All tests have been done...

and the *only* thing we keep coming back to is Chiari.  Everything normal with bloodwork/urine--and the gamut of tests were run. So, I would like to be sure that the new 6-8 lesions in my brain are not contributing to symptoms, but I feel confident that decompression surgery will be the answer. I've had it scheduled once and was a surgical candidate...The waters just have been muddied a bit since that point.  I have reached the point where I am tired of these symptoms.  They are interfering too much in my daily life.  The drs appts are interfering.  My brain is focusing too much on this.

It still seems odd though to have such a progression/increase in daily symptoms that can be documented over time--starting about 10 years ago with dizziness...then nothing until a year ago with the TIA-esque event and a trip to the ER....residual visual disturbances and numbness....another TIA-esque event in fall which left me with residual fingertip numbness and more visual disturbances...then the brain mass discovery in November and surgery to remove it in December...8 hours of tremors in early January which led me to the ER...5 days of panic attacks....and then giving up night driving due to vision deteriorating....extreme dizziness and vertigo...loss of feeling in fingers/hands/arms/'pockets' in other parts of the body....loss of taste...facial tics around the mouth...

[selmaS]

  Hi...not sure what to say....chiari is relentless......u know ur body and if u feel this is the right thing for u, then that is what u should do....all I want to caution u about is be sure u r healed from ur last surgery b4 u go into another one.

I pray all goes well for u .

Please keep us posted
"selma"

[niki3350]

Its great that things are finally falling into place for you after like most of us you have had the chiari runaround.

Selma sure is right chiari is relentless but so are the less than understanding nl we visit who just dont believe us.

Like you my probs started with balance issues and fatigue 11 years ago and then bam 3 years ago little by little my symptoms escalated like yours but I have not suffered tics, numbness,pain,incontinence,visual disturbance,huge cog fog, confusion, no driving at night for me and restricted daytime driving when im unbalanced.

Its just a mess what we have to go through, I have 6mm decent and found out yesterday that I have very restricted csf in posterior, im currently going through a battle with nl verses ns nl says cm not causing issues ns saying they are.  Nl is trying to indicate I have a somotization disorder, so next move is physce reports etc.

Like selma says give yourself time to heal b4 your next surgery but I wish you all the luck in the world.

Niki x x

[dkdean]

Niki and Selma--

Thank you both.  I feel like I am in such a fog here...I know I need to be the one to make the decision, I just wanted it to be really clear cut.  I feel like it is now, I just wish the CSF flow was more limited so I knew that was an issue. I also wish the NS would get back to me.  My anxiety is increasing since he isn't responding to my emails in the last week and a half...which makes me think I've annoyed him (that's me overreacting) or that he is busy.  I just want to know what his opinion is now that the bloodwork came back fine and I'd like a reg NL to look at the brain lesions--the other NL's I've gone to were only looking for MS or epilepsy...and since I was cleared for both (thankfully) they said I wouldn't see them again.  That's great, I just wish I had someone (besides me!) who was overseeing the medical side of my case!!!  I can be my advocate--I just need someone making the referrals needed!

It does make me feel so much better to know that my symptoms are not entirely too wacky for CM though...Dr Di made it sound like my progression from last March to Nov was a really fast progression and then from Jan to present has been REALLY fast with lots of increasing symptoms--which made me think more was going on...Happy to be a Chiarian through and through!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[niki3350]

Please no that you are in my thoughts and that I am with you every step of the way if only in thought when you attend these appointments.  TBH this is really getting to my husband now up until december last year I went alone to my nl appointments and my dh just did not get why I came home crying.

So now he comes and has once cried and now is extremly frustrated as this nl versus ns battle continues, im like wow Honey if you cant cope try living my life with symptoms on top of this, it affects all aspects of our married life, especially as I now experience numbness in my private areas, oh hun this is not gud im 39 and didnt expect to have the married life of an 80 year old.

