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847512 tn?1272567062

Newly Diagnosed with lots of questions

Hello. I am 26 years old. I have head headaches since I was 9 years old. Over the last 17 years I have sufered with headaches and was always looking for answers only to be brushed off and given Prescription after Prescription. At this Point I am tired of taking pills. I am scared to become dependent on them and do more damage than good. Ealier in March I had the most painfull headache ever in my life. I was in the emergency room and already had an MRI a few weeks before and hadn't heard from my normal doctor yet. The Er doctor said my MRI was normal and commented that my doctor said it was normal too. i got tired of it and refered myself to a neurologist who found my Chiari Stage 1 Malformation. The neurosurgeon I saw said it is 4mm but my symptoms are there and only getting worse. There was no mention of syrinx at all. The question I have is the neurosurgeon told me it is up to me to decide if I want the surgery . I am torn because I am scared to do the surgery with all the possible complications but also want the symptoms to go away or at least calm down. My main symptoms are dizziness, tingling in hands, muscle spasms in neck and leg. Pressure in my head and shoulder and mild to severe headaches. Any Advice would be great?
11 Responses
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679866 tn?1240005366
Hi there. I have just been reading your posts here. I have to say that I agree with Shane99 and I do believe in the surgery. I know they tell you that your chiari "probably" wont get worse - but it can. Mine was progressing and my symptoms - many of which I was told were related to stress and not the chiari - and now I am just over 4 weeks post op - these symptoms have been relieved. I have been told that I have had chiari all my life but it wasnt until late last year that it really started playing up to the point of doctors investigating so at 48 yrs of age and out of the blue it decided it was going to progress.
The main symptom I have noticed gone is difficutly swallowing, I have yet to heal enough to know how the headache will go as its still sore now but improving and i feel more steady and in a strange way and I'm not sure it this is in my mind or not but I feel like the "pressure" is gone - like there is lots of room in my head - its a wierd sensation. Personally I feel that chiari causes more symptoms than they like to attribute to it. I think doctors like to think that it only causes headaches but I'm not so sure about that.
I hope that you get your answers and find your way to a pain free life.
x Sue
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi...We are not sure how so many different conditions appear to be related to chiari.I know there are many with chiari with Hashimoto's, and other auto immune disorders.Most also have Gerd/acid reflux......

U may want to talk to Shane99 about the male issues.....

"selma"
Helpful - 0
Avatar universal
is tmj related to chiari? My massage therapist believes I have a mild case and it would be funny to chalk another defect up to chiari.

Pain in right testi too... strange
both shoulders have daily pain.. i believe from tendititus
sever neck pain
no headaches since surgery thank god
I had to have part of my intestines removed.
Slurring, bumping into walls, cant find words. Hip pain.
Inner knee pain
over all weakness
weak arms
deppression
and worst of all. the fear that it will get worse.

God speed.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi welll..
....it may be easier for me to say what I do not have than say what we have in common.
I do not have POTS- deviated septum-gum recession-droopy eyelids-palate is fine-no Z foot-had a repair to my right knee;torn miniscus-mitral valve and tricuspid valve regurgitation -mild pulmonary hypertension -Long,tortuous colon, with diverticulosis
rectocele -Eagle Syndrome-

I do have bladder issues not quite the same as urs...I have nodules on my thyroid and was told it is Hashimoto's thyroiditis.I also have cervical spinal stinosis.I was also told the raynauds was from the EDS.I also have constant bzzing or ringing ion my ears.

