Chiari malformation

[LoriW]

[QUOTE=Lauruffian;7412891]
I just do not understand why neurologists are so dismissive of this. I will be sharing the Washington Post article with friends and family and certainly PMing you in the near future as well.[/QUOTE]
I think a major part of the dismissiveness is a real lack of understanding and awareness by neurologists of Chiari in general [and they SHOULD know]. And, then unfortunately ego comes into it because if you come to them with your thoughts and research like I did and they don’t know about it, they dismiss you out of hand.

Also - the problem that I have found now unfortunately is that [for me], I had to have the surgery once they found the syrinx [cyst] in my spine which goes hand in hand with Chiari but now I’m dealing with a whole host of other issues that some of us who have the surgery wind up having. I started having pressure headaches afterwards, had a surgeon up at Hopkins who will go unnamed who decided that he knew exactly what was wrong, that I needed to have a titanium mesh plate put over the skull that was taken and that would solve everything. Well, that surgery caused major complications and was probably an unnecessary surgery.

The good news is that I still go to work, AND I still ride! I did give up jumping, I thought that might be pushing my luck a bit having a big old hole in the back of my head. Yes, I have a headache EVERY day due to this high pressure but… riding is my release and relief and makes me forget about the pain while I’m with him. And… it could be worse I remember one of my doctors saying, if you come out of brain surgery walking and talking its a good day!

[elmerandharriet]

I have reduced flow the pressure builds up and I can’t walk right… for example today I was loading up veggies for my guinea pig and couldn’t walk straight so I walked right into the oranges and all over the floor they went!

I think it is hard not to give up, today I had a family function my head/neck are burning so tomorrow my ride will be walking and walking only. My doctor did say that riding has kept me more functional than others. Chiari isnt an easy journey and my horse has kept me going… consider trying to get classified in para dressage or reining or driving anytime we get chiari out yhere it spreads awareness. We need to get it out there on the forefront, getting doctors to read and believe in.our suffering is key. I think this is rambling and probably doesn’t make sense but im in drugcoma now

[starrunner]

Glad to hear everyone else…

Not diagnosed, but it’s been weighing heavily on me.

I had a work related back injury a year + ago and I was in talking to the back dr hoping to close my work comp case when he was reviewing my MRI again, going through reflexes, pain, and all that when he excused himself, scurried from the room to talk to radiology, came back with students in tow…he is now thinking Chiari.

Cool.

They rescinded the original radiology report and think there’s a syrinx that’s just a faint shadow on the MRI. But they want new MRI with contrast to be certain and a cervical MRI.

I’m assuming this is a logical progression?

Now if I can finally get through the insurance entanglement. Even with a lawyer, this has been messy. Primary says it’s work comp, work comp says my case is closed and round and round we go. I just want an answer.

I hate this uncertainty.

On top of this, I am a gumby person too…EDS.

Makes me very nervous.

But I just have really thought that people are supposed to be this way. Never really realized the pins & needles, headaches, etc.

And not sure if I’m just a klutz (one of my old nicknames was “Grace”), but I can be very shaky. Walking down a hallway, I can sometimes look like a pinball. Not intended.

Not really sure the point of my post, but just hate this uncertainty. But getting a diagnosis makes me very nervous as well…

[ksojerio]

My son, age 23, is 1 month post surgery for Chiari which was performed by Dr Z at Barrow Neurological Institute, Phoenix. The doctor said that if he didn’t have the surgery he would eventually become paralyzed.

Dr. Z performed neurosurgery on the singer Brett Michaels and retired baseball player Joe Garagiola.

His symptoms first appeared in Oct. He complained of numbness, tingling, burning and loss of feeling in his left hand and arm. Local doctors misdiagnosed it as a pulled muscle in his shoulder.

Within 3 days he was out of the hospital and feeling was returning to his hand. He also has several large syrinxes that have formed as a result of reduced CSF flow. According to the DR, they will probably disappear in the next few months.

[PeteyPie]

[QUOTE=ksojerio;7421161]
My son, age 23, is 1 month post surgery for Chiari which was performed by Dr Z at Barrow Neurological Institute, Phoenix. The doctor said that if he didn’t have the surgery he would eventually become paralyzed.

Dr. Z performed neurosurgery on the singer Brett Michaels and retired baseball player Joe Garagiola.

His symptoms first appeared in Oct. He complained of numbness, tingling, burning and loss of feeling in his left hand and arm. Local doctors misdiagnosed it as a pulled muscle in his shoulder.

Within 3 days he was out of the hospital and feeling was returning to his hand. He also has several large syrinxes that have formed as a result of reduced CSF flow. According to the DR, they will probably disappear in the next few months.[/QUOTE]

I hope you will post a follow-up in a few months with news about the syrinxes and let us know how your son is doing. It is wonderful that he is recovering so quickly. How was the rest of the recovery? I’ve heard that the headaches can be bad for a day or two after surgery.