Do you have csf flow restrictions or total blockage, how big is your tonsil decent if you dont mind me asking.  Im at 6mm with restricted posterior flow and the very very limited space where flow restricted.

We are all here for you.

Take care
Niki x x

[dkdean]

Thank you, Niki!!  Mine is anywhere from 6-9mm depending on the day it's measured...I am told that the CSF flow is fine...I have not been told anything about the space or if the brain stem itself is compressed.  Part of me wants to go see Heffez or go to TCI,,,but it's not in my insurance.  I just think they'd be able to give me better answers about the Chiari.  I went for neurocognitive testing today and it really illustrated my cognitive deficits...whew...mental math and memory are really a struggle--and I am a teacher!!!

How did you find an NL?  I wish I could find one to see since I feel like I need someone to address the symptoms b.t now and surgery...but I just don't know.  I'm 33 and torn with advocating for myself and being seen as a whackjob!

And, the sidenote here which Selma is aware of--I had a brain mass that was found in November and had brain surgery to the temporal lobe in December...so, I am still recovering from that surgery as well.

Selma--I meet with the NS in June...which gives me 6 months post-surg...thinking I will try to hold off until late Aug or Sept when my son is in school and my daughter is in pre-school to give them some consistency as I recover...and to lessen my guilt as I would feel guilty not being able to take them to the park, zoo, library, waterpark, etc...But, if flow isn't blocked...what will the surgery really do?  NS has returned my email yet in regards to that!!  Thank you so much for all your support and answers...even when my brain is babbling and all over the place!!!

[selmaS]

  Well, even if ur CSF flow is not obstructed, u can have compression of the brain stem...that is no good...same with the over crowding, which leads to the compression.....and there r other issues like the odontoid could be facing the wrong way (it has a curve to it) and some have the curve in the wrong direction.....(not the lordosis)So, it is possible u have something else with ur chiari going on...of course the CSF blockage is the most important and most common issue that will bring a NS to the OR...but, there r other reasons as well.

Do not focus on all that, wait for the dr to call u, and relax so u heal......u have to heal b4 they will even consider doing surgery on u.....so do not get urself stressed out.

and u can babble here netime : )

  "selma"

[niki3350]

Im live in England so our system over here is very different I have had 2 nl at a different hospital that after 3 years of testing basically just threw there hands in the air and said we really do not no what is wrong with you, as tests for ms,lupus,lymes etc were all neg!!!!

So after years of being told one thing then another eg, silent migraines, m,e neuro dysfunction, my gp had had enough and referred me to a neuro hospital that I had found through the ann conroy trust.

Here I saw a ns who confirmed cm 6mm no syrinx or tc or ddd etc etc but he was not convinced this 6mm was causing my probs so I went to see senior nl, who is now rerunning tests, but trying to say it could be somatization disorder. That was wednesday!!! this Monday saw ns registrar and they had my cine results from prev hospital and they found very restricted csf flow in the posterior of my fm with very little space.

I now go back in 3 moths to see NS and inbetween that am waiting to hear from NL but they dont seem to be agreeing on what the cause of my probs are.

Like you I teach and have been off since sep, pain unbearable, huge cog fog and disorientated, NL says i will never teach again ns says I can.  But I work with severe autistc kids and its tough, but I want to try one last time to go back b4 they finish me.  I adore my job and dont no what I would do if i didnt teach.

I hear your frustrations Honey but like selma says you need to allow your body to heal from your last surgery.

Hugs
Niki x x x

[dkdean]

Thank you both so much!!!!!!!!!!!!!  I've been feeling a bit disenchanted with knowing I am headed for another brain surgery and you've both made me feel so much better!!!!!!!

On a happy note...We are taking our kids to Disney World to celebrate our family and good health :)  My husband and I are also celebrating our 10th wedding anniversary :)  So, we can figure all the brain stuff out after that.  All before that will be planning for the mouse!!!!!!!  I have found that I do so much better when having something fun ot focus on...I'd lost my perpetual smile...and that's not me!