I have acid reflux from the hiatal hernia....and tremors in my hands prodominatly my right.
Helpful - 0
Avatar universal
I have been reading all the postings on this forum and decided that since I missed the Poll you ran in December, I would give you all my laundry list to throw into the "hopper".  Like you, Selma, I have been through the ringer with many doctors, many weird symptoms, and so here's the roster that includes the pieces of the puzzle so far discovered:

Chiari Malformation
Tethered Cord Syndrome
EDS Classic with some Vascular components
DDD (every disc from t12- coccyx is herniated, some with thecal, facet joint and forminal encroachment....none that are encroaching on the cord itself)
Cervical/Cranial instability
right sided migraines
Occipital/Basilar headaches that are debilitating and can nausea and sometimes projectile vomiting
TMJ
Pressure behind right eye
swallowing issues
multiple thyroid nodules (benign)...have not shown clear cut thyroid diagnosis
Eagle Syndrome (ossification of the left styloid process protruding into the throat and causing Glassopharyngeal Neuritis)
Hiatal Hernia
Pernicious Anemia (vitamin b12 deficiency caused by intrinsic factor)
Sinus Bradycardia
low blood pressure
low temperature
Reynaud's Syndrom
Long,tortuous colon, with diverticulosis
rectocele
cystocele (fallen bladder -- even after collagen sling inserted, still incontinence problems)
Uro-gynecologist is running a kidney ultrasound in a couple of weeks as she is worried that hyper-stretched bladder is causing backwash of urine up through ureter to kidney)
mitral valve and tricuspid valve regurgitation
mild pulmonary hypertension
Terrible aching and sometimes "electrical" pain in coccyx
numbness in frontal pelvic region
Ongoing pain in right side of groin
Shoulder and hip dislocations
torn ligaments and tendons in Right shoulder with SLAP tear
partially torn ACL in right knee, with erosion of tibial plateau
"Z foot" (metatarsal bones in feet are curling)
pain that runs from upper lumbar region, down into groin, down side of leg, side of knee and into foot
pins and needles in arms and legs
intermittent muscle spasms in different places of body on ongoing basis
twitching muscles
left side of face is slightly fallen
eyelids extremely droopy
unusually high palate
gum recession
joint hypermobility
deviated septum with sinus issues
forget what I am saying in middle of sentence, can't remember thoughts or numbers a lot of the time....thoughts seem to evaporate while waiting to respond during a conversation
osteoarthritis from jaws and ears to toes
fainting
POTS
Helpful - 0
555358 tn?1292532061
You mentioned a car accident. Head or neck trauma can cause Chiari to kick into high gear. The herniation can start growing rapidly. Keep an eye on it.

I thought it was interesting the way Selma said that she advocates ". . . looking at all possibilities first and then surgery." You'll notice she didn't say anything about not having the surgery ;). I'm a firm believer in the surgery. The operation doesn't cure Chiari, but it can help tremendously with symptoms.

Generally, all operations are up to the patient. The thing about Chiari surgery is, depending on each individual, the operation is only so helpful. There is no cure. The surgery can help, but it doesn't fix everything.

Also, rememberthat Chiari is considered a neurological disorder. Often other problems go hand in hand with it - selma mentioned several; syringomyelia, tethered cord, degenerative Disc Desease etc. These can lead to many of your symptoms.    
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Well....u said u had ur thyroid levels checked, but let me advise u that Hashimoto's is an autoimmune disorder of the thyroid and the reg thyroid labs appear normal.For hashi's u must have them look at ur TSH and FREE T 3 and FREE T 4 and if this is all normal then mayb, oh and also ut antibodies TPO.

May I ask have u had any IBS/bladder issues?
Helpful - 0
847512 tn?1272567062
Hi Selma,
I appreciate you taking the time on this. I had 19 tubes of blood taken from me from my primary care physician in February everything but my liver enzymes and iron levels were normal. My doctor at the same time of my MRI retested my liver enzymes and iron levels a few weeks later which came back normal. He originally thought I might have something up with my liver then ordered the MRI to test for MS once I told him my symptoms. I remember him saying "that sound neurological". Which apparently I don't have MS. My thyroids have been tested multiple times over the years and are normal. My Laundry list of symptoms are:

