Aa
Disheartening "news" from Dr. B
Hi all! Well, I had my CINE MRI/MRA yesterday. Dr. Batzdorf called me this morning to tell me that my flow was fine and that, in fact, now my tonsils are above the foramen magnum... WTH?! They had me in the machine yesterday with my head positioned so that I was having a bit of trouble breathing... chin in and towards my chest, with my neck basically flattened down to the table. It was SO uncomfortable! I just thought that was how they needed me positioned so they could check the flow. ??? How can my CM be 5-6mm BELOW the FM and now be above it?!
Dr. B basically told me that it wasn't the Chiari. So what now?! I asked him, but what about my symptoms?! They are here, real and totally scream chiari. He has now ordered blood tests, which I will have done as soon as possible (It's flooding around here, so not real eager to get out. Yesterday there was a tornado 20 minutes away... yes, in SoCal!!!) I'm hoping we can dodge the raindrops tomorrow to get there and back safely. What will they be looking for in these tests? I have had blood work almost every year and there has never been much of anything of significance show up.
I am SO frustrated and, quite frankly, I'm ANGRY!!! I am almost feeling like I have wasted 5 weeks of the short period of time I had left with my COBRA, which ends in April. I got here on Dec. 16. My appt was Dec. 17. They were closed for two weeks. I called on Jan. 4 to remind them I was here - away from home! - and see if they could get the tests ordered (that they knew would be done before I even got here!). Finally, after calling two more times and emailing Dr. B, "she" called to say they requested and were granted the MRI/MRAs... the earliest I could get in was that day (which I couldn't get there in time) or yesterday. Now it took until I called and emailed several more times to get the order for the blood work, which he said he wanted when I was at my appt.! ARGH!!!
How can they drag their feet this long? How are others of you going to these docs and spending three or four days getting tests done? What other tests are they doing? I don't have a syrinx - that Iknow of. I don't know if he has looked at anything for tethered cord. What else? What do I do about this pain, the headaches, the soft tissue pain in my joints, numbness, tingling, etc?
At least for right now, I have COBRA. Once April gets here, I won't have insurance to cover them either. Granted all they do is take the edge off... sometimes, but then what?
I have thought about trying to reach Dr. Oro to see if I can send things to him to review in the meantime, and maybe see him on my way back to Indiana. I have heard he's taking 6 weeks to do reviews though. Does anyone have a connection with him? If so, would you consider interceding on my behalf to see of he can see me sometime soon... maybe in the next two to three weeks? I can't imagine waiting any longer than that to try and get something accomplished here. My time is running out.
I'm sorry to keep rambling... I was in tears this morning. I am just beside myself.
Thank you for reading... letting me vent... and for any information/assistance anyone can offer.
Blessings to you all!
Lori
Dr. B basically told me that it wasn't the Chiari. So what now?! I asked him, but what about my symptoms?! They are here, real and totally scream chiari. He has now ordered blood tests, which I will have done as soon as possible (It's flooding around here, so not real eager to get out. Yesterday there was a tornado 20 minutes away... yes, in SoCal!!!) I'm hoping we can dodge the raindrops tomorrow to get there and back safely. What will they be looking for in these tests? I have had blood work almost every year and there has never been much of anything of significance show up.
I am SO frustrated and, quite frankly, I'm ANGRY!!! I am almost feeling like I have wasted 5 weeks of the short period of time I had left with my COBRA, which ends in April. I got here on Dec. 16. My appt was Dec. 17. They were closed for two weeks. I called on Jan. 4 to remind them I was here - away from home! - and see if they could get the tests ordered (that they knew would be done before I even got here!). Finally, after calling two more times and emailing Dr. B, "she" called to say they requested and were granted the MRI/MRAs... the earliest I could get in was that day (which I couldn't get there in time) or yesterday. Now it took until I called and emailed several more times to get the order for the blood work, which he said he wanted when I was at my appt.! ARGH!!!
How can they drag their feet this long? How are others of you going to these docs and spending three or four days getting tests done? What other tests are they doing? I don't have a syrinx - that Iknow of. I don't know if he has looked at anything for tethered cord. What else? What do I do about this pain, the headaches, the soft tissue pain in my joints, numbness, tingling, etc?
At least for right now, I have COBRA. Once April gets here, I won't have insurance to cover them either. Granted all they do is take the edge off... sometimes, but then what?
I have thought about trying to reach Dr. Oro to see if I can send things to him to review in the meantime, and maybe see him on my way back to Indiana. I have heard he's taking 6 weeks to do reviews though. Does anyone have a connection with him? If so, would you consider interceding on my behalf to see of he can see me sometime soon... maybe in the next two to three weeks? I can't imagine waiting any longer than that to try and get something accomplished here. My time is running out.
