Chiari Malformation - Online Support Group

We are patients and survivors of Chiari (types I-IV), here for your support.

update from Hopkins :( & some major venting (thanks for listening it helps)

I am not going to criticize the doc too much. As it was said in posts previously, if he does not believe you need surgery he won't recommend it. That is true, he did not recommend surgery for me for CM. He told me I have stenosis in my neck and that needs surgery. However he continued to tell my wife and I that the neck surgery might not relieve any of my symptoms.

He told me I had a mild case (now add finger quotations) Chiari Malformation and it is not causing any of my symptoms. He told me he believes that all of my symptoms are caused by my POTS (Postural Orthostatic Tachycardia Syndrome).

So now I believe I am back to square 1 because the Doc's at Cleveland Clinic told my wife and I that my POTS was caused by something else and POTS is a symptom of the larger issue.

He did do some good though by ordering a cine MRI, but from the research I have completed and from what I have read on some of the posts here the cine MRI is not a definitive test due to you can still be symptomatic and have some CSF flow. He also said that he would be very surprised if I was to have and CSF restriction or blockage. He continued to say that if there was blockage I may be considered a candidate for surgery, but not definitely.

I respect his honesty and his right to the point information without hiding behind confusing medical terminology and treating me like an idiot. He has a very approachable manner and takes time to answer all questions.

Right now I feel very down and confused because I was hoping to get a definitive answer on what is causing all of my symptoms and I feel as if I did not get that.

I also feel (again after reading previous posts) that he might be missing the point because the symptoms can get worse as time goes on w/o treatment. I also feel that he was wrong in saying that the CM is not causing any problems. It is causing causing a lot of problems I believe and that it has greatly affected my quality of life. I told him that it has effected the quality of my life cause I am no longer able to do things that I used to enjoy like spending time/sdoing things with kids and family, hunting, fishing, and yes even working (at work though I had a menial job at the time before medical discharge; I felt good about myself cause I was able to work and provide for my family. I didn't get the bad thoughts that some/many of us get from time to time. Being on disability is hard to accept due to upbringing and being raised that a good man provides for his family even when he is sick; yet I can't even hold a job right now due to symptoms. He!! I can not even drive to far and forget night driving or staring at a computer screen without massive headache, double/blurry vision, etc.

What should I do, seek out another opinion,; just leave it alone; so confused, very depressed, very symptomatic, and emotional today. Going blurry and confused, let me know.

Take care all

0 members like this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Michael Salasky on February 9, 2012 at 4:46pm

forgot to ask has anyone had a cine MRI? What should I expect? How long are they?

I am supposed to have one tomorrow evening at UPMC Presby at 7 PM. Little nervous and they did tell me that I can not have it done in an open MRI so the claustrophobia is starting to kick.

take care

▶ Reply

ModeratorPermalink Reply by TracyZ on February 9, 2012 at 4:58pm

Michael,

I understand your frustration & confusion. I saw 52 healthcare providers until I found the right one. Then it felt like a light bulb came on and I could hear the hallelujah chorus playing. I also worked in Appeals for the biggest Healthcare Insurer in the US. If you have symptoms & know in your heart something is wrong other than Stenosis, Don't stop until you find a doctor that gives you answers that fit your symptons. Get 100 second opinions if you have too. I would be dead right now if I had stopped searching for someone to help me. Please don't give up. I promise there is still hope waiting for you to find.

TracyZ

▶ Reply

ModeratorPermalink Reply by Crystal on February 9, 2012 at 8:37pm

Michael,

I'm sorry that your appointment was a big disappointment:( Like Tracy said, you know when something is seriously wrong with your body and you need to keep fighting for YOU. There are good doctors out there that will listen and take your symptoms seriously. Sadly, most of us have to deal with several that don't seem to HEAR or CARE what we say before we find that ONE that truly listens.

At least, he ordered a CINE MRI. This could be an important piece to the puzzle. Yes, it doesn't always prove that Chiari is causing problems, but sometimes it does. At least, it's a step in the right direction. I just had a CINE MRI on Tuesday. I haven't gotten the results or talked to my NS about it yet. So, we'll see! To answer your question...It lasted about 45 minutes and felt just like a normal MRI. I have a really hard time laying on my back, so it was hard for me. I took an extra pain pill and one of my anxiety pills to help. I still needed 2 people to help me get up.

I hope your appointment goes well tomorrow and this leads you to some answers. Either way, keep fighting!

Crystal

▶ Reply

Permalink Reply by Bill Zern on February 10, 2012 at 3:59pm

When you go for your CINE MRI, have them make you a copy of the cd to take home. Otherwise all you'll have is somebody's opinion, and they most likely aren't a Chiari specialist. When I started get pains in my neck and head I picked up a copy of some scans I had done on my sinuses from 6 years ago... I looked at the scans when I got home and sure enough, it was very easy to see my cerebellar tonsils were right in my foramen magnum clogging it all up. All that the report said was that I had slight mucosal thickening in the sphenoid sinus. I definitely recommend this collection of videos so you know what's going on instead of relying on opinions from your doctor :

http://www.chiariinstitute.com/Videos/index.html

Click on "Patient Education" in the bottom right.