[Lauruffian]

I sent my records, MRIs, etc. off to the Chiari program at UCLA yesterday. The doc will review my material and then they will contact me to let me know if they consider me a Chiari case. In the meantime, I see my new neurologist tomorrow…I have hope that she’ll take the Chiari more seriously, but we’ll see. The more time passes, the more symptoms develop, the more convinced I am the Chiari is behind a lot of my issues–but perhaps I’m just convincing myself, I dunno. My continued fear is I’ll be told it’s nothing, la la la, move along. I’d like someone to at least investigate further if I’m to be truly reassured of that.

[ksojerio]

[QUOTE=PeteyPie;7421726]
I hope you will post a follow-up in a few months with news about the syrinxes and let us know how your son is doing. It is wonderful that he is recovering so quickly. How was the rest of the recovery? I’ve heard that the headaches can be bad for a day or two after surgery.[/QUOTE]

He had one very bad headache abt 5 days post surgery (early January). Since then he has had no problems with recovery. April 9 he will have another MRI to check on the syrinxes.

[romewhip]

I have just been diagnosed with syringomyelia, and will soon have yet another MRI to rule out chiari. It appears that my syrinx is traumatic, based on the location in my thoracic spine, and it’s not from a fall I had fairly recently from a horse- it’s much older and had been troubling me for some time. I just didn’t know that the symptoms I’ve been having could have anything to do with my back. I’m so happy to find other riders with this, I’m getting a big dose of therapy in still being with the horses.

Even on days I can’t ride I still groom and work with them, and it helps a lot. I walk poorly now, and use a walking stick or cane, and am surprised at how little the horses care. I’m also blessed to be able to ride an old red mare who doesn’t mind my crooked legs, and half paralyzed left leg, and wobbly balance. This whole process is not my idea of a good time, but I’m lucky I can still be with the horses and work full time.

[justkidding]

I am so glad I found this thread. My headaches have been debilitating lately and it has got me very down. It’s nice to hear others’ stories about successes. I really liked being able to read about Taylor Flury and her story in COTH, I feel like it brought a lot of attention to a pretty unknown disorder.

[Lauruffian]

I am so glad for this thread as well. I’ve had a rough month and change chasing things down and getting dismissive (to outright disparaging) comments from doctors who quote inaccurate/outdated information to me about the condition. I keep hearing the herniation is too small to be behind my symptoms, and yet I keep finding highly reputable online sources directly contradicting that.

The second neurologist I saw dismissed the Chiari and actually said I wasn’t herniated at all (???), and was convinced something autoimmune was going on. She sent me on for a massive amount of bloodwork (all negative), then an EEG (normal), then a cervical MRI (suspecting disc involvement, which there wasn’t). As I assumed would be the case if it is Chiari, everything was normal–except the MRI showed a Chiari with about a 4mm herniation. My neurologist said nothing about that and just said the MRI showed muscle spasm (it doesn’t–it says there is some cervical straightening “possibly due to” muscle spasm). UGH.

But, I got in with Dr. Batzdorf at UCLA after sending in all my records, MRIs, and symptoms list–he only sees about half of those who submit their information, and that he sees something in my records to approve my appointment says a lot. I see him next Thursday

Meanwhile my symptoms keep progressing–my hand tremors are worse, and lately, the left is consistently worse. Headaches are nearly daily and wax and wane in severity throughout the day. Every time I sneeze now, I get a feeling of ants crawling up my head, and I’ve had at least once incident of sleep apnea/stopping breathing at night that my husband (who’s shared the bed with me for 13 years and never observed this before) woke me up out of.

Oof. I’ll post what Batzdorf says.

[elmerandharriet]

Get an upright MRI it will most likely show your herniation as it is… whether its blocking csf flow or not. A surpine wont show this unless its bad bad but since we spend most of our lives upright get an upright. I have been in and out of the hospital 7 times this month. God I hate chiari… on top of that EDS is kicking my ass, I have cervical instability now sooo back to Dr. Henderon I go! Do your self aa favor get an upright mine went from 3-4 to 5-6 with cervical instability they thought I ws just complaining about my neck now I have proof!

[Lauruffian]

I’ve wondered about that elmerandharriet, but no one has thought it necessary. Dr. Batzdorf at UCLA more or less ruled out the Chiari as being behind my symptoms. Still, when he did the neuro exam, more issues were found: I’m numb to temperature on the lower right leg, can’t balance myslef if I’m standing with my eyes closed and feet together, left side is still weaker and tremor still worse than right side. I’m totally confused.

So, back to the neurologist I went, and more tests I’m having. I had a lumbar puncture Friday and am now dealing with a spinal headache if I’m upright for very long. I’m having a thoracic MRI in a week and change so we’ve imaged the entire spinal cord, too.

I’ve heard about CINE and upright MRIs, but none of my doctors have said a word about them. When I mentioned a CINE MRI to my PCP, she had no idea what it was. :sigh:

This search is exhausting.

