Hi new here

After 3 mri's of my brain over time, I finally grabbed a hold of my most recent mri before seeing the neurologist and found out I had Chiari. This was a big shocker but I thought maybe it was a mistake. I was always told I had large tousils so it must be that. I expected the neurologist to tell me what was going on with the chiari. If I really had it and what to do about it. Instead he told me the pitutary tumor was the same size. End of discussion. Fortunately I didn't let it end there and he told me I do have Chiari but he didn't think my dizzy spells had anything to do with it. If I knew then what I knew now I would have told him about the history of chronic vomiting that had no gi explanation to this day as well as a few other symptoms that I dismissed as being not atheletic. He sent me to the ENT doctor who ruled out my ears but didn't understand why I hadn't had my tumor removed. Till this day I still don't know why it hasn't been removed. He surprised me when I received a referral for a neurosurgeon. The neurosurgeon had a better questioner about my symptoms but didn't realize I was diagnosed with it. He did the mri of the cervical to see if I have the sphinx. Next thing I know the doctor is saying I need surgery period. Lucky for me his office has the guy who specializing in this disorder. So he referred me to him. While all of this insanity is going on I had my appointment with a different Neurologist to hopefully find another treatment besides surgery because I knew based on what I read it was inevitable considering none of my symptoms are treatable and I was losing massive strength in both hands and only one hand had an mri explanation (Kienbock's disease). To this day I still don't think it is a coincidence that I have two birth defeats one being in the bone of my wrists and the other in the brain. My neurologist didn't think my symptoms were at all related to the chiari and suggested that the cds be seen first before any surgery be thought to be done. I was absolutely pissed at her. I just convinced my parents that surgery was inevitable according to the neurosurgeon and she destroyed it by dismissing my symptoms and she was the UCLA doctor. Let's just say I still am looking for a neurologist is the result of that visit. My new neurosurgeon who specializes in chiari one surprised me when he knew what Kienbock's disease's medical terminology was and he believed that it was not a coincidence that I had both either. Problem is he never had a patient with both besides me. Then he decided to try something new. It ended up that I went two hours away to see about other treatments when the person with the other treatment was in my backyard. He wanted to try traction first. He said if I had saw him three months ago he would have said surgery no if ands or buts about it. I have been on the traction 1 hour a day for 15 days and so far it's not working. I'm still dizzy and I can't even pick up the water bag that weighs 4 pounds with either hand. Meanwhile he thinks I have tethered cord syndrome and did an mri again of the lumbar with t-axels this time. I'll know the results on monday. I have been having trouble finding out about the tethered cord surgery other than the chances of it reducing the symptoms is greater the sooner it is diagnosed and operated on. I want to know how long will I be in the hospital. If they say outpatient I will not let it happen I have bad history with outpatient procedures. Anyone know?

[selmaS]

  HI and welcome to the Chiari forum.

First off, surgeries for chiari or tethered cord* are both major surgeries and neither can be outpatient....

And to determine TC* u will need to undergo a few other tests such as a uriodynamics test to see how ur bladder functions or dose not function.....

  TC* most of the time does not show up on a MRI, so it is thru testing this is dx'd.

  And to rule out a syrinx also known as Syringomyelia...u need to have MRI's of the cervical , thoracic and lumbar spine as a syrinx can form in all these areas of the spine,

   Make sure the drs u see r true chiari specialists...we do have a list of drs for u to use to help u research Drs as well as info that u may find helpful....scroll to the bottom of this page to the link for the Health Pages.

  "selma"

[nsalem656]

The mri of my cervical spine showed hydromylia which I found out is another way of saying sphinx which is why my neurosurgeon wanted to have me have surgery. I'm so glad it's not outpatient. I'd find a way to make it inpatient if I had to.

Thanks for the info on the tests. If the mri is negative I'll ask him about that tests which is probable because my copy of the mri report had nothing on the t-axels even though it was done and the rest of the mri was normal.

I just hope all my symptoms are related. I hate to go through this to find out the neurologist at ucla was right.

By the way, I had massive weight gain with no explanation and massive women part growth in high school that ended with me having reduction surgery and still never found out the cause. Is that symptoms?

[selmaS]

  Well, there is a difference as to hydromyelia and syringomyelia...some define a syrinx, syringomyelia as a cyst like cavity on the outside of the spine...whereas hydromyelia occurs within the spinal cord...sometimes with slits that expand it....instead of the tubual cysts with syringomyelia.

