Seen Dr. DI today. Questions?

[DechenDolkar]

I had my first appointment with Dr. Di today. He was very nice but I did feel rushed and I have some questions. He said that looking over my MRI's that the Chiari has progressed to 6mm and confirmed that my headaches, neck pain, dizziness, tingling hand and rapid heartbeat are caused from the Chiari. He said that surgery is always the last resort and felt my symptoms were mild. What should I expect if these are MILD symptoms? I was very relieved that he does not feel that I need surgery right away but in the mean time I can bearly function with these headaches. He wants to see me in 6 months and repeat the MRI. He was unable to pull up my spinal MRI that I had awhile ago. I asked him what to do in the mean time and he suggested that since he only deals with surgery to go back to my neurologist. That problem there is that he is an MS neurologist who dismissed the Chiari in the first place and told me it had not progressed. It leads me to wonder what he could do for me at this point. I am not sure where to turn at this point. It doesn't seem that there is much out there to help pain wise. I am afraid that since it has progressed that it will continue to do so. Is this typicaly the case? Any advice? I am so frustrated!

[ChiariWolf]

:-) tell you want. I'll send you friend inviatation. Once you accept that you'll find a journal I"ve written. It contains a good share of my life but as soon as I can we'll sit down and see if I can't put a bit more specifics in a PM to you. I'm on my way out the door right now as I"ve 2 bible studies to conduct this morning. Now I do have chiari... so if... or when I forget to respond with the PM please don't take it as I don't care. I go from one end of the house to the other and forget what I was going to do. :-]

Again, not a brush off here, just didn't want to wait to answer you but really am a bit rushed right now.

Wolf

[DechenDolkar]

Hi Wolf,
I am definelty not looking for medication or surgery. I am really sensitive to medication and the only thing I really take for this is a 1/2 of a muscle relaxer at night. I am hoping to be able to try a tens unit at some point. As far as the surgery goes, of course I don't want to have brain surgery, however I also hate feeling the way I do and fear that this will progress to that point. I am just really confused and shocked at this point after going so long with pain and finally finding out the real reason for it. The fear of knowing that there's not much out there in the way of help makes me feel really hopeless. Right now I want answers and as it seems with most of us this is a very frustrating condition. I am also concerned that it is progressing and that he is only looking at my brain MRI, I want to know excatly what is going on. I would really love to hear your story if you wouldn't mind sharing it with me. You could send me a PM if you would rather. I am interested in knowing how you felt and how you found out about it and how bad yours was when you did. Did it progress, etc. Also, when you seen Dr. Di the first time did he have you come back to be monitored? You also mentioned that you seen another doctor, did they both have the same opinion? Thanks so Much!

[ChiariWolf]

Yes, it gives the doctor a much better view of what is going on inside.

I don't know your situation specifically. But I will say this, if this particular Dr feels you are on too many meds you will go on the back burner due the risks. If he sees that you wish to remain drug free he'll stick his neck out for you. He also kind of waits for you to describe exactly how you are feeling. He does this in part because they are discovering that Chiari should be dealt with accourding to the severity of the symptoms. The way he described it to me was that because you are working so close to the brain the surgery itself can trigger paralysis, stroke or even death. Thus many doctors are very careful about doing this surgery on just anyone. If your symptoms are to point of being severly life limiting then those are the symptoms he needs to hear about. Because Chiari messes with our thinking processes so much I hate to be more specific for fear of subconsciencly making you focus on those symptoms. However, if it would help you to know what I mean PM me and I'll be more specific as to what made him decide to do the operation on me. Keep in mind that others it may have been very different trigger points.

Perahps keep in mind too that even though IMO Dr Di is an awesome Dr, he is human and could be wrong. There are other 'very' compentent Chiari Doctors there at CCF. My first pick was Dr Benzel [sp?] but Dr Di and Luciauno {sp?] got me in first.

Wolf

[survivor08]

My pain doctor prescribed me my TENS unit.  Probably any of your doctors would prescribe one.  My insurance paid for mine fortunately, but I have heard you might be able to get one on Ebay if insurance wont pay?  Worth checking into w/doctor for sure.

I had the MRI w/cine done last friday.  It didnt seem to take too terribly long, but I was so relaxed I kept "jerking" LOL  but guy said my head stayed nice and still so I was good.  But then they called me monday and ask for me to come up there "asap" b/c they saw something they didnt expect......being a cancer survivor that was NOT something I wanted to ever hear again!  SO I said "ummmm I need a bit more details plz".  Anyway he said my flow numbers were not what they had seen before so they needed more data to accurately interpret them.

I hope to p/u the results tomorrow as I am DYING to see what the outcome was!

[DechenDolkar]

Thanks! I loved your explaination. So in a nutshell it is a very detailed MRI? How long were you in total?

I feel so lost and frustrated! I was really hoping for more answers from my appointment today. I don't know if he was just super busy or what, but I felt really rushed and now I am left with unanswered questions and no one to ask them to. I am going to see my neurolgist on Monday but I am not expecting much. In the mean time I will call Dr. Di's office and ask for the notes and about the CINE.