[LoriW]

CINE MRI’s are the most important to determine the flow of CSF. Be adamant about having one because without it, they cannot see the CSF around the brain (or lack thereof). Once I had my CINE done, they could tell there was a “trickle” of CSF getting to my brain and that, combined with my syrinx, necessitated the surgery asap!! You have to be your own advocate with this, nobody else will!! Be strong and firm and demand the tests that are necessary. Feel free to PM me if you need to!

[romewhip]

Seconding LoriW- be insistent. Who cares if they think you’re a pill or your symptoms can’t have anything to do with anything?

I’m basically starting over after a bunch of really aggravating issues with my first neurosurgeon. It’s my body, my treatment, and they have no information or communication for me. So lots of homework, weeding out the misinformation, and now I’ve got a little bit of a plan together when I meet with the other neurosurgeon. My syrinx is much larger than I’d imagined it could be, so I want to know what they plan to do with it.

[PeteyPie]

[QUOTE=Laurierace;7411984]
It is interesting how often this seems to be getting diagnosed now. I saw a program on Discovery Health many years ago where a young woman had severe headaches that weren’t responding to treatment over the period of a year or so that degenerated to the point that she was wheelchair bound. They finally made the diagnosis and did the surgery and she was a new woman. Seeing how debilitating it was for her would definitely make me want to avoid getting to that point if possible. Jingles for all of you dealing with this.[/QUOTE]

I saw this too. The most interesting thing about that program was that her MRIs did not show anything odd. When it was finally operated on, the doctor said the tonsils were in an odd position which didn’t show up well until he saw it in the surgery. Something about the tonsils being low in the middle and not showing up on the traditional/standard MRI because they needed to be taken from a different angle.

The show was “Mystery Diagnosis: Blood & Fire” Episode 6 from Season 1. I did a quick google search and didn’t find it on youtube, but a deeper search might find it there. It might be on Netflix too.

[Lauruffian]

PeteyPie, that episode was just on the other day and I recorded it. I searched in vain weeks ago trying to find it online, but could never find more than about 2-3min of it.

Here’s what has given me pause in continuing to pursue the CM. Batzdorf spent 90min with me, very thoroughly checking me over and frequently referring to my MRI. One thing he did was very carefully (and repeatedly) check my eyes–he turned off the lights and looked very attentively at the back of each of my eyes. What he was looking for was a certain pulsing in the back of the eye that shows CSF pressure is normal–he said seeing it is an indicator pressure is normal throughout. NOT seeing it suggests a CSF blockage or increase in cranial pressure–but he clearly saw it in both eyes. This was done with me sitting upright.

He went over my MRI in multiple views, showing the brain stem has room for flow, and seemed generally, ultimately unimpressed. That said, he wanted to see me, and he hand selects patients, so he saw something that made him okay my appointment. He told me later that he wanted to see me in person to determine whether he felt CM was playing a part.

I didn’t ask about the CINE MRI, but perhaps I should have.

I had a lumbar puncture last Friday as two docs wanted to look a little more closely for MS; they wanted to see antibody numbers. The preliminary report is that everything appears normal, but it’s not official yet.

I’m dealing with nasty spinal headaches now, though, but thankfully it seems limited to only when I’m sitting. I’m hoping they’ll gradually get better so I don’t have to get the blood patch; I’m rather over having needles in my spine at the moment.

I’m getting worn out and am rather done with what feels like a completely futile chase. The constant tests and exams yielding nothing is discouraging, to grossly understate things.

I have a thoracic MRI next week–that was ordered so we’ve seen the entire length of my spinal cord. We’ll see how that goes and what the next step will be.

[elmerandharriet]

Have any of you with pressure issues tried diamox? Its been my life saver! Between that and the occipital nerve stimulator I feel like I could go back to horses full time!

[PalominoMorgan]

I live on diamox. Last time my dosage was reduced BAD BAD things happened.

[Bedazzle]

I’m so disheartened to see so many having to convince doctors to help them, and doctors so reluctant to do the surgery. For me the time from diagnosis to surgery was approximately 4 months. I don’t know if my case was just so straightforward that my surgeon was easily convinced to do the surgery or what - but I am so sorry for you all going through this. I’m in Ohio and my mom recently had a spinal surgery herself so I can recommend a couple of excellent doctors if you need a referral.

[Lauruffian]

I wound up sending a Hail Mary pass out to Dr. Bolognese, formerly of the Chiari Institute, now at the Chiari Neurological Center. I have some reasons to suspect I may have a connective tissue disorder as well (Ehlers-Danlos or similar) so I was curious what he’d say. He has all of my paperwork and MRIs; I’m in the wait-for-them-to-call-me phase now.

My neurological symptoms continue to multiply, and outside of the Hail Mary that I did on my own, the docs are at a loss and we’re just waiting and seeing what else changes. In January, they’ll redo all of my MRIs to see if there’s been any changes as that marks one year since my initial MRI tests.