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Aware-RSD

Shari's Bio

Shari Utter (Manager of Aware-RSD):
Hello my name is Shari also known as Lil Angel. I was born in N.Y. I currently reside in N.Y. I am a happy wife to Rich of 8 years & a mother of 2 children, Ashley age 15 years & Matthew age 10 years, whom are a huge part of my life. My husband & I own our own Auto Repair business in Napanoch, N.Y. I own the main website & our msn group (Aware-RSD). I have owned & managed MSN groups for about 6 & a half years now. I really enjoy helping others who deal with chronic pain and also specifically RSD/CRPS. My hobbies are Driving my 2003 Ford Mustang Convertible and doing signatures on animations and most currently playing Slingo, I'm addicted LOL. Anyways my life is mainly dedicated to RSD awareness and that is how Aware-RSD began and now here is my story....
 

(Back Surgery - RSD - A Morphine Pump Implant & More)

I have RSD and wanted to share my story with whoever will take a few moments to listen about what I have went through with this disease. It all started when I had an auto accident
back in May of 1999,I was on my way to pick up my son from pre-school. I took a back road , where I used to live as the traffic was heavy on the main streets. I pulled up behind a dual wheel pickup truck which was at a stop sign on this back road. We were both sitting waiting for traffic . At least I thought he was. Instead of him driving away forward he drove
backwards into me. Then that's when the impact happened. My Car was totaled. I wasn't injured, atleast I thought at the time. The police were called, the tow truck came took my car to where my husband worked (Auto Repair Facility). Once I started to calm down I started to feel shooting pains to my left leg.  This is at the point where I realized that I was
walking abnormally. Then the pain just took off, starting to rise more and more as the minutes passed.I was taken to the ER locally. I was looked at 2 hours later. On Examination the ER doctor said that he couldn't find anything seriously wrong & said that I must have sprained my back. They never order a Cat Scan nor X-rays. Just sent me home packing with Tylenol #3 and said to see the local Ortho Surgeon in a week. The next day I was getting to where I could barely walk. A week went by and I saw the orthopedic specialist. He checked me out and just stated blandly that he believed I sprained my back. Even though when the doctor touched me gently on low back, I would scream & jump in pain.He stated he would do a follow-up a week later. This even though I could barely walk! At that point I was given a muscle-relaxer and was told to just rest for a week and I
would be fine.

I did exactly that with no reasonable good results, in fact I was now getting worse. I just remember that I was getting these sharp shooting pains down my left leg at the time.  I went back in to the doctor and now he tells me he is going to schedule an MRI and x-rays. He also gave me a stronger muscle-relaxer and finally some pain medications. I went back three days later to get the test results and he stated that I had spondylolisthesis and spondylitis, spina bifida occulta, and also spinal stenosis. He also explained that the MRI had shown a disc at L-4 & L-5 that was bulging. He just said that he believed I had all of the degenerative disc disease indications way before the accident but the accident may have made me much worse which simply brought out the pain that I hadn't been feeling before this.

Then and there he also started me on physical therapy and gave me a prescription for stronger pain medications. I went to physical therapy as prescribed. I remember one session during a massage I went into a spasm of some kind. I went to the ER from there and they gave me an injection. I went home & rested.The next day I remember asking the Ortho doctor if he could give me assistive device for helping me to walk. He had no problem with doing this as he started to see my inability to walk normally. I still continued PT for a year and even with this, nothing seemed to help. Again I just seemed to be getting progressively worse. It was then that he referred me to a neurosurgeon. Off to the neurosurgeon I went. He read the MRI and told me I had significant disc bulging at L-4 & L-5 and believed that if I didn't have surgery at that point I could wake up some day paralyzed. Of course I told him right away that I didn't want to have surgery. I stated to him at the time that I would really like to use that option as only a last and final resort. Now I'm sent off to a pain specialist he gave me higher doses of pain medications (Lortab & Methadone)also a nerve medications (neurontin). He recommended for me to start injections.So after many types of injections, Facet & epidural. Just as you'd suspect they didn't work either except for putting me in more pain and now leaving me bedridden. In between the pain specialist I still was seeing the Neuro surgeon. The Neuro surgeon fitted me for a back brace. I wore this brace for one day as I began to have difficulties wearing this because it would put pressure on my low back. At this point there was nothing more could be done but this back surgery.

