!!!!!

My gp warned me that he feels they are going to put my symptoms down to stress and tell me it's all in my mind, this has been my biggest fear, and just knew that I was never going to have my voice heard!!

Guess what confuses me is the fact that they recalled me for mri with contrast to check csf flow!!!  If this is mild,all in my mind and congenital then why waste valuable hospital funds on testing me?????????????

Confused just does not sum up how I feel right now.  Guess im just praying that my NL apt on 22nd November is taken seriously..

Sorry about the rant but just dont get it right now, can you imagine pain, mild incontinence, balance probs,numbness,HA lasting 4 weeks,flushes,loss of fine motor skills, fatigue, etc etc etc.

Thanks for reading

x x x x

[LisaM46]

Did they give you a measurement of your herniation?

I wouldn't take the gp's assessment seriously.  And, I would be mentally prepared even to go in to the NL.  My NL was supposed to be familiar with Chiari, but she didn't know a syrinx from residual canal.  Thank goodness I was referred to a NS!  When is your flow study appointment?  

Lisa

[joyus12b]

I understand your frustrations when dealing with these appointments.  It is unfortunate, but hopefully your NL apt next month will have better results.  

Hugs and take care

jocelyn

[selmaS]

I am so sorry, but it just seems to go  with the territory of Chiari.....I just got some info from a friend via her dr regarding hyper-mobility/EDS....and I am surprised to see that sooooooo many of the issues I felt were residual from Chiari .....

Too many disregard the possibility of having EDS or hypermobility and never get checked, but it can cause so many other pains and issues it is well worth having it ruled out than never being discovered.

I mention  this bcuz of the incontinence , balance and other issues u mention can be related to EDS/hypermobility.

Keep pushing Niki.....

"selma"

[irishred795]

Unfortunately, getting a firm diagnosis is a looonnng process. When my neurologist read my first MRI he said I had cerebellar ectopia, but it was too mild to be causing any symtpoms. I went to a specialist a few hours away and he ordered a cine study which showed 5mm herniation and restricted CSF flow. I'm in the watch and see part of the journey. Luckily, I'm a stay at home mom, so I don't have the job struggle. Well,my husband is a heavy equipment operator and worked out of state for 7 weeks this summer, so I do have a lot of work and a 4 and 5 year old boy to take care of. My 5 y/o is going to be evaluated for Sensory Processing Disorder soon, so he's a lot of work and requires Herculean patience.  Even when DH is in town his hours are unpredictable. I guess what I'm trying to say is that this road to being dx'd and recovery is not a straight one for most of us, there are lots of curves. Hang in there and keep traveling. Thanks to this help group, you don't have to be alone.

[niki3350]

Thanks guys just knew I would get my lift from here, why does this have to be so god damn hard to be taken seriously!!!!!  

Lisa my csf flow with contrast is on 10th November, guess they think herniation is smaller than 5mm NL mention so are doing flow check to determine width and Possible blockage.

When I asked the size of herniation they laughed at me down the phone and told me they do not measure it????  How rude as I no they measure it!!! think they think im the village idiot, not educated lady that teaches autistic kids!!!!

Well positive news is that I have found 3 cm specialists close by, so after NL apt on 22nd Nov am going to get referral to one of these.

I seriously have not waited 3yrs to be insulted anymore!!!!!

Oh ladies im on a real rant now!!!!!

Hugs to you all
Niki x x x

[selmaS]

There r many NS that have no idea from what point to measure from...and some may not measure it as the size is not as important as a blockage and overcrowding is....

Still, that could have handled the reply to u much better than they did...not all drs or their staff have good communication skills.

"selma"

[LisaM46]

In the scenario you described, I would not label YOU as the village idiot!  Sounds like that person was on the OTHER end of the phone!

Good luck with the flow study!  Like Selma said - keep pushing.

Lisa

[Stephiec79]

I don't understand it either. We, as well as so many other people, are going through the same struggle. We KNOW that we are experiencing these things. Your doctors are telling you it's stress. Mine are telling me that all my symptoms are from a very minor sleep apnea. Other doctor's are telling other people it's something else, but HELLO we all have the same thing in common! I just don't get why these doctors are so quick to dismiss Chiari as a diagnosis. I left my NL appt last friday in tears. My husband was furious. Everyone around me sees what is going on, but this person who spends a couple hours with me has NO clue!
I'm so sorry that you you are getting the run around! Keep your chin up!!!
HUGS!!!

[taylapj]

Oh nikki what a run around! I wonder why they don't like to give sizes out! I asked my NL that o last appointment and she showed me how they measure it but fluffed around the answer,, un educated neurologists refere to mild as anything below 5mm, wrong I know but it's all they know, old skool research, hence why I've had to take a step back for a while, it was dragging me down to the point of depression, luckily I have some really good meds for now so at least I'm functioning now. Xxxx hugs

[*Stormy*]

They laughed at you??? That's not only rude, it's completely unprofessional!!

I can't say this enough...the only specialist you will get help from is a NS!!! NL etc...just have not been taught enough about this condition. On the other hand NS deal with surgical issues all the time. That's not to say that every NS is knowledgeable which is why you have to do your homework. I'm glad to hear that you already have :) I would just get moving on to getting those referrals if I was you!

Good luck
Carolyn

[niki3350]

Oh Guys thank you so much for all your positive responses, it just feels like I am taking one step forward then two steps back all the time.

