Don’t know what to do..

[Stroud5393]

My symptoms the lightheaded feeling, shortness of breath, and just feeling really unwell and disconnected are getting worse.. Is this signs of progression or worse? I don’t see the neuro until next week but I do have an appointment with my pcp this Thursday. I just don’t know if I can make it till then :(...

[Stroud5393]

Is this still active?

[selmaS]

Hi Yes , sorry I didn't see your update....it soounds like this Dr is not a true Chiari specialist....may I ask what testing have  you had? A CINE MRI? The size herniation should never be a reason to have surgery or not, it should be if there is a CSF obstruction or not that should help decide about surgery....if you haven't had a CINE MRI then the Dr should not make the decision to just wait it out.....do find a Dr that is a true Chiari specialist.

[Stroud5393]

Does this sound like it could be hydrocephalus? Or possibly unrelated to the Chiari like a tumor because my headaches are worse today it’s like a throbbing squeezing pain it has me so worried :(

[washfeet]

Selma gives good recommendations.  Make sure the CINE MRI is vertically performed and not horizontally performed.  

[Stroud5393]

Just a little update I saw the neurosurgeon back in march. He reviewed my scans with me and showed my my chiari saying it was roughly 7mm. He said at this time he does not recommend surgery... He said if I were one of his family members he would tell them the same that its better to wait... I guess I was hoping he would say that I needed the surgery and I could end this suffering.. The past two days have been really bad ive been having horrible pressure in the back of my head. I'm worried its hydrocephalus or something similar. Does the severe pressure warrant a trip to the er??

[washfeet]

Does not recommend decompression surgery? Or does not know of other courses to take? Chiari decompression surgery's goal is to create more room in back of the skull, in the hope of creating more room for CSF flow, and thus/also decompress the cranial nerves.  However, this does not relieve/remove the cause.  Some 20% of Chiarians, we have been told in the US medical community can find a tight or tethered spinal cord (born with this at birth) to be the cause of the Chiari herniation due to the pulling down of the hindbrain by the said tightness.  However, Dr. Miguel Royo-Salvador and many in the European medical community state this tightness to be much higher than 20% and that most Chiarians due indeed find their herniation due to this tightness and downward pulling of the hindbrain.  Proof: whiplash victims and women who have given birth find to suddenly have symptoms that an MRI shows to be a Chiari malformation herniation, whereas before the whiplash and childbirth no symptoms were present or no herniation!  A puncture of the dural (birthing epidural) has been shown to cause a slumping of the hindbrain, which is thus a direct cause of Chiari!  Some antibiotics have been shown to cause an increase in intracranial pressure and cause a Chiari herniation!  So, whereas the posterior fossa decompression surgery creates more room, the filum terminale dissectum/release removes the CAUSE.  And, because our brains are collagen (think cottage cheese) said release of the tightness and thus release of the downward pulling on the hindbrain can lead to an upward migration of the herniated Chiari tonsils.  University of Alabama found and upward migration of 1 millimeter, Dr. Paolo Bolognese of New York found an average upward migration of 3.5 mm's on hundreds of patients over a several year period, and my neurosurgeon, Dr. Royo-Salvador has indeed, per follow-up MRI found upward migration of said tonsils over a several year period.  Also according to Dr. Royo-Salvador, the LONGER YOU WAIT to release the downward pull, the more herniation that is going to occur!  Do your research, pray about it, become your own expert, seek multiple opinions, and quickly research FILUM TERMINAL DISSECTUM/RELEASE.  Godspeed!

[washfeet]

Edit, University of Alabama at Birmingham on cadavers.

[Stroud5393]

A little update. I saw my neurogist yesterday about the resumts of the mris of the full spine all normal besides some degenerative changes in my cervical spine. No syrinixs or anything like that so thats good news. I am finally seeing the neurosurgeon feb 26 i hope to get some answers. My lightheadedness has been so bad this past week but my neurologist said chiari doeamt cause lightheadedness is that true?

[Stroud5393]

She doesn't believe my lightheadeness is neurological at all but I've litwrally had everything elae tested with normal results..

[KerriC1]

I’ve had my fair share of neurologists dismiss me and tell me chiari wasn’t my problem. Even after my first decompression when my symptoms came back they were less than helpful. One did diagnose me with high ICP and put me on diamox for over a year.

Have you ever had a tilt table test done? I had one years ago and was diagnosed with orthostatic hypotension which causes dizziness and low blood pressure issues. Something to think about. Just keep pushing for answers

[selmaS]

The weather can affect how you feel....so the light headedness could be due to the barometric pressure more so then the Chiari itself. A tilt table test is a good suggestion as it is best to rule out ALL related conditions and POTS is one  many with Chiari do have in addition to Chiari.