The back surgery was performed on me in 2000. I had titanium cages inserted in the L-4 & L-5 disc spaces, and I had the laminectomies and facetectomies and also foraminaties. The incision was approx. 7 inches long & very painful. My surgery was invasive and took a lot of surgical time. I was in surgery for over six hours. I was then taken to a room for recovery and then it was on to my "stay room". I was given that morphine drip machine. 

The nursing staff there was just awful. During surgery I refused to have a bag inserted so I had to use a bed pan to relieve myself. I couldn't walk due to the surgery. The Nurses would have to help assist me in relieving myself when needed. I remember there were 4 occasions that I called in a nurse to help me & no nurse would show, even after several calls to them, so I had to urinate myself.  I was never so humiliated in my life!  During one of the times I had to urinate myself because of lack of care and two nurses came in to change my bedding and they were pissed, as if it was my fault!  Anyways when they went to change them the sheets one of the nurses says to me, "Cross your arms and don't move." They went to pick me up with the sheet in their hands and lifted me clear up off of the bed. The pressure was so intense I had jumped and as I jumped they dropped me on my back. Boy did I scream bloody murder then. Then they had the nerve to yell at me, saying to me, "You shouldn't have moved." Me; I called the doctor once I calmed back down and told him of the situation. I give him credit though, he came in an hour later and got the nurse supervisor to explain themselves. The nurse supervisor seemed very upset at what they did to me and she said she would talk to the nurses regarding what they had done. She also said she would have them apologize to me. To this day I've noted that  I never got those apologies.

Back to my recovery on my surgery I was hurting so bad the first two days it felt like someone was sticking knives in my back over and over. Thank goodness for that morphine drip, it was the only thing that helped me get by the pain. I had these booties that would blow up to help keep circulation to my legs since I couldn't walk. By the third day I was getting better though, and they started me on physical therapy in-house. They started me walking with a walker. I had to learn how to walk pretty much all over again. They taught me how to use this walker, which I was so upset with having to use as I figured in my head, I'm only twenty-seven years old and to see me using this was humiliating but I knew I had no choice. I was sent home immediately after learning how to use it because I hated the way the nurses were treating me. The neurosurgeon also thought I was recovering well, all except for some numbness in my left and severe lazy foot. So I went home and my first night was horrific. Of course I couldn't sleep as I couldn't deal with the intense pain. I no longer had the morphine drip, which made a huge difference during my recovery. The Neuro sent me home with a prescription for a walker and Lortab and Neurontin. But these medications didn't even touch the pain. So I called my doctor in the middle of the night and I screamed and I cried, and he said that maybe I left too soon. He told me to try to get some sleep, or as much as I could and just to call him in the morning. He also wanted to know one way or another the next day if I was getting any better or worse,

Me, I couldn't even think of going back with those nurses so I decided to grin and bear it and take more of the Lortabs. I finally got some sleep but it was hard. I woke the next day and started to feel better little by little. My mother had spent all days with me. She helped me with my showers, dressing me and taking care of my children and my home. My husband would do the same in the evening after work eachday. Every day started to get better and with each progressive day I could walk better on my own without the walker. I was walking but back to theassistance of a cane now and I didn't need someone with me 24/7. Even though my mother & my husband were a great help to me during my recovery, it was still very humiliating to me. I felt like I was a 2 year old all over again. 

 After about one month had gone by I was doing great,except for that lazy foot that is, until one day I was just starting to fall asleep on the couch and the phone rang. It startled me so much that I jumped and I was shaky like I always am if I just fall asleep and I get wakened after just a few minutes. Well, I went to answer the phone and my lazy foot left from nerve damage from surgery went real "lazy" and I fell flat on my face! I heard a snap and a crack
and I screamed as all I could think of about was my back surgery.
It turned out that I crawled to the phone and called 911 and they in turn, contacted my mother who lives a short block away from me. They also called my husband at work and had an ambulance sent out
immediately. I was taken to the emergency room at the same hospital I had had the surgery. They then contacted the neurosurgeon. The neurosurgeon told them to have x-rays taken and to immediately start me on a high-dose of morphine. I was drugged pretty good because I sure don't remember much to this day, except for the fact that I was back at home hours later. The emergency room doctor said to contact the neurosurgeon the next day and indeed I did. Well the neurosurgeon stated I had re-irritated a nerve and that's why I was walking like I was when the accident happened. He then sent me to have a foot brace fitted.

