Johns Hopkins and safe shopping advice

[burdzmom]

ok- so i havent posted since my visit to JH for a chat with nerosurgeon (Dr Michael LIm) because i have been #1 really uncomfortable, Alot more painful days than not-so painful. #2 dealing with an overdramatic 6 year old and a very ........ let's say imaginative 2 year old and #3 trying to process what was presented to me and get things together.

Here's the recap: (sorry its long but i tried to make it funny - i promise)
visited with Nerosurgeon Michael Lim and his "team". His PA was very attentive. She was compassionate, showed interest in my medical history and did a very very thorough evaluation.  Dr Lim came into the room after reviewing my films and medical documents that i brought with me from home.

According to JH : My decompression was successful and without any "problem". Dr Lim stated that whoever did my surgery at Cooper actually did a good job from the viewpoints of the scans and stuff i presented to him.  He does not feel that the issues i am currently experiencing are related to a "surgical flaw".He briefly mentioned the slim possibility of a cerebellar slump. He was VERY VERY insistent that i follow up with the team of Neurologists at JH. He stated that i have a very "complex" case and that the team of neuro doctors can further evaluated my symptoms and conduct appropriate care.  He was very patient, and selective with his words when he was urging me to follow up. He even stated that they will make a call that day to get me in to see Dr. Mogekar (who is suppose to be phenomenal....."people fly in from all over the country to see him" - time will tell i guess) He even went as far as sharing a personal story about a female friend of his who has "similar symptoms as me and is about the same age". His friend, has a very rare form of LUPUS that the doctors at JH were able to diagnose and get her on a good medicinal regimen. . . . . WHOA WHOA WHOA!!!! PUMP THE BRAKES MISTER!!!! . . . . . LUPUS. . . . . WHAT!!!!?!?!?!?!?!?
It was convenient that he shared this story while explaining the necesity for me to follow up with this team if neurologists that deal with "very complex situations such as yours". . . . (**** this is where you could of pushed me over with a feather ****)

So it was further explained that the bloodwork that i had done after my surgery for an unrelated GI  condition, or so i thought showed my titer was very high along with a low hemogloben. So combine that with me apparently failing my neurological tests the PA did miserably and the symptoms im experiencing, they are thinking more of an autoimmune disease....... huh?!?!? Dr Lim stated that "it was very possible that I have had an autoimmune condition that  flared up when my body went into distress." the body apparently faaa-reeeakkks out when you have a major trauma if you have certain autoimmune diseases. when i was placed under high doses of narcotics and anethesia it, for lack of better words, put the disease to sleep or in remission. He said that it was possible for some of the symptoms i was experiencing could/can have been related to the autoimmune disease that was never diagnosed before surgery. SOOOOOO he said that all of the stuff i had going on before surgery may not have ALL been chiari related and that he would not have done surgery without ruling all other possibilites out first. **WELL THATS JUST FABULOUS.** Not saying that i didnt need the surgery, just that it is a very difficult procedure and life changing. . . . . He said "LIFE CHANGING"......that right there my friends was the point i realized that i was in the right place. Its funny how I travel to JH 9 months post-op and have a neurosurgeon tell me recover is up to 2 YEARS and chuckle when i told him my neuro at Cooper told me recovery was 6-8 weeks....... jokingly he said
" maybe your incision will heal in 6-8 weeks..... I tell my patients to expect to not feel better for 2 years!"
----- AWESSSUUUUMMMMM!!! -------
He never came directly out and said YOU HAVE BLAH BLAH BLAH..... he was just very insistent. Like when your are trying to tell someone something that your not suppose to tell them but you really really want to tell them because you believe with all your heart and soul that it will help....... kinda like that.....

So here i am, waiting on an appointment to travel back down to JH to see if this group of brilliant men can figure out this "complex case". Until then i continue to "ride it out"  and hang on by a thread most days it seems..... cant say i have felt better.....actually think its kinda worse since we are changing seasons, if that is possible. Who knows, maybe this is how i can start my new career as a Television Weather Girl......I can just predict the weather based on how my body is feeling, throbbing, twitching or spasming at any given time. You'll know the weather isnt looking good when im flopping around like a fish outta water.......geez.....

Im trying to keep laughing about it and push thru each day. Until i see the docs thats where I stand.

Hope you all gained something from this post. Sorry its long for those of you that stuck it out and read all of it.

Enjoy the upcoming holiday and your crazy to venture out of your house on black friday. if you should, here is some chick cop advice - take it or leave it - just looking out for ya......

#1-carry your ID and money/cc's in the front pocket of your pants. DONT carry a purse.

#2 if its dark out and you are alone in the parking lot, try to park  in a well lit area, have your keys out and carry your bags in front of you (if possible)  - out to the side or hands completely full and your a moving target.  

#3 Be aware. Scan your area and be alert.

#4 if you are approached you should SCREAM!!!! I dont care what it is you yell but yell loud!!! yell fire.....yell no.......yell a-hole........i dont care what it is but do it LOUD!!

#5 if a weapon is talked of or shown, give them everything they want from you.......Cant put a price on life.  

#6 empty your car of valuables if your going to a mall or something if your car is going to be parked for a while...... goodies inside a car is like eye candy for a bad guy.

#7 and lastly, if anyone tries to force you into a car or somewhere.......let the live cougar in you come out and scream, run and fight your head off!!!!! DO NOT GO ANYWHERE!!!!!

Enjoy the Holidays. XOXOXOXO

-jilian

[thieb9]

I am glad to hear you are getting some answers. I too am going through Johns Hopkins for my surgery in less than 2 weeks.  From what I understand none of the doctors comnsider themselves "specialist" , they have "special interest".  And to me it seems that they all work together as a whole to figure out what the problem could be and refer you to the doctor that best fits your problem.. I have been to countless NS's and I can honestly say, I love the doctors there. I hope that you will get the help you need soon! In the mean time take it easy...
And thanks for the holiday tips!

[selmaS]

Jilian,

First- Thanks for the safety tips for Holiday shopping...I was out a little today with my sister...started just getting a ham...lol....but, it is also good to note or add to ur already informative list~~~~

#8 Drive carefully as people are not paying attention and traffic is heavier than normal...too many rushing...try to avoid the malls at peak times and go to intersections where there is a traffic signal or turn with traffic.


That said...too many of us do have auto immune issues and too many drs r not checking us for them b4 surgery....

It is one thing I may say too often, if that is possible when it is sooooo important...but we do have to rule other issues out so we know we will have benefits from the surgery.

I knew I had Hashimoto's a autoimmune thyroid issue b4 surgery, and I knew I had   others like DDD and the start of RA like issues.

I also was told I had a condition which is many times related called Ehlers-Danlos which is a connective tissue condition.

Not that I want u to have something else like EDS it may be better than an issue with ur surgery itself.....

I hope the testing u go for shows nothing that is not too diff to tend to....and u r feeling better soon.

I just had a few weeks of  very bad pain and I was put on Topamax and it is working pretty good....at first I didn't think so, but it really is making a difference.

"selma"