Long time No SEE!

General
1

Im sorry I haven't been around! I can give you an extensive list as to why I haven't been online, but bottom line is tired and in some form of pain.. I'm still having several issues, some come and go others have been here since the beginning even after surgery.. I have been working with this HA Spec and I like him... Although I don't dig his diagnosis, he seems like he WILL NOT give up on me.. We have tried so many different things and nothing has helped as of yet.. At my last appt I told him I felt like I was being a huge pain in his rear, and he said that I wasn't so I continued to tell him that its about this time in my Doctor/patient relationships that the doc just throws his hands up (not litterally) and says well I can't seem to find anything wrong with you and nothing seems to help you so ur just going to have to learn to deal with it. He assured me he would NOT do that! So now after several appts and even more drugs, I am currently trying a drug called Lamictal and he wants me to take Adderall 10mg because even after treating my sleep apnea I am still tired and sleep anywhere from 10-13hrs a day.. He is also going to send in another request for authorization for Botox injections... I mentioned at my last appt about Spontanious Intracraniel Hypotension and he didn't know how to respond except with the regular (im the doc and I know more than you) attitude. LOL Anyways, he had asked had I even been on steroids and I said yes and he asked when and why.. Thats when i told him about the meningitis and the leak ect. and said I brought my files in at my first appt and you didn't care to look at them.. So he said he didn't think a lumbar puncture would say anything and now he thinks that it's probably a pretty good Idea, considering I have never had one, only a lumbar drain because of the meningitis... So here's hoping SOMETHING works...

I have an appt in Maryland with Dr Henderson ( feel like he is my last hope ) at the end of June... I'm not sure I am going to be able to make it though. We just don't have the money for travel and the initial appt... I may just have to wait till next year or something.. I'm also very nervous that Dr Henderson will not find anything wrong or that he will find more wrong that will result in another surgery..

I hope everyone is as WELL and pain free as can be expected!

Take Care

Jen

2

Thank you Poptart, for sharing your experience! I feel like the pressure is too high too, I often describe the back of my head feeling like I have a soccer back there... I am overweight and currently trying to lose some of it... But I'm not huge or anything. LOL IT's weird, I'm torn between fear and want... LOL I want them to do a LP because I think it may hold some answers but I am terrified of the pain.. Before surgery, I had NO FEAR towards anything really (except the normal mother fears for her children) I have had surgeries before and procedures ect. and was never scared or worried or anything like that.. Now the meer thought of any kind of procedure that may cause minute pain terrifies me.. LOL Stupid I know! I remember how bad that epidural hurt when I was having my girls (worse with the first one) and Im pretty sure a LP is gonna feel similar..

I am glad that you are not having pressure problems anymore, It's great that your doc finally listened to you!!

Thank you, and Take Care

Jen

3

Whoa! 191 that seems super high!

I guess I have to wait and see if he wants to the the LP or not....

Thank you agian

4

Thank You!!!! That is one thing I hear and have heard frequently.... "You look great, so it can't be that bad" and "well you don't look sick" I just wish that the ding dongs who say this to people that are sick/in pain/ect on the inside could experience it on a daily basis for just one week, so they would never judge how someone feels or should feel based on what they look like....

I wont give up, I've got too much sass to let this control me forever.. hehehehe

I too thought a lot of my symptoms were normal (because I have had them since i could remember) and after talking to various people, learned that they were not and most people don't experience pain of some sorts on a daily basis..