Swimming Against The Current

Yesterday I got all my staples out and Dr. Pilitsis said everything looks good.  I couldn't have asked for a better surgeon.  She is the kindest doctor I have ever met and she has helped me so much.  I am actually upset I wont be going back to NY to see her because I feel like she's more of a friend than a doctor.  Wednesday, I am seeing Dr. Novak to get "turned on" and programmed.  I am excited to see how it goes with both sides this time.  I cant wait to open my hands!! I hope everyone has a very safe and happy New Year!!

Last wednesday, my parents and I got in the car and started our trip to New York around 3am.  It took just about 3 hours to get there so we arrived by 6:00.  My pre-op appointment wasn't until 7 (arrival time 6:45) and the doors to the building didnt open until 9:00 (didnt really make any sense).  Anyway, I ended up behind a doctor who could get in so we managed to get into the building.  We went to Dunkin Donuts and got some breakfast and wasted time until I could check in.  By 7:00, I was heading in for pre-op and didnt really know what to expect because they said it could take 2 hours but last time it took less than an hour.  They did all my vitals, asked about my medical/surgical history and sent me to the lab for blood work.  It all took about a 1/2 hour and then I didn't have my appointment with Dr. Pilitsis (the surgeon) until 9:15. We wasted some more time then went to see her.  She explained what was involved in the surgery, about how lon...

So the time has come.  I never really thought it would but its starting to hit me that its real.  Tomorrow morning we are leaving at 3am to head to NY.  I have to be there are 6:45am for pre-op and Thursday for surgery.  I am so nervous.  The thing is though, I am more upset and nervous about leaving Hailey.  I know in my heart she will be absolutely fine, she will be in GREAT hands and she loves her grammy so much, I know she will have a wonderful time.  I am more worried about me missing her on Christmas morning and seeing that beautiful face as she walks out and sees all her presents.  Not that she knows its Christmas or has any idea what presents really are but I was looking forward to it. Anyway, I'm sure everything will be fine.  The plan is to do both sides and both battery packs all at the same time and as long as I am feeling good and I am ok to leave, I will be coming home on Christmas eve.  I'll meet Ryan at my parents so I c...

After a long battle with the insurance company, we have finally got things approved.  My dad fought for me to get put on a PPO plan instead of an HMO so I could be covered out of network.  Yesterday, he received a call telling him it all worked out and the surgery is all set.  I'm pretty anxious and didn't sleep much last night.  For some reason I never really thought it would happen.  Now its all real and as happy as I am, I am scared to death.  That feeling in my head after they drill that frame to me is sickening and thats all I can think of.  But... I know this is all going to work out and I cant wait to have my hands back.  I will hear more today, about a date and everything but I think its going to be either December 20th or 22nd.  I am hoping for the 20th!!  I'm not positive, but I think they will be doing both sides this time to help the dystonia on my right side too.  I'll update everyone again when I hear more!  Yay f...

So my insurance company denied my surgery... TWICE.  Its now up to me to fight.  They told my surgeon that it is no longer her business and I need to appeal it myself.  I sent letters and wrote urgent all over it.  The person I spoke to told me if I wrote urgent they would give me an answer in 48 hours.  I spoke to them on Friday and they said they'd have an answer this week.  I spoke to them again this morning and they said they will have an answer in 30 days.  I am trying so hard to be positive but things arent looking too promising.  My next step is to turn to my secondary insurance.  The doctor's office was supposed to contact them today, so we'll see.  If both of them deny it, I will have to find a new surgeon in MA which I really don't want to do.  I will have to start out from the beginning and have all the tests re-done and probably wont end up having it for months.  It scares me to know how long it could take because o...

So on Tuesday I got the e-mail that said my surgery will not be November 17th.  Since then I have been getting e-mails from the administrative assistant saying it still could be, and I started to have hope again.  The other date they gave me was December 8th.  This morning I got an e-mail from the doctor herself saying it will be December 22nd or the 30th.  I chose the 30th because of Christmas.  So it looks like I will be waiting another month and a half.  The stress of all of this is making everything worse.  I get neck spasms several times a day.  Every time this happens its very hard to breath, talk and eat.  Its so scary!!