Good luck at your MRI :)

▶ Reply

Permalink Reply by Michael Salasky on February 11, 2012 at 2:31am

Bill,

Thanks. Before I left to day, I filled out a medical release form and they are to send me the CD with report. I will probably have it late next week. The tech wouldn't tell me anything, said she would get into trouble cause she is not a radiologist. the thing is I just wanted to know what I would be looking at on the CD? well that will be posted as a later discussion after I get the CD. My wife and I will watch the videos tomorrow Insomnia is in overdrive tonight and the claustrophobia that I had earlier tonight isn't helping.

▶ Reply

Permalink Reply by Michael Salasky on February 11, 2012 at 2:38am

Tracy and Crystal,

Thanks for the support but right now I am feeling like I am just plain old fashioned nuts and ready for the rubber room. It was a hard enough drive to Hopkins to feel as if I was rejected. I might try the Cleveland Clinic, I have seen some good posts on a doctor there, but other obstacles besides the CM stand in the way and I am just getting harder and harder on myself and we know that doesn't do any good. IT is great that all the wonderful people on here know what it is like and when we vent it helps, but doesn't always seem to make it better. The MRI for me tonight was just plain hell but not due to pain but claustrophobia.

I am just so frustrated and tired of being told that nothing is wrong with me or it is not the CM. I Don't think I am crazy, YET. rambling now.

bye bye

▶ Reply

Permalink Reply by Cholmee on February 11, 2012 at 3:22pm

Michael, I'm very sorry your appt didn't go any better. Please don't give up finding out what will work for you and who will work with you. You're absolutely not crazy!! I ended up having my appt at JH too (don't want to hijack your thread, but let's just say I'm in the same boat as you). I came out feeling dismissed as well, but my family and friends who have seen me day in/day out are urging me to continue searching for the answers that make sense and will help. You owe it to yourself to do the same, as much as it's a struggle.

Hang in there!

Kellie

▶ Reply

ModeratorPermalink Reply by TracyZ on February 12, 2012 at 8:13pm

If you went to Johns Hopkins....then Pittsburgh isn't to far for you. I went to Dr. Peter Jannetta at Alleghany General. He developed most of the current Neurosurgical Techniques and literally saved my life twice. His staff is wonderful. My first visit, was for Geniculate Neuralgia. I had to have Microvascular Decompression surgery and he spent an hour talking to my 11 year old daughter so she was comfortable with everything. Dr. Jannetta retired this summer but is still over the practice and is doing research. All is staff has been trained by him. He teaches all over the world. I haven't met a doctor yet that doesn't say he is amazing. All I have to do is call or email and they get back with me the same day. I have just been to so many NS that got everything wrong and was rude. One Dr. at VCU Medical Center actually told me " It's not a God given right to be healthy". That was after I waited for him for three hrs. Needless to say I left, never to return. I told Dr. Jannetta what that dr. wanted to do in surgery & Dr. Jannetta said it would have killed me. I promise you will know when you find the right dr. If you need aditional assistance I worked for BCBS before I had to go out on disability and can get some names of providers and patient recommendations. Please just don't give up. It took me 4 years to find the right doctor and I automatically felt at home. Like I wasn't a visitor from another planet, speaking a foreign language.....

Tracy Z.

Michael Salasky said:

Tracy and Crystal,

Thanks for the support but right now I am feeling like I am just plain old fashioned nuts and ready for the rubber room. It was a hard enough drive to Hopkins to feel as if I was rejected. I might try the Cleveland Clinic, I have seen some good posts on a doctor there, but other obstacles besides the CM stand in the way and I am just getting harder and harder on myself and we know that doesn't do any good. IT is great that all the wonderful people on here know what it is like and when we vent it helps, but doesn't always seem to make it better. The MRI for me tonight was just plain hell but not due to pain but claustrophobia.

I am just so frustrated and tired of being told that nothing is wrong with me or it is not the CM. I Don't think I am crazy, YET. rambling now.

bye bye

▶ Reply

Permalink Reply by Michael Salasky on February 12, 2012 at 11:04pm

Tracy,

Actually I live about 1 hour from Allegheny General, Butler, where I live, is just north of Pittsburgh. Where I am at, I just don't have a direct route but it has been done before and it can be done again. I stayed there when I was being evaluated for POTS. I have had several other run ins with Allegheny General and personally not very happy with them as a whole. At this point though, I will try.

Please give me his contact info and I will see what I can set up. Do you know if he works with CM or does he do it all? Also do you know if one of his partners is Dr. Bejjani? I went to Dr. Bejjani and he was one of the NS that stated CM is not my problem. I would prefer if he was not a parrot or as you have said he has retired but someone in his group who is not a parrot and telling me that what others have already told me. Even as a teacher I wonder if their is any original though left in the world or are we like sheep just to believe what other tells us and not form our own opinions and thoughts.

