12 replies to this topic

[GiaCat21]

Hey all-
I need some positive energy right now....

Weds night my mom and I were fighting and I got BAD_WORD and went to stomp up to my room when I lost my footing and fell down the flight of stairs, smacking my head and neck into the slate flooring. Since I'm on coumadin for a pulmonary embolism in June and I hit my shunt pretty hard my mom made me go to the ER. Now I'm dizzier than normal (which is pretty dizzy, I want off of this ride!), my balance is way off, and my foot is dragging again. All of this had gotten better after my surgery in May, but now I'm worried that I may have aggrevated my cranio-cervical instability... I DID get knocked out most likely when I smacked my head and the ER doc and my GP both said I have a pretty good concussion. In my neck I felt a pop when I got up but my neck was scanned and there was nothing broken (because I'm so loosey goosey that my joints just dislocate and subluxe rather than break... Guess that is the positive to Ehlers Danlos). I see my neurologist for an urgent appointment as my neuro exam is back to pre shunt levels. I think he will send me back to my (wonderful) neurosurgeon...

And then when they were doing the CT scan of my neck on Weds night they found a growth on my thyroid.... I'm trying not to worry (and everything I've read said it's probably nothing that can't be fixed with a little iodine) but I've been exposed to SO much radioation since March 2001, it's hard to not be a bit concerned.... The ER was going to send the report to my GP ASAP so she can order an ultrasound of my thyroid and send me to endocrinology (I was going to ask for an endo referral anyways because I think my catecholmine levels are way up again and I think we should do another check for a pheochromocytoma as my hypertension isn't responding to my meds... I was 160/100 at rest yesterday)

So good vibes that 1) I "just" have a concussion and I haven't done any further damage to my cervical spine as I *really* am not ready for the cranio cervical fusion that I need and 2) that for once I can be within "normal" limits and the thyroid growth is nothing. Sometimes it just feels like the BAD_WORD just keeps coming!
<3 Lex

Edited by GiaCat21, 20 August 2011 - 05:42 AM.

[GiaCat21]

All signs are pointing to that I have furthered buggered up my upper c spine. My neuro synmptoms are continuing to get worse at an alarming rate. I've lost all feeling on my right side and have very severe weakness. And my neck hurts like a mofo... I think Dr. S is going to send me to Dr. Markey to talk about a fusion... I'm not emotionally ready for a fusion but I do realize that it does need to be donw in the next couple of years. IF I have to get the CCF then the means I won't be able to go back to school next semester... Will let you all know what happens after my neurology appointment tomorrow but i'm pretty sure he's going to say to go see Dr. Markey.

[GiaCat21]

Update on Weds. fall. I have to get another LP to make sure that my shunt is working properly even though the shunt series looked okay in the ER... My neuro is worried that I messed up my shunt and my ICP is back up. Also he wants me to get a MRI of my neck ASAP as my right side isn't working and my foot drop is back with a vengence (as is the weakness). I felt a pop when I got up off of the floor on Weds and we're worried I may have aggrevated my CCI. He is going to call Dr. Markey and then will be calling me back later this afternoon. For the LP we have to make sure that my INR and coumadin levels aren't theraputic so I don't bleed into my spine... But he is very concerned about all of this and feels that there is more going on than just the concussion...

[LycanGhost]

How're you doing Lex? I'm sending good vibes your way.

[GiaCat21]

Hey Lycan-
I've been admitted to the hospital. Friday morning I started puking and had a "drop attack" (where all of my muscles just give out and I go down but am still totally awake)... When I got up my speech was really slurred and my head/neck pain wasn't responding to my opana. I had a LP done and my ICP was 11 (yay! can't get much better than that)... Then I had a CT and angiogram done to make sure that my vessels are all okay (as I look and sound like I've had a stroke) and that was fine as well. Today we did a MRI but it didn't show anything new... I think I need an upright MRI done but this hospital doesn't have an upright machine. Neurology at this hospital was thinking that maybe I am having a delayed reaction to the fall and all of these neuro symptoms are a result of the pain that I'm in (I've had chronic pain for 10 years and have never reacted this way....think he is just grasping at straws). So no answers yet. My mom and I think that they should re do my nerve conduction studies to see where my signals are getting hung up.... Right now the goal is to keep me hydrated and try to keep my pain in check. On the plus side it seems that the fall did the trick on my hypertension... My bp is back in the crapper... I'm at 90/60 laying down (cardio wants me at 120/80 laying so it has room to drop when I move and stand).
Lex

Edited by GiaCat21, 27 August 2011 - 10:27 PM.

[LycanGhost]

Ouch, Lex! Sheesh! I'll see if Jo can get you on a prayer list at her church! May help get some good vibes back to ya.

[GiaCat21]

Thanks Lycan-
I'd appreciate it if you could get me on a prayer list... Any positive energy helps!

I was discharged from the hospital Sunday afternoon, just because they didn't know what was going on with me. The hospitalist didn't even bother to call my nsg after my MRI, so now my shunt is over draining (the shunt is magnetic) and I have an awful low pressure headache... All the doc could tell me was go to the pain clinic and get my pump hooked back up. No one really understood what Ehlers Danlos is so I think that is part of the problem (med students spend only literally one class session on connective tissue disorders because the genetic ones are rare, so no one can get them). I tried asking for a SSEP to be done (somatsensory evoked potential) to see why I can't feel anything on my right side and can't move my right lef below the knee. I'm calling Markey (neurosurg) and Scott (neuro) first thing in the morning. I'm confident that between the 2 of them they can figure out something. The hospital wanted to discharge me to a rehab place but I refused... That would only be treating the effect and not the cause (which is my neck). I'm just really feeling miserable.... And I'm pretty depressed about this massive backslide. I would slap on my neck brace if it didn't cut off my shunt.... Maybe if I go back to traction and take my vitals in traction and out of traction Dr. Markey will do the fusion. All I know is that my neuro exam gets worse by the day.
<3 Lex

BTW still have to get the ultrasound of the growth on my thyroid. Fingers are crossed that it is totally benign.

[GiaCat21]

Going back to the ER as soon as my mom gets home....

[MoonChild]

[LycanGhost]

Ouch, Lex!

[GiaCat21]

Quick upate...
I saw my neurosurgeon this morning... He thinks I could have a low level infection or a clogged shunt or it could just plain be malfunctioning (even though I just got it in May, I tend to have the WORST of luck). When he pressed on the resevoir it was slow at refilling. So next week I'm going to have a shunt-o-gram... Dr. Markey will inject dye in my shunt (doesn't hurt at all to have a needle put in my shunt... so much better than going through an LP or another myelogram) and then take images to see how the CSF is flowing. We think it may just need to come out all together and get a new system as it keeps changing settings on its own (which my brain doesn't appreciate). I thought he was going to cry when he saw me... I was reclined in my wheelchair and I'm back to looking *really* sick. I haven't looked like this since he put the shunt in, back in May (even with the sepsis, pulmonary embolism, e. coli, and other assorted serious funs I was still pinkish... now I'm blue/gray). He said he will do everything he can to get me back to where I was last month. All my images show slit ventricles but with pseudotumor and a shunt, even if my shunt is malfunctioning or clogged my ventricles probably will remain very small or slitted despite very high pressure in my head.
thank you for your continued prayers/good vibes. I love all of you. Your support and love means the world to me...
Lex

[Laurie Ann]

:-( RIP baby girl

[LycanGhost]

We miss you, Lex. Board isn't quite the same without you lighting it up. Hope you make it up above.