What does RSD feel like?

I was on the RSDHope.com website and I came across what Keith Orsini said RSD pain feels like to him. You can go to their website and read it there but Im also posting it here.

CRPS - WHAT DOES IT FEEL LIKE?

I was asked recently at my Doctors office by a visiting intern, "What does CRPS feel like?"

This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question now and again and you have to think of your answer by the way the person asked. How interested are they in your answer and how detailed an answer are they looking for?

If they are asking what is CRPS pain is like in comparison to other diseases you can give the McGILL Pain Index answer; "CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGILL Pain Index at a whopping 42!" (look for "causalgia" on the chart).

If they are asking as a friend and you don't want to scare them away, you simply say "It is the most pain I have ever experienced, it hurts constantly." After all, many patients have already lost a great may friends because of the disease and they don't want to lose more.

If they are a loved one you try and protect them. You don't want them to know how bad it is. You don't ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, "I am fine. It is nothing I can't handle." Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. Sometimes you say "I am fine" because you are frankly tired of explaining it or tired of answering the question every single day. Your pain is the same today as it was yesterday, and the day before, and the day before that, and the day after tomorrow. You try not to dwell on it too much so you say "I am fine".

If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more. I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again.

So, having said that, what does CRPS pain actually feel like?

Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better.

CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc.

What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.

The second component to CRPS is what is called Allodynia.

Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia!

Picture getting pretty vivid?

Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about.

Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer.

There are many other symptoms which you can read about in our CRPS SYMPTOMS section but these are the two main ones that most patients talk about the most.

I hope this helps you understand what we deal with every day.

Peace, Keith Orsini

________________________________________________________________

For Dennis, its the same thing. He says, if you take your hand and place it on the table and you hit it with a hammer and wait 1 minute, hit it again, wait 1 minute hit it again, for every minute of every day, that is the hard pains he feels. His foot is on fire all the time. Noises bother him, vibrations riding in the car hurts, kids playing hard on the floor near him hurts him. I have neuropathy in both feet and my feet feel like theyre on fire but only at night when I get into bed, thats when I notice it most. I couldnt imagine what Dennis is going through or those who have RSD, what they go through. A huge thank you to American RSDHope for the work theyve done and are doing to help put out the fire and all the fantastic information they provide!

Home again!

We had a good trip. Dennis enjoyed himself even though it was hard on him. He doesnt get much enjoy out of life anymore.

Today we went up to Mt Pleasant to get a few things we needed at the store. We didnt realize how late it got on us and then I just remembered that Zach and I both have doctor appointments tomorrow, so Im going to cut this short. But tomorrow Im going to be back here getting some more info out. G'night y'all!

Trip day!

So since we have gotten this new nurse case manager she has been a blessing to us. In just 2 days she did all the paperwork and approved the Psychological Evaluation, of which we go up north tomorrow to have done. Its about a 2 hour drive one way, the trip will be hard on him, but this is big step towards having the TENS unit trial done. It will take a couple of days for the intensity of his pain to calm down a little bit after this drive. He cant keep his foot in the down position for long, he always has to keep it elevated or his foot swells and he has a lot of pain. Please wish us luck and pray for his pain to not be so violent and relentless, that we have a good, pain free, safe trip. Ill post tomorrow once home and settled in!

What is RSD - Reflex Sympathetic Dystrophy?

Hi! Today I want to try to get some info out to you all about what RSD/CRPS is, the symptoms, how it affects people with it, what treatments there are and how you can help. I am using information from other sites, along with my personal knowledge of this disease. I will post links at the bottom so you can get information for yourself or pass it along. One thing in life I have learned, its never too late to learn and even if it doesnt concern you, it may concern someone you know. There is no cure for RSD/CRPS.

What is RSD?

RSD is Reflex Sympathetic Dystrophy. It is also known as RSDS - Reflex Sympathetic Dystrophy Syndrome, CRPS - Complex Regional Pain Syndrome, Shoulder Hand Syndrome, Causalgia and Sudeck's Atrophy. 

