Symptoms for 11 + years...help!

[DAWGS]

Let me make a long story as short as possible. 11 + years ago I battled vertigo, fullness in ear, imbalance. I was dx with inner ear problem - symptoms subsided after about 6 months. A year later I had the same symptoms - only this time tingling in hands and feet included...same story - symptoms lasted a few months - subsided...Then a couple years later slurred speech was added into the mix. To make a long story short I have seen probably 6 neurologist, 3 ENT's - an MS specialist who ruled out MS...I've had a vast array of MRI's (probably 10 +) and many other tests.

In September of 08 I had a spinal tap to rule out MS. Test came out negative. But was left with the worst headache of my life. I think it started out as a CSF leak but then caused a chiari headache. I say "caused" because I think I had chiari anyway. A chiari specialist from Seattle - Dr. Richard ellenbogen told me that prior to my spinal tap I had "tonsillar herniation" of just under 2mm...this of course was never noted in my MRI report - Gotta love radiologists - SIGH! So the headache goes away after about 4 months - then came back again about a year later...September of 09...Have had this headache on/off since then - stiff neck - pressure in back of head - sensitivity to light - nauseous at time...Also all the other original symptoms - come and go - imbalance, dizziness, ringing in ears, ear pressure, tingling in hands and feet...I've had 3 mri's this year - 1 said 5 mm tonsillar herniation - another also said 5 mm - then one I had in LA said 0 mm...Hello??? But I still have the headache and all the other symptoms - so confusing!

So to make a long story short here is my question LOL - With a 5 mm herniation - even with my symptoms - Dr. Ellenbogen whom I understand is a chiari expert and a leading phyiscian in the disorder says I am not surgical at this time. I had a CINE MRI done which he said showed very little blockage if any and therefore didn't think I was surgical as of now...Anyone know why he would say that with the longevity of symptoms and the 5 mm herniation? I really don't get it???

Should I seek out another opinion - I found 2 websites that both named him as 1 of the top 10 physicians in the United States on the matter...If I can't get anywhere with him - who can I get somewhere with...Understand I am not desperate for brain surgery (who the heck is LOL) But I refuse to live the next 10 years of my life like the last 10 years...Oh yeah PS - I am 32...Let me know any input, advice, ideas, anything...thanks for your time

[DAWGS]

Wow surgery this week...How are you feeling? is this your first surgery? Funny you mentioned Dr. oro as I contacted his office Friday and am sending him my records. I am a little hesitant with TCI...i've heard great things...then some horrific things also. I would rather stick to a main hospital. Was Dr. Heffez covered by normal insurance? This is huge to me as I know TCI is not...I had a CINE MRI which read anterior flow was fine yet there was attuention on the posterior flow...Yet my neurosurgeon said it was quite close to normal and shouldn't be causing me symptoms...From looking at my mris myself it sure looks crowded back there is comparison to normal mri's i have found online...IDK? I just know i have all these symptoms for 11+ years finally I know what it is - yet now I am told just live with it...Ugh! Hopefully I will get somewhere soon! thanks - praying for your recovery!

[shanmomof3]

Hi DAWGS! I haven't been on this week because I had my chiari surgery monday. If I were in your shoes.... oh wait I harve been there lol.... I would send your records to 2 or 3 of the top in the country and then go from there.  Just from the reading I do and the people I have talked to those would be .... TCI, the Wisconsin Chiari Center (dr. Heffez), dr. Oro in Colorado, and dr. Di at the Cleveland Clinic in Ohio. There are lots of other very good Chiari specialtists these just seem to be the most popular or the names that come up when I talk to other Chiarians. (selma please correct me if I'm wrong)   Anyway, I sent all of my stuff off to 3 of these plus 2 others and then I did more research on each dr. while I was waiting to hear from them. I ended up choosing dr. Heffez and I am VERY pleased with my choice. Like I said surgery was this past monday; I'm actually still in the hospital but leaving as soon as they get my papers together ;-) Anyway just wanted you to know that my herniation 3mm and 4mm, but my csf was 80% blocked and once he got inside to do the surgery he said it was VERY small and extremely over-crowded in the back of my skull.  Feel free to ask any questions you have, just be patient with me ... I'm moving slow lol
Blessings ~ Shannon

[DAWGS]

Thanks for all your responses...I will try to contact TCI and see what they have to say. You all have been a great help!

[linnielou232]

Hi, I am also new to this forum and I have to say I have gotten a lot of answer's from every one.  Actually so much that I have decided to have the surgery done.  I am scheduled for the 10th of June.  I have lived with Chairi for 8 year's and for the past year I have progressed so much that my quality of life has changed.  I decided to have the surgery due to the fact that I have heard from so many the possiblities of permanet damage.  I am going to go through the surgery in hope's of relief.  One syptom that I really don't read a hole lot of is when bending over doing thing's causes sereve headaches or a lot of noise.  These are some of the problem's that I have been dealing with.  I hope that you will find answer's just as I have just from talking to all of you.  I appreciate all of the knowledge and also someone who can relate to all the problem's that we all have to deal with.  May you find the answer's in your heart.  That is what I have done.  I wish you luck.

