Search This Blog

Sunday, October 17, 2010

Allison's Fight going well!

I will start off by saying, sorry for not keeping followers updated but at this point, no updates pretty much means Allison is doing well.  Since her June procedure, she has had oupatient ketamine infusions lasting for 4 hours on three consecutive days each month since July.  She just finished her last round this past Friday and now will begin going every other month for the time being.  Believe it or not, we still have not received our hospital bill as the insurance company and hospital are still back and forth about who is going to pay for what.  We have the feeling that the hospital will be sending us a bill soon.  Anyway, donations keep trickling in here and there and we just broke $23,000 last week.  Thanks again to everyone who has supported Allison and our entire family since we began this journey.

Monday, August 9, 2010

Allison Update

Well, well, well...Since Allison's 5 day procedure in June she has had 2 series of 3 day outpatient treatments at Wentworth Douglas Hospital in Dover, (all covered by insurance, thank God, at $7500 a session).  She most recently was in treatment as part of the doctor's plan this past Wed-Fri, August 4-6.  It was strange for Allison to go into an infusion for the first time feeling pain free.

Allison says she has been "reborn" and isn't it the truth.  Allison has continued to do things she wouldn't have imagined doing ever again, watersliding at Water Country, staying on her feet all day and night long at our annual neighborhood party, enjoying a windy day at the beach, jumping in the pool, using exercising equipment, taking a shower daily, wearing more tight fitting clothes, watching me play hockey at an indoor arena, sitting on a wood chair in a resturant, and being like we are on a second honeymoon (that's all I will say about that), just to name a few things that many of us take for granted each day.  At the top of  Allison's list is going to bed not crying and waking up feeling rested and again, not crying.

For everyone out there who feels they have it bad, someone out there has is worse, much worse.  Live each moment like it's your last and don't take sleeping at night, going for a walk on the beach, sitting by a camp fire on a windy night, or hugging your family for granted.  Believe it or not, there are people out there who cannot do these things.

For those interested in knowing about the hospital bills, we are still waiting to find out if the insurance company will cover any of the cost.  Initial bill was for $41,300 and so far insurance paid for $4,800 of the doctor's fees leaving a balance of about $36,500 and we raised about $23,000 thus far.  Thanks you everyone who donated or helped raise all the money thus far.  It certainly makes things more manageable and worth every penny.

In hope and in health to everyone,
Greg (Husband of the bravest and most courageous person I have ever known in my life)

Friday, July 2, 2010

Update

So since Allison and I have been back from NY, Allison has done somethings that she hasn't done in a very long time.  When I say long time, I mean about 10 years or so.  She went swimming with myself and Griffin at the pool, she kicked around the soccer ball at the beach, she put on a pair a jeans, and she took a shower, all of which did not cause her any pain.

Just when she was starting to feel great along with being able to carry on a conversation without getting dizzy or having a headache, she is back in Dover Hospital for three days of outpatitent infusion therapy, all part of her on-going treatment plan.  For 4 hours, she will get high doses of ketamine, 60mg per hour, which started on Wednesday of this past week and ends today.  She will be back again in another month.

Stay tuned...

Monday, June 14, 2010

Home Sweet Home!

Although we were away from home to get "healed", it was so nice to leave New York City after a hellish week.  To see my wife, bleeding from the nose, eyes, and mouth, crying, screaming, shaking, thoughts of suicide, paranoia, visual and auditory hallucinations, images of death, monsters, dark, and fear (the list can go on) made me without a word to say to except that I couldn't believe how much she could handle.  For all the things she had to endure in a very long week sums up how much pain she has been in for a very long time and what she would do to make it go away.

Allison's back is quite sore from having an epidural for 4 days while she was having her infusion.  Headaches are becoming less and she is starting to have more mindfulness with each passing day.  Right now her pain is gone but feels "different".  Perhaps her brain has been so confused over the past 12-15 years she doesn't know how it is supposed to feel.  Only time will tell.

