October 6, 2017- Stacey continues to to be able to use her walker on occasion to get around the house. She was even able to get into their swimming pool for the first time in 7 years. We continue to travel to Rhode Island monthly to visit Dr. Chopra in an attempt to manage the pain associated with the RSD/CPRS. Unfortunately she continues to suffer with with many other disorders due to the impact that RSD/CRPS has on her body. Her current symptoms include frequent choking, visual problems with left eye, optic nerve damage/blindness in her right eye, daily IV fluids to keep her hydrated, and various stomach issues. Many of the treatments needed to give her relief from these disorders are not covered by insurance, just like the treatments needed for RSD/CRPS. We thank everyone for their continued support and recognize without your help Stacey would not be able to receive the care she needs and deserves!

 

December 21, 2016- Since January, Stacey has had some positives and some setbacks. She has been able to walk short distances in her home with a walker and is undergoing PT. We had a special pair of shoes made just for her since she has been unable to wear shoes of any kind for the past seven years. Being able to wear these shoes and walk short distances at home has been a HUGE plus for her. The surgery was a success and has allowed her to reach these goals. Since receiving her ketamine infusions with Dr Chopra in RI her pain level most times is manageable. She must have these infusions every month for 2-3 days to achieve any pain relief at all. Dr Chopra also has her on some expensive compound medications and vitamin supplements, which he has found to be helpful to his patients who suffer with RSD/CRPS. Stacey has been diagnosed with Postural Orthostatic Tachycardia Syndrome(POTS), which is a form of Dysautonomia. Symptoms include increased heart rate, extremely high or low blood pressure, lightheadedness or loss of consciousness upon standing, fatigue, shaking, fatigue, chills, extreme headaches, & pain. To treat this disease she gets an IV of sodium chloride at home over 2-3 hrs via her chest port, in addition to other medications to help keep the symptoms of POTS controlled as much as possible. This disease has affected her ability to walk due to concerns of passing out. This has been a HUGE disappointment to her. She has been having very painful spasms in her back, as well as her feet and hands. RSD/CRPS can and does wreak havoc with the patients body, includiong causing secondary illnesses.
 

January 31, 2016- Stacey had her external fixator removed surgically on Jan 6th.She now has a full leg/foot brace to wear all day and a removable cast for nightime. She can start back very,very slowly with PT a few days a week. Dr Lamm and Dr Chopra are concerned about the strength her ankle will have and her bones being very soft from being bedridden for 6 years. She will go through lots of testing for that, because she could have stress fractures very easily. Her RSD pain is very high since the fixator has been removed,her and her foot is very swollen and purple in color. Stacey is now requiring extra days of infusions with Dr Chopra to try and get her back to the level of comfort she was at before surgery. Surgery and RSD do not mix well at all. It is imperative to get the RSD pain down as she is truly suffering. Travel is excruciatly painful for her as well. All we want is for her and she wants as well is a quality of life and to keep her pain down as much as possible for her to be comfortable

November 15, 2015- Stacey had an operation on her foot in September to straighten it in hopes she may be able to walk with the assistance of a walker. You may visit the photos section to see some pictures after surgery as well as a picture of Stacey and Dr. Lamm, the wonderful Doctor that has given her hope of walking again. She still struggles with managing her pain, but with continued treatment from Dr. Chopra and Dr. Lamm we pray she will get relief and walk.

March 22, 2015Stacey continues to see Dr. Chopra in Rhode Island on a monthly basis. We are so happy she has been able to receive Dr Chopra’s protocal as he is the BEST in this field and Stacey adores him. He has given her HOPE once again. She was seen by an Orthopedic Surgeon in RI as well and she maybe able to have her achilles tendon in her left leg lengthened with hopes for her to be able to walk with assistance. Although surgery is not recommended on a patient with RSD due to many complications Stacey is willing to take this chance. She is now going through a group os testing to see if she will be able to tolerate surgery. After seeing two Neuro Ophthalmologists we now know the blindness is permanent in her right eye. She also now needs testing on her heart as she had an abnormal EKG while at the Cardioligist. All these test results will be reviewed and her team of doctors will decide if she will be safe enough to have surgery. Good news is Dr. Chopra has been able to manage her pain, which is a huge relief for
her.

