Venting.. sorry!!

[hdavids]

just a little update from me, haven't been very active here for a while as I am trying to com to terms with this dx and the frustration with my NS.  

Finally after an almost 4 months wait my NS contacted me via e-mail!  I have been trying to get an appointment with him since I got back from TCI last March without any luck, The doc´s at TCI wanted me to try Diamox as soon as I got home and give them a report on how things were going in a months time and they also wanted to see me again after 6 months.. well 2 months now. In the email he only talked about TCS not CM or SM and that TCS is an unconventional and not supported with in the medical practice... I got the impression on that e-mail that he was talking to a little girl and I was getting my noes into what I didn't understand.... that got me so angry.. I guess most of us suffering from this knows at least the basics b/c we have to do our own researches just to get info on what is happening...    

So now he is referring me to a NL that he thinks knows cm/sm and tcs more than he does ( well he didn't admit that he doesn't know ) I called the NL yesterday and got an appointment tomorrow.. thank god, I heard that this NL is wonderful and really tries everything to help and does not let people wait. I am just so frustrated that if my NS was going to referring me to another doc, why did he make me wait for almost 4 months in this kind of pain all he had to do was to rx the Diamox and let my PCP do follow ups on blood test and stuff., he didn't even have ( or wanted ) my dx paper from TCI.  I would like to know how he (my NS) would go through a day like mine in this much pain.. I bet he wouldn't let himself wait a minute, right!!!  

But I am exited for tomorrow! I really really hope that this Dr knows what he is talking about. So fingers crossed :)

Sorry! I just needed to vent a bit!!  I am having a hard time understanding  Dr´s at the moment

Hope all of you are having a pain free day :)
Hdav

[selmaS]

  I am so sorry u had to deal with this...it seems to be a must with chiarians, if u have chiari u will get the Royal run around...I want to know Y????

Goodness and the dang depression and anxiety meds they want to use as band aids on us bcuz their egos will not allow them to say I do not know, u need some one else...ugh!

  Dr B was always good at e-mailing me back as well...I am glad u got a response back from him and feel comfortable with him and what he is telling u....that is what we all need from our Drs...and they all may not be Dr B, but they should all make us feel like he made u feel : )

   "selma"

[hdavids]

Yeah I was so frustrated when I realized the turn that this Dr. visit had taken. I couldn't help it I started to think about all the other stories that I had read here and I just got overwhelmed I guess :) I dont understand why this has to be such a problem.

God, that NL is just rude, does he still think that he is depressed and stressed even after seeing two shrinks?? wow that is just so not right..
I hope your son gets the help he needs and the Dr´s. he needs.

I´ll keep you guys in my prayers  

[jacmurphy]

HI.
I'm sorry you had that experience with the NL. And i know exactly how you feel. Last time I saw a doctor with my son I cried. But it's crying with frustration!! Our NL has done his best to try and convince my son that he is depressed and stressed. He has referred him to 2 shrinks who both have said that my son's problems are Neurogical and the NL insists that it is stress and tension and depression.
God.. when I think of the way he talks to my son! He says to him... you're stressed.. aren't you? My son grins and says NO!. The NL says... you are son.. you might not know it yet.. but you are. (What the!!!)
Praying that we all find and NL and a NS who know what they are talking about.
Jackie.

[hdavids]

Well my appointment didn't go so well, I took my dad with me and God am I glad I did!!

the NL said that he thinks I do not have Chiari, he says that the radiologist who saw my scans here in Iceland couldn't see any blockage or diminished flow of CSF and my tonsils go only 1 mm down.  He also said that TCS is not a problem, again after reading the radiologist report.  The only thing he says, is that I do indeed have a syrinx and that is causing my bladder problems and numbness in my left leg, he completely disregarded my other symptoms . He said that my headache is a tension headache even if I have no tension in my shoulders or the back of my head, he is going to send me to physical therapy and wanted me to start taking anti depressant drug witch I refused LOL I am so far from being depressed. He is also looking into intracranial hypotension to explain my headache but thinks that is a long shot.
As for now he will not let my try Diamox and I dont know if he will.
Even that they at TCI are specialists and he is NOT, he didn't want to believe my report..
oh one more thing... HE COULD NOT PRONOUNCE CHIARI RIGHT!!!!  keep saying shiarri.