Had letter from NL today this is what it said:

The abnormality seen on yr scan is develpomental and something that you would have been born with, in view of your symptoms, though possiblt tying in with this irregularity.

No further details regarding degree of tonsillar decent are given, however there is only a very mild abnormality commented on the mri scan.  The mri of the neck was entirely normal.

Guess you can see why I posted yesterday and need my boxing gloves.  HA HA.

Selma what tests would I have to enquire about to check for the EDS/Hypermobility.

Thanks again to everyone

Hugs
Niki x x

[selmaS]

To begin with they do a few neuro tests...I will send a link that explains JHS and EDS.....they r  similar in nature but do have differences.

JHS= Joint Hypermobility Syndrome

EDS= Ehlers-Danlos Syndrome
The Brighton Criteria includes and extends the old Beighton Score, which now makes the Joint Hypermobility Syndrome (JHS) diagnosis much more precise.  This is due to the fact that many patients with this syndrome have only a few hypermobile joints or have some joints not comprised by this method, thus it became necessary to widen the criteria.  Besides having hypermobile joints, JHS can present several symptoms which compromise other tissues, such as skin alterations (soft, thin, lax, translucent that shows the veins, bruises, striae, poor wound healing), hernias, uterine and/or rectal prolapse, varicose veins, mitral valve prolapse, myopia, etc.  This group also includes Marfanoide habitus (tall, thin, with long arms and fingers). In patients with JHS there is not only fragility of the tendons but also alterations of other tissues and organs due to the genetic alteration of the collagen fiber. It is necessary to be very well acquainted with these criteria for the diagnosis of these conditions.  For a precise diagnosis it is necessary to, first, determine the Beighton Score followed by the Brighton Criteria. It is very unfortunate that these two names are so similar,  the reason for which they are usually confused.

I hope this is helpful...I understand a rheumatoid dr that is a EDS specialist will  do more testing.

U do need 4 points out of 9 to be considered a EDS patient....hypermobile elbows and knees...1 point for each that is...and that is 4 points....touching the forearm with the thumb, and a flexion of 90% of the fingers...so if each side can do this it is 1 point each side....
The last one is to bend and place both palms flat on the floor without bending ur knees....that is 1 point.

"selma"

[niki3350]

Thanks selma will look into this, I have stretch skin neck,elbows, bruise very easily and cut easily, have small cyst lower spine and my dh always comments on my velvety skin.  Maybe I do fit into category, until back probs could place hands on floor but not now.

My mum thinks I have fibromalayia due to pain I experience in legs shoulders knees ankles back and now my neck has started to stiffen and my jaw is clicking when I talk and eat,

But hey Honey they going to tell me this is all in my mind!!!! ARGHHHHHHHHHHH

hugs
Nic x x

[taylapj]

Babe what ever you do don't accept fibromyalgia as a diognosis without the correct tests, I'm seeing a rhumo doc at the hospital next week as I'm being pushed as having fibromyalgia so I'll let you know how that goes and what tests they do! Often people with chairi are diagnosed with fibro/Cfs as a 'wastebucket' diognosis ie; don't know what's wrong. Xx

[selmaS]

EDS can cause pain that is very similar to  fibro, I was dx'd with fibro for yrs and my chiari drs told me it wasn't fibro, but the EDS causing the pain.

TMJD is an effect of EDS and chiari.......no fun I know.

I have 8 out of 9 for my Beighton score......that is relatively high since 4 will give u the dx.

"selma"

[lu7997]

Niki I posted to a comment u made on another post.  Please don't give up. And yes it is inyour head so to speak. Lol. Next time they say that agree and say you are right it is all on my head. The herniation is deff causing the problems in MY HEAD.  It is so hard and I know I battle with it to but try to keep a sence of humor it will help u through this. The doctors that are out there are ignorant to so many things and the ones affraid to say it are the ones I would never trust.


Hang in there and u will find the help u deserve.  ( in case u took that wrong the head thing I didn't mean mentally I mention phisically in ur head. )

[redkim]

I saw an NL for arm pain about a month ago, they always start with "what can I help you with today?"  i asked him if he heard of Chiari he said "it's a benin incidnetal finding".  I laughed and said, "Not if you ask people who have it.  I had surgery for it less then two years ago."  He was shocked, lol.  He asked me lots of questions.  Two weeks ago I saw an Ortho doctor for my hip and mentioned the Chiari he too said it's a benin, but that he doesn't know a lot about it.  

I saw my NS yesterday and told him I was concerend the NL or another doctor would put in my file that Chiari is benin and it would affect treatment, and minimize my surgery.  He told me some doctors are uneducated and said it's good that I was telling the NL about my experience.  Just ask your doctor next time...if it's benin then why do soooo many NS perform surgery for something that is "harmless" I would expect them to be dumfounded.  Then ask them, have you ever evaluated someone who had surgery?  They answer will most likely be no, so remind them that they have no experience with Chiari.

It's a pain that we all get told it's in our head and even after surgery they make us feel like the surgery was unneccessary...not sure how doctors continue to perform unneccessary brain surgeries, lol!!

[niki3350]

Great comments girls and have wrote down these questions redkim, thanks so much, and lu7997 not offended in the slightest and read your comment on u tube post.

God I love this forum you guys all keep me going!!!!!!

Love to you all

Hugs
Niki x x x