I remember the frame being drilled into my head. I was awake and had the worst headache ever.  when it was over, i had no hair.  I cried because I thought people wouldn't like me.  I cried because of the scars, because of the reactions I would get from other people, and I cried happy tears because I was getting better.  It was quite a rough time in my life to go through brain surgery but I did it to get my hand back, I did it for my daughter and I did it for myself.  A month went by and my hand was working.  I cant even begin to explain how happy I was.  Until the infection.  May 21, 2011 was a very depressing day for me.  Once again, brain surgery only this time I would come out worse... with no hand again.  What a road ive been down since then.  Today was a bad day.  I have lost two fingers on my right hand and physical therapy wasnt much help.  My neck is twitching bad and sometimes i have a hard time breathing.  ...

i am starting to have anxiety.  i hate everything about dystonia.  i hope everyone who reads this can help me promote awareness and help to find a cure.  i am thinking of finding a walk or something to take part in, would anyone be interested in joining me?  things are getting worse by the day.  my back gets stuck now and wakes me up alot at night.  last week two fingers curled in on my right hand and have not released.  it makes me sick.  i cant do anything.  its so hard to lift hailey, to get her dressed, to cook and clean and do normal things a stay at home mom does.  its ridiculous.  sometimes my hips and legs hut so bad i feel like by next week i could be in a wheelchair.  i dont really know whats happening with my surgerym, i guess they still havents heard from my insurance and the frame to hold my head in place hasnt arrived yet.  another thing to make me sick.  ugh.  if they cant do it november 17th...

The last few days have been difficult for me.  My right leg and my right hand keep acting up on me.  I originally had the dystonia only on my left side and now I am starting to getting real worried about it attacking my left side as well.  On the bright side, UMASS called me to schedule a brain MRI so I am assuming the insurance company ok'd my surgery.  If so, it will be in NY on November 17th.  I will be going there and staying in a hotel the night before the surgery and will probably be there for 3 to 4 days after before I head home.  As of right now, my parents will be going with me to help out with Hailey.   Speaking of Hailey... She is one now!  I can't believe it!  She is so funny.  She walks all over the place now and loves to shake her head no.  But if I say no to her its a different story!!  haha.  She has hit a shy stage and cries when strangers talk to her or sometimes just look at her!  Hopefully she'll ...

After a week at Fort Myers Beach with Ryan's Family and a long drive home for Ryan, we are now back in MA.  The weather is beautiful, everything I've wanted since being in FL.  You don't realize how much you miss that cool breeze coming in the window until your away from it for so long.  Hailey has had a bad cold since we've been back so she hasn't been herself but hopefully she will be back to her happy self  very soon.  We have been busy talking about and planning Hailey's first birthday party which is in a week and a half!  I cannot believe she is almost one already.  It's crazy how time flies.  She is definately close to walking but not quite there!  She loves pushing her toys around and standing on her own.  She has taken a few steps but not too many yet!  Last night for the first Pats game, she learned how to throw her arms up in the touchdown position.  She was so excited and proud of herself!  She has also f...

As my adventures in Fort Myers come to a close I realize how close we are to Hailey's first birthday.  It seems like just yesterday I was anxiously awaiting her arrival, being on bedrest for 2 weeks because of early labor and then walking and walking trying to get her to come when I was far enough along and she just didn't want to come.  I guess she was mad they wouldn't let her come the first time.  I can remember the feeling of joy overcome my entire body when I looked at her for the first time.  She was absolutely beautiful (and still is!)  Her hair was the biggest surprise to me but I loved every piece of it.  All 8lbs 4oz of her was perfect.  Each month passes so quickly and as I watch her grow I can't believe how much she changes.  First she smiled at me, then learned to say "dada" and then "momma" and now she even says dog!  She then started scooting, crawling, then pulling herself up and now walks pushing her "push" toy!  She st...

When Ryan first asked me to move to Florida, I was undecided.  I was just finished school and was hoping to find a job.  At the same time I didn't want Ryan to move so far away from me.  But all my doctors and family was in MA... there were so many decisions I had to make and I am so glad i made the one I did.  These last two years have been hard but amazing and if I didn't come here I wouldn't be where I am and probably wouldnt have little miss Hailey.  It has been one hell of a journey and I can't wait to continue our life together as a family, wherever that may be.  I am so proud of Ryan for all that he's done and I appreciate all his support through my surgery and everything else.  He has one more week of clinicals and then he is done school!  Next week we will finish packing, my parents come next Thursday (the 25th)  and his parents and sisters come next Saturday (the 27th)!  And graduation is Sunday the 28th! After his graduation w...