I'm sorry to keep rambling... I was in tears this morning. I am just beside myself.
Thank you for reading... letting me vent... and for any information/assistance anyone can offer.
Blessings to you all!
Lori
Hi Lori, It also has taken me years to be dx with this too. You need to fight it all the way. I finally am getting the help I need. I also learned to push dr's to get answers cause i have 2 children in remission from cancer and i knew somthing was wrong with them and once my son was dx and in remssion I knew something was wrong with my daughter and pushed to get her looked at an she had the same cancer as my youngest son, they told me she would have died if I hadnt pushed them (and this is comming from the Dr's at Children's Hospital of Pittsburgh). Just keep to your gut feelings. Best of luck to you.
Alicia
Alicia
Hi Lori, It has taken over 4 years for me to get a DX, if it were not for the Syrinx, cord compression and other spinal issues that my NS feels are causing the Herniation (4mm) it would have been ignored as would the HA vertigo and balance problems.
Fight your corner, this dose not suddenly disappear.
I hope you get some answers soon
Ray
Fight your corner, this dose not suddenly disappear.
I hope you get some answers soon
Ray
Thank you all so much for your thoughtful replys. I don't know where I would be if weren't for all of you!
We are so blessed to have each other!
We are so blessed to have each other!
Hey Shannon!
When you get a moment, would you please send me the email addresses for the doctors' assistants? I will try to get in touch with them ASAP.
Thank you so much!
Blessings!
When you get a moment, would you please send me the email addresses for the doctors' assistants? I will try to get in touch with them ASAP.
Thank you so much!
Blessings!
So sorry to hear you are getting the run around, after such a long trip to find some answers. Hope you can get some answers soon. Will keep you in my prayers.
Barb :)
COMMUNITY LEADER
With the ANA and the FreeT 4 it does look like he suspects an autoimmune issue..which we r prone to, but the TSH and Free T4 is an indication he is checking u for Hashimoto's thyroiditis...I have that .....it can add to the run down feelings we get, plus added weight gain.....dry skin and many other issues......
And to not all tonsils......De Menezes is one of the specialists for the instability....he spoke at a conference I was to and explained it is like setting a pumpkin on top of a pointed stick....it moves like a bobble head but after time it will slide down onto the stick........
He was a very well informed speaker and entertaining as well !!
I am sorry u r finding out how slow the medical profession moves and I do hope u can go to one of the other drs on ur way home.......
"selma"
And to not all tonsils......De Menezes is one of the specialists for the instability....he spoke at a conference I was to and explained it is like setting a pumpkin on top of a pointed stick....it moves like a bobble head but after time it will slide down onto the stick........
He was a very well informed speaker and entertaining as well !!
I am sorry u r finding out how slow the medical profession moves and I do hope u can go to one of the other drs on ur way home.......
"selma"
It sounds like you are really going through hell out there. I can appreciate the tension in the pit of your stomach while sorting through both the information the DRS give you as well as the LACK of info they sometimes provide.
We have tolerated the same scenario for quite some time. Here is what I have come to believe..... Each Doctor is human that factors in his/her personal beliefs and experiences in with the medical training they have had, and the research they review done by others. NO TWO are going to give you exactly the same information, because they have life-experiences that differ, and beliefs and amount of time to read the latest research, it isn't that cut & dry... you will get different opinions. If you read the blogs by patients with Chiari, you will notice one problem "we" as patients and relatives/friends of patients have is getting stuck in a mindset "it MUST be Chiari" . I am right there, but realizing that might be part of the problem, I have gathered the strength to step away and question whether or not it truly might be something else.
My daughter has a severe neck & shoulder blade injury as well as the Chiari. She had the decompression 6 yrs ago and has every symptom plus some again now. So we have done the rounds, asking opinions, eight doctors 8 opinions. When we put them all together though we see a "trend".... Only The Chiari Institute said it was too conservative of a decompression originally. Every other DR said it "looked ok" but the symptoms can not be ignored. Then a DR in Johns Hopkins mentioned something NO ONE ELSE said... her neck is too straight. There is no more curve. The lack of a curve is adding to the brain stem compression from the top of the vertebral column. The last Physician we asked to review her films was DR Batzdorf in CA.
His response is
Dear Ms. Tomas,
I have reviewed Jean’s studies, with particular attention to the question of cerebellar slumping which you raised in your January 2nd e-mail. I do not see any evidence of slumping on the studies you sent me (October 3, 2008 and June 3, 2009). The only possible explanation for some of your daughter’s symptoms might be that the dens, the elongated part of the 2nd cervical vertebra, is tipped back slightly. The February 26, 2009 study shows that when she bends her head/neck forward, the tip of this dens makes contact with the brainstem; when she extends her head/neck (bends it backward) this is not the case. I don’t actually see any “pannus” such as you mentioned under “possible Dx”. The question of cranio-cervical instability can be evaluated with plain X-rays of the neck, taken in flexion and in extension, with a comparison made to see whether there is abnormal motion.