Make sure u find a true specialist in this field.

Many with chiari have issues with autoimmue disorders, one being Hashimoto's Thyroiditis, this could have something to do with weight gain, and there are some that have issues of compression of the pituitary gland which can have affects on hormones and growth....do have u Dr check all of these.

[nsalem656]

All I know for sure is this guy does seem to be a specialist. The first neurosurgeon told me he was a specialist in this field. Ironically he's main office is in Mississippi. I live in Bakersfield, so when I heard he only comes one day a week I went looking for his main office. The information says he has an office in Mississippi and bakersfield and one other city in california. I'm trying to see if I can get checked out by the chiari institute in New york but my insurance is the state and county which were my only choices when the private insurances said you only qualify for high premium and high deductible insurance because you actually need insurance and if you have medi-caid (in california medi-cal) you don't qualify at all. All because I told the truth. Unfortunately that means less likely to be able to go to the new york one. The only thing left in my application though is the cd's and mri reports and I don't know how to get the cds. Anyone know how?

I do have a pituitary tumor but the doctors have been saying it has nothing to do with my weight. They keep testing my thyroid but it's always negative. I still don't think it's a coincidence that my dizzy spells vomiting and balance issues started at the exact same time as the weight gain though.

[selmaS]

  I also had normal thyroid testing, and that was bcuz they were only looking at the aTSH, to look at an auto immune thyroid issue they have to look at the Free T3 and Free T4, TPO antibodies and TSH...otherwise it can appear "normal"

To get the CD's of ur MRI's go to the facility that sis the studies and request them along with the reports tell them u r going for another opinion..and going forward, when u sign in for testing request copies of all CD's and reports for urself.

   "selma"

[nsalem656]

Thanks. The Free T3 and T4 were done but not the tpo antibodies. I'll ask one of my dozen doctors (just kidding only nine). Ironically I actually was hoping I wouldn't have to keep seeing the neurologists and see the ent doctor only until I got the mri report. What I still don't get is why no one told me I had cm. It's 7 cm according to the mri and the specialist even said that not all the patients are as obvious as mine. Weirdly enough my fav. primary's office ordered the first mri. Even though he is known for thoroughness and he proved it the first time I came to him with wrist pain, he still didn't tell me and he didn't tell me about the tumor either. The tumor was told to me when my period disappeared and my prolactin levels were high but no mention of the chiari again and this time I know for sure it was on the mri. The last time no mention of the chiari again even though I came to the neurologist for severe dizzy spells. Anyone experience that kind of crazy doctors?

Thanks for

[selmaS]

  Many Drs feel it is an incidental finding....some feel that as we age it is normal for gravity to pull the tonsils down....as I stated, this is all old info that is taught in med school....until what is taught in med school concerning this condition this may not change, and we have Drs out there that will not be going back for the updated info....this is y a specialist is the best place to seek help.

The other way u can test for Hashimoto's thyroiditis, the autoimmune thyroid condition , is to have a ultra sound of ur thyroid if u have nodules or goiters u have it, it cycles, so it is also possible when u go in for testing that ur numbers r where they should be....

  

[nsalem656]

You are great. Thanks for all the information. I just wish that I think this will end with at least one surgery.

As for the tethered cord syndrome. I have both types of incontinence problems both started after the two colonscopies. Ironically I don't have back pain or knee pain. My knees on the other hand have bad refluxes. My left is wobbly during the hammer test and the right didn't move at all. I need function in my knees because my hands can't replace them by using a manual wheelchair. I'd be stuck in an electric even if I just couldn't bear weight on one leg.

[selmaS]

  I share many of the same issues, so I know what u mean....I have used a cane since the yr 2000...have TC, EDS, CM,disk issues...it takes time to sort them out and find the right Drs....

  and wishing one surgery would be the end of it all would be wonderful, but surgery is not a fix or a cure, so I know it is possible to have more in the future....

[nsalem656]

Any advice on how to avoid ending up using a cane or electric wheelchair in my case. I was hoping to avoid all surgeries and now I'm facing minumum of two because that traction is hurting more than helping. For some reason my actual neck pain that I only started having this year went away but the bottom of my head actually hurts and I thought it was neck pain.

[selmaS]

  There is no way to know if u can avoid surgery until u have all the testing done....if u have a CSF obstruction and do not have surgery, it can and will continue to get worse....and that will lend u up in a wheel chair...the obstruction leads to the formation of a syrinx, once u have a syrinx, it can grow slowly or rapidly and when it grows it can impede the nerves causing perm damage even paralysis....so, get the testing done and  get several opinions from well experienced drs.....

