My journey is just beginning, any suggestions for doctors, hospitals anything???

[HeatherD1975]

I have been dealing will ALL of the symptoms listed in the posts and in the poem by the Dr...I thought I was going crazy, NO ONE understands.  To be honest at times I've felt like I've had no options or will to live if it weren't for my kids.  I saw many doctors and gave up a few years ago but recently I was sent to a neurologist that did EMG's because the orthopedic doctor I was seeing initially thought that thought I may have carpal tunnel because of all of the numbness in the arms & hands.  His testing showed no carpal tunnel so he ordered an MRI of the neck maybe a pinched nerve and sent me to a neurologist. I didn't tell the neurologist of all the years of trying to find the cause numbness extending down arms into the hands in addition to head pressure, pain in my neck, memory loss/saying weird stuff, ringing in my ears, imbalanced, light headed, head pounding to the extent I feel as if I'll pass out if I bend over laugh or cough and sometimes when I sit my chest feels tight just below my bust. I also have a lump in my throat all of the time, I can feel every time I swallow.  I have panic attacks because I get so scared sometimes. After the test and seeing my MRI he said that I have low cerebellar tonsils and ordered and MRI and MRA I have done tomorrow.  I feel like this all happened for a reason...finally I may get help.  No official Chiari diagnosis yet, I see him for the results next week…I really feel like it is getting worse the pressure won’t stop!

[selmaS]

  I did post on that thread.....hope it is helpful to u.

Keep in mind, the report is the opinion of the radiologist, and not a chiari specialist, many do not read the report just the films.

  "selma"

[HeatherD1975]

I just posted my test results...if you have a second I would love your opinion.  I'm confused and you are so knowledgeable.

[selmaS]

   Hi...I am not CW, but to answer ur question- "will I ever be like b4"....it is like a crap shoot,,,but most likely not...chiari is life altering.

U may have layers of ur old self still there...but just not quite the same.

I went to NYC this past weekend...and there is a lot of walking to do...I can do so much and then ...I am done.

My DH paid one of those rickshaw  drivers to drive me up to FAO Swartz's toy store....this was from out side a theater ( we saw a great show- Catch me if u can)....ne way...I was thinking how he has to do this, but in remembering being in Atlantic City when my DD was about 3 yrs old (she's 26 now) and we were walking the boardwalk, and I had issues walking then and he paid to have one of the strolling   carriages take us back down the boardwalk...I had no idea about chiari back then....so it  is not the surgery that changed me, it was always dealing with these issues.....just not being aware of them.

SO, have I changed...not really...and yes...there r layers...and in some I have and in others not so much.

Find the right dr, that is key!!!

   "selma"

[HeatherD1975]

Thank you for the advice.  Tell me.....will I ever be like I was "before"?  Normal, will I ever know that again?  I cannot believe how it seems that my symptoms are becoming worse much more quickly than the past couple years.  To be honest I am terrified of surgery.

[ChiariWolf]

For what it's worth I'd say do your best to remember:

1.> You are not crazy! Your body is just going through some things that frankly it can't and you can't understand. Be patient with yourself.

2.> Don't blindly trust any Dr. There are some good ones out there but even the best seem a bit confused esspecially if you have CM and or related conditions. The Dr's seem to want to push meds at us right and left. No matter the temptation try to remember these meds are not always the best anwser and the Dr doesn't really know what is so keep your wit about you and try your best to think through all the data given you. Really you must weed out the gargabe and digest that which fits your situation.

3.> Family and close friends, they are more confused than you are. They don't understand why the doctors can't 'fix' you. So be patient with them. Love really does conquer all and those that Love you will come around. Remember just as this is hard on you it is very stressfull on them.

4.> Above all, remember this is not a time to trust the Dr to know what is best for you. Strange if not a scary thought... but if this is CM only your body can really tell you what is right or wrong for you. Therefore trust what your body is telling you.


Live one day at a time,
CW

[HeatherD1975]

Thanks so much for the support and information.  Just having those that can relate to what I am feeling is so reassuring.  I mean this is something that most Dr.'s have minimal knowledge about let alone friends and family.

I had my MRI and MRA done this morning...follow up on Wednesday.  I'll post what I find out and I welcome any information and suggestions.

Thanks Again!!

[selmaS]

  Hi and welcome to the Chiari forum.'

  I am going to post the link to our thread of Chiari drs...it is not meant as a referral, only a means to help u get started researching drs. The list is compiled of the members own drs that they liked...not all may be true chiari specialists....so u have to see a few to see which one is right for u.


Many of ur symptoms r in line with what a chiarian deals with,  low lying tonsils or a CSF blockage from a bulging disk will result in similar symptoms too...so it is best to get all the testing done, rule all the related conditions out...like tethered cord, syringomyelia, sleep apnea, ICP, ehlers-danlos......

Make sure u know about chiari so if u have ne dr say they can "fix" u, u will know to run the other way...there is no fix or cure, surgery is a means to slow progression and restore CSF flow......surgery is also only done when u have over all health issues as a result, and the benefits out weight the risks.


  "selma"

[lynnbrook177]

Hi Heather

I was also just diagnosed about a month ago.  I share all of the above symptoms as you, except the numbness has only occured when I am sleeping.  The thing that scares me the most is the lump in my throat.  I did have some anxiety and probably panic attacks as well (which is something I don't think I ever experienced before).  I think that doctors have a difficult time knowing if the lump in the throat is due to Chiari or anxiety, but I have yet to be seen by an actual Chiari specialist so hopefully the answers will come.  I have a large herniation of 18mm (the decent of the cerebellar tonsils). I see a Neurosurgeon June 14 so I will hopefully get answers regarding the throat issue. I just wanted to mention this to you because I think it would be good for us to compare doctors' advice on the throat issue. I wish you all the best and hope to hear from you after your doc visits.

Heather L

[pamk5]

Hello and welcome.  I just had decompression surgery on 4/20/2011.  All those symptoms you mention we can relate to.  This forum has been such a source of inspiration and support for me since my diagnosis last summer.  I hope it will be the same for you.  There is a list here in the forum of doctors other members have used and liked.  It will be very important for you to get to a Chiari specialist who focuses his practice on this disease.  Any NS can do a Chiari surgery but it is a very specific surgery that requires lots of experience.  The risk of complications is very high.... with a specialist those risk do lessen.  There are also other test that will need to be done, a chiari specialist will know what to do next.  Be aware that you may have to travel as most of us do.  

I am so glad you are getting the answers that you need.   Please keep us posted.  

Pam