All that I knew was I was back in excruciating pain again. He then sent me for a EMG and that test came back as nerve damage to the nerve to my left leg. After all this I just refused to have another new back surgery. After all that I went through I felt I had better chances with no surgery done then to just have another. This was when I was referred to another pain specialist. Remember the first one I had been to had said he couldn't do anymore for me, so my options had pretty much run out. I even tried to contact the neurosurgeon who did my surgery. He just said I can't help you anymore than I have and it was all said in a quite nasty way.

I then saw a new pain specialist and he evaluated me . He believed that everything I was going through & was all in my head. He only lasted 3 visits with me. I didn;t like his attitude. He even tried taking all my medications away from me. He even in front of my mother & I did reflexes to my legs. My leg did not move by the knee & the ankle on the left side.My leg was purplish & was burning like on fire. He then looks at my mother & I and said everything is fine, I don't see anything as far as nerve damage. It was appalling, what he said & did to me.

 I remembered that my mother in law spoke highly of her pain specialist. I called his office & they were excited to see me. Was I ever so happy. The doctor there evaluated me & right away Clinically diagnosed me with RSD. He wanted to confirm this with a diagnostic sympathetic nerve block. Sure enough It was confirmed, I was diagnosed with RSD.  They again also did some more sympathetic nerve blocks. These were a success for a while but then they suddenly stopped working for me. This again didn't help me any. I just was left in awful daily pain, in fact I was almost entirely bedridden by now. RSD was taking over my life. I was dealing with a purplish blue leg. Burning, shooting sensations. I started to see my muscles were weakening. My walking ability just grew worse.

It was about at this time that the pain specialist decided to implant a morphine pump. Into the hospital again I went, although now a different one. They did a trial, they inserted a temporary catheter into my facet joint. It ended up that I  stayed in the hospital this time for four days. They gave me medications now through a catheter and it worked.  I went home and a week later I was scheduled for the actual implant of the morphine pump. It was done in December of 2001. I received a five-inch scar across my stomach and a hockey puck sized machine placed under layers of my skin and a lead which went through the side of my stomach which was through what amounted to an inch scar. The catheter feeds to the disc space in and near the spinal canal. This now left me with a ten-inch scar. Three more inches then where the seven-inch scar from my back surgery now is. I didn't do well in the beginning. I had an infection with the cut on my stomach and it oozed daily. They put me on antibiotics .Two weeks later though, it started to heal nicely. Things went well from that point on as I was now getting morphine and clonodine for the RSD in the pump.

Four months down the road and my RSD went into remission. I still stayed with just the morphine from there on out. Then I started to notice that the morphine wasn't working for me anymore. The doctor would increase the dose a little at a time and he did this for about a year. I kept getting immune to the morphine. Of course I'm still living with RSD. It has now spread to my hips, my low back, neck and now my arms and hands. I still have the morphine pump in my stomach and we are still decreasing the medications. Now the one side of the pump starts protruding further out of my skin and it hurts like crazy. The doctor explains that when the pump was placed the assistant couldn't find enough fat in my stomach to place it properly so he did the best he could. Seems it went in crooked and so this is the result of that. At that time of surgery I was lucky if I was 5 "2 & 120 pounds.

Now though I have to deal more with RSD. RSD is something I wouldn't wish on my worst enemy. It is just like being in hell, literally. Your afraid to wear clothing where you have the symptoms, because it burns. Your afraid to walk or move most days. Your afraid to go outside when its windy as the wind blows it puts me in so much pain I crumble. Your afraid to touch anything because you drop it or the pains shoot up your arms into your neck. I now can't wear a seatbelt across my stomach and I can't wear any clothes that are too snug because RSD is giving more and more of these burning sensations. And me, I'm still in as much chronic pain as I was from the beginning.