I am not giving up by a long shot.. but that was a hell of a setback, I couldn't help it I started crying in his office and that is why he offered me the anti depressant LOL Geees why cant they admit that someone might know better then them and we are worn out not depressed? stupid!

I am so confused, I did contact Dr. B via email and he answered me within 2 hours.  I had to wait 4 months for my Dr´s reply and Dr. B 2 hours!!  He reassured me that this dx is the right one and my NL is using the old definition of Chiari and about my CSF blockage  they had way more experience then my local Dr´s and it is deff there.

So bottom line:  I believe that TCI has my answer and I am ready to put on my boxing gloves and fight this old school definition of Chiari in every way I can. Only I know how I feel and I will not be told that they dont know what to do... well learn then for god sake.

I guess I am starting my Royal Chiari Runaround :)

[selmaS]

  Sounds like a good plan to me : )

  Relax and I am sending u good vibes~~~~ and prayers for a good visit .

    "selma"

[hdavids]

I will let you know tomorrow how this goes :)  I am so nervous that I wont remember everything that I want to ask so I am thinking about taking my dad with me LOL :D

[selmaS]

  Hi...I am so glad u got an appointment with someone who u feel will listen....yea....

Please let us know how it goes tomorrow....]

  It is sad that Drs allow their egos to make us wait and suffer like they do and u r soooooo right they would not wait one minute in this pain we deal with.

  Karalee..TCS = Tethered cord syndrome.Many Drs here and abroad do not believe in untethering the cord...the issue is it can and most times will re-tether from scar tissue.

So the whole issue of the cord being an issue from the get go is controversial....many NS's have been under the microscope as a result of doing the surgeries...mine was put off as a result, but it was also a good call at the same time.

There r a few diff methods  as to how they approach un tether the cord.....

  Hope that helps

  "selma"

  

[hdavids]

No problem :)

It is a good idea just to get second opinion from them, as far as I know they are not knife happy and you always have to make the choice if they offer surgery.
oh no are you loosing your hearing possible b/c of the Chiari? I am so sorry to hear that :/

Good luck with your appointment with the Neuro-otologist, I´ll keep you in my priers :)  

[actressmouse]

Thanks for the feedback.  I'm going ahead with re-sending everything.  I'm just a bit apprehensive given some of the negative press that TCI has had and I don't want to be worse off after an intervention than I am now.  I am proceeding on to a Neuro-otologist this next week to see if the hearing loss can be isolated away from the Chiari.  Wish me luck!

[hdavids]

Karalee85: my NS says that, I have no Idea why, he has never answered any of my questions., my guess is that he is not well informed on that condition and is still stuck in the old ways, I know tcs surgery have helped a lot of people but on the other hand I think I did offend him when I looked for help outside the Island.  The Dr´s at TCI want to do a tcs surgery if the meds and decompression surgery do not work.

actressmouse: Yes I was there in Mach this year, my experience with them is all good, they were just wonderful and so helpful. as I come from Europe they did everything to lower my cost of seeing them. I was able to have all the test they needed here in Iceland and send them over before my appointment, so the only cost was actually just to see Dr, Bolognese and Dr. Kula, I would highly recommend The Chiari institute with anyone :)
My guess is that it has been over 6 months since you send them you stuff that they dont keep it. scans older than 6 months are considered old and they always ask for new ones. but other than that I dont know why they dont have it anymore,  

English is my second language so I am sorry If I am misunderstanding your questions :)

[actressmouse]

Hi -- were you seen and treated at TCI?  I was "approved" to be seen last January, but decided to go another route...I just recently decided to pursue TCI again; however, they are now saying they can't find any of my paperwork/scan disk, so I need to send everything again.  How did they know I was previously "approved"?  I'd love to know your experience with them before I proceed. Thanks!!

[karalee85]

what do you mean TCS in unconventional and not supported within the med practice ?? -maybe im dense enough to need TCS spelled out for me?? - LOL thanks

KARA