CRPS (RSD) is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

The National Institute of Neurological Disorders and Stroke (NINDS) says that RSD is "a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems." 

MedicineNet, states that RSD involves "irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin."

Complex regional pain syndrome (CRPS) is a chronic pain condition.The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet.  Often the pain spreads to include the entire arm or leg.  Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling.  Doctors aren’t sure what causes CRPS.  In some cases the sympathetic nervous system plays an important role in sustaining the pain.  Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.

What causes reflex sympathetic dystrophy (RSD)?

The exact mechanism of how RSD develops is poorly understood. The theories include irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin. The involuntary nervous system, peripheral nerves, and brain seem to be involved. A variety of things can trigger RSD such as, an injury or trauma, surgery, diabetes, thyroid disorders, heart disease, degenerative arthritis of the neck, stroke or other brain diseases, nerve irritation by entrapment like carpal tunnel syndrome, shingles, shoulder problems, breast cancer, drugs for tuberculosis and barbiturates, 

What are the symptoms of RSD?

RSD usually affects one of the extremities (arms, legs, hands, or feet). The primary symptom of RSD is intense, continuous pain. According to NINDS, the list of symptoms includes burning pain, increased skin sensitivity, skin temperature changes (warmer or cooler than opposing extremity), skin color changes (blotchy, purple, pale, red), skin texture changes (shiny, thin, sweaty), changes in nail and hair growth patterns, stiffness and swelling in affected joints and decreased ability to move affected extremity.

Pain can spread to a wider area (i.e. from finger to entire arm) and can spread to the opposite extremity (i.e. from left arm to right arm). Emotional stress can cause symptoms to worsen.

Some experts suggest there are three stages of RSD, during which progressive changes occur in the skin, muscles, joints, ligaments, and bones of the affected area. The progression has not been confirmed by clinical studies though.

Stages Of RSD

Stage 1

lasts 1 to 3 months
severe, burning pain
muscle spasm
joint stiffness
rapid hair growth
skin color and temperature changes

Stage 2

lasts from 3 to 6 months
pain which becomes more intense
swelling
decreased hair growth
nails which are cracked, brittle, grooved, spotty
softened bones
stiff joints
weak muscle tone

Stage 3

irreversible changes to skin and bone
pain is continuous
muscle atrophy
severe limited mobility
contractions of muscles and tendons (limbs may be twisted)

How is RSD diagnosed?

A patient's clinical history (signs and symptoms) are the major factor in diagnosing RSD. The diagnosis is made difficult because many of the symptoms overlap with other conditions.
There is no specific blood test or other diagnostic test for RSD. X-rays can show thinning of bones. 

Nuclear bone scans can show characteristic uptake patterns which help diagnose RSD. 

A sympathetic block may be done also helping in diagnosis.

How do you treat RSD?

Because there is no cure for CRPS, treatment is aimed at relieving painful symptoms.  Doctors may prescribe topical analgesics, antidepressants, corticosteroids, and opioids to relieve pain.  However, no single drug or combination of drugs has produced consistent long-lasting improvement in symptoms.  Other treatments may include physical therapy, psychotherapy to relieve stress, anxiety and depression, sympathetic nerve block, spinal cord stimulation, and intrathecal drug pumps to deliver opioids and local anesthetic agents via the spinal cord.

The prognosis (outlook) and response to treatment in patients with RSD is unpredictable.

How can I Help?

You can help in many ways. People who have RSD usually deal with depression and anxiety, they are self conscious and may withdraw from friends and family, Because of the extreme pain they deal with, it is often hard for them to get out of their home. You can send a card, send a letter, stop in to visit with them, give them words of encouragement. Never ever tell someone with RSD that its in their head, to fight through the pain it will go away, dont tell them that it cant be as bad as they are saying, its usually worse. Be kind and patient. Dont expect them to go to you, go to them. They often cant move around much without causing a flare in pain. 20 minutes out of your day to just visit with someone you care about is not that long and can benefit more than you realize!

