new Chiari Malformation dx

[kdagain]

Hi all!
Boy, I have been waiting for BT to come back on line! I sooooo needed some info on this.

I have been with BT for about 12 years, mostly on the stroke forum. It has been hard getting assistance for my strokes (9 of them) because I didnt have the typical risk factors other than high blood pressure. Altho, now that my younger siblings are experiencing the same things at about the same age as when I started, there is an idea that it might be some weird unknown genetic thing.

The stroke symptoms/residuals have changed from mostly cognitive (1st 6) to mostly motoric (last 3). Needless to say, I have had numerous MRIs in the course of this journey (about 12 years). Not until 2 years ago did they note a Chiari Malformation. I asked about it and was told that it was a nothing thing and that I had probably had it since birth. It was 5mm.

This year, I changed neurologists. The CM is now 13 mm by 2 MRIs. The neuro says that maybe some of the confusion over the strokes is that some may not have been strokes at all, but the CM. (Not all can be considered that because I have thrown clots in my arm and leg and that wouldnt be CM related and my carotid and other arteries are closing up with atherosclerosis. CM wouldnt cause that either.) I wasnt worried about the CM cause I was previously told that it was not that important. The neuro expressed her concern and said SHE was worried about it. (but not enough to schedule another appt after the testing for 4 months.)

I had noticed that I would be more dizzy and have more trouble walking after sitting in overstuffed chairs. I am wondering if it is connected to the ACM? I am short and most chairs do not fit me. If so.. it makes me really angry that they didnt notice the CM earlier and tell me what to do about it...I don't mean the surgery, just what to avoid. I spent MONTHS sleeping on the couch and in the chair during recovery from the strokes. We could never figure out why I was neurologically declining during recovery. I was having to crawl from place to place at times and felt like I would surely die. I now know that my torn rotator cuff is from sleeping on the one couch while recovering from the leg clots.

Now, I notice that sitting on the couch or chair for even an hour makes me dizzy when I stand and my legs cut out. This is really frustrating to me. I spend a lot of time on the computer and get so tired of sitting at the kitchen table.

I only know what a google search gave me about ACM. Which isnt much other than that surgery SOMETIMES helps. I can't have surgery due to the stroke issue. They wont fix my heart or gallbladder either. So, my question(s) to you guys is.. what do I watch out for? How do I avoid aggravating it? (outside sitting in those chairs or sleeping on the couch?)

What do I do about this? It has really thrown me for a loop. I never thought undiagnosed problems would be worse emotionally than diagnosed ones.

[krashleen]

Hi there and welcome to the CM forum. If you have the symptoms, then it is problematic, then you should consider decompression surgery. You may need to see a chiari qualifed nsg for your treatment.

Razzle is good at helping people find nsg's for people that are looking for a chiari expert.

Other than that, breathing problems, sleep apnea, heart issues are some that you should be aware of.
Dizziness I don't have a cure for, but perhaps your doctor should look into POTS too? I cannot remember all the symptoms, but recall someone here having this condition and it impacted their getting up from a seated position and having dizziness..I tried but I just cannot remember, cept their should be someone here that has it, or you can google it.

I wish you the best..

[jgoldie]

I feel like a broken record, but I have confidence in the Chiari Institute in NY. If your neurologic problems are worsening, along with the herniation (!!) you're probably a decompression candidate. Your problems may be more Chiari related than stroke related. Dr. Bolognese is the best. good luck

[jgoldie]

Go to the Chiari Institute website, they have videos there. I believe I may have heard that Chiari 1 Malformation CAN cause 'cardiac' issues??! I don't remember the cause/effect, but I remember that it was a cause for immediate attention...!
good luck

[dhurlebaus]

You can check out my website. WWW.STUDIOSAFARI.COM
go to the Arnold Chiari link. There is a picture of my MRI scan there. Click it and it will appear larger. It page also lists my symptoms and surgery results. Good Luck .... Dawn

[kdagain]

Thanks all!
will look into it.

Just got a message in the mail that my neuro is leaving for greener pastures (one that doesnt require her to be on call with having young children). Can't blame her but it sure is not easy to find a GOOD neuro who talks to you and explains.

