Recently one of our member headed to States to partake in a study for NF 2. I asked that she share her experience in this study. Dee-Ann is amazing and you should contact her if you have any questions regarding this.
THANKS DEE-ANN FOR SHARING THIS WITH EVERYONE!
My first trip to NIH for NF2 study.
Wow what a week and amazing experience!! any nf2ers out there considering the nf2 (neurofibromatosis type 2)study at NIH (National institute of Health) and not sure........ I'd say go for it! Was defiantly worth going to..... Just a bit on the tiring side
We left sat to drive to Great Falls Montana (cross the border) and stayed the night to catch our AM flight. Great Falls airport was pretty tiny but I need to say, I was greeted by security in ASL! and just made my Great Falls airport experience top notch
he didn't say tons but was mega nice none the less.
We had a layover at Minneapolis airport omg (oh my god/gosh) that airport has its own train (tram) crazy big airport! We arrived in DC (Washington DC) to find the NIH shuttle wasn't so timely on sundays
so we decided to eat supper at the airport to pass time before catching the next shuttle.
The shuttle driver was very friendly and made our anxiety level from being in a new place drop dramatically.
We arrived at American Inn rather late checked in and basically went right to sleep.
To be honest I didn't find the American Inn that great
it was clean but the room we had was very tiny and we felt cramped, the bed was very hard for me I don't do hard mattresses well with my back so needless to say didn't sleep to well the 5 nights staying there.
We plan to stay at Bethesda Court Hotel our next visit. We where talking to another couple on the shuttle that where staying there and they found it 100 times better then American Inn
.
Monday we headed to NIH and where rushed into security, wow they sure r tight
we where given temporary visitor passes and driven to building 10.
We walked in thinking ok now what? We r lost! Then a nice women came up seeing us looking lost and asked if we needed help. She walked us to admissions and was very pleasant and friendly.
We did admissions and signed a bunch of stuff then the lady that did admissions with us walked us over to where we needed to go for my blood work. Didn't wait to long. (They test kidney function cause its now known ppl who's kidney isn't working properly is at risk with MRI contrast) Once that was done we went and did our pictures for real NIH ID badges. Then over to the voucher place to do some paper work to get money for daily food allowance.
Then headed up to 5th floor to see a nurse to do a brief history and vitals. The RN (registered nurse) study nurse I've been dealing with was away for my first day of my visit so after my appt with the one nurse we had the afternoon/evening free.
We took the NIH shuttle back to hotel and decided to check out what OC (open caption) movie. We decided on an OC movie "the box" we headed to the theatre on the metro subway, wow never been on such a long escalator before in my life!
wow whole new world down there! Wasn't my type of movie but since we don't have OC movies in canada I loved seeing a movie in theatre
(I later found out the lucky people in ontario canada now have OC movies). We got lost on way back the hotel
Tuesday AM was up bright and early for brain and spine MRI with contrast. Shuttle doesn't run that early so we had to take taxi (refunded later) to NIH, just a note if u have to take taxi into NIH leave extra time for the taxi driver to clear security
Here I thought I'd sleep in the tube. boy was I wrong! NIH keeps those MRIs a moving! I think back home they r lazy and don't move it much, kept me awake anyways.
After morning MRI we met with Rene the RN study nurse. Very nice lady enjoyed meeting her. And went over what to expect the rest of the week as well as a little more medical history and few questions. She answered any questions we had, and said if there was anything we needed or any concerns to come back and see her any time.
Then took the shuttle back to hotel and went for Mexican buffet right at the hotel (name escapes me, starts with a G
We then decided to go to Smithsonian Natural History Museum wow that's am amazing place and FREE! We only saw a few exhibits was way too much to take in for the time we had! Lucky for us, we went tuesday and the live butterfly garden (part I wanted to see most) was free as well (normally cost $6 a person) think? That's the only part they charge admissions for?
After the museum we headed back to hotel and had to take another taxi to NIH for delayed no contrast MRI of head and spine(NIH shuttle doesn't run in PM so was refunded later). Word of warning rush hour is mega slow going! if traveling during that time allow extra time for sitting in traffic and again driver time to clear security
.
Wednesday we headed to NIH in AM for the eye clinic. My appt lasted 5 hours! First we saw a tech that tested my field of vision, eye chart colour blindness and so on. He was a very friendly guy and very patient with my "laziness" of my eyes
in the end he took the time and found a prescription that really did help a lot it puts me still in legally blind range 20/200(similar to 20/20 scale but with my visual impairment its not very measurable with the small scale so the 00/200 is used, the first number is what I can see vs a "normal" person at 200 feet I'd have to see at the first number, that make sense?) Anything 20/200 or lower is defined as "legally blind" but omg compared to what I normally see! I'm mega stoked to get this pair of glasses
I was given the script to take back home and go to a place of my choosing. Makes everything so much clearer for me
.
After the tech, we saw the neuro optometrist. Her first question to me was "so why r u visually impaired?" Which I replied to with "that's a great questions and I'm hoping u can help me with that
" she seemed a little shocked that I really didn't know but then looked into my eyes with a bunch of different things. Test pressure of my eyes (normal range) dilated my eyes, look at my eyes with more things. She pause and said "in ur bad eye u have retinal scaring" (this I knew) "u have posterior subscapular cataracts in both eyes, more so in my bad eye(right) this is common with NF2 (this I never heard before and I was told its not in my field of vision so will not help my vision with removal). Also in my better eye (left) I have a retinal hamartoma (tumor) in the muscular area that may or may not have been their from birth that may or may never grow" (never heard this before either) Needless to say I was freaked out with TUMOR and better eye being in the same sentence but no sense stressing we all know what stress does to nf2 so wait and see
(think I've heard that before) gulp/smile. The neuro-op said there was nothing "they" could do about the tumor, I'm not totally sure if my the word "they" she meant NIH or in general? Anyone ever had this type of tumor removed??? Treated?