Im hoping that some of you will have questions, please ask away!
I am also posting a from a section of questions that people had asked at American RSD Hope.



I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. IS THAT PART OF CRPS/RSDS OR IS IT BECAUSE OF THE MEDICATIONS? 

YES YES YES! You aren't going crazy or losing your mind. CRPS/RSDS causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression, insomnia and other issues.

DOES RSD/CRPS SPREAD? 

YES! YES! YES! CRPS/RSDS spreads to some degree in 70% or more of all cases; depending on the type of original injury, the treatments used, existing medical history, subsequent injuries, etc. It seems to follow very specific paths in most patients; hand to arm; foot to leg. But it can also go from one side to the other, left foot to right foot, right hand to left hand, etc. It can also spread up the arm from the hand it what is commonly known as shoulder/hand syndrome. In many cases where a spinal injury is involved it can spread full body but it can happen in other cases as well. CRPS can occur in almost any part of the body and it seems it can spread to almost any part of the body as well, from the many cases that are constantly being presented. 

Just a note - For us at American RSDHope, we don't believe there is a body area we have not been informed of a case of CRPS being affected by or having spread to. In other words, in our two decades of talking to CRPS patients we have encountered CRPS having been in or spread to pretty much every part of a persons body. 

ARE DENTAL PROBLEMS PART OF THIS DISEASE?

The short answer is yes. The long answer is that many CRPS patients report problems such as; dry mouth (sometimes related to Sjogren's disease) which can lead to receding gums, cavities, and other dental issues; extreme sensitivity to cold/hot temperatures in food/drink; difficulties with dental procedures such as having cavities filled or teeth cleaned, etc. Most CRPS patients report having to have teeth pulled rather than have root canals performed due to issues with the nerves in the mouth/jaw.

IS EXCESSIVE SWEATING PART OF THE DISEASE? 

Yes. Actually some patients can have excessive sweating while others have no sweating. Check out the SYMPTOMS section. The same goes for nail and hair growth. There are times when a CRPS patient may experience no nail or brittle nail/hair growth and other times when their hair/nails may just seem to grow like crazy. These periods can last for weeks, months, or even years and vary patient to patient

PEOPLE WHO I USED TO CALL MY FRIENDS, NO LONGER SEEM TO BE THERE FOR ME, NO LONGER CALL, NO LONGER COME BY. WHY IS THAT? 

Many patients report this happens to them. Chronic illness is difficult enough for a patient to deal with, someone who has most of the facts and has a fairly good understanding of what is happening and what the disease or illness is all about. Loved ones and friends don't usually have that luxury and/or don't take the time to learn. Our behavior changes we don't do the things we used to. We tend to be more introspective, we shy away from loud places, many changes take place for us. We are no longer able to work and our lives are so changes that to our family and friends we are a different person on the outside while on the inside we are screaming, "It's still me!" The best ones will take the time to find out what is happening in your life and how they can help you, they will stick around. The others? Well, you can't force someone to do the right thing.

Yes, we have an article that might help you here as well and we are working on Part two right now. The article is called "To The Friends and Families of CRPS/RSD Patients" but it could probably be sent to the loved one of any chronic pain patient. 

WILL I HAVE THIS DISEASE FOR THE REST OF MY LIFE? 

This is a difficult question to answer and it is different for all people. CRPS is a disease where there are no absolutes, there are always exceptions to the rule. Many patients end up dealing with the pain and disability of CRPS for a lifetime, but there are also patients who go into remission; although they appear to be in the minority. Whether it be from being treated early with nerve blocks or some other type of treatment the key is catching and treating the disease as early as possible, typically within the first 6 to 12 months, in order to have the best chance of sending the disease into remission. More and more is being learned every year and there is more Hope as each year goes by.

DOES CRPS GO INTO REMISSION? 