[rosie444]

Hi Soj,
Please see my post under chiari and marfans. I didn't know so many members knew about Chiari Institute!!! Anyway, totally dizziness upon standing, called orthostatic hypotension or pots- postural orthostatic hypotension- is a hallmark of chronic fatigue and thus related to Chiari. I'm sure you are double jointed- google ehlers-danlos, sometimes just have one hyperflexible joint causes the pots. 99 prob 100 percent of Chiari have pots. Most docs try and increase your b.p. with meds. Wait and get an upright MRI. NO SURGERY without at least ten opinions!!!!!!!!!!!!!!!! Mine affects, balance, hearing, vision, etc. but I have seen TOOOOO MANYY COMPLICATIONS!!!!! Watch webcasts on Chiari Institute website. I say no stroke, Your symptoms are chiari!. Rosie 444

[maridane]

www.chiarione.org for a list of symptoms
www.thechiariinstitute.com for Dr. B.'s fabulous videos
www.wacma.com great info
www.asap.org also great info
www.conquerchiari.org loads of info and current research

The Chiari Institue is just probably your best bet. I know that Dr. B. discusses in some of the videos things about chiari and cardiac problems and also some of these issues being what they call red flag..... Please for your safety and peace of mind check out the videos.
God Bless, Marilyn

P.S. Chiari once it has become symptomatic and progressively so can be and is a very serious issue and not something to be taken lightly. Keep in mind that there is often involvement of the brain stem and when that happens everything can go wrong. Please give this issue the attention it deserves. Don't let any of those docs tell you it is nothing, if they are telling you this then they need to go back to medical school and you, my friend need to run as fast as you can away from them.

[kdagain]

Well, met up with my neuro again this week and left feeling very depressed.

2 weeks ago I had an episode with right facial droop for a few seconds, right arm and leg heavinesss. I am already on Lovanox (heparin) so when I went to the ER they said there was nothing to be done and sent me home.

I was upset because I was also having right side chest and shooulder pain with radiations in to the back o my head right behind the ear and up the front o my neck from the base o throat to my ear area. This was accompanied by high systolic Blood Pressure following chest pain following eating a candy bar.

Yeah, probably a lot of coincidences but all I know is that it felt like another stroke/tia and like just beore I threw clots a few years ago and lost all the circulation in my right leg and arm.

Heparin usually helps me a lot... but nooooo... no treatment.

Neuro tells me the other day that she thinks it may be the Chiari. That many of my strange strokes may have been chiari. That there is nothing I can do about it (except the surgery which is too risky for me). That she will look into some tests and have me go see this stroke neurol to tease things out. (She will no longer be my neuro after next month, she is changing jobs.)

However, if it IS the Chiari.. there is nothing to do about it and I may as well stay home and wait it out...

This doesnt seem to make sense so I am here to ask you guys for some help.

1. Are Chiari symptoms ever stroke-like for you?
2. Can Chiaria act like MS where you have a period of symptommatic times and then relative quiet?
3. Despite numerous MRIs over the past 10 years, the Chiari was noticed a 5mm 2 years ago and is now 13mm. Does it always grow this fast? Does it sometimes not grow anymore?
4. Doc wouldnt tell me anything about preventative measures other than not riding a roller coaster. Sigh. I already know to stay out of over stuffed chairs. What else do you do to keep the symptoms down?

It feels like I have been sentenced to a long and horrilbe death with nothing *I* can do to control it. It is a mighty tough pill to swallow. I mean, it isnt just me, it is my son and husband too. So, what can *I* do? What do *You* do to battle this thing?

I need information for what's ahead of me and how I can manage my life with this thing without surgery.


For those of you who havent read about me previously, I have premature atherosclerosis from an unknown vascular disorder; mitral valve prolapse with severe/profound regurgitation; multiple strokes and TIAs; and a nasty gall bladder that they wont operate on either.

[krashleen]

Good advice here, and I wanted to pipe in too.
You might want to be screened for Ehlers-Danlos syndrome, there are a number of different varieties of this.

http://www.ednf.org

I also had the facial droop, and facial numbness before surgery.