I was then sent down to 10th floor to do pictures of my eyes and inside eye! OMG that is rather ummm bright and painful even at times I think there was more picture taken of inside my eyes they I recall flashes from camera's on my wedding day
seriously they sure take a ton of pictures!
By this time we where an hour late for my ENT (ear/nose/throat Doctor) appt on 5th floor. So we rushed down to met with the ENT. I'm not sure if it was cause we where rushed and short on time or what but he was in and out much like canadian docs
He said I have no brain tumors and we talked about swallowing. He decided to put a scope down my nose to look what was going on. It appears my left voice box is paralyzed he's sure its either a result of surgery or a result of tumors (AN) taken out too large, he said he had no recommendations and was out the door in a snap.
I went to talk to Rene my RN about a captioning booking problem (was without CART captioner for a bit) then we where done for the day.
I was tired actually I was more tired then tired! Who knew trying to (key word) trying to focus ur eyes was so draining
. We went back to the hotel and slept woke up went to eat and back to sleep for the night
. The time difference to NIH is 2 hours from Alberta going there I found it pretty easy to fool my brain it was later then used to at home
.
Now coming back to Alberta was a whole new game
. Tired from travel and appts and my body/brain being fooled we where two hours ahead
wasn't so easy to fool it back!
Thursday my last day of appts we saw the neurosurgeon (NS). He was a very nice guy to meet talked slowly listened to all my concerns went over all I had brought to show home. He went over my MRI's as well as an overview of all my appts I had through the week. He said that I have no regrowth for AN's (acoustic neuroma's)which was amazingly good news
the only "brain" tumor I currently have is one on my swallowing nerve? Huh? (ENT didn't mention this?) Since I'm having a little trouble with swallowing currently (choke on the odd thing, especially dry stuff I have no hope without water to wash it down) he would like to do a swallowing test during my next visit, which I agreed too. ONE brain tumor considering my moms history with nf2! is backflips kind of news, I was expecting way worse so huge weight lifted
Secondly he said my spinal MRI looks very good, I have many many small tumors (his computer was down so I didn't actually see-see the scans till he sent me in email later when requested, he asked me to remind him to send them when I got home) he said looks like a pearl necklace in ur spine, now to me that sounds a little scary but he claimed its good news and doesn't expect much problems from them. (I'm terrible with spinal tumor names he mentioned I have two types the inside the spine "pearl necklace" started with an A? Or E? Ill figure it out anyone know? And otherwise have again many small schwannoma (outside the spine) spinal tumors and experience isn't my area and praying its never scares the heck out of my from my moms troubles she experienced.
My 3 larger tumors on my spine r according to him the easier type to remove, schwannoma, and he would be happy to remove them for me if that time comes. They all r in the L area of the spine he doesn't expect me needing spinal surgery in the near future, which is great backflip kinda news as well
all 3 tumors still have space to grow and shouldn't be causing any problems at this time....... So that being said! Why is my leg weak? Why am I having pain in my right leg? Why do I trip with my right leg over nothing all the time? Canadian doctors where sure was L3-4 spinal tumor causing it! Not to mention the surgery itself I was told is far too risky? Yet the USA surgeon sings a different tune? Ill take US surgeons word for it
He thinks either I have a tumor in my hip much like my elbow tumors where/are. he said he wouldn't be that surprised if it where that since my nf2 is a lot of surface tumors vs the head/spine currently, then added but I also wouldn't be surprised if it where cause from poor balance (who me? Lmao) which is causing the trouble. he asked if I could get to a physio therapist and have them look for Sacro-iliac joint associated tenderness and muscle wasting on that side if they do find that's the problem then saves myself a hip MRI, if still not clear why, he would like to order a hip MRI when I return in may. He's hoping we don't need to come to that cause finding more tumors is never fun
I will also see physio at NIH my next visit as well as will be seeing a speech therapist as my voice seems to be being effected.
He was impressed with my canadian NS with removing 2 or my four elbow tumors with little to non damage to my hand (regained pretty much all back now
and before surgery was having so much problems with weakness) so one point for canadian NS
Overall as far as nf2 goes I was given a pretty clean bill of health and I gotta tell u its a huge relief off my shoulders
being a mom I can now stop stressing about a lot of stuff that my anxiety level has been high on
just worried about the eye thing but who wouldn't be, right? After visiting with the NS, Rene came and spoke with us about any concerns I had or anything I could think of to make my trip in may better. She took a picture (I'm sure very flattering) of my face to document my facial palsy. Then headed downstairs to sign release for info and MRI's from my visit to be sent to me once ready.
Thanks for taking the time to read this sorry been slow at getting it done its a lot of info to digest and take in but I'm very glad I had the chance to go to NIH and very happy to be a part of this study! Helping doctors better understand nf2 will bring us better able to treat nf2 and one step closer to a cure!!!
Here is some info u can find on the study online
Feel free to contact me if u have anymore questions at
dee-ann.m@telus.blackberry.net
