Swelling or something on the back of my head

[xmelax35]

Okay, I am not going to go into every single detail, but I am WORSE since my 2nd surgery as I think I might have posted before (been awhile since I posted). My surgery was a year ago! Can you believe how quick that passed? I have worse symptoms and guess what? That horrendous Migraine (1 of 7 or 8 different kinds I have) is BACK! The one that feels like an Icecream headache x5! Plus the issue I have with the face paralyzing for seconds to a minute or so and not being able to breath or talk and dizzy (not spinning dizzy - up and down up and down) and feeling like I am going to pass out! But I don't pass out (I know the feeling you get when you are going to and I have that feeling w/o passing out).  Anyway, I STILL have my neck to face to eyeball and above migraine in which I have to say is my 2nd worst migraine of all of them (it moved up to 1st when my other one was gone almost a year).

Well, that 2nd is reallllllyyyyy awful today! I had to take my emergency med which is treximet - because in no way am I going to go to our local hospital after the way I was treated the other day. Yesterday the side of my neck was hurting so bad too. Well this is my whole neck hurting but the big pain is on the right side and travels up.  So anyway I was feeling at the back of my head where it hurt the very most (yes I said very most, lol). I had my hand on both sides of my back of my head and wow it is swollen up on the right side! Big time swollen. You can clearly feel the difference in the sides of my head. My husband can feel it too. Why would it be so much larger and swollen there? That is the spot that hurts inside the most of my head part toward the bottom.

Hope that all made sense. I obviously have not gained back my concentration yet either.

[selmaS]

  Did u try the one Dr in Ohio a Dr Daniel P something or other?

He bills himself as a Chiari specialist and posted here on the forum and MedHelp...he had his name added to our list, that is all I know about him, but may be closer to u,

[xmelax35]

Yeh, now I have to find a Chiari Doctor closer. My husband refuses to go 5, 6 or 7 hours anymore.  He says, that we will go that far for a 10 minute consulation and be told there is nothing more they can do for me, so it is ridiculous.  He is an idiot though, because where the heck is he going to expect me to find a doctor who deals primarily in Chiari around here??? No where that is where.  He says that I am going to be screwed if I cna't find a doctor to fill out my paperwork for the loan company. The last neuro will NOT fill out paperwork for anyone from what i understand, as he believes he cures people. I am worse and I know what they will say when I go back. There is definitely something wrong. This is not depression and it is not made up. I definitely have something going on and I hope to find my miracle doctor.

[selmaS]

  It may just indicate inflammation.....??

Not sure, but I know some of the Chiari specialists have ortho's on staff too, so it really depends on which one u call as to who all they have on staff....they may refer u to someone that they feel is more qualified to understand the chiari  aspects ....

So all u can do is call around and ask....sorry.

[xmelax35]

Getting my MRI done tomorrow! Thank goodness. I don't have my CCF disk anymore, so  have nothing for them to compare to. I hate that. I am going to take my paperwork though so they can see where the prev radiologist said that the tumor was bright on all sequences. Hopefully they will concentrate on that area as well.

Do you all know if they can see a CSF leak on a brain MRI? I am having it done with and w/o the dye.

[xmelax35]

Do you know if they do other things besides chiari? I mean tumors in the brain? I have to say this morning I took a whole treximet as I usually only need to take half, but my head was sooo bad. It's taking a slight edge off and that's all. But for now it's better than no relief at all.  these symptoms I am having are so scary! Plus the big question what is going on that my blood platelets are high? I mean what kind of infection or disease? Cancer? Infection on my head? That in itself scares me. I wish they could do a full body MRI.

[selmaS]

  Can u get the MRI copies and send it in the mean time....it may help get to the bottom of what is going on.....

Sorry about having to wait, but it may be for the best till u know what the issue is.

[xmelax35]

No I never sent to them, but now I am wishing I did.  Now, I found out the results for my 3 pre surgery tests. The blood one, the only thing is that my platlets is a bit high.  My dr is getting me a MRI of the brain. My symptoms are just not right.  Not feeling well at all. My heart rate is real low the last few weeks (when usually it is very high).  So in other words I am not cleared for my disc surgery yet.  He said the way I look and the way I feel not a good idea until I feel better/ find out what's going on.

[selmaS]

  Ok now I remember....the first NS did not complete the surgery and the 2nd was an attempt to correct that,...ok....

Not sure what could be going on....so sorry u r dealing with this on top of everything else....

Have u tried to send copies of ur MRI's to places like TCI or Dr Oro to get a consult?

[xmelax35]

Sorry it's taken me so long to get back. My mind just isn't thinking straight. I am not feeling well at all. It is a scary not feeling well. The stinking hospital ER refuses to do any tests at all! So going there is out. I have to go to my dr.  With what is going on I am not sure he will believe me either.  Anyway I had 3 drs tell me I needed the 2nd surgery. It was only done half way around and stopped. The prev dr didn't complete the other side. So I still had crowding, etc. plus when I had the 2nd I had blood vessels that were smashed flat and the neuro did something and they filled back up.

[selmaS]

  Hmmm well it is a sac of CSF that fills at the back of the head.....may I ask y u had the 2nd surgery? Sorry I thought that was the reason....

I am so sorry u had that experience,....sounds like mayb u have a leak or cerviocranial instability?

((hugs))

[xmelax35]

Thank you! I had to get another MRI on the back (thorasic) and they had to help me sit up. I screamed and I was bawling my head off. I think the whole place heard me. People were looking at me all funny. I know the guy across the hall waiting on his heard me. It was just awful pain/ extremely bad. Now it is just hurts so bad to sit up or sit or lay in certain positions. Then all this stuff going on with my head. It is so frustrating.

I am going to post another question here in a minute about something else, that I think I asked before.

[frankie_rush]

I hope you get it taken care of, I know how painful and broken disk can be.  It will hurt to breath sometimes.  Pryers and heling mojo for you.  Let us know what they say.

[xmelax35]

Ps. There is more (that was just a portion of it all). I will post tomorrow after I get back from the ortho neuro appt. :)

[xmelax35]

No didn't have it. Don't even know what it is tbh.

[selmaS]

  U had a pseudo from the first one didn't u? If I remember that is y u had the 2nd surgery?....sorry not sure so I have to ask....

hmmm....

Sending prayers u can get this taken care of sooner then later.....((hugs))

[xmelax35]

P.s. no they haven't and its a long story but I honestly don't think they will check for it and if its there prob won't admit to it.

[xmelax35]

It's been 1 year since my 2nd.  I have to get my disc fixed b4 I can go back & get an MRI. For some reason they won't allow me to get an MRI from here, they want it done there.  I don't understand. I am trying to tell them something is wrong but I have to wait.  I do feel something is not right.  I told them there was something not right about my back (told my local doc) and said there is not this kind of pain and nothing be wrong. I kept persisting & they finally did an MRI of my back and found the herniated/broken disc.  I am not sure who I am going to go to for this in the meantime.

[ChiariWolf]

You probably don't want to hear this but I'd recommend going back to see your Dr and get a new MRI. Perhaps it is fluke but it all sounds a lot like my
experience with psudo.

CW

[selmaS]

  Hi...so sorry u r no better post op this time....and u r so right time does fly by fast this May I will be 4 yrs post op.....

How long has it been since ur 2nd surgery now?

Have they ruled out a CSF leak?....or cerviocranial instability?

Also I can not remember if u had the same surgeon for the 2nd surgery or went to someone new?