One of the leading experts in this particular aspect of Chiari is Dr. Arnold Menezes who contributed a chapter to the Chiari Handbook which you mentioned. He practices in Iowa City, which isn’t so terribly far away from you. I would suggest that you try to arrange a consultation with him.
Sincerely, Ulrich Batzdorf, M.D.
Since DR B. was the second DR that mentioned the vertebrae impinging on the brain stem, and the brain stem can have all the chiari symptoms (plus some) we are finally going to leave the chiari alone.... and follow up with the neck problems.
But as you can see, it took EIGHT specialists to get to an answer that we now hope will have a positive result. The moral of our story, is don't give up, don't get stuck in your own beliefs too hard, there may be another reality under the surface. I wish you nothing but peace, I know the fear, pain and frustration that brings the tears. Stay strong, ask questions, be your own advocate in health, you will get through this!!
Sincerely,
Lita Tomas
We have tolerated the same scenario for quite some time. Here is what I have come to believe..... Each Doctor is human that factors in his/her personal beliefs and experiences in with the medical training they have had, and the research they review done by others. NO TWO are going to give you exactly the same information, because they have life-experiences that differ, and beliefs and amount of time to read the latest research, it isn't that cut & dry... you will get different opinions. If you read the blogs by patients with Chiari, you will notice one problem "we" as patients and relatives/friends of patients have is getting stuck in a mindset "it MUST be Chiari" . I am right there, but realizing that might be part of the problem, I have gathered the strength to step away and question whether or not it truly might be something else.
My daughter has a severe neck & shoulder blade injury as well as the Chiari. She had the decompression 6 yrs ago and has every symptom plus some again now. So we have done the rounds, asking opinions, eight doctors 8 opinions. When we put them all together though we see a "trend".... Only The Chiari Institute said it was too conservative of a decompression originally. Every other DR said it "looked ok" but the symptoms can not be ignored. Then a DR in Johns Hopkins mentioned something NO ONE ELSE said... her neck is too straight. There is no more curve. The lack of a curve is adding to the brain stem compression from the top of the vertebral column. The last Physician we asked to review her films was DR Batzdorf in CA.
His response is
Dear Ms. Tomas,
I have reviewed Jean’s studies, with particular attention to the question of cerebellar slumping which you raised in your January 2nd e-mail. I do not see any evidence of slumping on the studies you sent me (October 3, 2008 and June 3, 2009). The only possible explanation for some of your daughter’s symptoms might be that the dens, the elongated part of the 2nd cervical vertebra, is tipped back slightly. The February 26, 2009 study shows that when she bends her head/neck forward, the tip of this dens makes contact with the brainstem; when she extends her head/neck (bends it backward) this is not the case. I don’t actually see any “pannus” such as you mentioned under “possible Dx”. The question of cranio-cervical instability can be evaluated with plain X-rays of the neck, taken in flexion and in extension, with a comparison made to see whether there is abnormal motion.
One of the leading experts in this particular aspect of Chiari is Dr. Arnold Menezes who contributed a chapter to the Chiari Handbook which you mentioned. He practices in Iowa City, which isn’t so terribly far away from you. I would suggest that you try to arrange a consultation with him.
Sincerely, Ulrich Batzdorf, M.D.
Since DR B. was the second DR that mentioned the vertebrae impinging on the brain stem, and the brain stem can have all the chiari symptoms (plus some) we are finally going to leave the chiari alone.... and follow up with the neck problems.
But as you can see, it took EIGHT specialists to get to an answer that we now hope will have a positive result. The moral of our story, is don't give up, don't get stuck in your own beliefs too hard, there may be another reality under the surface. I wish you nothing but peace, I know the fear, pain and frustration that brings the tears. Stay strong, ask questions, be your own advocate in health, you will get through this!!
Sincerely,
Lita Tomas
With regard to the blood tests.... sorry, I got on another tangent there...
On the order, he has checked: Creatinine, Electrolyte Panel, CBC, Sed Rate (Westergren), Free T4 Index, TSH, Folate RBC & Serum, Vitamin B12
Is there anything else he should be looking for on there? I mean, if I'm having it done, he should just go all out. Someone did say that they should do an ANA... I think to look for autoimmune deficiancy? (I may be wrong on the test, but for those type of things.)