September 5, 2014- Stacey is currently being treated by Dr. Chopra a RSD/CRPS expert in Rhode Island. He has diagnosed Stacey with many other medical issues that can occur with RSD/CRPS. Dr Chopra treats the whole patient not just CRPS! She is now getting her treatments there once a month for 2 days as he is trying to keep her pain under control. Due to her many other issues he is sending us to many specialists that he trusts so she will get the best care available. This requires much travelling for Stacey and is very expensive as most of this will not be covered by insurance. We must do this for her in order to save her life and give her the best quality of life possible. She has gone blind in her right eye and is seeing a Neuro Ophthamologist in Boston at the end of September. As far as her blindness Dr. Chopra is very concerned as he has never seen a patient go blind with CRPS and wants desperately to find the cause and to protect her left eye if possible. She has an appointment with a Orthopedic Surgeon in Wisconsin on October 14th as well. Dr. Chopra feels this doctor is the best option to help Stacey to possibly walk with surgey to her achilles tendon which has shortened by almost 4 inches now. Dr. Chopra feels even if she could walk with a walker for short amounts of time it is so much better for her than being in the wheelchair all the time. She will be seeing a specialist in DC for another medical issue in which Dr. Chopra has discovered, that appt has not been made yet. We thanks everyone for their kindness and support over the years. Your generousity has made many of the treatments possible. Thank you!

June 17, 2014- Stacey once again did not recieve her treatment due to lack of communication between doctors and hospital. She can no longer trust these doctors and they should be asshamed of themselves! She has not had any treatments since October 2013 and her health has deteriorated so badly that she is having some organs are shutting down, loss of vision in her right eye, lost the use of her left hand, and suffers daily 24 hrs with debilitating headaches, so badly she does not sleep. We have been able to get an appointment with Dr. Chopra in Rhode Island. This trip to Dr. Chopra will be very expensive as will all her medical treatments, tests, and all the specialists she will be seeing in the coming months, traveling between Rhode Island, Boston, and Maryland. Please pass Stacey's story on to all your friends and family. Any donations to Stacey's fund would be very much appreciated.

May 30, 2014- Stacey will be admitted to the hospital on June 9th for three weeks. The first two weeks will be for plasmapheresis. Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. Prior attempts to perform this procedure have been unsuccessful for multiple reasons. She has detoriated badly over the past few months and her doctor hopes by having plasmaphersis done it may help her. She will need to have a new port put in because the port she already has will not allow the plasma to run because the catheter is too small. Stacey has no viens so none can be used the way you or I could. The new port will be placed in the right side of her chest as her other port is on the left. The last week of her stay will be in the ICU for the ketamine infusion.

September 26, 2013- There are millions who suffer 24/7 with CRPS. Studies done over the past 10 years show how much ketamine helps with chronic nerve pain. We want the FDA to change Ketamine to a schedule 3 drug and approve it's use for the treatment of CRPS.

That's why I signed a petition to FDA, The United States House of Representatives, and The United States Senate.


Will you sign this petition? Click here:


http://petitions.moveon.org/sign/fda-approval-for-ketamine?source=s.icn.em.mt&r_by=8855536

Thanks!

September 16, 2013- Stacey has been battling this HORRIBLE disease for over 4 years now. The treatments offer minimal relief for her and her eye sight and organs continue to get worse. She is in desperate need of the ketamine coma, but it is very hard to get scheduled and VERY costly. We are having a Comedy Night Fundraiser for her in November. Please check out the "Comedy Night 2013" tab for more information.
 
 
June 17, 2013- Stacey is now seeing Dr Enrique Aradillas in Philadelphia who has been trained by Dr Robert Schwartzman. She will be admitted to Hahnamen Hospital for 7 days of an epidural of the medication Bupivacaine which will numb the lower half of her body. Dr. Aradillas believes that by lowering her pain level first then transferring her to the ICU for ketamine treatment for 6 days will help the ketamine to work better. There are a lot of risks with the epidural being in for that many days, but at this point Stacey needs some type of pain relief.
Dr. Aradillas has also been doing a treatment which he is studing for RSD/CRPS which is called Plasmapheresis, in which the patients whole blood is withdrawn from the body,the liquid portion or plasma is removed through filtering the blood and then replaced with the patients clean blood as well as all it's red and white blood cells then transfused back into the patients body. Usually done 3-4 times a week. Stacey maybe a canidate for this treatment as well. Dr. Aradillas does other treatments along with ketamine for patients like Stacey with advanced stages of RSD/CRPS. 
Stacey is a very strong woman to endure all that this disease has done and continues to do to her body, organs, memory, & quality of life. RSD/CRPs has now entered her ears and eyes, she is very sensitive to sound and light. This disease has taken so much from her and we must continue to fight for her as well as all others,to spread awareness to get our laws changed regarding the use of ketamine as well as fight these insurance companies who refuse to pay for treatments for patients suffering with RSD/CRPS.
We are always exploring ways to raise money for her. If anyone has any ideas, please email hopeforstacey@yahoo.com.
 
 
March 3, 2013- Stacey's pain level has continued to increase and her health has deteriorated over the past several months. This week she will have her esophogus stretched in an attempt to reduce the choking problems she has been dealing with for months.
 
We are no longer able to afford the ketamine boosters and treatments that give her some relief from the constant pain, burning, and suffering she experiences on a daily basis.

