Thursday, July 7, 2011

One Month Post CCSVI

Its been a month post liberation procedure and what a busy month it has been!! last thing I blogged about was going to the beach and not realizing until watching my videos how awesome I was actually doing. Well since then  a friend has been in town and she ran me ragged as far as testing out my endurance levels. Glad to report that I passed with flying colors. During her visit we went to the beach three times each time having to walk almost a half a mile to get to the shore. One day we took a trip to the beach twice in the same day. We went shopping, out to dinner and out for a couple drinks ( I do want to stress that I was wearing wedges the whole entire time). Not once did I have to sit down and rest and this would of never been possible before the procedure even with all the drugs coursing through my system!!

Last weekend my husband went and did a 2 mile hike through corkscrew swamp sanctuary...before I wouldn't have lasted 1/2 a mile and I walked the whole 2 mile board walk. I had to sit and rest and you could tell I was getting tired by the end but the fact of the matter was that I made it through to the end without crying, without tripping over myself, and without needing to hold onto the railing and drag myself the rest of the mile. On the forth we went to Barefoot Beach and it was packed so we had to walk about 1/2 a mile in order to get a decent spot without someone on top of us. We stayed there for about an hour, laying out in the sun and went swimming. We walked back and there was a nature trail that we wanted to walk so after walking back and fourth to the car twice we started out on the nature trail. About a 1/4 of a mile into walking the trail I was done my foot drop was kicking in and my legs were just tired. However my thighs did not feel tight and I didn't have the 100 lbs lead feeling that I was experiencing before the surgery. So although I was having trouble, things could of been worse and I realize needless to say I am thankful for that!!

I want to address the extreme that my legs were facing before the surgery. I dreaded going anywhere, I hated the beach, I hated the super market and I had to plan my day around my Ampyra effects. I still need the Ampyra and you can tell that once it kicks in I do have an increase in mobility. However now I can go to the store regardless of whether my pill is at its most effective state or not...I can walk and carry more then 2 lbs without my legs frankensteining. I do get tired and I still do have the foot drop but my energy level has improved so much and probably because I can do sooo much more then before. It has only been one month and I have not yet started an exercise regimen so maybe my legs need to build the appropriate muscles...maybe this is the most improvement I am going to see!!! Regardless of the case I am sooo extremely happy with what I have seen as far as improvement thus far!!!  Well I have yet to do a video and will get that up as soon as I can but I wanted to keep everyone updated on how I am doing and will continue to do so. Thanks everyone for your thoughts and continued well wishes!!!

Saturday, June 18, 2011

On a Side Note!!

I am feeling like I have been on three days of Solumedrol and for those of you who might need help with the reference I totally feel about 90% on three days of IVSM. The only problem with IVSM is not only the harm it does to your body but it only lasts me about a week if I am lucky =0( Only this is not IVSM...this is my liberation, holy crap do you mean this feeling, this WONDERFUL INDEPENDENCE from most of my MS symptoms feeling I have will last longer then a week??? Did I win the lottery?? Pinch me cause I think I might be dead...Nope still here!!! Well then what did I do to deserve this?? Please tell me because I NEVER want it to end. More poor husband has had to listen to me gloating on and on about this for one, two, three days now. Thursday I went downstairs to bring the trash out and one of my neighbors had decided to do the same thing, so we both threw our trash away and started walking back to the apartment building, I noticed I went right past her and up the stairs with such fluidity I amazed myself. I didn't once have to think about putting one foot in front of the other as usual it just sort of happened. Maybe she was tired, maybe she was daydreaming...whatever the case may be I beat her back to the building. Not that she was racing me, or me her but the simple fact that unintentionally I was able to walk faster then someone without known walking problems, made my day!! Later on I had to go to the super market to get a few things, then went into another store to get a couple more things, came home and carried a 24 pack of beer up the stairs without and I repeat WITHOUT pinballing off the stair rails. Matter of fact I did not even run into the rails once...smiles from ear to ear as I came into the apartment, ohh and did I mention I live in FL where it is 96 degrees and sunny?!?! Well then I had an appointment or what I thought was a scheduled appointment, foolish me because when I got to the building the Doctor had already gone home...weird not even a phone call. Ohhh well, I then came home and climbed the stairs once again to cool off in the air condition. Then after 30-40 min of cooling off I ran to the dealership to see about getting my oil such luck because I was not waiting an hour and half on a Thursday afternoon at 3pm...Nope!! Soo home again, with another climb up the stairs to the apartment, and yes it is still 96 degrees in Florida ;0) Well I was feeling a little frisky so I went into my room and grabbed a pair of wedge heels that had been sitting in my closet collecting dust for ohhh say 6 years. I decided to try them on and OHhhhHHH Mayyyaaaa GawwwwWWdddDD I could walk in them and not just high concentration, one foot in front of the other...but there was actual Struttung going on!!! YAY I heard my phone go off so I walked from the bedroom to the living room with the wedges on, grabbed my phone, headed into the kitchen to get some water. I started texting my GF and before I knew it, I was walking back into the living room WHILE.....WHILE Texting. Hello I was wearing 2 inch wedges walking and texting at the same time, best part, I didn't even trip or stumble it was Amazing!!!