[Stroud5393]

Ok Selma i needs some of your great advice. This is gonna be kinda blunt but here it goes. Last week i noticed during sex right as i was ejaculating I got a severe pounding headache in the back of my head that I've never had before. Now every time I attempt to even have sex the pounding headache starts. I went to the er thinking maybe it was a aneurysm or something related. They did a ct scan which was normal. Can this be chiari related or probably something unrelated? Now i can even cough and i will get the pounding headache and its got me real concerned. Also yesterday I broke out into a sweat for no reason at all..

[selmaS]

Hi, yes it is a Chiari symptom.....any type of activity can cause this...even a BM.....a cough, sneeze or laughing....

Chiari can affect all functions in the body and during a flare it is possible to experience new symptoms you have never had before....and I know it can be very scary.

I wish I could say it will all be better tomorrow.....and I pray for you that it does get better....but the more you worry, the worse you will feel.....I know, trust me I know how  hard it is to relax when so many scary symptoms crop up.....but you need to relax to begin to feel better. Avoid activities that can cause the symptoms to flare .

[Stroud5393]

Thank you so much selma for all your helpful advice. This has me so depressed.... Is hot flusing and high heart rate chiari related?

[selmaS]

Yes, it can be...there are also related conditions which could also cause those symptoms.....a good Chiari specialist can help determine which symptoms are from which condition....but it can take time and continue to be very frustrating.......

[Stroud5393]

Now I’m really getting concerned. The pressure in my head is constant now along with the dizziness and general unwell feeling... I just don’t know what to do... I’ve been to the er countless times and my gp nothing helps me!! I don’t k ow how much more I can take really :(

[Stroud5393]

Another thing that really worries me is that the headaches just started to get really bad everyday just a few weeks ago. Could it be something else causing the headaches like Intracranial hypertension? Or is it more than likely just the chiari?

[Stroud5393]

And I keep getting this fluid sound in my head could this be my spinal fluid being obstructed??

[selmaS]

First Breathe.....try to relax, I know it is hard especially when symptoms worsen but you could be making yourself feel worse.....
As I said it could be weather related this time of year....my head feels like it will pop open any time now.and I had surgery 10 years ago this May.....I know mine is the weather, as I can see the pattern......I also know I have been overdoing it and I am taking time to rest up and recoup.....it's important that we listen to our bodies and react positively to it and make the right corrections to allow us to feel better sooner.

There are many possibilities but until you are seen and tested it is just speculation and something that will only stress you more.....again, try to breathe.

Keep us posted on if you get in sooner to see the Dr and then what the results of testing are.

[Stroud5393]

It’s honestly so hard to say calm bring in this much pain. The headaches have been all day constant for almost 2 weeks isn’t that worriesome?

[Stroud5393]

I meant to say stay calm being in this much pain.

[selmaS]

No worries I can read Chiarian...I am one....lol....

I understand it is worrisome, and I also know how long these episodes can last.....Resting and keeping calm can help....even though it is not easy to do.....it can help, and until you have further testing there isn't much more you can do, sorry to say, and the ER will not do much and possible peg you as a med seeker....they do not DX, they only treat what they can see and send you on your way......this is not something they will be able to see, so they can't treat it.....

Hang in there.

[Stroud5393]

But can’t chiari cause things like hydrocephalus from obstruction? Could that be why I’m hearing the spinal fluid popping in my head? Thank you so much for always taking the time to reply to me...

[selmaS]

Chiari can cause a syrinx to form, which can block spinal fluid, and many times what we hear and believe to be fluids can really be the nerves responding to stimuli.
Hydrocephalus can be a DX, but I have only seen it post op, and I really feel it was more a reaction to the replacement dura and not an obstruction.....JMHO.....I am not a medical professional and I can't advise , but I do feel Drs that use anything other than the patient's own tissue for a dura patch will find excess CSF as a result. I have witnessed it too many times not to be the case.The reason I feel it happens is due to so many of us also have EDS and it is undx'd when surgery os done and precautions are not taken to help avoid the post op issues.

[Stroud5393]

Does anyone visit this board anymore? I really need advice..

[selmaS]

Hi , I am so sorry you are feeling alone and in pain.....The ER can't really do much for you even for pain.....I know that doesn't help you, but what you should know is Chiari symptoms do typically flare.so the more stressed you get the worse you can  feel.....plus the weather is a factor is triggering pain and symptoms.

The best advice I can give is to try to relax, call the Dr that gave the Feb appointment and ask to be on the cancellation list to get you in sooner.....that way you can have testing to figure out why the increase in symptoms.

[Stroud5393]

Thank you Selma I will call now to see if I can get on the cancellation list. Every time this pressure in my head is really bad my ears get really red and hot have you heard of this?