August 2, 2012- Stacey was unable to get her ketamine boosters because the Doctor saw an issue with her heart during pre-testing. She has seen a Cardiologist who discovered her heart is skipping every other beat. They are in the process of determining what is causing this to happen, which means Stacey has to go through more painful testing. She will be unable to receive her ketamine boosters until they figure out what is going on with her heart. The longer she goes without her ketamine boosters the more pain and suffering she will endure.
Her choking continues to become more frequent as well. We are currently exploring treatment options to get her some relief from this.

July 18, 2012- The week of June 18, 2012, Stacey received a high dose of ketamine from Dr. Dennis Patinat the University of Miami, Sylvester Cancer Center in Florida. Since the ketamine coma is on hold right now, Stacey needed a higher dose of ketamine as the dosages she was receiving were not enough to bring her any kind of pain relief. Stacey did very well with the higher dose as her pain level has decreased more than ever while being treated. She will need to continue to receive frequent higher dose ketamine boosters that are NOT covered by insurance.
Unfortunately her organs are still failing her and she needs to see many specialists to see what can be done to help her in that area.
It has also been suggested that Stacey have a pain pump implanted using this newer drug that has been studied for RSD/CRPS, this medication of course most likely will NOT be covered by insurance either.The doctor would also like to use a medication through the pump for her severe Dystoina in her lower body, hands, and back. Dystonia is caused by the RSD/CRPS and it causes a great deal of pain, as the muscles tighten and cause them to spasm and deform. If you would like to read on Dystonia a great website is
www.dystonia-foundation.org.
Stacey is also suffering from drop foot which is now in both of her feet, this also has been caused by the RSD/CRPS as this HORRIBLE diease can effect the entire body in so many terrible ways. 
She continues to have difficulty swallowing & causing her to frequently choke. Her eye sight is now being affected and most times she requires sunglasses, even inside as the light causes her pain. Her ears are very sensitive to sound and certain sounds causes her great pain.
We would like to thank Dr. Patin and his team for making Stacey's treatment so comfortable and a BIG THANK-YOU to Dr. Huda who was by Stacey's side every minute of her treatment.
Thank-you to all of Stacey's wonderful family, friends, and all her supporters as she could not continue to afford these treatments without your continued generosity. There is NO CURE for RSD/CRPS, but alot of research is going on right now and we can only hope that in the future there will be a CURE!

May 31, 2012- Stacey's Florida appointment has been pushed back to June 15, 2012. They have also purchased a handicap accessible van which we hope will make her trip a little more comfortable.

May 8, 2012- Stacey will be leaving for Florida to receive a higher dose of Ketamine on May 21, 2012. We have been unable to find a way to fly her down there since she is unable to walk, so they will be driving down in a handicap van that Stacey & her family are trying to purchase.

April 19, 2012- Stacey's condition has deteriorated alot since our last update. She has lost the use of her other leg now,the one she could use to pivot with. We have also been told her bowels, bladder, stomach, & her lungs are being affected by this horrible diease. She is having trouble breathing & swallowing, occasionally choking in her sleep. She will now have an oxygen tank and suction machine brought to her home. She will have a nurse come check on her as well. We have found out from Dr Schwartzman that the ketamine coma is no longer avalible at this time. We are on a quest to find a doctor who will give her a larger dose of ketamine, which is what she needs. We need to find a way to make her travel to her treatments more comfortable for her.

August 28, 2011- Stacey had another 5 Day ICU Ketamine infusion on July 5-9 2011 at Hahnemann Hospital in Philadelphia, Pa. While in the ICU, she became unresponsive for a few seconds because her oxygen levels dropped. The Doctors put her on a BiPap for the remainder of her time in the ICU to help her breathe better. On a positive note her pain level was down to a 3 after the treatment, unfortunately she fell 2 weeks after her treatment and now her pain level is off the charts. She has had 4 Ketamine boosters since her ICU treatment, which were done every 2 weeks for 2 days a visit and more boosters are scheduled for September. She has not had much pain relief from the boosters and is suffering from severe headaches and neck pain. Dr.Schwartzman has suggested Botox injections to her forehead and neck, which he has found to be very helpful with this type of RSD/CRPS pain.
Her red blood cell count is very low and she is suffering from Sleep Apnea. She is having to go through a bunch of tests to determine why her red blood cell count is so low and a sleep study must be done for the Sleep Apnea.
One of the medications she is taking causes her to retain water and therefor she has gained weight which has caused her wheelchair to become very uncomfortable. We are in the process of getting her fitted for a new one so that she can be as comfortable as possible.
All of the Doctor appointments and tests are wearing her down. Dr.Schwartzman says Stacey is critical right now and truly needs the Ketamine coma. She would have to travel to Florida to have all the pre-testing done and then go to Mexico for the Ketamine coma.
Stacey's Mom continues to battle with the insurance company for every test and treatment Stacey needs. The Ketamine coma will NOT be covered by the insurance company, so we will be trying to raise money every chance we get. Please keep an eye on the website for updates