I even have pains shooting to my head on my right side. You don't want anyone to see your extremities because they are bluish purple and they stare at you like you're a freak. The RSD causes me to drop things all the time now, and I cannot write nor type long. RSD has caused me to have memory loss, sharp shooting pains on the side of my head.

There are many days I just would rather close my eyes and not wake up. Yes its true. My life has been ruined. The chronic pain is and always will be a burden in my life. Misery doesn't even come close to how I feel presently. If I had one wish it would be to go back in time and wish I had my old life back before this accident. It's that simple.

I have learned to accept that someday & maybe soon I will be in a wheelchair, I may even lose a limb or both. I have accepted that this RSD disease will destroy my immune system. It may take my organs and destroy them. Maybe worse.

The only way that I have been dealing with what's wrong with me is I thank God every day for being here and alive, although many days I don't feel that way. I also thank God for my parents who have taken care of me & my children & my husband through this whole ordeal, my motherespecially has taken care of me "Just like I was a small child all over again". My father also has helped me by taking time off of work to get me to specialists & surgeries. They are my lifeline along with a very loving supportive husband who will stop at nothing but to make me feel better, who has also helped me with alot of my day to day living since my accident. He also has been very supportive with everything I have had to endure. My  10 year old son still to this day loves to make me smile when I am feeling my worst. He just loves his mom even though I can't do all I would like for him, but he has learned to accept it, the way mom is,"I think". My husband & my family is something special to me, they are my world, without them I don't think I would have made it past the 1st day.The bottom line is, "Don't take for granted what you have as you can easily lose it in one day."

Updates: December 2004 I had my pump revision, The doctors moved the catheters from intrathecal space to epidural space and wow what an amazing change. My pain has went from a 10 to a 2 instantly of course I had surgical pain and a long recover time but it was well worth it. I currently still have RSD symptoms like cold, mottled skin but the pain is barely there. I just recently started to feel more pain in which I will have the pump turned up and should be back down to a 5 or less. I'm completely off all other pain meds, oral and the patch. Which is awesome. Most annoying thing is I still have drop foot and more noticeable now then ever.

March 2005.. remember as I said I was doing great.. well I woke up one day and I was in complete pain again.. pain levels were past a 10 I laid in ball on my bed crying hysterically... went to my pain specialist and told him of my situation and he wanted me to go for a CT Scan with contrast for a possible Granuloma at the catheter tip site from the morphine pump, so I did not knowing I was allergic to the contrast after having broke out in hives and extreme heat and redness I was rushed to the ER and then later released home.. my CT Scan results were inconclusive results... my pain doctor said he wasn't sure and neither was the radiologist because all he saw was a blur from the hardware in my spine so he planned to speak to the radiologist in person and see the films for himself to see if they could locate anything... Next appt he tells me that they will not be able to tell about the Granuloma until they open me up again and see inside for themselves and he believes at this point that the Granuloma is pushing on my nerve root and causing this extreme pain and we must have another surgery to see if in fact it is there and if so it needs to be removed... Later finding out that this Granuloma is a complication at the catheter tip from the medicinal pump so I decided since I have only basically had about 4 months of no pain out of 4 years, my odds with this pump have not been great... I decided to have the pump removed permanently... I then started to have complications to the Fentanyl Patch, causing rashes, blistering at the site. So I ask if I could go off the patch and try an alternate pain medication that would be equal to it and so pain doctor put me on Methadone, figuring I have already tried it I would have no problems Hahaha yeah right... its now been 4 weeks on Methadone and I feel like crap, I cannot function at all, been in bed non stop crying all the time in either pain or high as a kite which I hate that feeling.. pain doctors associate had called me back and said he was going to prescribe me Trazadone for that effect of euphoria... I took that and all that did was make me sleep 23 out of the 24 hour day... Called pain doctor and told him I cannot take this anymore... I need to function~!! He decided to allow me to go back on the Fentanyl Patch since I had a box left over and wow I won't do that again! Yikes!! Ok so now I am looking forward to having my medicinal pump removed about beginning of July 2005 so my husband and I can try to enjoy our 7th yr anniversary before I have months of recovery to look forward too.. Currently that is where I am at...Anyways that's all for now..more later

Finally, I wanted to
thank you for reading my story

My Lawyer Steve "Best Lawyer in NY"
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