Chiari Malformation Community
Why can't any of my doctors help me????
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Why can't any of my doctors help me????

I found out I had a Chiari malformation in 2001.  Suddenly my entire life made sense.  I never knew that there was anything different about me, I just always wondered why other people could do things without getting severe headaches, dizziness, or blacking out.  I would watch people dance and jerk their heads around and my head would start hurting just watching them.  Getting that diagnosis was a relief.  It really didn't change my life at all because I had adapted myself to all of the symptoms and knew what to avoid.

However, I had lung surgery in 2005.  Within two months I was diagnosed with Hashimoto's thyroiditis and then my entire life began to unravel.  Since 2005 I have seen doctor after doctor after doctor and, even though some are willing, not one is able to help me. I saw in some discussions here that a few of you have had the exact same symptoms as I have had since 2005.  I am to the point that if another doctor says "I want to help you, but there's nothing I can do", well I don't know what I'll do.  
.
My major complaints are:  My body temperature cannot be regulated.  Some days my temperature is 96.2 and the next day it is 101.  My blood pressure has always been normal.  Suddenly it is too high.  I cannot exert myself or engage in any activity without my head and face becoming drenched.  Then I start shaking.  Sometimes it takes up to 45 minutes for it to stop.  While my head is being soaked with sweat, the rest of my body is freezing.  My potassium level has dropped dangerously low and my Vitamin D level is also too low.  I have difficulty swallowing, especially potatoes (any kind).  I have no appetite, but can't lose weight.  My sleep is the absolute worst symptom of all.  I CANNOT wake up.  I was finally given Provigil again, after years of insurance denial, and that helps a little bit.  I now have sleep apnea also.  

I know that something happened during my lung surgery in 2005 and I believe it was the position of my head during the surgery.  The anesthesiologist looked at my MRI prior to the surgery to see if the Chiari would be a problem.  He thought I would be fine.  I think that because of the Chiari too much pressure was put on the pituitary gland and/or hypothalamus and caused some kind of disruption in their function. How do I find out if this happened?  There are so many other symptoms also, but I have discussed the ones I can think of now.  Oh yes, my memory is also a problem, and finding words in my brain that should be so easy becomes impossible.  I have had numerous blood tests, X-rays, MRI's, CT scans, echocardiograms, nerve block, video swallow, bone densities, and psychiatric evaluations.  Every time I see my endocrinologist, I am told to to talk to my psychiatrist or neurologist.  This is definitely an endocrine problem.  Are there any doctors who can put all of these pieces together to get a diagnosis?  I want to go on "Mystery Diagnosis", but you need a diagnosis for that.  Please, can anyone help me?
Related Discussions
8 Comments Post a Comment
Blank
620923_tn?1405964489

HI and welcome to the Chiari forum.

  Ur first paragraph sounds like I could have written it.....and teh same as ur question, as to y  ur drs can not help...the problem is u have not gotten to the right ones yet....u need a true chiari specialist.

Sounds like u may also have POTS....

Many with Chiari, and related conditions like Ehlers-Danlos Syndrome do have issues with vitamin absorption....u need to take supplements and since ur potassium is low as well as ur Vit D, u most likely need magnesium too!

Look into B12 as well.....

We have a list of Drs that members here have been to liked and added to the list, the list is not a referral u still have to research the drs...but use the list to help get started on the research.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  This can be a bumpy ride, educate urself as much as u can on Chiari and know what the Dr should be looking for and this will help u locate the best one for u.

    "selma"
Blank
Avatar_f_tn
Selma, thanks for your reply.  I have had magnesium and B12 levels checked along with so many others.....always within normal limits.  I will check out the link you attached.  Thank you so much for your advice.
Blank
620923_tn?1405964489

  The one magnesium level that is important they do not check as it is a costly test to run...so if u take meds for GERD or are low in Vit D and levels do not seem to stay where they should with supplements, that is an indication that ur magnesium levels may also be low.....

Look at symptoms of low magnesium levels, I think u may be surprised as to how it can affect us.

Keep us posted as to what u find out or if u have more questions : )
Blank
596605_tn?1369950227
Hi Lauren526-
I am not a Chiari patient but I have skull malformations, ongoing pituitary issues and on and off csf leaks. Anyways I wanted to suggest that you see a neuroendocrinologist for a complete workup of your hypothalamic/pituitary axis. The temperature issues, thyroid etc might be able to be better treated and help you to feel better with the hormonal stuff. You might even need to be tested for growth hormone deficincy which can cause major probs with quality of life, fat distribution and so much more. Generally they are at large university medical center that have a pituitary program. Not just any endo will do, you need a specialist. Looks for ones that work with pituitary patients.
i hope that you feel better soon.
Horselip
Blank
620923_tn?1405964489
Symptoms of low magnesium levels :

Neurological:

Behavioral disturbances
Irritability and anxiety
Lethargy
Impaired memory and cognitive function
Anorexia or loss of appetite
Nausea and vomiting
Seizures

Muscular:

Weakness
Muscle spasms (tetany)
Tics
Muscle cramps
Hyperactive reflexes
Impaired muscle coordination (ataxia)
Tremors
Involuntary eye movements and vertigo
Difficulty swallowing

Metabolic:

Increased intracellular calcium
Hyperglycemia
Calcium deficiency
Potassium deficiency

Cardiovascular:

Irregular or rapid heartbeat
Coronary spasms
Blank
Avatar_f_tn
Horselip, thanks for your suggestions. It makes sense that a  neuroendocrinologist is who I should see.  Finding one will be my next step.  I appreciate your help as well as Selma's.  It is very frustrating to know that I have a real problem and my doctors do some tests and then give up.  I am not going to give up.  I will keep you both posted.  Thanks.
Blank
1306714_tn?1327260680
Welcome, and welcome to the Chairian journey.  It is very fustrating where you are at right now.  Most of us went through the same thing.  Seem's like you have a good attitude toward's it.  Just keep being perisistant and find a true Chairian specialist.  I also suggest you get a copy of all your report's MRI, CT. and start making a list of question's u want to ask the Dr. so when you do have the appt you won't forget to ask them.  I also highly suggest have a health partner there with you.  MY DD and DH were mine and they told the NS issues I was having and I didn't even realize it.  Hope this help's some what.  Also alway's remember we are here on the forum for you and your not a lone.  It's hard for us to deal with this let alone having a Dr. that just send's you on your way with no answer's.  Best of luck
Blank
Avatar_f_tn
All I can say is most of what you wrote sounds as if I wrote it.  You will hear that a lot from people here.  We all went through the same process often getting dismissed as needing a psychiatrist.  Some of us are still trying to figure out what direction to take.  You'll get a lot of help/info from this community.  Hope you feel better and get answers soon.
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
Avatar_f_tn
Blank
bekah0656 joined this community
Welcome them!
10 hrs ago
620923_tn?1405964489
Blank
soccero, and selmaS commented on soccero's status
14 hrs ago
Avatar_f_tn
Blank
lizfal commented on When Your Cold Is Not...
Jul 26
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH
Chiari Malformation Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH