Aa
needle in my head and a rare tropical disease. . .say whaat?!?
hey crew. . . im back. so i went to JH on thursday. well- actually we traveled to MD on wednesday because of the blizzard that was approaching. we didnt want to have our train be cancelled and leave us stranded thursday morning. sooooo we drive - leave wednesday and make it just into MD when the elements took a turn for the HORRENDOUS! it was like crash up derby on I95! cars everywhere! snow and ice - - you could barely see past your headlights!!! cars were getting stuck in the center lane on I95!! INSANE!!! the snow came so fast and stuck to the ground that so many people got stuck. not us! thankfully my husband is a "motorhead" and has a "big boy truck" as my nephew calls it. it still took us 4 hours to get to MD but we arrived at the hotel safely.
Thursday morning we got to Bayview Medical and saw my neurologist Dr. Mogekhar. I have to say that it was a fantastic experience!! i have yet to meet a doctor that was so compassionate, attentive and interested in my health and quality of life. you could tell that he was very interested in what we had to say, never cut us off or spoke over us. took tons of notes and went over things very very thoroughly. HIGHLY HIGHLY RECCOMEND!!!
after a 20 minute evaluation with his assistant where they asked me all types of memory questions and video taped me walking (all of which has never been done) we spent over an hour in the patient room with Dr Mogekhar. just him and us. he heard our entire story (and you all know its a long one)he examined me, did his tests, took notes and discussed options for me. here they are as follows. please feel free to give me input on any and all if you have experience with any of what im saying.
-a needle in my head. yep. the nerve block thing. since a majority of my pain is on the the right side of my head, behind my right ear. a nerve block that would work for approx. 3 months. if it worked, i would see a trememdous change in the way i feel. they would then administer it again and track my progress for 3 months. if then we decided that attention to the nerve would help me they would discuss many options for nerve repair. that being :
decompression. open me up and take away the scar tissue that is compressing the nerve. 2. cut the nerve. no nerve = no pain. 3. implant a transmitter type thing that stimulates the nerve. (kinda sounds like a pacemaker for my head....kind funny. i think anyway.) and 4. implant some metal coil thing that would do something similar to the transmitter. again, i dont know much about these since its still pretty far off. i would explore options if it tbecame a near possibility.
then he asked if i had ever been to the Carribean. odd......why would he ask me that??? i have. a few times. then he goes on to explain that i am symptomatic of a very rare disease that one can only become infected when in the carribean. nice. i then tell him " um.. listen..... i went to the carribean a few times but by no means did anything "crazy" ( and yes i did mimick the quotes to him) i drank. ate good cruise food. had fun with friends and checked out the sights." "if your thinking im a drug addict or prefer prostitutes. . . .your waaaaayyyy off." (** insert husbands eye rolls and laugh here**) so they send me to the lab and set me up for another EEG (check for seizures) because of the twitching of my legs and get the remainder of the files that were never sent to him. (gotta love the attentiveness of hospitals and records requests) if my labs come back ok....a spinal tap will be done - hopefully at the same time as the needle to the head thing.
now i mention that i went to the lab for some bloodwork. here i think its like every other trip. boy was i mistaken. first - the staff at the lab was FANTASTIC!! so sweet, nice, funny just normal people. we had a fun time laughing with them. 14 vials later . . . yes, you read that right..... 14 vials! now, im usually ok with blood draws - but i thought this one would get the best of me. such a trooper this body is - im so proud - no passing out and not even a vein collapse! yup yup!! this peacock was spreading the feathers as i staggered out of the lab.
i figure this doctor is so attentive that he was checking for everything possible. ive never been an easy case - with anything - its always the doctors wanting to use me for research papers and stuff. what can i say - im an odd case.
i just hope that for as much as i like this doctor - he likes my medical history.....cause i really wanna be fixed.
so i'll wait til monday to hear from the secretary about scheduling the needle thing, and hopefully ill hear about bloodwork this week.
oh - the whole rare tropical disease - i googled it. and - NO WAY can i have this. I am and never was an IV drug user and never engaged in unprotected sexual encounters with several partners. it mimics HIV - but its not. Unless i could get this from eating food off a cruise ship or a guava picked from the rainforest in puerto rico (which thats not even the carribean, is it?!?) then please keep it movin'. . . thank. you. very. much.