Its hard to "manage" chari once you are symptomatic. There are some red flag signs that you need to be aware of that the Chiari Institute has on their website, view them they will really help you!
1...hmm I don't know the answer to that one!
2. YES most def, Chiari is life-long and filled with exacerbations and remissions. Personally, once I became symptomatic the symptoms kept escalating and getting worse to the point of seizures due to my herniation was wrapped around my brainstem.
3. Yes it can grow based on what you do, trigger activities..such as sneezing, coughing, straining for a bowel movement...valsalva manuevers. Coughing was my biggest trigger.
4. I am post-op from late April this year, and I still wear a soft collar in a car, avoid car accidents...like we have control over that one!
Find a good pillow, one that works for you. Rest. Do not get stressed out, try to keep things calm around you. Myself, I cannot handle loud noises, confusing things going on, it gets overwhelming.

Whew..I hope that this helps you..we are all in this together and have to learn and accept this new person that has emerged. Difficult, and not all days..

[razzle51]

Chiari Institute is good but some people have hardships which keeps them from going there. Where do you live maybe there is somebody closer to yuo.

[kdagain]

Thank you Krashleen.. a lot.

The trigger information was particularly helpful and would love it if others will also chime in.

I get stiff necks when I drive, esp if I am cold... I figured it was just from the cold, could I be triggering the Chiari just by tensing up? It is like a spasm in my neck an shoulders that I can't "think" down.

I want to slow this thing down if possible and not aggravate it.

I have a feeling a lot of it is my fault. :( Several years ago, I threw clots in my arm and leg that caused me to have no circulation in them... The arm recovered pretty well but the leg was in a mess because there was nerve damage from lack of circulation because the hospital/docs were horsing around. I was in a lot of pain and a lot of pain killers for many many months. Because of the shape of our house and my inabbility to get around, I slept on the couch for all those months..and spent most of my days there too.

When I got "better," I found I have a torn rotator cuff. Couldnt figure it out til I traced it back to that particular period of time.. I think the pain meds masked the position discomfort and I didnt know I was hurting my arm.. It was a while after that that they first noticed the Chiari, too. (Again, I had had a lot of MRIs before then .. and brain angiograms and there was no note of it.)

I have always recovered from my "strokes" and colds by sleeping on a couch or in a chair so I would be tilted. This time it was over 6 months of it tho.

After reading about chiari a bit, I am wondering if a lot of my stroke/vascular problem recoveries were really compromised by the Chiari... I would be in the hospital or rehab and get home and feel decent and then start down some really serious declines.. and the docs couldnt figure it out. I am wondering if my parking myself on the overstuffed furniture for sleep and all day computer use was the culprit. Again, I am short so the chair/couch back always hit me in the head in the wrong place and some of the furniture arms are not good headrests because of my size..but I didnt have another option at the time.. so I made do.

I know that sitting on that furniture definitely makes a difference now. I cant relax on them for very long before I have trouble walking and am dizzy when I get up. It isnt POTS. I had that checked out. I have uncontrolled high blood pressure so the BP meds are to go the other way in that regulation.

Does this sound possible to you guys? That the Chiari might have shown up as a result of sleeping on those couch/chairs when pain medicated and then gotten exacerbated by recouperating in the chair all day with my lap tops for later episodes?


I really really do not want to believe I did this to myself. even if out of ignorance... but the coincidence between appearance and growth and those habits sure are strong.

[kdagain]

Oh, and Krashleen... I dont have any double jointedness or anything that resembles he Ehlors disorder you mentioned.

Thanks for the suggestion, tho.

[krashleen]

Chiari is congenital. You have had it all your life, if thats it. Trauma can exacerbate the symptoms, but sometimes, there is no rhyme or reason why it becomes symptomatic.

Hang in there..keep asking.

Oh and the POTS? Most chiarians have either a tachardyia, or POTS.

[kdagain]

Thanks Razzle. I am in Ohio. Did I see in a post before BT broke that someone had gone to Cleveland clinic and was unhappy with it?

[razzle51]

yes some are unhappy with a certain dr. there. But there are alot on ASAP website from Ohio.