[selmaS]

I believe Dr H in WI also treats chiari 0.....so u may want to check him out.....he is listed on the thread for specialists.

"selma"

[*Stormy*]

Yes, I agree with Ray on that one...we have found that many members have got varying reports on the MRI's and it has a lot to do with positioning and the different image slices that they take. I think also it makes a huge difference b/w sitting and standing....most of us get headrushes when we stand and I am sure that is because of the force of gravity..My NS didn't even give me a measurement except to say that I definitely "fit the criteria" and then he showed me the area of my brain where there was overcrowding blocking the CSF flow...so he wasn't concerned in counting the mm's if you know what I mean..

Selma had her surgery at the TCI, where I am in Canada so she would probably be the better one to comment on those questions...All I will say is that I have seen members here that couldn't get any help from anyone until they contacted the TCI so I think it's worth a try for you.

As for surgery, ultimately the decision is up to you...the NS can tell you what they recommend but in the end you have to weigh your symptoms and how it is affecting your quality of life. Also, keep in mind that there is a chance of continued progression..

For working out, I was a very active person b4 and when I was told my beginning symptoms were stress and that I should go back to working out, I did. I upped my routine to running 3-4 days a week and lifting weights. I feel this rapidly snowballed my symptoms to the point that I could barely walk more than a few steps w/o pain. I am not saying working out is bad, in fact it is really important..but you have to make sure you are choosing the right activities. Nothing neck straining or high impact. Here are some links to look at:

http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

http://www.medhelp.org/health_pages/Neurological-Disorders/TIPS-FOR-CHIARIANS-ON-EXERCISING-AND-SYMPTOM-ALLEVIATION-/show/1139?cid=186

Hope this helps!
Carolyn

[rod44]

Hi and welcome, as Selma and Carolyn have said it is not so much the size of the herniation that is the main issue, CSF obstruction and quality of life is also taken into consideration when deciding the type of treatment you will receive.  CM is a congenital condition but head trauma can cause changes to this.
I think iy is possible that the herniation can change and even your position on the MRI table can influence  the final result of the scan.

Ray

[DAWGS]

Thanks so much for both of your input. Its nice to know were not alone in this. Last night I was sitting on a bar stool when it broke and I fell. I didn't hit my head, in fact it is a miracle that I landed in such a way that much of my fall was broken. Yet my head hurt worse today...coincidental??? I also work out often and run and at times it doesn't bother me at all - my chiari specialist mentioned to me that was ok - what do you both think? Also I heard mixed reviews about TCI...I heard sometimes they push for surgery too quickly - again what's your opinion on that...and last question (sorry all this is new to me) have you ever seen herniations change??? I have had 4 mri's in the last year - 2 said 5mm herniation 2 said 0mm herniation (directly at the level of the foreman magnum)...is it possible that the herniation extends and retracts??? I thought about contacting Dr. Oro's office but given my latest mri of 0 mm he won't even see me. It seems TCI is the only place that will listen to us 0 chiari people - have you found that to be true?

Once again thanks so much for all your advice and input

[*Stormy*]

Hello and Welcome,

It never hurts to get more than one opinion...many members have found getting more than one to be beneficial.

Like Selma said the NS have to look at the risks of surgery vs the blockage and symptoms you are experiencing. However, it sounds like you are having a really rough time of it so if it is really affecting the quality of your life, you may want to keep looking. My advice would be to send your scans into a Chiari Institute and see what their opinion is, after all it can't hurt.
I am from Canada and I never even had an CINE MRI, my dx and surgery was based very largely on my symptoms and the fact that I had no gag reflex. My NS did show me the area of crowding by the foramen magnum on my MRI. I have heard varying opinons on the CINE MRI, it is a good way to tell if there is blockage BUT I have also heard that is isn't definite on dx the effects of Chiari.

I think you have to go largely on how bad your symptoms are..so I would keep looking..and like Selma said, make sure you are getting a lot of followups.

Good luck
Carolyn

[selmaS]

HI. and welcome to the Chiari forum.

It is not the size of herniation but if u have a CSF blockage and overcrowding  that r more important.

It is possible to have symptoms with a 0 herniation, but, u can develop more symptoms from the surgery...so unless u r at risk of developing a syrinx or had one already....it may not be beneficial to u..,which means the dr does not feel the benefits out weight the risks at this time...u could end up feeling worse.Many of the chiari drs look at what % u can be helped by surgery....it is not denying ur symptoms, but trying to avoid u gaining new ones.

I hope this helps....please try to find a pain management dr and if ur symptoms change or u get new ones  go to the NS ASAP if not see the NS on a reg basis.

"selma"