I'm sorry to all of you who think I am complaining.  I am not doing this to complain, I am doing this simply to help others.  I feel that if people read my story, they will know what dystonia is like and people with dystonia who are thinking about DBS will know more about it.  As bad as it was to get the infection and have the DBS taken out, it was a great experience because it worked and now I can have it done again but this time know what to expect.  As far as my shoulder goes... I am desperately seeking some help.  I would love it if I knew how to pop my shoulder back into place.  Even when I have a shoulder subluxation not a dislocation it is very painful and wish I could just get some relief.  So if anyone has any suggestions let me know!! :)

A couple days ago I was going to the store with Hailey.  Sometimes this is a lot of work by myself but for the most part I do okay.  Well we got to the store and I went to take the stroller out of my trunk to put Hailey in.  My left shoulder popped so loud and my arm just dropped.  Immediately, my fingers went numb.  Not only was this very painful but also very frustrating.  Now, I was kind of stuck and had to either lift the stroller again to put it back or lift Hailey (or eventually do both).  I was scared but I have learned over the years to do many things with one arm.  I know this is very annoying to everyone around me because it happens so often but it is very annoying to me as well!  I have been icing it off and on all day every day since it happened.  This morning when I woke up, after sleeping with the ice pack on I felt okay, and decided to try to pack some stuff since we will be moving soon.  Not such a good idea.  I...

It's officially August, which means Ryan is graduating soon and we are moving back to MA shortly after that! I have been very busy lately packing, cleaning and organizing.  Last week I had a CT scan of my head and the infection is all cleared up.  I also saw Dr. Novak and he gave me some muscle relaxers for my leg cramps and some botox in my arm to try to keep it lose so the surgery will work right away when I have it again (which will probably be the beginning of October).  I think he may have given me too much botox because my arm is so weak I cant do anything with it!!  My shoulder has been so sore too!  I have come to the conclusion that DBS helped my shoulder pain (woohoo) and botox makes it worse.  It feels like all the muscles around my shoulder are usually in spasm and holding it in place but with botox its so lose that it just hangs.  Its just so painful and I dont know if its worse to have it too lose or too tight!! Hailey is doin...

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...

The last few days have been the worst days I've had in a long time.  I was very hopeful and positive that I was getting better until this whole infection.  I had an MRI on Monday and they couldn't finish it because my head felt weird when they turned in on so I ended up having another CT scan.  The CT scan showed that the infection had spread and the whole device had to come out.  Tuesday morning, they took it out.  I am devastated.  My hand is already curled in and my feet have already been acting up on me.  I just don't know what to do, I am back at square one and just want to go back to FL with Ryan.  I was so looking forward to going back there and being better.  When the infection is gone I am going back there and when we move back I will have the DBS put back in.  There is only one problem.  My surgeon is moving and will be working in NY so I will have to go there to have it put back in and I'm not sure if my insurance will wo...

On Tuesday I had a CT scan to rule out a blood clot in my brain because I have been having very bad headaches and dizziness.  There was no blood clot but there is swelling in there.  The doctors think the infection could have spread into the stimulator.  In cases like these, they usually remove the whole device.  I REALLY don't want them to do that.  Not only would I be upset because it has been helping me but I was planning on going back to FL the beginning of July and I really don't want to have another surgery.  They are waiting until Monday to do an MRI and go from there.  They said if I get any worse over the weekend I need to go to the ER but hopefully that won't happen.  Ryan's coming home tomorrow, my cousin is getting married Saturday and my nephews birthday party is Sunday! This weekend is a bad weekend to spend in the hospital!!

The IV is still in, and its still a pain in the butt. I started wearing an apron around the house so I could put the bottle of antibiotic in the pocket. I look a little foolish but I dont really care anymore!! My head looks much better then it did before they cleaned it out. I am so glad I called the doctor and got it all settled before the stimulator got infected. I am seeing an Infectious disease doctor tomorrow to make sure everything is all set and they just increased the dosage on my antibiotics so I hope it will be all over soon. I still have 3 1/2 weeks with it. I am hoping to go back to Florida after that so I can spend some time there with Ryan before we move back in September. My hand is still doing pretty good, my wrist is pretty much straight so I got rid of the hand brace!! It feels so good to have that off!!! My neck did get stuck once though and both feet have gotten stuck twice. I am a little nervous but I hope it doesn't keep happening. Hailey is doing g...