For all your reading pleasure, Allison wrote some of her own thoughts and notes while "under the influence" during her infusion week.  As typed by Allison using her Samsung Moment Android Phone, (plug for Samsung, she loves her phone,  "Greg is my Edward Cullen.  Everyday, he showed up with a smile that took my breath away.  It filled my room and my world.  When he breathed in, I could exhale and when he exhaled and I breathed in, we were complete, nothing else mattered.  He reassures and consoles me.  I wouldn't be able to do it without him.  When people say they are scared of the shadows or that there are monsters, believe them, they are real and they do exist.  I have never been so scared in all my life and am unsure if I will ever like the dark again or go into the basement for that matter.  Whatever you call it....God, good energy, vibes, aura, karma or meta-chlorian counts (for star wars fans), it doesn't matter because it is true and it exists.  People may think its nuts but Greg and I grew stronger this week.  In a way, it was a sick twisted second honeymoon.  You don't need things like money and going on trips...all you need is LOVE!  What I did learn is that love is the only priority.  As long as I have my family: Greg, Griffin, Bella, Max, Kirby, Mom, Dad, Tim, Sue, Gavin, Ronan, and friends too, nothing else matters.  If I can't worry...enjoy the things I can do in the company of th eones I love and that love me back.  Whatever happens, we have each other and Harry Potter books help along the way."

Please note that there were plenty of typos and grammar mistakes that were fixed.  Not bad though for someone completely out of their mind.

Friday, June 11, 2010

Day 5

Allison made it throught the night again but barely according to her as "nurse ratchit" was her nurse for the night. Allison was convinved and paranoid that she was trying to kill her by giving her the wrong medicine and tying a turnakit on her arm during the night.  Regardless, Allison will have a different nurse tonight.

The ketamine is up to 60mg an hour, which is enough to special k to make about 60 people feel "special".  Her pain is completely gone and is using a normal cotton sheet for the first time in about 12 years.  She has lotioned her left leg without any pain.  Tears have been streaming down her face quite frequently as she can't believe how she feels.  "If only it stays this way" she keeps saying.  Allison has stated that she has a new outlook in life no matter how much relief she ultimately gets after being taken off the ketamine.  "The only thing that I care about is my family and friends, I am a wife first, a mother second, and a daughter/sister, and friend next.  My career as a teacher completes me but that comes after everything else."

To get Allison through these past few days, I have been reading Harry Potter and the Deathly Hallows to her.  She tries to keep focus on my voice and words as "fairies" "demons" "ghosts" "monsters" and "bright colors and sparkles" float around the room at the same time.  These are just some of the things she tells me and will not let me in on what she calls "very very bad things".  One can only imagine what this can possibly be.  She has told me that she has seen explosions, fire, and death quite often.  I think it is because we watched the movie 2012 just before coming to New York.

Allison is in PT now for the second time today and all of her treatment team have never seen a ketamine infusion patient handle this as well as her despite how bad it has been for Allison.  She has set a new record at the hospital for getting the highest dose of ketamine while maintaining her medical well-being.  Most people have told them to stop the treatment while Allison keeps telling them to raise the does and keep it coming.  She is so scared that the pain will come back but it prepared to handle again if it does.  We thank all of our friends and family that support us if or when it does.  Let's keep our fingers crossed.

Something good comes out of everything.  No matter the end result, Allison and I have been brought even closer together, if that is even possible.  We have experienced this together.  We both know what is important in life; friends and family.  Stop fighting, stop complaining...enjoy what you have and don't take a single moment for granted.  Life to too short and way to precious to have resentment, hatred, grudges, and fear.  Love life, love friends, and love your family.

We are on our way home tomorrow as soon as Allison is medically cleared.  The ketamine will be slowly titrated tonight starting a midnight until it is no longer being infused, which will be about 5a.  She will then be off the ketamine for 5 hours and we will be on our way.  The recovery for Allison following this will be a good 4-5 days of needing to be on some anti-psychotic medication.  She will then slowly get her own mind back over the next week or two and hopefully feel "reborn"  She will still need some "booster" treatments in an outpatient setting in Dover at Wentworth Douglas Hospital.  This is all part of the treatment to keep the pain away.  By the start of the new year 2011, Allison will hopefully only need a 2-3 day outpatient infusion of ketamine for a 4 hour period, 3-4 times a year or less without being on any pain medication for the first time also in over 10 years.  We will be having a narcotic yard sale when we return.  Just kidding....although I know some of you were hoping otherwise.

