I'm now told it's the size that matters - REALLY?

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I'm now told it's the size that matters - REALLY?

Postby TracyO » Fri Aug 06, 2010 2:54 pm

I went to see my new NL day before yesterday at my NS's recommendation, for on-going treatment for my HAs (my NS does not recommend surgery for the CM at this time). She advised that as my CM was noted as "mild" and that the tonsillar herniation was less than 5mm (mine's 4.9), that it was not possible the Chiari was the cause of my HAs or other symptoms. She said that the tonsils would have to droop down much further in order for it (CM) to cause headaches.
?????
She believes them to be migraines. She proceeded to give me an injection of Imitrex to abort my at the time current headache, which left me lying in the dark for an hour at her office to recover from the intensity it brought to my pain. At least we've ruled out one of the many new meds she'd like me to try...

Why is the information out there and doctor's opinions on this topic so contradictory? Can a Chiari malformation cause headaches and if so, is the size of the tonsillar herniation signficant to the pain?

Any response on the "size" topic is greatly appreciated!

Peace
T.O.
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Re: I'm now told it's the size that matters - REALLY?

Postby kiminfla » Fri Aug 06, 2010 3:18 pm

Have you had a cine mri where they check your csf flow? It's my understanding that it's not the amount of descent but the blockage that is the concern. Everyone is shaped differently so a longer herniation in some could cause the same amount of blockage as a lesser degree of herniation in others. A main goal of a pfd is to create more room to restore the flow. Is the NS you see an expert in CM? I would request a cine if you haven't had one. As for the contradictory opinions, all NS are not equally educated about and experienced with all disorders. I would definitely recommend you see an expert if at all possible. I hope you get some answers and a treatment plan that will bring you some relief. Be blessed, Kim
CM - PFD 9/7/06
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Re: I'm now told it's the size that matters - REALLY?

Postby youngwife » Fri Aug 06, 2010 4:33 pm

Wouldn't that make it so much easier for docs to diagnose and treat?? Wow...what a utopia! Just whip out the ruler and see what the measurement is and Wham!, you've got your answer. :roll: :roll: :roll: :evil:

However, Chiari is not for preschoolers, and it isn't that simple. Size of tonsil herniation is NOT what is the issue. I'm sorry, I don't agree with your neurologist....and I doubt that very many Chiari specialist would either. :|

Do some reading and decide for yourself. :idea:
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Re: I'm now told it's the size that matters - REALLY?

Postby steph81 » Fri Aug 06, 2010 7:31 pm

I agree with the other posts. Its the blockage of the csf, thats what is important. You should get a cine study, and make sure your Dr. has experience with cm.

Good Luck,
Steph
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Re: I'm now told it's the size that matters - REALLY?

Postby smoovie0704 » Sat Aug 07, 2010 10:06 am

I don't believe that it is the size of the herniation as much as how much crowding you actually have. When I was diagnosed, my herniation was 9mm and enough to make me see red in headache pain. The first trip to the ER resulted in an Imitrex shot which gives you that flush feeling. My symptoms have changed and now I am headed for a second MRI this week.

Do you have other nerve symptoms like electric shocks and numbness?

I also suffer from complex migraine, usually worse around that time of the month. I have two distinct types of headaches, one for the migraine which wraps around the left side of the head behind the eye and the the other, which I call the chiari headache happens on the right side, starts behind the ear and moves toward the neck and shoulder.

Every one is different. I agree you should get your flow checked to see if you have enough room.
Complex Migraine w/o Aura
CM 9mm
Fibromyalgia
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Re: I'm now told it's the size that matters - REALLY?

Postby dtyree » Sat Aug 07, 2010 10:32 am

Size only matters for other personal issues :?:

Docs operate out of standards. Someone came up with the brilliant idea that a size of 5 and below for herniation does not create any symptoms in CM and you are right on the borderline with 4.9. Your NL is going with standards. But they are wrong in this. Docs should look at blockage to determine the effects of CM on folks health and well being. One day, I pray NLs and NSs get there. In the meantime a lot of people suffer because of standards.

Keep pushing until you find a doc who will listen to you.

Peace,
David
Been called a "walking medical dictionary".
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Re: I'm now told it's the size that matters - REALLY?

Postby wendi » Mon Aug 09, 2010 7:33 am

The old school of thought was supposed to be 5mm and the radiologist would dx you with cm. The funny thing is mine was 7.5mm and the radilogist did not dx me with cm. How come? When I went to TCI, Dr B still called mine boderline cm. Why? Because my CINE reported good flow and I had plenty of room in the posteria Fossa area. There was no crowding. But he looked at my symptoms and my unusually long brainstem and dx'd me with boderline cm and tethered cord. This is one example of why you need a cm/sm expert.

I saw a NL who was a HA expert. He said I had 2 kinds of migraines. I wondered how 2 kinds of migraines made me choke on liquid and pee my pants. He had no answers for that. I also declined to have this madman inject me in the head. He also wanted me to draw a picture of my HA for his office. Run, do not walk away.............this is what I told myself.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: I'm now told it's the size that matters - REALLY?

