I haven’t really posted on here before (except a quick intro) and I am not really sure why I am posting, except that I am nervous, scared, and feeling overwhelmed. I guess I just need reassurance that I am not alone in this. So, I have a 5mm herniation that has slightly compressed my spinal cord. On Tuesday, I have a CSF Flow Study to see if the CSF Flow is affected. I have waited 6 months for this test. It has been the longest 6 months ever. Although I have daily symptoms that I swear are related to the chiari, this past week has been so much worse. It is like I am in some kind of flare up. I have had a constant, horrible headache along the lower ridge of my skull in the back (where skull ends and neck begins). It goes from one ear to the other. It pushes into my eyes and causes them to water and my ears to ring. These headaches are horrible.
I am so nervous about the flow test, as it will most likely determine my next step forward. I almost want the flow to be obstructed because than they will take me seriously. I am scared that the flow will show as being fine and then I will continue to be in this weird state of flux. I just want answers and want a path forward. This limbo state is nerve-wracking.
Any advise, guidance, or even support is greatly appreciated.
It is hard to be patient when a wait can be 6 months or more. I have experienced that as well. For me, it is not only humbling, it makes me feel insignificant at times. It also tells of a drought in our country of highly skilled health care professionals. I have a pineal tumor which is said to be from the back up of CSF.
However, you are definitely not alone and yes, it can be really scary. People won’t always answer right away on here, but you will find comfort and some good advice. I am going through a bad time too lately. Also, you might want to find a mild anti-depressant or herbal remedy that might assist and stabilize your moods. Because yes, it is hard to keep functioning in a world that tolerates nothing less. Keep your chin up……and check onto this website every so often. It might help just a little…take care….
I know what you mean. I had a flow study two months ago. It showed diminished flow in the back normal in the front. Diminished. Not blocked. So as you describe I feel like I’m in limbo now. However I reached back out to my docs this week (having a similar flare up right now). One said there are stand up MRIs in our area that might show something different. I am certain it will because when my head is straight up or back I literally feel it filling up and immediately have an array of symptoms. My solution in the meantime is to just keep my head forward a bit to avoid the pain. I even found an article that showed how Chiari malformations tend to be worse in standing up MRIs than the traditional. The other doc is referring me to the hydrocephalus clinic at Hopkins. So at least they are still taking me seriously when it comes to my symptoms even if they haven’t seen what surmise is going on in their pictures.
That said - the best we can do is have hope. If anything, the fact that you are having a flare up might mean a better reorientation of what’s going on with you in the MRI. Best wishes for a healthier new year.
I was just reading what you wrote and was not even aware there was such a thing as a standing up MRI. Thanks for posting. I think it would be interesting to get one as opposed to one where I’m laying down (one I always get). I would think the results would be significantly different. Thanks again.
Thank you for posting! I was wondering if there was an “in-between” area or
not. You answered my question. I have also been curious about the
vertical MRI. Since you are being referred to Hopkins, that means we are
somewhat close. My dr conducting CINE MRI is Dr. Luciano at Hopkins. He
is actually on the board of the chiari foundation (i forgot fu name of
organization). It took forever to see him but I hope it was a good choice.
i was kind of frustrated at last appointment though, in that i only spoke
with him for about 5 mins. I felt like he was downplaying what i was
experiencing. He was very easy to talk to though so maybe this time I can
be more assertive.
Sorry, I rambled, I’m just getting more and more restless. My appointment
Thanks for replying.
Do you mind me asking where you are located?
Hey there. Looks like we are pretty close. I’m in fairfax and i’d love to connect with Chiari people in the DMV. Ihope your appt is more involved next time. Most docs have just been brushing me to the side because I don’t have a syrinx. I’m glad I don’t have one, and of course I’d rather not cut my head open if I don’t need too- but my Chiari symptoms are so intense at times I wish they would spend more time listening and believing me. I’m glad my neuro is sending my case to Hopkins. Let me know if you have a better experience this next time. I’d love a recommendation on a good doc there.
I don’t have good advice, but I’m sorry that you’re going through this. I hope your MRI went well, and that you have a productive followup with Dr. Luciano. I saw Dr. Weingart at Hopkins, and we talked for about 15 minutes at my visit. My visit was informative, and I felt like he listened to me and addressed my questions. I had the cine flow study (also at Hopkins) as a followup to provide more information about whether or not decompression surgery would be helpful. Like littlekt2, mine also showed that I had robust flow in the front and “less robust” flow in the back, but the report noted that this was not uncommon, even among people without Chiari. (Mine is about 7 mm, and I’m in lower Delaware.) I’m a little frustrated too sometimes that the guidance I receive isn’t more helpful or decisive- the advice has been to try out the available non-surgical pain management therapies (meds, physical therapy) and come back to Dr. Weingart if I cannot manage my symptoms through these therapies.
Fingers crossed for you
Thank you for your response. Yes, my MRI went well. Flow was not
affected. I feel like it is a double edged sword though. With flow not
being affected by the Chiari, Dr. Luciano does not believe that the Chiari
is the cause of my symptoms. So, I am continuing to work with a
neurologist to figure it out. I go tomorrow to discuss the possibility of
a spinal tap. It is all so confusing, frustrating, and exhausting. There
are these moments where I just want to give up but then I look at my family
and realize I can’t. Pain sucks.
Thanks for your support, I really appreciate it, as it is really needed.
I heard the same thing from Dr. Weingart, so I hear you and I think I understand what you’re going through. I started an anti-inflammatory diet today (you never know… maybe every little bit helps?) and might try acupuncture next.
I take Topamax now and I don’t love it and don’t want to increase my dose, and my neurologist would recommend something like Botox next, which I’d also like to avoid.
If anything turns out to be helpful, I’ll let you know!