REMISSION AND CRPS

Will your CRPS go into remission? Unfortunately, not very likely but it depends on the age of the patient and the type of injury sustained. The incidence of remission is extremely low. It is highest for teens, especially if they are diagnosed within 1 to 12 months and treated aggressively. For adults, the need for quick diagnosis is even more urgent; within the first 3 to 6 months is imperative and that must be followed with aggresive therapy. The type of therapy depends on the type of CRPS you are diagnosed with. Newer treatments, especially the ketamine infusion in-hospital 5 day Awake technique, are proving successful in more than half of the patients treated and many are experiencing complete pain relief for up to 1, 2 years or more. As the study of CRPS continues and more is learned the hope is that more patients will be able to experience longer periods of pain relief. But again, the relief is temporary and not a cure. 

IS IT CONSIDERED REMISSION IF I AM NOT IN PAIN BUT STILL TAKE PAIN MEDICATION?

This is a question we get asked quite often. Patients get their pain under control with the help of some of the wonderful physicians and therapists out there through the use of medications and physical therapy; usually a combination of aqua therapy and cardio, such as treadmill or stationary bike. The less pain they are in the more they can do physically, the better mood they are in emotionally, the better they sleep, sometimes leading to the need for even less pain medication; it is all a great healing cycle. For some, their pain goes away completely but they still need the medication to keep it away. Does this mean true remission then? The answer could be debated back and forth forever but the bottom line is, does it matter? If you have no pain and have improved your quality of life enjoy it! Take extra precautions, absolutely. Someone who has had CRPS once is more likely to have a recurrence than someone who has never had it, but don't let that thought rule your life.

DOES CRPS BURN ITSELF OUT? 

NO. Absolutely not. The first time I heard this (Keith, from American RSDHope) was when I was finally diagnosed with what was then called RSDS. The Dr diagnosed me out of a book. She said I "had this disease called Reflex Sympathetic Dystrophy Syndrome", that "it would burn itself out in two years at the most", and that until then" I would most likely get worse not better". At the time I was unable to work, barely able to walk and ended up in a wheelchair within a few months. It is now 19+ years later and I am still waiting for it toburn itself out.

We have had quite a number of patients tell us similar stories. Unfortunately it does no such thing and there is no such diagnostic code for this, or have I ever talked to a Doctor who said , "Oh yeah this happens all the time."


Thank you to all the sites I used to put this together! 

About.com

MedicineNet.com

National Institute of Neurological Disorders and Stroke (NINDS)

RSDS.org

New York State Department of Health

RSDHope.org

The day our lives changed - Part 2

In 2008 Dennis had his psychological evaluation. The Dr determined that there were no issues that would prevent him from having the stimulator implant done and he had a good understanding that it may not work and was ok with that. When we got the results we thought he would be having the trial done in the near future, however as you know, it wasnt done. Work comp is so difficult to deal with. It took them 2 years to decide they would not work with Matrix Pain Management on the cost of the surgery and that they were not going to allow him to have it done in a clinical setting. They want it done in a hospital setting, in case something goes wrong, which Ill discuss later on. So we went back to searching for a neurosurgeon who specializes in this type of surgery. We finally found one in Bay City. Dr. Siva Sriharan who works out of Bay City Memorial Hospital. So, his nurse case manager sets up an appointment, with a pain management place in Bay City, she was supposed to set the appointment up with Dr. Sriharan as he wants to continue going to Matrix for his medications because its closer to home and he has trust built up with them. So the trip there was a fail.