Postby chiarithree » Mon Aug 09, 2010 11:06 am

It's not the size!! It's the blockage. I am at 7mm and have little to no flow on a Cine flow study. I had the surgery, it did help. Now my daughter is at 10mm, has adequate flow on a cine flow study. She didn't have to have surgery (yet), however she doesn't have any symptoms either (yet). Other than chronic hiccups and an occaisonal headache, she has essential familial tremmor of the hands which I do to and that was a reason they did her initial brain MRI, they also knew I had Chiari and knew what to look for with her.

We both saw my neurosurgeon who also said it's not always the size!!!! It's whether the flow is obstructed and he always orders a Cine Flow study. Although if someone were to say be at 22mm, that's probably another story, but in our case I am at 7 and she is at 10, but we are the opposite as you can see. So it's very important that not only do they add the Cine Flow study but also the entire spine. I have a syrinx that wasn't found until 2 years after the chiari diagnosis it was found by my current doctor who was the one to order the Cine and the entire spine, the first doctor missed it because they never ordered the full studies, and funny thing, she was also the one that told me it was "incidental finding" that really didn't matter.
www.chiari1dx.blogspot.com
Chiari 1 (7mm), Syringomyelia, PTC, Empty Sella, Familial Essential Tremor, UCTD, Hashimoto's Thyroiditis. Decompressed Dec. 09, 2nd Surgery Feb 10 due to bovine collagen patch reaction.
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Re: I'm now told it's the size that matters - REALLY?

Postby Beverley » Tue Aug 10, 2010 11:21 am

One other thing to keep in mind is that the MRI's do not always show the exact picture of what is going on.

My herniation was only suspected to be less than 3mm but when they did the surgery they found that my brain was actualy pushing down to C2 in my spine. Now I know we are all built differnet and maybe I am just a little squashed between my head and my neck. Not really but maybe just smaller than others. lol

My surgery was done for a couple of reasons not just becuase of picture the MRI showed. I also had a syrinx forming in my C-spine. It was not large but was obvious on the MRI. If you add into that all my other neurological symptoms both my NL and NS who work together on this decided that it was in my best interest to do the decompression surgery. It was my NS that made the final decision but my NL was on board with it and was the one that sent me to the NS.

My suggestion to you would be for you to get a better understanding of CM and to also find another NL/NS who are not stuck back in the old eara of thinking and treatment of CM. Most often the teaching hospitals and universities have more up-to-date approaches when it comes to Chiari and SM.

My NS is highly regarded as a NS in general. But I think he was even suprised that the MRI was so off from what he really found when he got in there. Enough that he mentioned it specifically in that way after the surgery.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
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Re: I'm now told it's the size that matters - REALLY?

Postby angie7 » Wed Aug 11, 2010 11:11 am

I agree, it's not the size that matters. I had 0mm herniation with no flow.
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Re: I'm now told it's the size that matters - REALLY?

Postby TracyO » Wed Aug 11, 2010 3:27 pm

Thank you all so much for your responses. I have seen a CM specialist – Dr. Oro. I did have a cine MRI done about a year and a half ago which at the time showed no significant blockage. What was originally thought by Dr. Oro to be a syrinx, he now believes to be a remnant of my central canal, as it has not grown in the past two years and does not appear to be active. That is why Dr. Oro does not recommend surgery at this time and advised I needed to find a NL to treat me for my chronic and complex head pain.

I am desperate to find others, perhaps to justify my own beliefs about what is causing all of my symptoms, who also have CM but no syrinx or apparent CSF flow issues. I don’t believe my headaches and other symptoms to be migraine-related; but then I’m not a doctor either. I honestly believe my droopy brain has something to do with my problems. In reviewing my huge box-o-medical records the other day, I found some interesting information – all of my past EEGs reveal the same abnormal finding - intermittent rhythmic delta activity (IRDA). I read an article about a study that was done on Chiari patients that the IRDA found was likely due to lack of CSF flow. http://www.conquerchiari.org/subs%20onl ... ssue%204(4)/abnormal%20eeg%204(4).asp
Dr. Oro also pointed out to me that while the cine study showed no blockage, my cisterna magna was very small and that the cine study only showed mid-sagittal view (not enough to be certain I was 100% free of blockage). He told me he hoped that one day soon technology would allow for doctors to get a more accurate and complete picture of this; but that for now, this was the best they could do.

My new NL now has me on Topamax in hopes of preventing my headaches, which is not at all working for me. I feel as if I’m on the edge of delirium. I cannot function this way much longer. My apologies for rambling. I should quit while I’m ahead… Oh yeah – the Topamax is NOT preventing any headaches!
Thanks for listening. I wish you all well.

Peace
T.O.
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Re: I'm now told it's the size that matters - REALLY?