Today Saturday June 18th 2011...10 days after liberation I went to the beach with my husband. Now normally I fricken hate going to the beach because I have to walk a mile to get to the actual beach and then a half a mile walk to find an empty space =0( Not to mention I can't go into the water without my hubby holding my hand like he was walking a 100 year old across the street because of the imbalance issues. Ohh and the way back to the car was always a nightmare because my legs were soo exhausted, I would generally end up crying from frustration on my way back...Needless to say, going to the beach was much more of a hassle then it was ever worth!! However today was different...10 days after liberation and I was able to proudly walk that mile strip to the beach without having anxiety attacks about people walking behind me. I walked that sand and found a spot to lay our was hot so we had to go into the ocean. Joe had to still take my hand because I'm not perfect, wasn't like walking a 100 yr old across the street!!! I could actually stand up in thigh high water with the waves beating against me and I didn't stumble or collapse...YAY Me!!! We spent an hour at the beach and decided to call it a day...Uhhh ohhh here comes the dreadful part of walking back to the car =0( Wait...what...I was walking back through the sand, up the ramp to the sidewalk (strip), washed my feet off and said to heck with it, I'm going to walk bare foot back to the car. It felt right and what a right feeling it was... normally tears would start flowing and forget barefoot, I would of broke my damn toe from catching it on the cement sidewalk (strip). Before I knew it I was half way back to the car walking at a complete normal pace and no foot catching at all!! AhhhHHHHhhhhHH YAY...what is this about placebo again cuz I'm soo damn happy about actual results I forgot what this placebo stuff they talk about is?!?!?! =0) I came home from that beach trip showered and went to Lowes with my husband. We walked around Lowes for about 5 min covering the length of the store. When we got home I decided I was going to completely hand wash and move all the stuff on my lanai all by my self. How great it really feels to be able to do things for myself again...How miraculously, effin, wonderful it feels to Finally be LIBERATED from this monster!!! I'm not going to count my chickens...I'm just going to be very thankful for what I have been able to regain from this procedure and let the cards fall where they may!!! Thank you God, Dr. Arslan, My husband Joe, and all the people from FB who have helped me fulfill this dream come true!! <3 U All!!

Wednesday, June 15, 2011

One week later

Well I have hit my one week mark and the pain has finally more percocet (sad face). I made my one week post video yesterday and I was astonished by the difference in the two videos (before and after). I guess I really haven't noticed anything substantial because I am living with the constant reminder of this disease. However it was nice to see that the surgery did do some good, especially after all I went through. I have talked to a couple people who have told me it gets better after 1-2-3 months and I really hope that what their saying is truthful as far as my body is concerned. As of one week post surgery I really cannot make a decision on whether it would be worth going back and getting this done again. I do however want to say that I am soo very glad I initially went through with the procedure, because I would hate to live with the regret of not knowing how or if it would work for me. It does work and I will be one to admit it is not placebo. I don't feel Pre-MS as of now, but I do feel different, and I don't believe the feeling that is happening inside my body is something a placebo could ever accomplish. I really did not go into this liberation thing with any expectations, if anything, I'm a pessimist and figured it would not do anything for me. I try to be as hopeful as possible but that pessimism always takes hold and I revert back to, me thinking "this is the most relief I am going to feel". We shall see...God knows this disease is certainly not going anywhere and all I have is time on my side, so I shall wait and see if there are any future results. I'll be the first to admit, although I am extremely happy for everyone that has had miraculous results, I'm also extremely envious, as I'm sure people who are much worse off, are envious of me. I dream of the days when I could bounce down the steps and run to the mailbox with no concentration on if my legs were going to correlate with my body. Now I have to think about every step I take and whether my feet are going to catch on the surface and if they will move forward like my brain is telling them to do. I know there are people out there that know exactly what I am talking about...its a sad reality for us, but it is still a reality that we can't dwell on. By keeping this journal I just want to let others know that you do not have to sit there and do nothing nor do you have to settle for one doctor's opinion! It is sooo very important to be your own advocate and push forward to get the care you need and rightfully deserve. One has to realize that neurologists are nerve specialist and they cannot determine the best care for a vein problem, ect..... Regardless if it works perfectly or even at all you need to know there are options, and although not many, they are still there.