So in trying to get the appointment set up for him, they realize that it has taken so long to find the right doctor that his psych evaluation has expired and he has to go through another one. He was also diagnosed by a work comp psychiatrist with severe depression and situation depression and recommended that he have intensive therapy to help him with this. I have spent the last year trying to find a psychologist in this area who was willing to accept his work comp. It has been so incredibly frustrating! No one and I mean NO ONE within a 60 miles radius will accept it. So he still has not been seen for his depression except for partial inpatient therapy, when he told me he was seriously thinking of taking his life. Most people dont know because they dont ask, theyre not curious about what he is dealing with, but yes, he has been suicidal at times during the last year. It was a big enough issue that I ended up giving our guns to his father to hold onto and that I keep his medications locked up in a safe box and I constantly monitor his pain medications. Right now he is doing a little better, but as you know, depression is an up and downhill daily battle. There are several things that complicate this, which Ill discuss in a different post. The pain medications have also changed his hormones, which has added to the depression and moodiness.

Last month, Dennis got a new nurse case manager, for people who have been on work comp for more than 5 years. Her name is Robbin and even she is appalled that he has been waiting this long to get things done. I asked her last week if he could please get the evaluation done with the Dr he did it with before. Normally they dont let you go to a doctor that "they" sent you to. A conflict of interest. But she said that since he has been through so much, yes. This is great news! She also said that we didnt have to have the paperwork done before the appointment, we would do it retro, so that nothing holds him up getting it done. She said she was going to approve everything that came across her desk the moment it hit it. She is even trying to get future doctors enrolled. Robbin has been a blessing to us in such a short time. She really has empathy for Dennis. Something that he really needs right now. Thats yet another post to come.

So this week he will have the eval done YAY!! Then it will be a waiting game for the Dr to get his findings written up and if he still thinks that Dennis can handle the surgery then we can go ahead with getting another referral done to see Dr Sriharan and an appointment to see him. After that I dont know how long it will take to get things done.

This brings us to where we are now. Ill be posting again, talking about the struggles, depression and other things that is going on. Ill also be talking about how the best way to help Dennis is and how you can help him out by learning to deal with someone with his diagnosis. Oh, the next post Ill be discussing what RSD is, how it affects people, how someone gets RSD... Ill most likely post it today, if not, tomorrow.

Be safe, be healthy, be kind!

The day our lives changed

I thought I would start from the beginning and give a chance to catch up to where we are now.

August 22, 2007. We were hauling a load from Hawthorne California to Houston Tx and had stopped to get fuel in Arizona. Plan was he would fuel and hit the sleeper and Id take over. Well he had deisel fuel on the bottom of his shoes and when he went to climb into the truck his foot slipped and went to the ground turning it under itself. He was hurt but we had no idea just how much. I had drove for a couple of hours when he woke up and his ankle was really hurting. I looked at it and it was swollen up like a softball on the side of his ankle. I thought he had broken it so we went to the hospital. No broken bones but had a small tear in the lateral ligament so he pretty much had a severe sprain. Doctor ordered him off for a week and to see his family doctor. So I delivered the load in Houston and we went home. We had been home about a week and his foot still wasnt any better. It hurt, it was swollen and red. I made an appointment with our family doctor and they just figured it would take a little longer to heal. I took off work for another week and when it still wasnt any better we went back to the doctor who recommended that he see a specialist. He couldnt really walk on it, he limped a little, did a lot of hopping on one leg to get around.

I had to go back to work or we wouldnt have jobs, so I went back on the road for a month, all the while he is telling me he is still hurting. So when I came home and saw his ankle and foot I was shocked. It had turned bright red and purple, was swollen and I could see he was really in pain so I took him to the hospital. They didnt know what was going on, but he had an appointment with the specialist that week so they gave him something for pain and we headed home. The next week, we went to the specialist. The experience wasnt good. The doctor didnt see him for more than about 5 minutes, literally, and ordered pain medication and physical therapy for a month. I knew at that point Id have to take a leave of absence because I couldnt run the truck the amount of miles it needed to run. So I stepped out of the truck and stayed home to help him deal with what was going on.

