All posts by stanner511

Personal Story

A life turned upside down

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Besides a couple bad falls off of horses and a sprained knee in soccer, I was always a very healthy kid. I’d get the normal colds that all others kids got but nothing overly serious. I was very active between horses and sports. My Mom joked that I was always on the go. I actually never even slept a full night until I was 3 years old. God bless my parents for not giving me away.

Fast forward several years to 2006 when I was 23 and working as an emergency dispatcher for Shelburne Police. I had never had a uti in my life so was shocked when I had one. I figured a dose of antibiotics would help. Sadly 3 months later after numerous courses of various antibiotics I still had constant pain, burning, and urgency. I was scheduled for a cystoscopy and the Dr told my Mom that I had the worst case of Interstitial Cystitis she’d ever seen. Basically my body attacks the cells that makes the lining to my bladder meaning I don’t have a lining and my bladder bleeds when it gets too full. It’s considered an autoimmune disorder. After the initial shock, I went to physical therapy, tried different procedures, changed my diet (many foods flare this), and started on the only FDA approved drug at the time for IC. It took a good year to start to feel OK again.

My life continued as a dispatcher working long hours and lots of overtime. In 2009, I also became certified as a part-time police officer and began working part-time in 2010 at another Police department on top of my full-time job. I worked nonstop and enjoyed my horse and visited my family back home in NY in my little bit of spare time.

In 2011, I had a minor ankle surgery to remove some scar tissue and stopped working at the other pd part-time. I then sadly had a fall down my stairs which resulted in another surgery in my knee to remove some neuromas in 2012. All went smoothly after that surgery as well.

In February of 2013, I left Shelburne Pd full-time and started working as a Mental Health Interventionist. It was my dream job. I loved everything about it. It did require extensive walking though. My legs became pretty sore but I figured it was just from walking upwards of 14 miles a day. I gave myself time to adjust but when they still were super painful, I went to see my orthopedic Dr. He wasn’t in so I saw another Dr who said it was my plantar fasciatis (I had it for years). She recommended pt. I went to pt and luckily ended up at a good one. After a few sessions, I was told that he thought I had a rare condition called Exertional Compartment Syndrome (basically, your legs swell which cause the pressures in the compartments of your legs to become super high). He said my ortho probably won’t believe it at first so to be adamant for testing.

Of course, my ortho said that it was rare and highly unlikely I had it and sent me for nerve testing. At that test came back negative my Dr said :” I think you have a rare condition called Compartment Syndrome.”. Excuse me, but no shit sherlock! He then sent me for more testing.

For those that haven’t heard of the testing, it’s not anything fun. They have a very large needle with a gauge on it. They numb your legs in four different places and then put the large needle in to get the pressures of each compartment in you legs (there are 4 in each leg). They then have you get on a treadmill until the pain is really bad. For me that was only about 2 minutes. They then do the same testing again. Your pressures aren’t supposed to over the number of 5. Mine were over 90. The Dr said I shouldn’t have been able to walk ten feet, let alone 14 miles.

My ortho then recommended me to a sports medicine Dr because it was out of his area of expertise. I was scheduled for a bilateral fasciotomy of all 4 compartments of my legs by the new Dr. Basically they make 2 incisions in each leg and they release the fascia which is what surrounds each compartment. This in turn is supposed to give more room in my legs and relieve the pain.

My surgery was at the end of August. It’s a very painful surgery and I was supposed to be back to work in 3 months. The surgery was extremely painful and healing was slow. I ended up getting an infection and “spitting” the dissolvable sutures out. I also got a uti at the same time and had to go on my usual antibiotic. For the first time ever, I had a very severe reaction to that medication and had to be transported by ambulance to the hospital.

Time went by pretty fast and I still wasn’t getting better. Three months came and went and my short-term disability went to become long-term. I’ve always been a workaholic so not working was very odd for me. My boss was amazing and held my job for me.

My surgeon then sent me to a foot and ankle Dr for more issues with my plantar fasciatis. This led to several casts and non-weight bearing for months and finally surgery on my foot in August of 2014. At this time, the Dr’s made it clear that I would not be working anytime soon. I was diagnosed as having chronic fatigue and chronic pain as well. The surgery on my foot was unsuccessful and I found another Dr. He also immobilized my leg in a walking cast for up to 4 months. Still no relief. Which led to finding yet another specialist. He stated that my foot had been injected so any times that the steroid ate away all my fatty pad to the bottom of my foot.

This reminds me that I did forget to mention that for years, I’ve had intra-discal injections in my thoracic part of my spine. I’ve had Thoracic disc degenerative disease and
Thoracic spondylosis w/out myelopathy for years but kept working throughout those treatments.

Back to the rest of my story. I then went to another pt who specialized in foot problems. She was absolutely wonderful. Her and the owner of the practice actually listened to my symptoms. They tried literally everything they had to try with no luck.