The neck pain that went away could be a few reasons that happened...chiari symptoms cycle....that is one reason, another is if the nerve is pinched and not carrying the signals of pain to ur brain, then u will not feel it....so, not feeling pain is not always a good sign.


  Get a full check up

[nsalem656]

What do I do about the hydromylia if the tests are negative. THe doctors are saying I need the decompression surgery if the traction doesn't work because of the hyrdomylia

[selmaS]

  Not sure if the Drs u r talking to are specialists for Chiari...u may want another opinion.....

  Many times decompression surgery is done when there is a syrinx, restoring CSF flow helps the syrinx shrink, this does not always work, but is the best option most times.....

   But, u should get a few opinions b4 u make a decision to have surgery or to wait.....

    "selma"

[nsalem656]

That gives me hope. But i'll tell you this, treating the symptoms has never worked for me and I have had this problem for 19 years minumum. I'm 33 the symptoms started when i was 14.

[selmaS]

  I have had symptoms my whole life too....u can not medicate it, and this is Y I say get a complete check up and find out how it is affecting ur overall health....

  Surgery is not a cure either, just a means to slow progression and restore CSF flow...for many it gives them the ability to do so much more and to be pain free...for others it lessens the pain...and yet for others it can increase pain....there is no way to know.

   I understand what u r saying....I really do,

[nsalem656]

Sorry I didn't mean to sound defensive. I've been getting cranky too much lately. My family doesn't understand any of what's going on and are driving me insane. The real problem is I had to give up driving because the dizzy spells started showing up while driving. For some reason it wasn't happening before during driving but I got to admit I was a very slow driver who avoided changing lanes. My roommate is basically driving my car to get me to and from school and doctors appointments and anything else that comes up in exchange to letting her drive to school and drive to help her mom and she is driving me nuts. She comes late and doesn't answer the phone when I call. I was in the cold for 2 hours because she wouldn't wake up. It would be one thing if she was driving her own car and paying her own gas or at least part of the gas but I am paying the whole gas and insurance. I think it is right for me to get upset when she doesn't show up. Don't you.

I noticed that irritability was on the symptom questioner sent to me by the new york chiari institution. I never thought irritability would be a symptom.

[drewlevas]

I feel so much for you!

I'm early 30 too and a similar health background then you! I just find out last summer about Chiari and I have been on the rollercoaster of doctor that think they now about Chiari and now nothing. I have been asking for testing for the last few months having them look at me like I'm a crazy woman! But thanks to this forum, it's members and of course Selma I keep strong.

Ah yes by the way, I had the same thing happening to my woman part in highschool ending up in a reduction at age 18. But I don't have a pituary tumor.

[nsalem656]

I kind of curious I was extremely big and at a size most women consider having the surgery at. Can you email me how big you where if your not sure you want to post it. nadia.***@****

[selmaS]

  I did not take it that way so no worries...what I find interesting is I have 3 sisters and I am by far the one with the larger area of what we r speaking, and since surgery, I feel have gotten larger...lol...odd....I did gain some weight, but I am the largest I ever was....I find this all very interesting indeed.

[nsalem656]

Ok it didn't let me edit my post or post my email. I meant I'm currently at a size most women decide to have reduction surgery. Yet I had it already. Are you at that point is my question.

[nsalem656]

I know I shouldn't believe everything is related but it I grew fast when the other symptoms started too. How could it not be.

[selmaS]

  U can exchange e-mails in a PM(private message) but u can not post personal info on the public forum, it is for ur safety...it is an automatic correction.....

[nsalem656]

Thanks. How do you do private message? I'm new to the forums

[selmaS]

  Move ur cursor over the persons name (blue hyperlink) and a box will open to send a note or a message.....or add as a friend....if u click on the name it will take u to their profile page and u can send a message from there as well.

[nsalem656]

Thanks.

[drewlevas]

Well yes I'm back to a point where most women start thinking about getting them reduced! Interesting inded!

[nsalem656]

So it can't be the tumor if we were in the same position and you don't have the tumor. Are you sure you don't? My doctors didn't tell me about the tumor till the second mri.

[drewlevas]

Well no I'm not sure! But I'm having a third MRI soon, I'll make sure to ask then! But I asked my pcp if they had found anything else than my Chiari on my first MRI, and she sadi:
- No just very large brain tonsils. No aneurysm, no MS, and no tumors.