The doctor has told us that the bill will be in the mail  Oh, we can't wait.  It sound s as though a couple more fundraising events will need to be planned and your all invited.  We cannot wait to get the hell out of here although every moment has been worth it in the long run.  We miss you Griffin and love you very much.  Hang on to the loose tooth, we don't want to miss your first lost tooth.

Thanks to everyone!  We love you all!
In hope and love, Greg (and Allison if she could write)

Thursday, June 10, 2010

Day 4 continued...

Allison is doing very well today. Her epidural site it a bot irritated due to the nurses putting tegaderm tape on her back after the lead was pulled. Here is Allison's exact quote, "Doesn't anyone read the f$#@%ing chart before they do s$#@! It says ALLERGIC TO TEGADERM!!!" Anyway, Allison has a bright red and raised rash and was given benadryl, cortisone cream, and an anti-itch drip into her IV. Her itch is gone!

Allison is now again in PT singing the song to Driving Miss Daisy as she strolls along with her new best friend in the hospital. The physical therapist is adding a new component to her day which she looks very forward to seeing. Allison is still getting 55mg of ketamine every hour along with a stead flow of versed to help with side effects. She is becoming a pro at distinguishing reality from her fantasy world of ketamine. She is convinced that the people we know to have brilliant minds are really brilliant but that they were all high on drugs and were able to write down what they experienced during their "trip".

So, that pretty much sums up the 4th day. She is looking forward to finishing up and coming home to her family and friends. She is somewhat scared to return as well as she fears that the pain will return. It has been a crazy week for us to say the least. Allison is scheduled for discharge on this coming Saturday morning.

Thanks and Signing Off with Hope.

Day 4

My night ended last night with Allison at about 9p. She was given some anti-psychotic medication along with a sleep aid to help her get through the night, which worked well enough. The AH and VH were still present but not as commanding and intense. Allison even had enough of her wits to text me at midnight saying that she will love me forever. I told her the feeling is mutual.

So I arrived here this morning at about 1030a after fighting traffic again for the 4th day in a row. How do commuters put up with this everyday? Allison had her epidural taken out this morning and is doing some PT right now. She will try to eat a little bit and then rest for the rest of the day while the ketamine keeps running through her veins.

Her doctor is going to get the ketamine up to as high as Allison can tolerate today during the day. She is getting 55mg now every hour but will get up to 65mg. She's a fighter and keeps saying she wouldn't wish this on anyone. Again, thank you everyone for your messages and kind words. I will keep updating as much as I can.

Wednesday, June 9, 2010

Day 3

Allison has asked that I be as candid as possible, not to freak everyone out or to even get sympathy but more about letting people know what RSD patients go through while on this ketamine infusion.  So here goes....
Last night she did not sleep as she was terrified from the vivid hallucinations both auditory and visual.  Voices telling her to kill herself, etc.  She woke from her sleep throughout the night screaming in fear, not knowing who people are, where she is, etc.  The nurses had to explain to her several times that she needed to saty in bed or else the restraints would be applied.  Needless to say, Allison is exhausted.

This morning I arrived at 10a and as soon as Allison saw mw, she broke down emotionally for the next hour.  Since letting it all out, she has done relatively well despite her exploding nose bleed that she had when she sneezed.  Due to her nasal passages being dried out from the oxygen, the blood cam pouring out of her nose, mouth, and her left eye.  She stopped bleeding in about 10 minutes, avoiding possible surgery to stop the bleeding.  Between these events, Allison has had a little bit to eat and plenty to drink.  All of her vitals, blood work, etc. are perfectand the procedure is going well, despite the overwhelming side effects.

She has had PT twice today and is walking around without any pain in her body.  It is all about the mind games at this point.  There is no mind over matter when on ketamine.  Her doctor is set to lower the does a little tonight along with giving her some other medication to help her sleep a little more peaceful, hopefully.  He was also able to get approval for me to stay later to help Allison through these psychotic moments.