Anyways getting back to the drop foot is still there unfortunately which means that there is some tightness still going on. Seeing I have been on the percocet I have not been able to take much of anything else, so I'm going on a little testing binge with baclofen, anti-anxiety meds, xanax, and my supplements to see if it changes anything. If I had to pin point what the surgery has done, which others might be able to compare themselves too, I would say its like getting 1 day worth of steroid injections with IV solumedrol. Now there are times when I feel close to perfect by day three of my injections so yeah I would say it feels like one day of steroids. It's not an exact match but it’s the closest comparison I can come up with. Enough rambling for now I will update in another week or so, unless something significantly changes btw now and then!!!

Friday, June 10, 2011

Day of the Surgery

My liberation procedure was in Tampa at the Moffitt Center with Dr. Arslan. I got up at 5:30 am to take my shower and get ready for an extremely long and stressful day. Woke my husband up at 6am for him to jump in the shower at which point I called Missy so she could talk to me before I left and wish me good luck. We headed out about 6:45am with plans on stopping in Port Charlotte to pick my mother up from my uncles house so she could be there for my very first invasive surgery. The ride to Tampa was usual nothing to exciting, traffic wasn't bad and it took us no time at all to arrive at Moffitt. We arrived at the hospital at 10am and had to wait because my blood work appointment was not until 11:30am. The clock said noon and my name was yet to be called so I walked up to the lab area to ask where I was on the list. The lady told me she had a couple more people left and then it was my turn. Finally at 12:15 my name was called, I went in for what felt like 5 sec for them to draw 3 vials of seemed kind of ironic for being so late on calling my name and waiting so long for 5 sec worth of their time. My surgery was scheduled for 1pm so we then headed up stairs so I could get registered for radiology. On our way upstairs, the suitcase my husband was wheeling around that had our laptop in it, attacked me on three different occasions. I should of know right then and there I was in for a very long day. I registered and headed down the hall toward the waiting area for my name to be called. I knew they were going to have me lay still after the surgery for a few hours, so I wanted to  go to the bathroom before hand, then I wouldn't have to use a bed pan. I was not even back for 30 sec after going to the bathroom and they called me in. I walked into what looked like an emergency room with a  huge nurse's station in the front of the room surrounded by post op beds. The head nurse came to me with a gown asking me to get changed, and a cup to pee in to test for pregnancy. Uhh ohh I had just gone to the bathroom not even a minute before entering the room, I was not made aware they were going to test for pregnancy. So while changing into my gown I tried peeing in a cup which could not only be accomplished because I had just went but my urination anxiety was heightened because I could hear people outside the door. I came out and said there was no way, so they gave me some water to help me along, meanwhile telling me that if I could not pee they would have to cathe me...I have never had one done but I recalled the horror stories my hubby would tell of his collapsed lung incident and had to be cathed...AhhhHHhh (no pressure) They gave me a half a bottle of water and I still had no luck urinating more then a drop =0( The ended up having to cathe me which I will admit was not as bad as I had thought...wheww. Pregnancy test was negative, so it was an all go for surgery. They asked me a few more questions had me sign a few more papers and proceeded to roll me back into the operating area. Upon entering into the room I was greeted by 5-10 nurses that were there to assist the Dr with the surgery. One prepped my site and the others got the equipment and iv sedation ready. They gave me a dog squeeze toy to hold in each hand and proceeded to push the sedation meds. A few min later the Dr came into the room and gave me a refresher of what he was going to be doing, telling me that he needed me to communicate everything that I was feeling and experiencing the whole entire time. The gave me the numbing agent for the insertion site and proceeding to start with the venogram. As he reached my left jugular just behind my ear he explained that I was 70% stenoised and he was going to use a 12mm balloon in a couple different places. While he was ballooning it sounded like a pill bottle with only one pill left being shook behind my ear. I sqeezed the dog toys and wiggled my toes assuring there was no damage being done. He then went over to the right hand side where I was 50% stenoised and ballooned. While he was pulling back out I heard a  loud snap..totally numb I thought oh god my vein just burst, but it was only the balloon deflating. It was such a weird sound coming from inside my body around my clavicle. He then checked my azygos vein and said there was slight stenosis there but not enough to balloon so he proceeded to remove the catheter. The tech then deeply messaged the site for