Well its been quite the ride here. Yesterday, I was planning on going home all day. Even though no doctor or anything came to see me until after 3pm, I was still hopeful. They kept telling me they were waiting for Infectious Disease to come tell me what antibiotics I have to go home with. I think he finally came just after 4:00 and said the infection wasn't that bad and I didn't need the picc line, just oral antibiotics. I was veery happy because now I could hold Hailey and get the hell out of here!! Once again, too good to be true. A few minutes later, the PA came in and said that the neurosurgery team didn't see eye to eye with Infectious disease and they still wanted me to have the picc line. They said I've come too far and they want to be aggressive and save this! I was happy with that because I feel I've come to far too and I do not want to start over!! So, anyway I didn't go home yesterday. They had to do some research to see what meds to send me ...

Everything was going great. I could finally see an end in sight. My hair was growing back into an awkward, yet longer stage and beginning to cover atleast one of my scars. My insicion on my chest was beginning to finally heal and my hand was beginning to open. I was the happiest girl in the world knowing I could open my hand after having it closed for 3 years. It felt like a miracle. I should of known this was too good to be true. Last weekend, I bumped my head on the hood over the stove after trying to plug my phone into the wall right next to it. Who knows how I did it but all last week the incision began getting ugly. Yesterday I decided to ask Jenn to take a look since she's an RN, I knew she could help me out. She squeezed it and said she really didn't like the looks of it and I should call the doctor. After calling my neurosurgeon, I found myself driving back to the hospital so they could take a look. My mom, Hailey and I walked into the ER, thinking we would b...

I knew when this happened to me that it wasn't going to be an easy thing to fix. I remember sitting in the physical therapists' office and she kept telling me my shoulder was dislocated and I had to go to the ER. After several trips to the ER because of this, I didn't feel like doing it anymore. This time though, it seemed a bit more serious. I couldn't feel my ring finger or my pinky finger. They were slowly curling into the palm of my hand and I had no idea what was happening to me. At the time, I never imagined I would lose use of that hand completely....but I did. It makes me sick to think back on it and remember that no one knew what was happening. They thought it was from my shoulder. The orthopedic doctor I was supposed to see at Leominster Hospital had to leave because he was adopting twins the next day so I ended up seeing someone else. No one there knew what to do with me. It was like I had some bizarre disease that no one had ever seen but they cou...

Today I had my third programming session. I am feeling pretty good. He turned it up quite a bit and I felt weird at first but my hand loosened up. Dr. Novak had his finger under my fingers and could feel when it got looser and tighter. He was pretty excited about it, as was I!! I might have to go back tomorrow or Friday, or both. I really think its going to work. Everytime I go, it makes me feel very energized and giggly. When he turns it way up I just want to crack up. Its kind of a bizarre feeling but I feel great. I also got my staples out today and the stitches out of my chest. The incision in my chest doesn;t look that great but they didn't seem concerned. Hopefully it clears up. Hailey is doing great. She is getting so big and trying so hard to crawl! I also think she's getting some teeth! She chew on everything and hasn't really been herself lately. Her and I are so excited to see Ryan on Friday. He's coming home for the weekened and we haven...

On Monday May 2nd, I had the second part of my DBS surgery. I got there at 6:15 and by 7:30 I was being wheeled into the operating room. I dont remember much after that until I was waking up in recovery. I had a severe headache so they gave me pain medications and wouldn't let my parents come see me. A little while later I had to go to the bathroom and did't want to go on the bedpan so they tried getting me up. I felt pretty dizzy and didn't feel that good so they tried laying me back down. I don't remember much after that except the nurse yelling "I need help" and there were 4 nurses picking me up. I must have blacked out. After that they gave me so many pain meds that they had to keep telling me to breath. It was very scary. My parents could finally come in after all of this and I was so happy to see them! My nurse wasn't the greatest but the nurse I had next was even worse. I had one nurse from 4-9 and she was absolutely terrible. She ca,e ...

Monday morning I went in for the first part of my DBS surgery. It was a very scary morning. I went into the operating room and they put me to sleep to shave my head, do a CT scan and attach the frame to my head. I had to be awake after that so they woke me up and oh my god the pain in the back of my head was unbearable. I started crying that my head hurt so they gave me some pain meds and the pain went away right away. I remember the doctor moving my foot and arm all over the place and it was pretty tight. I kept saying I was freezing because it was so cold in there so they kept layering on the blankets. I asked the dr if he was almost done and he said not too much longer and shortly after that he said "We're turning it on!" So, they told me to move my foot and it felt so good to wiggle it. Then they said "How about your hand?" and I opened my fingers right up. I remember it perfectly and it was so amazing. They were very happy with the results. They put me back...