Day 3 has been an adventure.  Stay tuned for Day 4 info. as soon as I am able to get free for a few moments. Thanks again for everyones messages.  I am getting them and letting Allison know.  Keep the faith, prayers, adn positive energy coming our way.  We can both feel it and it is definitely helping.  Love Greg and Allison

Tuesday, June 8, 2010

Day 2

Allison made it through the night with some interuption for a quick "spray" bath and teeth brushing as she was a wake at 1am trying to figure out where she was.  For those wanting to know about a "spray" bath, she was spritzed with a cleaning agent that is used without any water.

So anyway, she was at 40mg an hour by 11am and feeling pretty good.  She has reached the highest dose for now at 50mg every hour.  The nurses have indicated that by this time tomorrow, Allison will be pretty much out of it.  She had her epidural turned off temporarily so she could get out of bed for the first time and walk around, which she did just fine.  It took about 15 minutes to complete the walk but Allison swears it was 2 hours.

The hallucinations come and go as do the emotions for Allison as the nurses have had to take care of her on all aspects of functioning as she is not allowed to get out of bed.  She is having a hard time dealing with some of these aspects.  We will keep it at that.

Allison's brother Tim came into the city yesterday and has given her some moral support as well as a few laughs which have helped.  We managed to sneak out (with Allison's permission of course, some things ketamine does not affect) for some lunch at Murphy's Pub just a block away from the hospital for some authentic buffalo wings.  I couldn't pass them up as NH and New England just doesn't get it right when it comes to wings.

Well, Allison is getting another "bath" now and will be trying to eat something for dinner shortly.  Her doctor saw her this morning and says that everything is going as planned and remains very hopeful for a pain free life.  WE SURE HOPE SO!!!

Thanks for everyone's thoughts and prayers.  We are getting them from Facebook even though we have not had the chance to respond to most comments.  I will update everyone tonight once I make it back to Long Island at about 9p or so. 

Monday, June 7, 2010

Day 1 Complete

Well, it finally came to an end with myself leaving the hospital at 830p and Allison trying to rest as comfortable as possible.  Due to the strict visiting hours, my time was up.  To paint a picture for everyone, Allison sort of reminded me of a cross between Keanu Reeves as he first enters the Matrix with all the cords hooked up to him and the scene in Avatar where the main actor enters into the chamber while being paralyzed from the waist down.  She had wires coming out of her back for the continuous epideral until Thursday and the 3 catherder tubes protruding from her neck all being pumped with medication including the ketamine.  Dinner made Allison's head turn sour as the hospital offered her green beans, squash, and turkey all with gravy covering it all.  Needless to say, she did not eat it and ate a 6 pack of oreos from the vending machine, which they didn't mind as long as she ate something.  Tomorrow can only be better, we hope.  Stay tuned.

Day 1 going slow

Well, lets just say it seems as though no one knows what they are doing here.  It is now 4pm and Allison has yet to get any ketamine flowing.  She is in the process of having a central line put in her neck instead of a normal  IV in her hand or arm due to continuing burning when the IV is dripping.  Her epidural is in a causing discomfort and pain in her hack although her legs are numb (at least that is helping).  SO the longer it takes to get this rolling the longer we will need to be here and the longer Allison has to go without food and water.  It's almost been 24 hours now without.  Her doctor is working on putting in the central line so in the next 5 minutes she should begin to start feeling better.  She is a trooper!!!

Day 1 continued some more

Allison finally went into the procedure room for a lumbar epideral. Once she get this injection she will start feeling pretty good and then the ketamine infusion will begin.  Her doctor has indicated that she will be in treatment until Friday evening or Saturday morning depending on how much ketamine she is able to get into her system.  The plan is still have the levels be as high as she can tolerate.  The more over a shorter period of time, the better the results.

Day 1 continued

Allison just got checked in. Vitals being taken and asked to squeeze out a urine sample. Too bad no one no one told her since she went when we arrived and she hasn't had anything to drink since yesterday at 9p. We need some waterfall sounds and maybe some dripping water sounds to make this happen.

Success, enough pee to pass the test. IV being set up. Allison is being very tolerant and patient even though the nurse is trying her best and failing. Maybe RSD should be taught to the staff taking care of their patients. We just need the ketamine to start flowing to ease the pain.

