Maybe im not asking the right questions?

[rrcross]

I have alot of questions right now. I do have Chiari 1, and i am like most feeling very frustrated with these nagging symptoms. I am 45 and have known most of my life that something was wrong with my head but Doctors insisted on telling my folks just migraines. I remember my head hurting so bad as a kid that i bumped my head on my arm to go be able to go to sleep. I ve been able to manage my life with headaches and raising my kids alone, it wasnt always easy, sometimes late for work, or long lunches,  I even remember hiding in the bathroom waiting on these funky feeling to go away. I was diagnosed w chiari 1, 4 years ago while being treated in the ER for another migraine. I was told no big deal basically, given another shot of pain meds and sent home. over the years occasionally I would see spots, feel my hand, foot ,start to go numb, my face would begin to draw and i would talk out of the side of my head. i was told migraines. Im now 45 , having extreme neck and spine pain, numbness and tingling 50% -80% of the day even in my sleep,i have to now lift my head  I up manually to turn it at night while i try to sleep or get comfortable. Sometimes I forget where im going or what I was going to do next. i feel very weak, and a strang locking sensation in my joints, I sometimes forget what i was going to say and cant remember the correct words . My EEG came back and the showed  these spells i am having are seizures. . To think just last August i dug a pond...Im a very hard worker. it's so wrong, im losing my strength.  I have seen 3 nuerologist now and one nuerosurgeon. My Daughter, Mom, Husband, and Sister went with me to the nuerosureon appt, He was oh..not very sympathetic of any aches and pains, when i asked him about the Chiari malformation, he said, "well some people live with this forever, and i dont think surgery would help your symtoms." Just another doctor shouting out migraines oh and now maybe artheritis.. he uped my dose of topamax to 50 mg morning and night. II feel like my family thinks i am a hypercondriac, over lunch after my appt my Mother said, 'maybe u r going thru menipause"..lol, my daughter 23, very intelligent, said, " Mom, ur not gonna be happy until they tell you what you want to hear".  I really dont know what that means, i just want some kind of answers. And my stupid husband said, "well ,she doesnt alway take her medicine".  He doesn't even know what i take, only that its suppose to fix whats wrong. In case you cant tell my support group is lacking right now, I cant get anyones attention.   My 17 yr old son is just on me to get a job, he thinks im not trying hard enough, and heres me complain , alot of my aches and pains. I lost a really good  job last yr do to the economy, was a Sales Manager at a Distr. Ctr.  and i am in a catch 22 situation right now with health insurance , I have to have this state insurance. But honestly, cant imagine trying to work feeling the way i do. I am trying to get well, so i will be good for everyone, including myself. I am going for a test on Wens that measures the fluid, I here this is important and have anther Doctors appt on March 3rd at St. Vincents Hospital w  Nuerosurgeon Dr. Raymon Young. Like most i have read about on this forum I have had the run around, ENT Dr, Eye Dr.s.  I am trying to keep my chin up but it is getting harder each day, I dont want to be a pain in the butt to my family, and im starting to feel like a contsant complainer..I just hurt..any suggestions will be grately appreciated. I wish all those not feeling well a hopeful and happy day!

[selmaS]

  Hi and welcome to the Chiari forum.

  It is a very bumpy road, and u r not alone.....

Once u find a dr well informed on chiari, make sure they r also well experienced  as well....u need both a NS and a NL as u will need post op care as that is sorely lacking.....

Take ur DH with u to the dr visit once u get the chiari dx and u have a true chiari dr....they can help explain to ur DH just how this is affecting u....my DH went along and was a great support.....

In the meantime...pop on here as much as u can.....we will be ur support : )

   "selma"

[rrcross]

Thank You, We just have to stay positive and keep fighting for our health, nobody's going to do the dirty work for us, it looks like. Best of wishes.

Robin

[cazza1975]

Good luck robin
I wish you all the best
I too have started to get frustrated through
It all its. Scary at times too

[rrcross]

Thank you so much for this information and support, I am so happy to have found this place to begin to educate myself. Im sorry for anyone else that has to go thru all of this, but it sure helps to know that there are people who care and understand, It sounds like most know more than the Doctors  that ive seen, i think im on the right track, now. I do have the spine test on Wens. to check for blockage.

Robin

[pamk5]

Hello and welcome to our little family!  Well I say little but it seems the only rare about Chiari is the number of docs who know anything about it.  I have been through the run around too and it is to say the least very disappointing and frustrating.  The really sad thing about all this is we have to waste our time and money going to these docs, weeding them out, to find the ones who know anything about CM.  

As far as your family and support goes:  it will be hard until you get to a specialist who will validate your symptoms for you.  I would take your husband, daughter and whoever else you need to depend on to this appt.  Maybe have them read some post here that what you are going thru is the norm for CM patients.  We do have a list of Chiari specialist here in the forum that other members have used and liked.  This is a good place to start.  Read all you can and become an expert yourself.  That way when you hear things that arent correct from a doc you will know.  For example I was told that "once you have surgery you are cured".  We know that is not correct.  There is a huge difference between a NS who sees Chiari patients and a true specialist who devotes the majority of his practice to this condition and associated conditions.  Be aware you may have to travel to get to one.  

Also you will need to have additional test like a Cine Mri to see what degree of CSF blockage there is, if any.  Also an Mri of your entire spine to rule out a syrinx.  Try to hang in there and relax as stress makes our condition worse.  Keep pushing for your treatment.  

Again, welcome!  I hope you find the support and info here that you need.  

Pam  

[lilmiss1999]

I understand the frustration you feel everyday. I know that your family askes how your feeling and you dont even want to say because it is always the same reponce everyday. "I hurt"

I am sorry your family struggles with understanding. Even though my husband seems to emathize......he (or anyone that does not have this) will nver understand what we go through all the time. We suffer from pain that most people would not be able to tolerate. Our pain threshhold is high and some days even though we hurt an outsider would not even know. We do what we have to day by day.


Make sure you see a specialist and if you are lucky enough to find a DR that understands maybe they can talk to your family. maybe hearing from someone else that what your felling is validated will help.

I hope that helps. I know I had a lot more to say but as I type I forget what I was going to say next. lol

Hope you have a good day and this is a great place to get information and vent.

Jen