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

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

Postby wendi » Mon Aug 16, 2010 7:09 am

I was not knocking Dr Oro either. I was just wondering why he is backpeddling. He seems to be more conservative then he used to be. I assume some of it is his caseload. More and more pts and too little time to see them. He stopped his blog which was a wonderful place to learn. There are only so many hours in a day and he is supposed to be doing research which I can't wait to see the outcome of, but have not heard a word about it. First he started by saying he won't see a pt unless they have a dx of cm/sm and now he is telling people that diet and exercise is what they need. This is not the same NS from last year and I wonder what happened to change his mindset. He is still one of the best there is.
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 » Mon Aug 16, 2010 7:52 am

I have been on Steriods for post PFD related headaches (came down with chemical menigitis post-surgery). So my situation is a bit different then yours but,I am on a heavy duty steroid - Dexamethasone - which is commonly given for brain tumor/cancer patients to get down brain swelling. It takes my headaches down from a near 10 to a near 0. Hope you get some relief! ZK
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Re: I'm now told it's the size that matters - REALLY?

Postby shineon » Mon Aug 16, 2010 9:04 am

Unless you are a NL/NS and know the specifics of a case you are not in the position to judge if someone is a candidate for surgery or not! That is between the NS and the patient.

Not everything relates back to the TCI lawsuits. Not all doctors are influenced by what TCI may or may not be guilty of. My NS surgeon has not changed the way he practices medicine because of them.

And yes, while exercise and diet will not cure or take away all or any of the pain associated with cm, being extremely overweight and sedentary to the point where it is causing further debilitation will only cause more pain and discomfort. My NS highly recommends a healthy lifestyle coupled with an appropriate fittness program for all of his CM patients - WITH or without surgical intervention. Nothing at all wrong with that when it is not at the exclusion of other treatment recommendations.
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Re: I'm now told it's the size that matters - REALLY?

Postby wendi » Mon Aug 16, 2010 10:02 am

Here we go again. Have you seen a picture of Dana? She is underweight if anything. Before this turns into a blow out again because you can't have an adult discussion around here, I am bowing out............
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 shineon » Mon Aug 16, 2010 10:42 am

wendi; Here we go again? I have no idea what you are refering to?

I don't understand what you mean about not being able to have an "adult converstation again". You may not have liked or agreed with what I said but that does not make it not "adult" like. I am quite puzzled by your comments but am very open to understanding how my posting was not "adult like" in your view.

If you read my posting again, I never mention anyone's specific name, I was speaking in general regarding diet and exercise and not refering to anyone specific. I simply wanted to share what my NS's views are on the importance D & E and a healthy lifestyle for CM patients - thats all.

I don't feel there was a need for you to jump on my posting the way you did - I was simply providing feedback.

This is now getting away from TracyO's original posting and for that I will apologize for.
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Re: I'm now told it's the size that matters - REALLY?

Postby TracyO » Mon Aug 16, 2010 11:15 am

OK folks - we need to remember that it's okay to agree to disagree. It's my understanding that the purpose of this discussion group is to discuss topics. All of us are here because we or a loved one of ours is living with CM and/or SM. I believe it’s important and special for us to have this place where we can bounce things (ideas, that is… :shock: ) off one another and just even know that we’ve got someone to listen and lean on when we need it.

For all of you and your thoughts, opinions, beliefs and ideas, my gratitude for your sharing goes out to you.

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

Postby chiarithree » Mon Aug 16, 2010 1:08 pm

Tracy, you are welcome, that was very well said! One very important thing we all need to remember all of us also, is we as patients are really teaching these doctors about Chiari too. Chiari is a rare thing, or said to be rare, most regular doctors only have a paragraph in a textbook in medical school. It's only recently come to light as far as the advent of the MRI and findings because of that. Many of them are "old school" where it's incidental and doesn't mean anything, but those who deal with it all the time, and see more patients with it and the various symptoms that present are more open to looking further. Most but not all physicians might tend to try to follow what others are researching and finding out. Sometimes that's good and sometimes it's not. I for one, hope everyday that some doctors might even read these posts that are put here by us and learn from us even more. You get a good physician that is willing to learn that way once in awhile, those are the keepers!!! It's great when you have a doctor that listens to you as a patient, and is willing to take those extra measures to try to help you out. I for one am lucky to have a team that are willing to do that. But, many of us aren't, so we just need to be here for each other and be advocates for those that are new and learning how to just simply survive this condition day to day in this medical field that is so new to this disease, and again help direct those to our teams that understand and are up on the latest research and willing to listen to their patients, and most importantly reassure these people who are new to this and probably some scared to death!!! Especially those like myself who are far from "NORMAL" and have way more things than just Chiari going on that can mimick so much of this disease's symptoms.

I had gone to three doctors (NL's) before getting properly treated and diagnosed. Unfortunately for me this board didn't exist back then, if it had I would have been just like Tracy, and posting my questions and even my own frustrations too, because this group is a bunch of great listeners and supporters, but I'm so grateful it's here for me now, and I can be a part of this group and try to support and help those who are currently like I was, so lost, frustrated and just not knowing where to turn or who to trust. Believe me, I lost a lot of faith in the medical field and doctors in general several times in the past, went home angry, hurt or just plain frustrated for years, pretty much like you all, felt like a case of "Mystery Diagnosis" but it finally took a great NL/NS that listened to me, believed me, and was willing to do the proper testing, not listen to the "current thoughts" from this "popular doctor" or that "popular doctor" and go on his own gut instincts and the knowledg he had to give me the proper treatment.