I think what I am looking for is someone who will think on their own and not reliant on what others have said. From what I have read here and through my research all fingers point to that most decisions from CM usually take finding someone who believes you without meeting all of the predefined criteria. My research has lead me to believe that most NS/doc/etc believe it is a case when the herniation is 5mm or larger. Some take into an account of the CINE MRI though from an interview (of course I can't find it now), a CINE MRI is not also conclusive as well. None of the NS or docs will tell me how big my herniation is but they say it is too small to cause all of my problems: it is small is what they all say. From what I have read from the good people here is that is not the size of the herniation and I believe the good people here MORE than I do the "professionals" (and yes I am using that term both sarcastically, condescendingly, and humorously).

I guess I just want a doctor to believe me, believe my wife, hell I'll even bring my oldest, Katrina and she can tell the doc on how much my life has changed. I mean even my 3 year old knows to go get mommy cause there is something wrong with daddy and if that is not heartbreaking even, how do you explain to a three year old that there is nothing mommy can do to help daddy?

Sorry Tracy, I am ranting and venting more, today has been a bad day filled of symptoms and I am refusing to let myself get the rest I need cause I am trying to make it easier on my wife. She is already worried enough about losing the baby and it is only in the first trimester; but after three known miscarriages (one in first trimester approx 14 weeks and the other two where approx 24 and 26 weeks) and multiple (at least 3) suspected miscarriages (home test confirmed never made to doctor for blood test confirmation) I just don't want to put more stress on her.

I know I should count my blessing for having 2 wonderful children as it is but ARGHH I am so frustrated.

Thanks for letting me rant will talk to you soon. Also thank goodness for spell check, I haven't seen that much read on something I wrote in a very long time. I think that is my humorous thought for the night.

▶ Reply

ModeratorPermalink Reply by lori on February 13, 2012 at 11:56am

Michael.....

I am so sorry you are going through all this.

Let us know what happens with the CINE and POTS testing.

Peace,

Lori

▶ Reply

ModeratorPermalink Reply by TracyZ on February 13, 2012 at 7:03pm

Michael,

I am so sorry you and your wife are under so much stress. If I could I would drive up and babysit while you both take a nap, or go to dinner or just relax. I will call tomorrow and get you a name of a good NS that will give you some answers with Chiari experience. I pray you get some rest. You can vent to me anytime. I totally understand. My personal experience tells me if you have tonsils no matter how long in your spinal column it causes symptoms. Remember I am the woman that it took 4 years & 52 medical specialists to get the right diagnosis and dr. I won't give up. I did this all the time at work and now I am home with a Master's Degree in Managed Healthcare and watch movies all day or lay down. I truly hope things get better for you and your family !!!

Tracy Z.

▶ Reply

Permalink Reply by Christine on February 13, 2012 at 7:37pm

HI MICHAEL. SORRY, JUST READING YOUR STORY NOW. I'M SO SORRY ABOUT THE VISIT AT HOPKINS. WE'VE ALL BEEN THERE BUD. HITTING ONE DEAD END AFTER ANOTHER. DON'T GIVE UP. YOU'RE NOT IMAGINING ANYTHING, YOUR SYMPTOMS ARE REAL AND WE ALL KNOW THAT. NOW, HOW DO WE GET A DR TO LISTEN, TRULY LISTEN?? THIS IS GOING TO TAKE ALOT OF STRENGTH ON YOUR PART. DILIGENCE AND PERSISTENCE IS KEY RIGHT NOW. HAVE THOSE TESTS DONE AND TAKE IT FROM THERE. IF YOU HAVE TO GO ELSEWHERE, YOU DO IT. KEEP MAKING THOSE NS APPTS UNTIL YOU HIT THE JACKPOT! YOU WILL, I PROMISE. I HAD TO GO TL SEVERAL DRS UNTIL I GOT TO THE RIGHT ONE. AS YOU KNOW, CHIARI IS ONE OF THOSE DISORDERS THAT SEEMS TO BE A FRIGGIN MYSTERY TO MOST IN NEUROLOGY FIELD. KEEP STRONG MICHAEL. I FEEL THE WAY YOU DO ABOUT FEELING FRUSTRATED ABOUT NOT DOING THE THINGS I USED TO. I TOO MISS WORKING!! JUST SAID THAT TO MY HUSBAND TODAY. I HAD DECOMPRESSION SURGERY IN AUG. 2011 AND I'M STILL STRUGGLING EVERYDAY. MY FATIGUED IS INTENSE AND I WANT SOOOO BADLY TO FEEL WHOLE AGAIN. ONE DAY AT A TIME MICHAEL AND KEEP SHARING AND VENTING.

CHRISTINE :)