Thanks!

[ChiariWolf]

Well this is scetchy because I'm not a professional by any means. But to the best of my understanding:

A normal MRI takes pictures in slices. For example if you take chocolate bar and slice it into 4-6mm strips you would get a pretty good idea of what was inside of it. This is what a normal MRI does. How thin the slices, or pictures, are is dependant on the Machine used and the settings of that machine.

A CINE MRI takes much thinner slices. So now you cut that same choclate bar into 1mm slices. This reveals to you 'yuck, they dog was around when they poured this candy bar but cause now you can see that the candy bar has minute peices of hair and dirt in it. Things that couldn't be seen with the normal example above. What this does is allow the Dr to see exactly where you may have blockages. You could have a blockage in CSF that isn't revealed in the normal MRI whereas the CINE would reveal it. Not very fun to have done though. At CCF it took close to an hour for each area scanned..

[DechenDolkar]

Thanks wolf I will do that. Could you tell me exactly what the CINE test is and what is involed?

[ChiariWolf]

No CINE???? That does sound strange. I"d call back his office and ask that question. Why was there no CINE preformed? And how was a dx made without the CINE? I would also request copies of Dr Di's notes from your visit for your records and inform the Nurse [she will call you back normally] that you need these notes to share with the NL.


Wolf

[selmaS]

I am also surprised the NS did not ask for a full spine MRI or a CINE....how does he know if u have a syrinx?...the MRI may show a increase in the herniation but if the tonsils r long and thin they may not be blocking CSF and he may feel confident the CINE is not needed.Plus, if u do not have a CSF blockage or overcrowding the NS's r more reluctant to do surgery. and PM is suggested.

I agree u do need to be monitored....and u will want to be involved in PM. I have not used a tens but many have and like the way they work.

A NL is the diagnostician and y the NS sent u back to him...not necessarily the MS one..but a NL would be the one to monitor u and make sure u do not have other issues going on.The NL would be the one to move forward with the other MRI's.( I had my PCP rx them per the NS's suggestions)

Keep in mind if u have ne change in ur symptoms u must call the NS right away.

"selma"

[*Stormy*]

Come to think of it yes..you would think that a CINE MRI would be on the list of tests. Might be a reason to get a 2nd opinion.

As for the TENS unit, I had to get a prescription from my PT to be able to get one. She recommended I rent one first before buying to make sure that it would be helpful to me.

Carolyn

[DechenDolkar]

Thanks for your replies! Do you think that it is odd that he didn't want to do a spine MRI or a CINE MRI? Of course I didn't think of that until I got home, guess I was expecting more from the appointment. As far as the TENS unit goes, is that something your doctor prescribed for you? Thank you both for being there!

[survivor08]

My herniation progressed from 5mm to 7.1mm in two years, so I know that Chiari can progress, I dont know if that is common or uncommon.  Some of the ladies on this forum are very knowledgeable about this and I am sure they can better educate you/us on this.

Pain wise, I take "Ultram" b/c it is NON-narcotic. It use to totally rid me of pain, but I suppose the progression explains now why it only knocks the edge off-but I'll take what I can get.  If your headaches seem to coincide with muscular pain in your neck and or upper back/shoulders, then a TENS unit will be a huge benefit.  My headaches are directly tied to the muscle tension and if it werent for my TENS unit, I would have jumped in front of a train by now.....jk :)

I would get a second opinion if I were you.  I have read about Dr. Di and I am sure he is top in the field, but it doesn't mean his medical opinion is always right.  See another specialist and if they tell you the same thing, then you will know.

I think they looked at all the therapies and treatments you have tried to decide what to do.  In my case, I have exhausted every single one known to man except surgery.  But my list is very long and covers the past 13 years.  And if I had it to do over again, I wouldnt change a thing b/c you dont want to have your brain operated on unless there is no other option.

If you want to, you can list the treatments, therapies, medications you have tried and I am sure some of us can offer suggestions-if nothing else, just to give you some relief until you can get another opinion , etc.

[*Stormy*]

Yes, that is very frustrating...and it could definitely continue to progress which is why he is seeing you in 6 months. That is a very good thing that he is going to continue to follow up with you.

MILD symptoms?? I love that one, since when is any symptom of Chiari mild?? It is kind of a balancing act...most NS want to make sure the symptoms warrant the risks of surgery but then you don't want to progress to the point that you have permanent damage. From what I have heard DR. Di is very good on being able to assess Chiari but there is always the option of a second opinion if you are not sure.

As for the neurologist, now that you have got a reputable NS saying "Yes! This is causing your problem"..do you think that your NL will change his tune? I would say go back to him and lay the evidence down and if he still doesn't agree with it then it is time for you to find a new one. I found after getting a dx, most drs were much more willing to work with me.

Pain wise, I am afraid I don't have much advice, it has been a constant battle with me as well to find something that works but doesn't affect me adversly. What I try and do most of the time is to avoid things that will trigger it but that isn't always possible. The best thing for me is to rest when my body tells me too, if I don't then there is usually consequences.

I'm really sorry that you didn't get more answers from the NS!
Carolyn