May 25, 2011- 5 day ICU Ketamine Infuion Summary- Stacey was doing well until the 3rd day when she kept blowing her IV's and had to be stuck many times,which seemed to bring on a CRPS flare up. She started having more and more pain come back right up until the day of discharge. She had 2 day Ketamine boosters on April 6th & 7th at which time Dr. Schwartzman decided the ketamine wasn't really helping her and wanted to switch Lidocaine infusions. She was admitted to Hahneman Hospital in Philly on May 9th for the Lidocaine infusions. We also found out that Stacey's CRPS has spread to her bladder, stomach, bowel, lungs, esophagus, & brachial plexus. Small nerve clusters in her neck are now affected as well. She has a Port-a-Cath placed in her chest which will give access to taking blood and any other procdures which requires an IV, like the Lidocaine infusion. She has no viens left to access, which is why the port was installed. While in the hospital she had an MRI which showed some of her vertebraes have also been affected. She had a nerve block injection done in the left side of her neck to help reduce the pain on the left side of her face and one in her forehead because of continued migraine headaches. She did get some pain relief in the upper part of her body, but not much in her lower part from the Lidocaine infusion. The Lidocaine infusion relief can last anywhere from 3 weeks to 3 months. She will need to have another block done on her right side of her neck in a few weeks to ease right side face pain. Dr.Schwartzman is very concerned,as the Dystonia has gotten worse & the CRPS continues to spread throughout her body. He will be doing a trial of a Baclofen Pump which is implanted into the spinal cord and should help with her dystonia in her feet. The trial will be done in a month for 3 days and then if he sees results she will have it implanted permanently. She will need future Ketamine and/or Lidocaine infusions as well. We must remember there is no cure for CRPS as of yet, so the only treatments being done mostly is for pain relief and hopefully with the Ketamine treatments may put patients in remission for how ever long.On top of the constant pain Stacey is dealing with, there is constant battle with her insurance company to the necessary treatments paid for. We will continue to raise money for Stacey's treatments and hopefully one day she will be able to have the Ketamine Coma, which is costs about $150,000 & she will have to go to Mexico for this treatment.

March 10, 2011- After 3 days of the 5 day ICU Ketamine infusions Stacey's pain has decreased from 10+ down to 6 on the pain scale of 1-10. Dr. Schwartzman is very encouraged by her progress. We are hoping & praying this gives her enough relief to begin her recovery process.

February 28, 2011- Upon completion of the 10 day Ketamine infusions, Stacey has noticed some improvement with her skin tone. Her peeling skin & a lesion on her foot has completely disappeared. She also lost some weight due to water loss. Unfortunately she has not had any reduction in pain, but thanks to some amazing efforts from her Mom she is scheduled for the 5 day ICU Ketamine infusion on March 7, 2011. Hopefully this treatment will get her some relief from her constant pain.

January 31, 2011- Stacey had her first Ketamine infusion today & all went well. It's too soon to recognize any results, but she had no negative reactions to the treatment today.

January 24, 2011- Stacey is scheduled to begin a 10 day outpatient Ketamine infusion on January 31, 2011. She was unable to receive the 5 day ICU Ketamine infusion because her insurance company deemed the treatment experimental & it would have cost $50,000+ to pay out of pocket, which is much higher than we originally thought.

We are in the process of contacting her local Congressmen, Tim Holden, to see if he can get the insurance company to assist with further treatment if needed.

October 1-3, 2010- The Home Makeover will be taking place. The electrical work is complete, which has been a huge help to Stacey already.

September 27, 2010- The pain stimulator has been removed because it had not given her any relief. She is at home dealing with some pain & recovering.
 

August 11, 2010- Stacey saw Dr. Schwartzman today and his diagnosis was worse than we expected. His evaluation shows that Stacey has full body CRPS, meaning this HORRIBLE disease has spread throughout her entire body.

Dr. Schwartzman has recommended 2 treatment options for Stacey. The 1st treatment will be done at Hahnemann University Hospital & is a 5 day 24/7 ketamine injection. Stacey will be in the ICU because the ketamine treatment can cause temporary memory loss & hallucinations. This procedure is NOT covered by insurance & will cost $50,000+. If Stacey does not get enough relief from this treatment he would like to send her to Mexico & put her in a coma for 5-7 days & inject an extremely high dose of ketamine in her. This procedure would cost in excess of $100,000+. This treatment is not legal in the United States and that is why she would need to have it done in Mexico.

The good news is Dr. Schwartzman feels that he can give Stacey her quality of life back, but it will be a long & expensive process.

If you can help in any way please make a donation or purchase some wristbands.

Our family appreciates your kindness & support.