Day 1

We arrived at the hospital at 10a after fighting traffic for nearly 3 hours. Yes, it took us that long to drive 45 miles. We are still waiting for Allison to get admitted. At least while we are waiting, we get to watch highlights of the Celtics beating the Lakers last night.

Sunday, May 30, 2010

Cochecho Country Club RSD Dance Benefit & Silent Auction

Well....last night was a great success.  Thank you to everyone who attended last evenings event.  The band that performed, "Six Feet Over" was AWESOME!!!!

All in all, there were about 75 people who came out to support Allison and her fight with RSD.  The event raised about $5100 and minus expenses, we made $3582 towards to fund.  Again, we greatly appreciate everyone's support.

Allison and I are off to NYC on June 6 to start her procedure on June 7-11.  I will be updating the blog at least daily.

Tuesday, May 18, 2010

May 29, 2010 RSD Dance and Silent Auction Benefit at the Cochecho Country Club in Dover, NH

Our last scheduled fundraising benefit is two Saturdays from today.  Tickets are on sale and available.  Come join us at the Cochecho CC in Dover.  "Six Feet Over" will be performing live music for the entire event scheduled from 7p-1130p.

For $100, you and a guest are welcome to the event.  Besides the great music performed by Six Feet Over, there will be a Silent Auction for some great gifts, including Laser Hair Removal Treatments, a round of golf for 4 people with cart at Cochecho CC, One Month Family Membership to the Works Fitness Center, One Night Bed & Breakfast at the Governor's Inn, various gift cards from local businesses and restaurants, and other gifts such as an LG Blu-Ray Player that will be raffled off for $10 a ticket, just to name a few.

There will also be appetizers and hor'dourves served along with a cash bar.  Please RSVP as soon as you can as the country club needs a head count.  Call 603-742-7706 to purchase a ticket or email at gregallisonleach@comcast.net

RSD Walk in Hope 5K-Results

Well, what a day and what a great turn out.  This past Saturday, about 65 people from all over the area came to support Allison and her fundraising efforts.  The total amount of money raised for this event was $7000.  We are almost half way to our total.  Thank you so much for everyone who made a pledge and those who attended.  It means a lot to Allison and myself.  Everyone's kind words and support has Allison in good spirits and full of hope.  Thanks to all of the businesses and sponsors who made the day beautiful.  Thanks to Spaulding High School for the use of the track and facilities.

Monday, April 26, 2010

RED SOX TIX FOR AUCTION!

I have 4 Red Sox Tickets for Auction, either in groups of 2 tickets or all 4.  The game is May 10, 2010 at 7PM against the Toronto Blue Jays.  Minimum Bid for each ticket is $25.

Monday, March 29, 2010

Medical Clearance!

After a 5 hour drive into New York City and another 5 hour drive back to New Hampshire, it took Allison and hour to have three evaluations, all of which were successfully passed in order to proceed with the 5 Day Ketamine procedure, EKG, Echocardiogram, and Psychiatric Evaluation.

We did manage to take in a short getaway while in NY to eat lunch at Johnny Rockets, YUM-O!  We also did some candy shopping at Dylan's Candy Store.  Next visit is not until May 22 for final pre-surgery consultation.

Wednesday, March 17, 2010

Pre-Surgery Consulation and Cardiac Clearance

Well, we are off to New York City on Sunday night for two appointments on Monday, March 22, 2010.  Allison will be meeting with the medical team in order to have cardiac clearance for her ketamine procedure.  She will have an EKG and Stress Test along with the required Psychiatric Evaluation in order to move forward with the procedure.  Every patient going through with the 5 Day Ketamine Infusion has to complete these tests before final approval.  Allison has already been through these tests numerous times during her 15 year battle as any procedure she has had, nerve blocks, implants, etc. have required such test so for Allison, this is a formality.

I do remember the first time she was told she needed a psychiatric evaluation about her pain, she took it as, "This doctor thinks I am crazy since there is nothing physiologically wrong with my body."  This is an on-going frustration for Allison and many other people with RSD.  People who see Allison will say, "I don't get it, you look fine so you must feel fine."  That is exactly it, those who say that, don't get it.  Try googling RSD and perhaps you will "get it."