Minor to severe tension and migraine headaches- 1-3 times a week
Lower back,Leg, hip and ankle pain-Alternates between sides randomly
Heart palpitations
Shortness of breath
Dizziness
Minor to severe headaches in back lower portion of head
Vision disturbances- floaters and partial visual black outs but still concious
Sensitivity to light smell and sounds
I have always had minor impaired hearing since I was a kid.
Choking sensations
Muscles spasms in neck head hands legs and feet
Nausea from time to time
Extremely painful menstruations- My paps are all normal
Pressure in head and shoulders-Also constant shoulder tension
Head twitches
Arm and hand numbness, tingling, weakness
Problems with slurring speech and finding the right words
Forgetfulness but for some reason I can memorize numbers very well
Loss of balance-running into things feeling drunk lol
rndom light headedness and weekness
Always tired.

All of these are random but I experience at least a good chunk of them daily
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi Devin,
I believe that Dr Won was redkim's surgeon.We have a thread here with chiari specialists listed on it.....

Well all the drs will ask u when u r ready, bcuz if ur not it can impeed recovery.  Sometimes chiarians end up with emergency surgery and that can be scary.

The reason I asked about all the other MRI's is bcuz there r other conditions related to chiari that should be ruled out prior to having surgery.

To give an example...I was dx with chiari 6 mm Feb of '08.....the NS I saw first...said I did not have it and did not offer to do ne other testing other than for my cervical spinal stinosis.The second dr said I had it, but he could not do nething 4 me....no additional testing...10 mins of his time and I was dismissed.

Well I did research and found that I should be checked for  syringomyelia (syrinx) and tethered cord.Which I got my PCP to do.I also included a CINE MRI to check for a CSF blockage.

I found I have in addition to the chiari and cervical spinal stinosis and DDD, and scoliosis, tethered cord and ehler danlos syndrome and cervicalcranial instability.

Now, the TC will be addressed first to see if releaseing it will help retract the chiari and then I possibly will not need that decompression surgery.....So I am a big advocate of looking at all possibilities first and then surgery.

U should also have labs done to rule out a thyroid issue...I also have that choking feeling and I have Hashimoto's thyroiditis.

When u have a dr u r comfortable with u will know if u r ready.

Would u mine listing all ur symptoms .....and keep in mind...even if u r not sure if it is chiari related it may be related to one of the other conditions associated with chiari.

I hope this is helpful
"selma"

Helpful - 0
847512 tn?1272567062
Hi Selma,
I am dealing with Dr.Won at Kaiser in Fontana, Ca. I had whiplash in May 2008 from a car accident. Along with that to trigger this headache I mentioned in March of this year all I did was crack my neck by rotationg my head. I heard a pop and the headache hit instantly. Dr.Won said I probably just pinched or severly irritated one of my nerves. I don't recall him ever mentioning any of the cervical spine MRI thoracic spine or lumbar spine. The MRI I did have I was laying down in.I remember them scanning a lot of my mid section though? I circled that are in the worksheet before I got it done. SO is it possible it could be larger sitting up? More recently I have gotten a choking feeling that has not gone away like I have something in my throat. Dr.Won mentioned I have a classic case and symptoms of chiari and If I want the surgery he wont deny me. I have never heard of a Dr. leaving it up to a patient? Any Advice?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
HI Devin and welcome to the chiari forum.

The most important thing I can tell u is find a chiari specialist.Are u dealing with Kaiser being in CA?.....

Since ur herniation is 4 mm it is not a chiari 1.....most likely a chiari 0.
To get treatment  u would have a CSF blockage and additional symptoms.

May I ask if u had MRI's of ur cervical spine, thoracic spine, and lumbar spine??

Also may I ask if u had a recent trauma, fall...?

Try to relax, stress and anxiety will only make u feel worse. Read the welcome message at the top of the page and our Health Pages for more info.

If u have additional questions or if I missed one please ask again.

"selma"
Helpful - 0
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