And Selma--Thanks for letting me babble and for bringing up other components that contribute to CM...so much focus is given to the CSF flow, but I want to be able to speak clearly on other concerns.  One that the NS brought up was a developing syrinx, but one that was microscopically too small to show up on the MRI in Feb...but still could be causing problems.  CINE again in June (my request to not do it sooner).  I am so glad you are in my life, Selma.  Thank you so much!!!!!

[selmaS]

Aww thanks, I enjoy u being in mine too : )

And please promise me something......have fun with the mouse, but stay off all the fun rides as they r no good for u, and use the carts they have for handicapped at the park....it can be too much and u may not think so until u  have done too much....plus it gets ur entire family to the head of lines : P

Have fun sweety

  "selma"

[*Stormy*]

Niki..
I just wanted to say that I faced a very similar battle to that which you are facing, back in Sept 09. The only difference was that I wasn't told by my NL about the CM and the radiologist didn't list it on the report. So I went for months and months getting worse an worse, not knowing what was wrong with me. Finally, on my own accord, I got myself into seeing my NS just as a last ditch effort really. He noticed the Chiari and mentioned it to me and told me that he was going to confer with another surgeon about my case. By this time my gait was greatly affected along with a huge laundry list of other symptoms. Three days later my NS calls back telling me that I need to come in to discuss surgery with him. The day after, I go see my GP and she tells me that the NL has referred me back to her with a dx of "stress disorder". It was hugely confusing having two vastly different opinions. When I called my NL on the Chiari he told me that it was usually not symptomatic. I couldn't understand with all the symptoms I was having that he hadn't even considered the Chiari!! When I asked my NS about the discrepancy, he explained that b/c Chiari is treated surgically, most NL do not spend the time and energy on learning about Chiari, therefore it is not really in their field of expertise. Well his explanation was a lot better and I KNEW that I was not crazy so I decided to just disregard my NL and go with the only specialist that seemed to know anything about Chiari. No matter what I suffer with since the surgery (and a lot of my suffering I truly believe was due to being strung along for so long), I will never regret that decision. My NS was the only one to give me any hope and he is still even the only one now that can give me some semblance of an answer. So to wind this down, I guess what I am saying is that if I could change just one thing it would be to have not let my NL jerk me around b/c I lost a lot of valuable time. My advice and JMHO...the NL that says it's somatization disorder...RUN from him as fast as you can!! Find a NS that you are comfortable with and knows his stuff and proceed from there. If you have already found one then that is where I would go!! Did you know that 52% of people with Chiari, are told at some point that it is psychological? I think the NL's are the crazy ones!! I know how it can be in the UK, I have talked to other members there and it seems that you get the royal run around like you do in Canada but keep pursuing it!!

I am so sorry you are in this position...I remember that was the worst feeling I have ever had, to know that some Drs thought it was all psychological yet I KNEW it was more than that but couldn't prove it...

Take care
*Stormy*

[*Stormy*]

I am am glad that you have got things somewhat sorted out...what a pile of hoops that you have had to jump through!! I pray that your symptoms stabilize so that you can have a good summer with your kids before heading into surgery! BTW...I found that my kids were SO much more resilient that I realized...my recovery was done mostly during the Christmas break so I felt a little guilty but it was actually nice to have them there to cuddle:) When mine decided to progress it was a fast one too...so just make sure you keep an eye on those symptoms.

*Stormy*

[niki3350]

dkdean, Its a pleasure having contact with you Honey and Just lovely that we are all here for each other to help vent off or just support.  Wow disney world sounds fab, have always wanted to go but my youngest at 14 hates rides, so we have never got there and now I guess I wont be able to go on rides which is such a shame because I love them, im such a big kid at heart, shame the cm makes me feel as if im 85 some days.  We are going abroad in August to Gran Canaria and tbh I cant wait, im already buying bikinis and sun tan lotion.