Wednesday, March 10, 2010

Sunday, February 28, 2010

Saturday, February 27, 2010

RSD Walk in Hope 5K Registration Form and Pledge Sheet

Adobe Acrobat.com#o

Click on the link above and once it has opened, click download on the screen and print the pledge sheet and registration form.  Please bring both forms along with the pledges you have raised to the event on May 15, 2010.

Facebook

Facebook

RSD Walk In Hope 5K Run/Walk
Invite a friend or two or more to join us for this fundraising event. Donated Prizes to be Raffled After the Event. Person who raises the most pledges will receive grand prize.

Type: Causes - Fundraiser
Date: Saturday, May 15, 2010
Time: 8:00am - 12:00pm

Location: Spaulding High School Track (Hugo Bolin Field)
Street: 130 Wakefield St.
City/Town: Rochester, NH 

Description 5K Walk Run-A-Thon to be held on May 15, 2010 at 9:00AM. Free Registration at 8:00AM. Pledge sheet will be available per request by notifying me at gjleach2002@gmail.com. I hope to have the form available for download soon at http://allisonsfightwithrsd.blogspot.com. Free RSD bracelet will be handed out to anyone bringing $100 in pledges to the event. Raffle and prizes will be drawn immediately following the event. There will be a special prize awarded to the person raising the most money. For more information, please visit http://allisonsfightwithrsd.blogspot.org or email me at gjleach2002@gmail.com or call at 603-742-7706. This event will be fully insured.

Wednesday, February 24, 2010

4-Hour Outpatient Ketamine Treatments

Hello Followers:

Allison is currently having three 4-hour ketamine treatments this week in Dover, NH at Wentworth Douglas Hospital on February 24-26.  These 4-hour treatments give Allison just enough "relief" to get her through the week.  These treatments will continue even after the 5 day procedure that act as "boosters" to keep her RSD pain level at a minimum to no pain and tolerable level.

Allison has a scheduled appointment on March 22, 2010 in New York City to have an EKG along with some other testing as a requirement prior to the 5 Day Ketamine Treatment. We will keep everyone updated on this trip.

Saturday, February 20, 2010

Contribution Update...

It's only been 5 days into the fundraising efforts and the contributions have started coming in.  We have received $1390!  Thanks to those who have taken the time to spread the word about Allison's upcoming procedure.  If you are a facebook member, you can join the group that has been created on my profile page.  So far 41 people have joined the group and have also forwarded the blog site address and information on to their friends and family.  This is how our goal will be reached.  Again, thank you for all your support!

Wednesday, February 17, 2010

1st Contribution Has Been Received!

Well, it has only been roughly 48 hours and our first contribution has come in.  Thank you, Joyce for your generous donation.

At the end of each week, I will continue to post contribution totals.  Thanks for Everyone's Support!

Tuesday, February 16, 2010

Information on Drexel University College of Medicine

This is who Allison has been seeing in Philadelphia for the past three years.  Dr. Schwartzman introduced Allison to the ketamine infusion therapy along with the referrals to Dr. Richman and the Hospital for Special Surgeries.


http://www.drexelmed.edu/Home/AboutOurFaculty/RobertSchwartzman.aspx

Dr. Daniel I. Richman, MD, Anesthesiologist - HSS.edu

Dr. Daniel I. Richman, MD, Anesthesiologist - HSS.edu

Here is information about the doctor who will be treating Allison for the 5 days of her procedure.

Hospital for Special Surgeries

HSS - About HSS

Here is a link for the hospital that Allison will be getting her treatment procedure.

Date for Procedure Has Been Set.

Allison's procedure date has been set for June 7-11, 2010 in NYC at the Hospital for Special Surgeries.