[nsalem656]

Grab your mri report as soon as you can. I can't remember how to spell it or what its called but it's not going to say literally pituatary tumor.

[drewlevas]

I'll ask her for the report and the images when I see her next.

[nsalem656]

Don't worry mine was benign and if they relate and you have it yours would be too. I think it is the same cause as the weight and other tumors caused by chiari because I had one other tumor removed from a different female private part.

[drewlevas]

I had one remove years back from my right B it was bening and I'm believed to have one in my left B. I need a new mammo in 6 months, it's believed to be bening too. In fact it's so small every thech wonders how I managed to feel it ;) .

[nsalem656]

Unfortunately the other tumor was not on the b. it was down south. But I do seem to have a lot of tumors. And tumors seem to be a symptom of chiari one.

[selmaS]

  The tumors may be a chiari related condition...have u been tested for Ehlers-Danlos?....it is more likely the culprit, but it is chiari related....and I would think that is more likely what is going on.....

[drewlevas]

It realy is part of Chiari!

Well if my mum as Chiari as I suspect it would explained the dozens of surgeries she had for tumors down south (like nsalem656 says) and other places! At least they where all bening.

[nsalem656]

The diagnosis of chiari was recent so I haven't had time to ask about Ehlers-dalos but I'll ask at my monday appointment.

[nsalem656]

It's definately related I've been to a few chiari websites and found that to be true but the cause maybe what Selma suggests. I don't know.  

[selmaS]

  It is possible she has EDS too?....what I have learned in researching it, that is more likely the issue for the tumors then Chiari by itself....

What I was told is u can have cysts and  hernias as a result.....and I think it should be considered as they are related conditions...and more with EDS have issues like this then those with just chiari and nothing additional....

JMHO

[drewlevas]

Thanks.

I will ask my doctor about EDS, because my NS didnt want to check me out for it! He seams to believe, it's just a skin condition and nothing realy serious. I wish I would have more money or insurance so I could go see a specialist. :(

[selmaS]

  DO look at the video links in the EDS group here on MH....I posted a few videos by a Dr that also has EDS...and she explains the different types and how it can affect u.....http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[nsalem656]

I wish the same thing. Even if we have the money for normal insurance the insurance industry makes sure we don't get real insurance. I'm on ssi because of the wrist. It took me 3 years and a lawyer to get it. Weirdly the expert witness was a neurosurgeon. I was more concerned with the fact that a neurosurgeon doesn't treat kienbock's looking back the neurosurgeon was more likely there because they knew I had chiari because of the first mri.

[linnielou232]

While reading your post and the other's I can't get my mind off your traction they have you doing.  I went to a NL before being informed of having Chairi and he had me do this traction and I also felt like my head was going to explode.  When going to the NS he told me NO WAY should you put that weight and stretch your neck.  I also noticed while reading that you have an appt. on Monday so please ask about this traction.  Reading every ones post and being a member here for about 2 yrs it is interesting on how many Dr's we have to deal with before getting answer's also how many of us have had our tyroids checked.  They checked mine 4 times before being dx'd.   Hope you find the answer's you need on Monday.  

[nsalem656]

The specialized NS was the one that suggested the traction. I wouldn't have let him do it if it wasn't for the fact that he said it was either that or surgery. And this was after the UCLA insanity. Saying the symptoms are not related is worse than saying you need surgery. My right hands strength loss most likely won't be undone because it was a combo problem muscle weakness from the chiari and grip strength loss from the KD and the KD post op can only get 50 % of the strength you loss using physical therapy. I had therapy for a month longer than the insurance (blue cross cobra through dad) and I still can't pick up five pounds. The left hand's only hope is to stop the strength loss because it will always be at risk of having KD and if I go to physical or occupational therapy I'll end up in stage 4 when I'm done. My symptoms need to stop before what little functionality I have left is completely gone.

[linnielou232]

I wish the best for you.  I'm not familiar with KD, but with therapy they couldn't give you exercises for strengthing?  Your in my Chairian prayer's and asking that you get some stenght back.  Best of luck.
Linda :)

[nsalem656]

Unfornately Kienbock's Disease(kd) only lets you post operatively get back 50 percent of what you lost due to KD. I'm in stage two of KD which means I should still have lots of strength left and need some to gain back. The fact that I still can't carry much one month longer than OT (occupational therapy), means I didn't have much strength to begin with. What CM1 didn't do KD did so I can't get enough to function back.