And you know the last question I had asked him after my final decompresion surgery was "What does the future hold for me now" and his reply was "we simply do not know", "just take this dissorder one day at a time" and "we will be keeping a close eye on you" and that "we still have a lot to learn about Chiari and the course of this disease" but you know what this man learned from what happened to me (bovine rejection) and he is teaching others about this, so not one more of his patients goes through the heck I went through, that's way cool!!!! He's never had that happen to any of his patients, he personally called the company that made it and they said it just didn't happen, but he stuck to his gut and took the thing out replaced it and I was "fixed". But, I suffered greatly during that trial, but he got me through it. He has said to me a million times, "we just don't know enough yet about Chiari or Syringomyelia to honestly tell patient it will or will not fix them", "but we are learning", and that's the case for most physicians out there, they need to really learn from us and not so much what "others" are doing or thinking. I got lucky, but that's why I'm here posting today, not many of the members on here especially the new ones are so lucky, they are where most of us were before we finally got the right physician, the right treatment.

He also told me it's kinda a game of Russian Roulette as far as whether to decompress or not, he tries to go by the patients symptoms and how their daily life is affected, and whether there is serious risk of syrinx progression in those with syrinx. He has seen many of his patients do better after decompression and some do worse after and there is no way of knowing who will either way, but again, research and more patient advocates will help with that. Some day down the road thanks to all of us current patients they will know more about this and have a better undestanding of not only what causes it, but how to help those with it, it takes time, and we have to understand that, and that is hard when you are dealing with a chronic sometimes debilitating disease. But they will get there, with our perseverance and help.

We are all going to have our favorite physicians and those we dont like too but we also have to remember that someone else might feel differently too and have a different opinion and that's o.k. It's the patients comfort level with their doctor that is important. If you trust him/her and feel comfortable with their knowledge then that is what is the important thing.

Sorry I rambled, and you all take care, Bridgette ;0)
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 chiarithree » Mon Aug 16, 2010 1:18 pm

Tracy one other thing I thought to mention I have been where you are, both my mother (also has chiari) and I and my gradmother started getting daily headaches from our teens, every day!!! They told me they were migraines, my mother and my grandmother too. Looking back now, I realize they weren't, surgery stopped the cycle for me, and my mother still has them but is not going to have surgery. My teenage daughter who has Chiari as well has just started getting a few here and there. Chiari's number one symptom is headache in the back of the head, and that's were all ours are. Not saying you can't be a migraine sufferer or tension headache sufferer, those are possibilities but again so is Chiari. I had learned to live with them taking Midrin etc. but was also told by my PCP at the time that the Tylenol and all those other drugs would just worsen the pain cycle from withdrawl effects.

I have to laugh because my mothers cure that her PCP gave her in teh 1970's was to use a traction device that hung from the doorway and she put her head in it and it relieved them. Well now research has somewhat linked hypermobile joint syndrome with Chiari and well my mom got diagnosed with that here this last year as did my daughter as well. So more than likely the two of them have the Ehlers Danlos too.

But yes, Chiari for us, caused chronic daily headaches and nobody could tell us why until I saw my NS, funny I got diagnosed in 2007, my mom had in 1996 but nobody told her, it was "incidental" finding on her neck/brain MRI she had done for neck pain. And then my daughter got diagnosed in 2008.

Best wishes for all you have coming up, I hope for your sake they get to the bottom of it and can help you, I know from experience it's no fun to have those headaches and the drugs only help for a little while.
:0) Bridgette
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 shineon » Mon Aug 16, 2010 5:49 pm

Nicely stated. I agree that as individuals we all may have different needs regarding what is important to us when it comes the "right" NS.

I sought the consult of numerous CM experts before deciding on the best one for me. While they all agreed on my diagnosis they all did not agree on the same treatment - just illustartes how two experts can see things differently when it comes to treatment.

The right doctor for me was the one that came closest to my philosophy on life and health etc... Sometimes it does take alot of time and searching to find the right match and even then there are no gaurentees. This is not a common condition and does require the skill set of an expert in the field of CM/SM to ensure you do get the best chances at the correct diagnosis and treatment.
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Re: I'm now told it's the size that matters - REALLY?

Postby nmaddiso » Mon Aug 16, 2010 11:31 pm

@wendi
Ita frustrating how if a doctor become more conservative, he won't come out and say, "the current atmosphere,with the lawsuits, and now with the number of patients I'm seeing, makes my practice have to take a consevative approach to surgery."
It really messess with your head if you're goal is to take a chance with surgery as ---nothing----- has worked to help with symptoms, and a Dr who is as respected as Oro says diet,stretches, or relaxation.
I know for myself, I was very depressed when this happened to me.
It destorys trusts, because of the intuition you have that the advice given to you has many more inputs then your gets interests. To me, problem like this is what make it so vital that we Chiarians band together on the net.
If I never found any other Chiari patients online, I might be in a state mental institute due to the fact that my state has such awful doctors because it's completely rural. The one other Chiari patient I know in state was kicked out of high school because they thought she was making it up, this in the 00's.
I would be willing to bet that a larger than you'd like to believe percentage of Chiari sufferers actually are diagnosed with something else and remain that what for as long as they live.
Syrinx C4 C6 with tail to T1, split tail T4 to clonus; minimal Chiari malformation <5 mm herniation; occult tethered cord; possible connective tissue disorder; bilateral pain in arms and shoulders, chronic neck pain
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Re: I'm now told it's the size that matters - REALLY?

Postby Syrinx810 » Fri Mar 02, 2012 4:28 pm

I'm having a hard time figuring a way to PM an individual regarding a post. But if the members who commented on this post could read my most recent post, I see alot of comments that really have me questioning my care and where to go next. I would really appreciate the time.
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