For everyone that knows a little girl: i have started my own business making hair accessories, tutu's and flip flops for little girls. (I have also made flip flops for adults!) You can find me on Etsy or on Facebook under Mandi's Bowtique. Please check it out and pass the word!! I can make any size or colors you would like! :) p.s. Im leaving in one week to go to MA and having surgery in three weeks AHHH!!

Sleeping at night is getting harder and harder. When I close my eyes all I can picture is getting my head cut open and all I can hear is the drilling. When I look in the mirror all I can think of is in a month all this hair will be gone. When I look at Hailey I just want to cry because taking care of her is going to be so difficult. But then I think about how difficult it is now to pick her up, and how much support and family I have that will help me take care of her. And in the long run, when I can hug Hailey with two hands, this will all be worth it. It is so scary, but I am doing this for her, and I will get through it. The first surgery is scheduled for April 25th. I am heading to MA April 11 to prepare. I am having an evaluation on the 12th, pre-testing on the 13th and a MRI under anesthesia on the 14th. On the 15th my sister is having a 31 gifts party for me so I can maybe get some scarves to wear on my head. My family is so wonderful, I love them soo much and I dont kn...

It looks like I will probably be having the surgery. I am waiting for Ryan to hear back about doing a rotation in MA so he can be there with me. I have a pre-op evaluation scheduled for the end of April and I'm waiting to hear back about a surgery date. I am very nervous but think this is the best thing to do right now, and I am hoping for a fast recovery and to be feeling much better very soon. Kristy, Gary and the kids came to visit these last couple days and we had so much fun! We hung out by the pool a lot and went to the Red Sox/Yankees game last night! It was a lot of fun and our kids were a big hit and were taped twice! Hailey has been doing very well. She is almost 6 months old already! I can't believe how time flies. She loved having Zach and Libby here, so much that she's been sleeping for 4 hours because she wouldn't sleep when they were here!

Last week I went to MA for an appointment with my neurologist and with a neurosurgeon. My neurologist explained to me that DBS was my only option. We've tried so many medications and botox so many times and my symptoms never improved. Since Hailey was born, things have gotten worse and there is a lot of hope for me with this surgery. I met with the neurosurgeon the next day who agreed with the DBS. She explained the surgery to me. I will have to be there at 6:30 am and the whole thing should be done by 1:30. I will need a frame put around my head and an MRI and CT scan. They will also need to shave my whole head. I will be put under anesthesia while they cut my head open but once its all set I will be awake when they put the electrodes in. I will need to spend 1-2 nights in the hospital and cannot lift anything for 2 weeks. One week after this surgery I will need to go back in to have the pacemaker put in. The wires from my brain will connect to the pacemaker and a few w...

Ever since I heard the words "Deep Brain Stimulation" for the second time from a second doctor, I have been reserching it a lot. As much as I want to know everything possible about it before I go through with it, I don't know if it is such a good idea to be watching videos of it. I watched a show the other day about a girl with dystonia who had DBS. Her's was much worse than mine but her hand looked very similar. They showed her in surgery and when they told her to move her hand, she just opened it. It was a miracle. Although she's not cured, she can now do so many things she never thought she'd be able to do again. My left foot is now pretty much curled in most of the time. I can still walk but it turns in. I have spasms so frequently that I just don't bother mentioning it anymore. It's very annoying. My neck also twitches now to the left at times, mostly when I'm stressed out or thinking about this surgery!! Well, I'm going to MA a...

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying...

2010 brought me many difficult times but it also brought me the most amazing daughter in the world. There are no words to describe my feelings for her and although it wasn't planned, I wouldn't change a thing. She is my life, my world and everything I have ever dreamed of. I have had many tough times with my dystonia. My spasms have become more frequent and annoying but mostly painful. While I'm sitting on the floor playing with Hailey my legs will just lock up. While feeding her, my neck has gotten stuck. It's the scariest thing I've ever experienced. The insurance here in FL is out of control but I have finally found something. I will be seeing a specialist at the end of January in Gainesville at the Dystonia clinic. I am hoping to get botox injections in my arm to relieve some of the pain and discomfort. I will no longer be able to breastfeed which breaks my heart because it is such an enjoyable bonding time for me and Hailey. But, without botox to hel...