about 10 min. I finally get back to the post op room where I was reunited with my mom and my husband. They gave me food, I met with Dr. Arslan a couple times to see how I was and I proceeded to lay still for 4 hours. I was surprised that the whole 4 hours I was able to lay still without wanting to move my legs although I started to hurt at the incision site so the nurse pushed some ibuprofen through my IV. About 7pm the head nurse came over and started the check out paperwork and told me she was going to get me up and changed. I was a little worried because my blood pressure was very low 89/58. She proceeded to sit me up and get me on my feet and we walked to the bathroom. I sat on the toilet because I had to pee and as I was going to wipe I looked down and saw my site bleeding and once I smelled the blood it was the last thing I remember. I woke up with the feeling of pain in my head and the feel of cold concrete on my face. I remember at first not knowing where I was and turning around to see my husband for a quick second looking down on me. Once the Doctors and nurses started flooding into the room I then realized where I was and what happened. They started hooking me up to the blood pressure machine and checked my blood sugar which was 93 (so it wasn't that). They got me back into the bed and explained that I have what is called vasovagal response to the site of my own blood (made sense I have always had this but never knew this was what is was called, I though I was hypoglycemic). My whole left side of my face was throbbing, I also had a huge egg on my head. Luckily however my left ear was the shock absorber to protect the majority of my head. Still they explained with the amount of blood thinners coursing through my body they could not release me but they also could not treat me at Moffitt for they did not have the right equipment to check my head for trauma. The nurses at Moffitt proceeded to call 911, which sent the fire rescue squad, who could do nothing because they did not have an emergency response vehicle to transport me over to the other hospital. The fire squad called a private ambulance company to get me over to University Community Hospital which was literally right across the street. They got me over to the hospital and it was certainly not Moffitt...I was determined not to stay the night in this place. The nurse, tech and doctors were all fabulous though and took very good care of me. They took more blood work, did an EKG, CT Scan and some other cardiac testing to make sure I was in tip top shape to go back to the hotel. Everything came back normal so they released me at 11:30pm with a weeks worth of percocet that I was extremely happy to receive because at that point I was in severe pain from the incision site, the egg on my head and my neck was slightly sore from the ballooning. We headed to Denny's for some food and then eventually back to the hotel to sleep. I woke up the next morning at 6:30am in terrible pain and my husband suggested we hit the road so I can get that percocet prescription filled. I could barely walk I was soo sore and my anxiety level was through the roof. We get back to Naples and head to publix to get my prescription filled, while my husband was in publix, I remained in the car and started to spike a slight fever. Once we got home I went and laid down while my husband fixed me a high protein breakfast. I took my temperature and I was running a fever of 99.8, so I ate and proceeded to sleep. When I woke up I could still barely walk and once I looked at my site I noticed severe bruising stretching outside my bandage. I emailed Dr Arslan and waited for his response regarding the normalcy of the bruising, He wrote me back suggesting if it was possible or if the bruising continued to worsen to go to Moffitt and get checked out by his colleagues. I agreed that if the bruising worsened by Friday I would go get checked out. When I woke up this morning (Friday the 10th) the bruising was slightly darker but it remained in the same areas as the night before so I did not seek treatment. However for those of you that do not bruise as easily as I do I looked like I got pummled by a base ball bat in my groin area. I still continue to have pain at the site and the bump on my head still hurts but I have been pushing fluids and protein to help with the healing.
Well that is my personal experience with my liberation procedure as of two days post operation, not exactly what I was expecting to say the least but I should of known, because things like that never goes easy for me. I was reminded that I have an extremely low tolerance for pain and my body does not react well to trauma. I wish I had better results right off bat but unfortunately that is not the case, I believed I sent my body into inflammation and until that goes away I will not be able to report on any symptom relief if any is felt. I had previously scheduled steroid injections for the week of the 20th because my best friend is coming down and I wanted to be prepared in case I had no response to surgery. Good thing I scheduled the roids, because now I do not have to explain anything to my neurologist ;0) I will continue to update this blog as well as youtube regarding my progress or lack there of. Welcome to my journey...hope you enjoy the ride!!!