Postby wendi » Wed Aug 11, 2010 4:05 pm

We were discussing this at our last support group meeting. Dr Oro and other experts are now backing off of what they used to believe and what we all still believe. After Dana's last visit I for one am very confused and saddened to hear these findings coming from our experts. I fear it is due to so many law suits. Now it seems many cm pts are not going to get the treatment they need unless it comes from a NS that believes they have enough blockage and herniation. We are moving backward, instead of forward. I am so glad I was able to get my tethered cord surgery when I did because those too are in question. Now your herniation better be a certian size, symptoms don't matter and are not caused by cm/sm. You don't have sm, you have persistant central canal and can get better with diet and excercise. Jeez! If these things were true, we wouldn't need this site and I wouldn't need all these meds. Thanks so much all you people who have sued the Drs because you have not gotten better! I truly think this is what is scaring the Drs to take this safe approach. Dr Rosner in N. Carolina was the first one to go and get his license revoked and then TCI had all that backlash with the lawsuits. Now it seems Dr Oro is running scared and afraid to treat. I guess Dr Frim and Dr Menzes with be next. Dr Ellenboggen was already not a risk taker so he will be even more cautious now. Soon, there will be no treatment for anyone with cm.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: I'm now told it's the size that matters - REALLY?

Postby zenkeeper » Thu Aug 12, 2010 10:27 am

There are still NS's out there who are not "running scared" but practcing conservative and RESPONSIBLE medicine. Most NS are going to be conservative in their treatment because this is major surgery and is not a cure and does not gaureentee results. I have consulted with 4 or 5 NS and all but one have said, in one way or another, that before they will cut open the back of someones head they want to be as sure as they can that the symptoms ARE coming from CM and that PFD surgery WILL help. I have had the surgery and I can tell you it is not a walk in the park and is not a cure all. NS's SHOULD be taking a safe approach with th is and any surgery!

The goal of surgery is to restore CSF flow. If you have adequate flow then what would the goal of surgery be? If your CINE Flow showed adequate flow then how could your NS justify PFD surgery for you? I don't know..maybe there is another way to demonstrate flow or another reason for PFD surgery.

If you believe your symptoms are coming from CM then you need to keep looking for a NS who is willing to consider your symptoms in context of CM. Maybe get another CINE flow, more testing to r/o other things? From the NS's that I have recently consulted with I have been told, it is not so much the size of the herniation as it is the restriction of flow and how tight things are back there. That criteria has not seemed to change at all over the past year or so in my experience.
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Re: I'm now told it's the size that matters - REALLY?

Postby wendi » Thu Aug 12, 2010 1:17 pm

None of the NS's I was talking about were knife happy in the past. They would turn people away and not operate if they felt it would not help them. They would also explain that these surgeries are a treatment not a cure. If any NS tells you that you will be cured, you should run away. But still they have had their license to practice taken away and sued. I am concerned because one of the best ones around, Dr O, has changed his tune. He was never quick to operate before, but was one of the best around. He is now ultra consertative and it is going to hurt cm pts when NS start acting this way. Diet and excercise is not going to help someone with sm. CM & SM cause pain and symptoms! He used to agree with that. He was one of the ones doing research along with the other experts that many of us here suggested people on this board go and see. Now, I fear there are not many to refer anyone to.

For those people who are attending or have attended the confrence if it is past. I would like that question addressed. Have they all backpedaled on their thinking? Are they moving backward? Are they doing any research? If so, what is the research telling them?
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: I'm now told it's the size that matters - REALLY?

Postby TracyO » Fri Aug 13, 2010 11:20 am

JUST FOR THE RECORD: I am in no way, shape or form “knocking” Dr. Oro as a professional or otherwise. I have the utmost respect, admiration and appreciation for him, both as a medical professional and a human being. I am not implying at this time that the PFD surgery is what is right for me or is what I want. I understand the purpose of this procedure is to restore CSF flow. I DO appreciate his conservative approach. I only wish we could clone him so there would be more time to spend with patients, helping us through our ordeals every step of the way. But I understand he is a surgeon and that if surgery is not the best option for me, then I need to find another specialist who can help me with ongoing treatment for my pain and other symptoms.

Whether or not the medical profession is moving forward in its knowledge and treatment of Chiari, I do not know. I pray they are so the many precious souls suffering out there can get some relief and be able to live a better quality life while we’re here.

On a side note, I saw my new NL again yesterday, had a nerve study done on my left arm (which I’ve been losing feeling and experiencing weakness in). They’ve determined that there is definitely something wrong and now have ordered additional MRIs. Yahoo. She also took me off the awful new meds (Topamax and Midrin) and put me on three new ones. Prednisone (to break the pain cycle – I have not had a headache-free day for several weeks now and just am at my wit’s end), Percocet and Fioricet for pain. Has anyone been given steroids to “break” their pain cycles before? If so, did it work? Interestingly enough, when I got home from my miserable appointment with my NL, in the mail was a letter from Colorado Neurology Specialists, who work in conjunction with Dr. Oro’s practice. They advised they have a new NL on staff, Dr. Kristen Graesser, who Dr. Oro had mentioned to me on my last visit. I believe she specializes in MS but headaches are her secondary. I think I will proceed in setting an appointment with her. I think I’d feel better working with her as she’ll be somewhat closer to Dr. Oro in both proximity and work practice. Maybe it’s a sign…

Thanks again to everyone who responded to my post.

Peace
T.O.
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