Thursday morning we got to Bayview Medical and saw my neurologist Dr. Mogekhar. I have to say that it was a fantastic experience!! i have yet to meet a doctor that was so compassionate, attentive and interested in my health and quality of life. you could tell that he was very interested in what we had to say, never cut us off or spoke over us. took tons of notes and went over things very very thoroughly. HIGHLY HIGHLY RECCOMEND!!!
after a 20 minute evaluation with his assistant where they asked me all types of memory questions and video taped me walking (all of which has never been done) we spent over an hour in the patient room with Dr Mogekhar. just him and us. he heard our entire story (and you all know its a long one)he examined me, did his tests, took notes and discussed options for me. here they are as follows. please feel free to give me input on any and all if you have experience with any of what im saying.
-a needle in my head. yep. the nerve block thing. since a majority of my pain is on the the right side of my head, behind my right ear. a nerve block that would work for approx. 3 months. if it worked, i would see a trememdous change in the way i feel. they would then administer it again and track my progress for 3 months. if then we decided that attention to the nerve would help me they would discuss many options for nerve repair. that being :
decompression. open me up and take away the scar tissue that is compressing the nerve. 2. cut the nerve. no nerve = no pain. 3. implant a transmitter type thing that stimulates the nerve. (kinda sounds like a pacemaker for my head....kind funny. i think anyway.) and 4. implant some metal coil thing that would do something similar to the transmitter. again, i dont know much about these since its still pretty far off. i would explore options if it tbecame a near possibility.
then he asked if i had ever been to the Carribean. odd......why would he ask me that??? i have. a few times. then he goes on to explain that i am symptomatic of a very rare disease that one can only become infected when in the carribean. nice. i then tell him " um.. listen..... i went to the carribean a few times but by no means did anything "crazy" ( and yes i did mimick the quotes to him) i drank. ate good cruise food. had fun with friends and checked out the sights." "if your thinking im a drug addict or prefer prostitutes. . . .your waaaaayyyy off." (** insert husbands eye rolls and laugh here**) so they send me to the lab and set me up for another EEG (check for seizures) because of the twitching of my legs and get the remainder of the files that were never sent to him. (gotta love the attentiveness of hospitals and records requests) if my labs come back ok....a spinal tap will be done - hopefully at the same time as the needle to the head thing.
now i mention that i went to the lab for some bloodwork. here i think its like every other trip. boy was i mistaken. first - the staff at the lab was FANTASTIC!! so sweet, nice, funny just normal people. we had a fun time laughing with them. 14 vials later . . . yes, you read that right..... 14 vials! now, im usually ok with blood draws - but i thought this one would get the best of me. such a trooper this body is - im so proud - no passing out and not even a vein collapse! yup yup!! this peacock was spreading the feathers as i staggered out of the lab.
i figure this doctor is so attentive that he was checking for everything possible. ive never been an easy case - with anything - its always the doctors wanting to use me for research papers and stuff. what can i say - im an odd case.
i just hope that for as much as i like this doctor - he likes my medical history.....cause i really wanna be fixed.
so i'll wait til monday to hear from the secretary about scheduling the needle thing, and hopefully ill hear about bloodwork this week.
oh - the whole rare tropical disease - i googled it. and - NO WAY can i have this. I am and never was an IV drug user and never engaged in unprotected sexual encounters with several partners. it mimics HIV - but its not. Unless i could get this from eating food off a cruise ship or a guava picked from the rainforest in puerto rico (which thats not even the carribean, is it?!?) then please keep it movin'. . . thank. you. very. much.
selma - i found this dr through a referral from another neurosurgeon at hopkins from a previous visit. he spoke highly of him and all the research i did confirmed the same.
spacey- i think it was HTLV-1
spacey- i think it was HTLV-1
What was the name of the rare tropical disease? I didnt see it in the post, not sure if I missed it.
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