What's he looking for? He's not giving me lots of input here. Like he had me go to an Ophthalmologist, but wouldn't say why... even after my sister and I both asked him. I don't trust the ophtho's opinion tho, as he also said (with regard to the busted blood vessel in my eye) that the only way you can have a broken blood vessel in your eye is by rubbing your eye. I KNOW this is not correct. I've seen people who were sick and either coughed really hard or vomitted, and broke vessels. My dad also had TIAs and strokes and got a broken blood vessel in his eye during one of them. Seriously, who do you trust with your health?!
Thank you again... I so appreciate your wisdom!
Blessings!
On the order, he has checked: Creatinine, Electrolyte Panel, CBC, Sed Rate (Westergren), Free T4 Index, TSH, Folate RBC & Serum, Vitamin B12
Is there anything else he should be looking for on there? I mean, if I'm having it done, he should just go all out. Someone did say that they should do an ANA... I think to look for autoimmune deficiancy? (I may be wrong on the test, but for those type of things.)
What's he looking for? He's not giving me lots of input here. Like he had me go to an Ophthalmologist, but wouldn't say why... even after my sister and I both asked him. I don't trust the ophtho's opinion tho, as he also said (with regard to the busted blood vessel in my eye) that the only way you can have a broken blood vessel in your eye is by rubbing your eye. I KNOW this is not correct. I've seen people who were sick and either coughed really hard or vomitted, and broke vessels. My dad also had TIAs and strokes and got a broken blood vessel in his eye during one of them. Seriously, who do you trust with your health?!
Thank you again... I so appreciate your wisdom!
Blessings!
Thank you both so much for you support. Shannon, I would love to have both emails. I am hoping I can stop through CO on the way back to Indiana. It has cost me a lot to come out here... stay here... and my out of pocket since they let all of this go into the new year. That makes it even more frustrating.
Wisconsin is closer to home, and I do have a cousin in Kenosha, about an hour away from the doc. She has Chiari too, and I have been trying to talk her into doing the study with me, but...? I finally emailed Duke and asked if they could send me the details of the study. I figure is nothing else, maybe I can at least get some support through them with meds and medical stuff if I do their study. ??? I guess I'll find out once they send the info.
I know I'm asking for the moon here in trying to get into these other docs, but I time is just something I don't have enough of right now. I don't know what I will do in April... I just don't.
Thank you both for "listening" to me vent... and offering me your care, support and information. Much appreciated!
Blessings to you both!
Wisconsin is closer to home, and I do have a cousin in Kenosha, about an hour away from the doc. She has Chiari too, and I have been trying to talk her into doing the study with me, but...? I finally emailed Duke and asked if they could send me the details of the study. I figure is nothing else, maybe I can at least get some support through them with meds and medical stuff if I do their study. ??? I guess I'll find out once they send the info.
I know I'm asking for the moon here in trying to get into these other docs, but I time is just something I don't have enough of right now. I don't know what I will do in April... I just don't.
Thank you both for "listening" to me vent... and offering me your care, support and information. Much appreciated!
Blessings to you both!
Lori, i'm so sorry! That is extremely frustrating! I do have dr. Oro's assistant Kelly's email. I'll look it up for you! All i can tell you is email her and she what she says. Also, have you looked at dr. Heffez in wisconsin? He reviewed my mris in less than a week and i'm seeing him on feb 17th, he does a day and half of testing before i even see him. I could have gone as early as next week but i needed to wait til the 15th for my own reasons. I have Renee, dr. Heffez's assisstant's email too if you need it. I hope that helps! Shannon
COMMUNITY LEADER
Hi Lori,
I am so sorry u r having such a frustrating time...many of us have had these experiences even with "chiari drs"....I can not fathom that ur chiari herniation shrunk, but Dr B is measureing differently than the radiologist or NS that gave u the original dx.
If u have the lab rx can u read what it says to see what he is ordering to be done?
AS far as Dr Oro, I believe Shannon has been in touch with his assistant and can offer u some info...I can only suggest u get that info and express to his assistant that u r in a time crunch and see if they can rush ur review...I also know he charges $40.00 to do the review.
The best piece of hope I can offer is to tell u to re read Dr Oro's poem....it still helps me feel better, but to know there r drs out there that understand can give u hope after this disappointment.
"selma"
I am so sorry u r having such a frustrating time...many of us have had these experiences even with "chiari drs"....I can not fathom that ur chiari herniation shrunk, but Dr B is measureing differently than the radiologist or NS that gave u the original dx.
If u have the lab rx can u read what it says to see what he is ordering to be done?
AS far as Dr Oro, I believe Shannon has been in touch with his assistant and can offer u some info...I can only suggest u get that info and express to his assistant that u r in a time crunch and see if they can rush ur review...I also know he charges $40.00 to do the review.
The best piece of hope I can offer is to tell u to re read Dr Oro's poem....it still helps me feel better, but to know there r drs out there that understand can give u hope after this disappointment.
"selma"
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