Devastated

[Hypo27]

I don’t know who all has been following me but the ones that have know my post history. I’ve been dealing with a bunch of crazy symptoms the past couple years. The difficulty swallowing, lightheaded and near faint spells, headaches, head pressure, numb limbs, and shortness of breath. I went to the er yesterday because I literally almost passed out and was feeling really weird. Well they did a CT scan and diagnose me with Chiari malformation 1 5mm....I’m completely devestated and so worried right now 😭. I’ve gotta see a neurologist about further treatment and possibly surgery and I’m just scared out of my mind right now.... I wanted to update everyone on everything I don’t know what to do I’m freaking out :(

---------- Post added at 12:03 ---------- Previous post was at 11:50 ----------

I don’t know how I’m suppose to take care of my wife and little girl and another one on the way.. I can barely do any kind of heavy lifting at all or straining and it makes my symptoms a lot worse. This all feels like a dream I always thought this all could have been chiari but none of the radiologist saw it until yesterday.

[MyNameIsTerry]

I really would wait and see what the neurologist says here because the ER have found this on a scan but people can have this without realising as they have no symptoms. This raises the possibility that your symptoms may still not be this but they are attributing them to it and a specialist, who also reviews your anxiety too, may not agree with them.

Hearing something like this is bound to be scary though and set of the catastrophizing thoughts. But it could be manageable with pain medication.

[Hypo27]

Please anyone..

---------- Post added at 12:34 ---------- Previous post was at 12:28 ----------


I really would wait and see what the neurologist says here because the ER have found this on a scan but people can have this without realising as they have no symptoms. This raises the possibility that your symptoms may still not be this but they are attributing them to it and a specialist, who also reviews your anxiety too, may not agree with them.

Hearing something like this is bound to be scary though and set of the catastrophizing thoughts. But it could be manageable with pain medication.

A lot of it makes sense though being chiari. Like the daily headaches near fainting spells and I constantly get this fluid popping sound in the back of my head which my only guess is spinal fluid trying to get past the malformation... If I do end up needing surgery I don’t know how that’s gonna work with no health insurance :(.

---------- Post added at 12:39 ---------- Previous post was at 12:34 ----------

The idea of this type of surgery completely terrifies me it’s a really big deal because they are cutting bone out of the back of your head... I’ve read a lot of people dying during surgery or from complications from the surgery :weep:

[MyNameIsTerry]

It's a possibility but how much of your anxiety disorder did they investigate? If they didn't then they haven't questioned the fact much of what you describe is also found in anxiety. This is where a neurologist doing more assessing, with greater experience, may believe it's a finding that didn't point to something that you were born with.

The most common type, and least serious, is known to develop into causing problems later then childhood but it's also treatable with pain medication for the headaches. So even with a diagnosis there is still hope of no surgery and until you see the neurologist your anxiety will want to scare the life out of you but the reality may be that this is a manageable condition.

What does your wife think?

[Hypo27]

It's a possibility but how much of your anxiety disorder did they investigate? If they didn't then they haven't questioned the fact much of what you describe is also found in anxiety. This is where a neurologist doing more assessing, with greater experience, may believe it's a finding that didn't point to something that you were born with.

The most common type, and least serious, is known to develop into causing problems later then childhood but it's also treatable with pain medication for the headaches. So even with a diagnosis there is still hope of no surgery and until you see the neurologist your anxiety will want to scare the life out of you but the reality may be that this is a manageable condition.

What does your wife think?

She's taking it better than I am that’s for sure.. I’ve also gotta see an endocrinologist about my low testosterone. The doctor I saw yesterday said that the low testosterone could be caused my the malformation too. Everything seems to be getting worse really fast my hands and toes go numb a lot and my vision blurry off and on... I’m so worried right now I do t know what to do 😩

[MyNameIsTerry]

I hope the appointment comes quickly so you get some firm answers. You need someone who can look at your anxiety symptoms as well as what this doctor saw so they can determine which is which. You didn't say how much of your anxiety disorder this doctor considered and that raises the possibility he/she diagnosed in a vacuum. That's what I'm hoping anyway so that it's an incidental finding, it's not that I want to dismiss it it's just if this condition isn't causing true symptoms at least you can avoid treatment options.

I wonder if your wife is handling it better because she is more objective about it being a situation like this? Obviously if she doesn't have HA she isn't going to spiral though.

[Fishmanpa]

If that's the case, it would explain some of the symptoms you've had. Go see the neurologist and see what they say. No sense into continuing to catastrophize and make yourself feel worse. Easier said than done I know but the neurologist will confirm things and determine what treatment is needed if confirmed.

Positive thoughts

[Hypo27]

If that's the case, it would explain some of the symptoms you've had. Go see the neurologist and see what they say. No sense into continuing to catastrophize and make yourself feel worse. Easier said than done I know but the neurologist will confirm things and determine what treatment is needed if confirmed.

Positive thoughts

Thanks fish it’s just so hard not to stress about it man. That’s the person I am I worry about everything. I worry about the complications of this disorder like hydrocephalus or cysts in my spine as these can be deadly...

---------- Post added at 14:50 ---------- Previous post was at 13:45 ----------

Is anyone here familiar or know someone with this?

[Hypo27]

My symptoms keep getting worse and I don’t know what to do 😭. The lightheadedness is near constant now I’m having trouble using my hand and I’m getting these weird chill feelings all over.. I was at the er yesterday do you guys think I should go back? It just seems like yesterday everything went from 0 100 fast and idk what to do...

[Emc]

I really think the worsening of your symptoms is anxiety rather than the Chianti malformation. It wouldn’t get worse all of a sudden like that I promise.
How do you usually manage your anxiety? Breathing exercises, deep muscle relaxation, meditation, distraction? Maybe try some of those things & see if the symptoms reduce any.