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Avatar universal

so many questions ,to many answers.

Hello all I am Dana I am from ithaca ny and I am a 25 year old male. I was diagnosed chiari type 1 at birth but like then my hydrocephalus caused by the dandy walker syndrome...mentioned in detail in profile for those interested. Because of this, many of my symptoms were either shunt faliure or blamed on me not sleeping eating right or partying to much.  Basically people believed I wasnt trying heard enough or even faking symptoms to stay out of school. But even as my life becomes more relaxed now that im living with my stable girlfiend and  have a nice apartment I continue to notice more and more symptoms as years go on. I first notice non intercranial pressure symptoms about 4 months after my final shunt surgury in 04.  Ive always found ways to cope with symptoms with meds like adderall for fatigue and focus and saraquil for sleep. Adderall has always been an up and down battle  with finding a stable dose. Where most of my problems  lie is my misinterpretation of symptoms and  therefore the inadequate quick fixes I have found to maintain stable life  
( employment, social life, general health).
I am a scatterbrain so if I left any information needed to be clarified please dont hesitate to ask.

My big ?s
1) Is SSI a relistic thing to think of at my age , even partial or subsidized ssi? I ask cuz my mom is more into it than I and wants to know I can keep my head above water. No pun intended
1a) is a lawyer or legal assistence a good idea?

2)whatre some meds that have been reliable for more symptoms....for example..the adderall or stims help keep me active and ease trembling/ shakiness.  But after a couple months seem to cause anxiety/ paranoia. Last week I was put on welbutrin and waiting it out but I tend to use more caffine and energy boosters without the energy I get from add meds. And caffine tends to make many symptoms worse. But if I were to target more specific symptoms maybe id have better luck.

3) How common is it to see Dandy walker in the same patient as chiari since most of the research ive done only shows how different they are.

Though this is all new to me it seems that research  with chiari or  even hydro only really started around the time I was born (feb.23.1990)  or a handful of years sooner .so my neurosurgeons and specialists ive dealt with seem to be finding out info just as quickly as chiarians are. So as I play the waiting game with the chiari center I figurred id fill my time asking others like me for clarification
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620923 tn?1452915648
COMMUNITY LEADER

  Have you sent your MRI's to TCI in NY?

Having them review them will give you the best DX of what is going on....if you want to post them in your profile page so we can take a look....but I am not a medical professional and may not be able to say much about them..sometimes it is very clear to me on some MRI;s but depending on the slice I can not tell what is going on.....my Dr was good at showing me how to see it...but we all have different images.

Meds for me did nothing b4 surgery....and if you should be a surgical candidate in the future meds you are on now could lessen the ability of the med post op to be effective.....
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Avatar universal
Ps. My meds are perscribed by general practitioner who is trying his best but seems to be attacking symptoms the best he knows how.
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Avatar universal
I have found stability with my regamine but it worries me when I take the adderal( just recently switched to vyvance  due to less adverse side effects) and it  brings about the clogged feeling in my ears as well as louder than usual tinnitus. Like I said vyvance has far less adverse effects but tends to increase anxiety esp when I have groggy days. My appitie is better and it doesnt seem to overstimulate like the adderal. I just recently tried welbutrin but it didnt do anything to combat fatigue and left me feeling hazy.
And @ selma and Slowe...I just recently had an mri which saw pretty much the same as my ct in rochester which was signs of over drainage and slit ventrical syndrome with no evidence of chiari malformation. Every neuro surgeon who has actually been inside my head has mentioned or noted chiari and my symptoms support that notation. I was told by NYC chiari institute to submit the paperwork and let the professionals there examine the films. @ Slowelady, my current neurosurgeon, or at least the last neurosurgeon to operate  and knows my current hardware/ plumbing; is a pediatric neurosurgeon and just tells me to wait and see. I believe due to avg  age that symptoms become noticeable he is not very familiar with effects of chiari can have on daily life.

If either of you would like to see  the mri report id be glad to send it to you
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Avatar universal
For Meds I have had great success with Cambia for my headaches.... And I would suggest some life style changes for your other symptoms.... Be careful when dealing with a Neurologist it's been my experience that they don't understand Chiari and the meds that I have been given by the 5 Neurologists I saw made me have some wacky side effects.... Neurosurgeon is the way to go!
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I had a few Drs that saw me mention Dandy walker..not sure if it was some of my symptoms or their inexperience with Chiari.

It is very possible to have more then just Chiari be it a related or unrelated condition...we are all different in that we have different issues going on all at once .

Seeing a true Chiari specialist will be helpful to you...as for SSID it can be a very difficult journey....we do have a thread with tips to win....and yes an attorney is suggested.
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