Stormy  Your words of encouragement are truly wonderful and thank you so much, I cannot thank you enough.  Im just so torn as back in January my ns who I like confirmed cm, then a week ago a nl takes that diagnosis away then 4 days after this I go back to see ns who again confirms cm, tells me I have very restricted flow and wants me to go back in July.  The problem I no im going to face is that the nl is a senior nl and also the clinical director of the hospital and very very very highly sought after by all the staff and patients actually travel from america,canada and all over to see him.  So how the heck Im going to be believed by him I will never no.  My symptoms seem to be getting worse over the past few months, Im struggling big time with tasks when im more energetic, if i walk the dog or do to much hw I get awful pain top of head, go all confused, body is exhausted but on rest and guess when heart rate gets back to normal I feel ok.  ns knows this but not listening, they dont take me seriously as I dont get the debilatating cm headache, just everything else.

I guess time will tell.

Niki x x x

[*Stormy*]

My NL that didn't believe me and he was the head of the NL unit of the hospital...so I know how you feel. Sometimes you just have to separate yourself and decide that he is going to have his opinion, you are probably not going to be able to change it so you need to decide that it is HIS problem, not yours. As you go through this you will find that there are many compassionate Drs out there who DO care and will be appalled at the treatment you are getting. I'm not sure if your situation is the same as mine but my NS told me not to worry about the NL opinion and I was still able to get the surgery done regardless of what the NL thought. I think the hardest part of this is that afterward it is hard to find a NL for followup who is helpful. That's why I thank my lucky stars that my NS is willing to see me anytime there is an issue...so that may be one major bit of criteria you may want to have when you pick a NS.
As for the headaches...I was similar in that respect too. I had daily headaches but when asked what my worst symptom was I would have said my gait...which is not as likely to have with Chiari. I wonder sometimes if I had mentioned the headaches sooner or emphasized them more, if I would have got to a dx faster. To tell you the truth, you and I are not the first ones who have said this about the headaches which proves that they really should adjust the criteria!!

Your right it does take time....just keep on fighting, you WILL get there:)

*Stormy*

[niki3350]

I cant believe how similar we are in symptoms and the fight we have had.  3 years its no joke at all Honey.

My head pain is intensifying and I am experiencing the odd arm pains but honey I almost feel too scared now to mention them as I really dont want them to think oh joy here we go, we tell her to watch out for and hey next time she's back oh look she is getting these symptoms.  Im petrified off them blaming all this on this somatization disorder, when its taken this long to get to where I am now.

I cant do another 3 years of this my family are suffering our finances are suffering there has to be a point where it just stops.

I think there really needs to be some major input from somewhere to all hospitals on the truth about cm.  

Hugs
Niki x x

[*Stormy*]

I know exactly how you feel, I felt the same...I was scared to bring up new symptoms up to my NL b/c I already could sense the way he was going. But the other half of me was like, if I don't and it was something major in getting a dx, then would I regret it? My final decision was to write a letter to my NL telling him that I have a huge list of symptoms that needed to be recognized and that I would appreciate it if he would take a look at them as a whole. Then I basically listed off everything that had been happening to me and dropped the letter off at his office. I gave me an advantage b/c he knew I had a record now of it and I couldn't be ignored.
It took me a year to get over the humiliation and the feeling of worrying that I wouldn't be believed and just to TRUST a Dr again in general. I was able to do it b/c I was finally validated by my NS and had met some other great specialists too. The ones that I saw that weren't so great, I just separated myself from and went with the ones who were. That is why I recommend you go with the NS.... you need someone who's on your side of this XX

*Stormy*

[dkdean]

I am not a 'what if' or 'why me' person and am not asking those questions now...but, there are certainly times I wish that NL's understood this or specialized in it as much as they do for MS, etc and that there was more understanding of CM by the greater majority.  I can't imagine how different this journey would be if I weren't the advocate I am for myself and quite vocal about CM.