So a mont goes by, he has physical therapy 3 times a week for a month and on the last day he had a bad experience with a very ignorant physical therapist which caused Dennis to have a lot of extra pain, so much pain it made him cry. Dont tell him I told you though, he'll kill me! lol I told him right then I wouldnt make him go there again. I would be cruel if I did. So we go to the specialist again. Mind you this is about 2 months give or take after he was injured. The doctor walks in, says he wants him to have more physical therapy, says to us "Its not CRPS, itll be better in another month". Well that was it. We didnt know what CRPS was at the time, I had barely caught what he said before he walked out of the room. It was obvious that he wasnt interested in figuring out what was wrong with his foot and so I asked work comp to help find a new doctor.

Dr Muldowny, Lafayette La. I have a fondness for him, he was the one who eventually diagnosed Dennis. The previous doctor had done no tests at all. Not even an ex-ray. Dr Muldowny had them done right away. He also had Dennis have a bone scan and an MRI. The bone scan showed a large uptake in calcium in his good leg. He explained that this was normal when people arent able to use both legs, the body automatically starts to move calcium from the inured, unused limb to the good limb, trying to reinforce the bone, making it stronger for the extra use and weight it takes on. The MRI showed intact ligaments and muscle. Meaning that the initial injury had healed. But why then was he still not any better? Dr Muldowny told us he felt it was CRPS or RSD (theyre basically the same but one is more severe due to the time the patient has had it, as I understand), but he wanted to have him do a couple more tests to determin if this is what he had or not.

About 6 months after injury, Dr Muldowny referred us to a Dr he worked with often, a neurosurgeon, Dr Staires, who specializes in pain management. Dr Staires was to perform a "Sympathetic Block" to see if it would help the pain any. The procedure was painful for Dennis, they had problems getting his blood pressure to come back down to a normal range and it caused them to not be able to wake him up fully. I was scared, looking at him laying there, not able to wake up, his blood pressure through the roof. But eventually it came down and he fully woke up. The doctor tested his pain levels, which were almost nothing at all and the temperature in his foot had risen about 15 degrees. RSD makes the affected area lower its temperature. We went home and for almost 3 glorious days Dennis had little to no pain. It was such a relief for him! But eventually the pain came back. We did a follow up with Dr Muldowny who said it looked like Dennis did have RSD but he had to go through the procedure again. a few weeks later he had it done again. This time, they didnt give him as much anesthesia because of the previous blood pressure issue and he woke in the middle of it. This put him in so much pain I could literally him him crying out in the waiting room. When they brought him into recovery, his entire body was shaking, he was moaning, it was hard on him. The pain in his back wore off though and he again, had little pain, with a 30 degree rise in temperature in his foot. It seems impossible for an area to be that cold on the human body without having like, frostbite or something I know, but that is also one of the symptoms of RSD that patients deal with.

Dr Staires and Dr Muldowny both diagnosed Dennis with having RSD. It was time for us to find out what it was since it was something we would be dealing with in the future. I had no idea, none at all, just how much our lives were changing. It was the recommendation of Dr Staires that Dennis should have a spinal cord stimulator implanted. Then he could possibly be free of 50% of his pain. Which isnt 100% but when you live day to day in agony, 50% looks like a gift from God. Here is a video of the procedure being done on someone. Dennis will have nearly the same model in the same spot, but his incisions will be a bit larger and the leads will be in two locations in his spine, not 2 in one area like the video shows so they can stimulate both top and bottom of his foot and ankle. This is when the waiting began.

Hurricane Rita came and just about ruined us. We couldnt get anyone in our family to come help and we couldnt do the work ourselves and so eventually we abandoned our home and moved to Michigan in hopes of having people around to help out. All the while still waiting for work comp to get paperwork pushed through.

Part 2 to follow tomorrow!

Welcome to the new blog! I will be blogging a lot here (hopefully if I can keep up with it lol) and I will be posting video as well. Im hoping that at some point Dennis may want to do a video diary here.
It is very important to me to get information out to those who have friends or family members that are living with this debilitating chronic neurological disease. I also really need a place to just "vent" and so here I am. I welcome any and all questions!