Monday, February 15, 2010

Fund Raising Efforts

I am attempting to put together a fund raising campaign in order to raise enough money in order for Allison to participate in an innovative medical procedure known as Ketamine Infusion Therapy.  This procedure is not currently FDA approved in the United States.  However, current studies have shown great results in patients undergoing this procedure who suffer from RSD (Reflex Sympathetic Dystrophy).  Allison would be receiving a continuous infusion of ketamine for five consecutive days in New York City at the Hospital for Special Surgeries or in Philadelphia, PA at Drexel University Medical Center.  Both Doctor's in the respective locations are world reknown, Dr. Daniel Richman in NY, and Dr. Robert Schwartzman in Philadelphia.  Allison has been seeing both of these doctor's in a team effort to help manage Allison's pain.  Dr. Schwartzman has been featured in People Magazine, USA Today, Good Morning America, and CNN among many others. 

Allison has reached a point in this progressive disease that the end of the line has been reached regarding treatment.  Diagnosed in 1998, Allison received numerous nerve blocks, epidural blocks, spinal injections, etc. until they no longer were effective in managing the pain.  Next we went on to some Eastern Types of Medicine including acupuncture,yoga, pilates.  This continous series of nerve blocks, medication pumps, acupuncture, and physical therapy continued until a new procedure in 2001 was utilized. A Spinal Cord Stimulator was implanted inside Allison, which utilized electrical impulses in her back that blocked the pain receptors, thus tricking the brain into believeing that the pain was gone. This lasted for several years with good success, receiving new updated and more advanced devices along the way.  However, the pain eventually became more progressive and the brain realized it was being tricked.  Needless to say, the implant was no longer effective and was removed in 2006. 

This brings us to Dr. Schwartzman, who Allison's mother saw highlighted on Good Morning America discussing his ketamine infusion therapy to help with patients diagnosed with RSD.  We called his office to and was scheduled an office visit that would take place approximately two years of placing this phone call.  Yes, Dr. Schwartzman is in high demand and the waitlist to see him is long.  Well, despite the two year wait, Allison's appointment came before we knew it and we found ourselves sitting in his office in Philadelphia to get the word that he could help Allison but that the road to recovery will be long, intense, and even more painful.  He told Allison, "You will have to be a soldier!"  Another year later, Allison was called from the waitlist of hundreds to participate in a 10 day outpatient study of the effects of ketamine to treat RSD.  For 4 hours a day for 10 consecutive days, Allison received ketamine in his office. (I spent my time wandering the streets of Philadelphia taste testing as many cheese steaks and italian hoagies I could find.)

Following this treatment, Allison was pain free for the first time in nearly 10 years.  This procedure allowed her to go back to work after being out on disability for over two years and get off of morphine.  Her infusion treatments continued over the course of the year in which she would have ketamine "boosters" for 2-3 days in a row every 3 months in order to remain stable with her pain. 

Eventually, the pain started coming back and the treatments were not lasting as long as they had in the past, just like the nerve blocks she had more than 10 years ago.  Allison then was referred to the Hospital for Special Surgeries to have a Super MRI done on her leg.  This "super" MRI is able to see actual nerves in the body so the damaged nerves can be seen.  The damaged nerve was located and now new tests and procedures commenced such as direct injections of steroid medication to numb the nerve.  This was successful although time limited.  Both doctor's have consulted and informed Allison that the next best thing to do is to have the 5 consecutive day 24 hours of ketamine infusion in order to "reprogram" her spinal cord and nervous system.  There were talks of nerve cutting, burning, and even freezing.  All of these procedures are risky and the potential hazards to create more severe pain are unknown and in essense not worth the risk.  That is a brief summary believe it or not!

Now to present day...  After being notified that Allison should go through with the 5 day ketamine treatment, her doctor informed her that this procedure would have to take place in an ICU unit of the hospital where she would be monitored every minute for the entire 5 days to make sure that her heart, liver, and kidneys remain functioning as they are supposed to.  The clincher is that this procedure is not covered with private insurance and that the cost of it would be at the expense of the patient, all out of pocket.  The rough estimate from the doctor is that is would cost between $30K-$60K.  Ouch!

This is where we reach out to you, all the family and friends we know, and all the family and friends of friends we don't know. We are looking to put together a fundraising effort prior to June  (I knew blogs and facebook were good for something).  More information about the fundraising efforts will be made shortly.  Please stay tuned as this is put together.

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association

RSDSA :: Reflex Sympathetic Dystrophy Syndrome Association