I then went to see a vascular Dr who promised to figure out what was wrong and ordered a bunch of tests. After waiting and calling several times for my results (also I was given the wrong results at one point), the Dr called me and simply said, there is nothing wrong with you, go back to your primary care. So much for promising to figure things out!

This led me to seek out another vascular surgeon at another hospital. The second he examined me, he said you still have compartment syndrome. My mind was blown. My other Dr said once I had the surgery, it was fixed. The new Dr then informed me that 11% of patients have it so severe that the fasciotomy doesn’t fix the problem. He said I was one of the unlucky 11%. He also advised me that I was born with abnormally large calve muscles which takes up a lot of room in my legs.

I had the pressure tests done again but just at resting this time and it was confirmed that I still had compartment syndrome.

During this same time, I also saw my pain-management Dr who recommended me to another who he looked up to. My first appointment with her confirmed that I had CRPS type 2 (Complex Regional Pain Syndrome) caused by damage to my nerve in my leg during my first fasciotomy. The key to this very rare disease is early diagnosis (6 months or under). I had gone undiagnosed for almost 2 years! It was now July of 2015.

CRPS is the most painful condition known to man. It is known as the suicide disease because of the high rate of suicide due to the pain. It is rate the highest on the McGill Pain Chart, even rating higher then over 24 hours of natural child birth and amputation of a digit with out anesthesia. Basically, your brain is sending constant signals to the area and it feels literally like that area is on fire. This is no exaggeration. There are also no fda approved treatments for this terrible disease.

In August of 2015, I underwent a bilateral fasciectomy of all 4 compartments. With this surgery, they actually removed 3x3inch pieces of fascia from each compartment. This was by far the most painful surgery ever. To go along with that pain, any injury or even something as simple as a blood draw makes CRPS flare and spread. I was in the hospital for 5 days. I won’t go into detail how terrible one resident was to me but there were several complaints made by not only me.

This surgery was quite rare. The last day that I was there, during rounds, about 8 Dr’s came in. Most were interns since it’s a teaching hospital. They all wanted to unwrap my legs to see this rare surgery. My Mom joked that it was like a an episode of greys anatomy where everyone wants to see the odd case.

I returned after 10 days to have my staples removed. When, I stood up out of the wheelchair to leave, I felt something warm on my leg. I looked down and my one incision had burst open. This led to my Mom running, while pushing me in the wheelchair back into the Dr’s. My Dr said that the pressure was still so high in my legs that it caused the incision to give out. This led to months of packing and cleaning the wound.

During this time, I continued to see my pain management and try several different treatments for my crps. This included topical ketamine cream, oral methadone, medical Marijuana, oral ketamine, low-dose naltrexone, and etc. Crps is resistant to narcotics so not even dilaudid helps the pain.

I then ended up with a bad infection in my other leg that landed me in the ER for 2 days of Iv antibiotics (thank God for my Mom who has cared for me through literally everything). The infection still wasn’t clearing up after 2 doses of antibiotics so it was confirmed to be MRSA. Finally after one more dose, we had the infection under control.

In November, I ended up in my local ER for severe pain. They said there is nothing they can do for CRPS (most Dr’s have never even heard of it) and gave me dilaudid and told me to see my pain management.

I called my vascular Dr and explained to him a feeling of my legs being eaten from the inside out. He said it was probably my CRPS but it didn’t feel like it to me.

Later in the week, I saw my pain management for a follow up and she saw how red my infected leg was and referred me back to the ER. There, they did an ultrasound and said I still had cellulitis but it wasn’t infected. I reiterated with them the pain and they ordered studies of my legs for the next day.

I came back the following day for my ultrasound which confirmed my legs were filled with dvts (blood clots). The tech then sent me directly to the ER and I left that night having to now give myself injections of blood thinners in my stomach 2x a day.

Next came trying to get my INR where it needed to be. That included blood draws 3x a wk. Don’t forget how much these aggravate crps. I saw a hematologist who said that unless I wanted to test that there wasn’t much point because once you have dvts, you are prone to them so you would do the same treatment and preventative care down the line. It would have been important if I had planned on having kids since it could be passed to them but I’ve never wanted kids.

I ended up being on the injection for 6 wks which was followed by 3 months of Coumadin. My blood clots are lodged with me permanently at this point. I’ve had numerous trips to the ER to be checked for new ones since it’s very hard to differentiate between my crps, compartment syndrome, or blood clot pain. I also had to come off of estrogen which was one of the things that helped my interstitial cystitis. My IC is badly flared by having my cycle so the estrogen stopped my cycle.

This of course ended up causing more issues which led me to find a new gynecologist and urogynocologist for my IC. It’s very difficult to find decent Dr’s that understand all of my rare conditions. My previous one was actually very mad and down right mean about me refusing an iud because of my crps. I also saw a cancer gyno who specialized in difficult surgeries and we found that I was too high risk for a hysterectomy. After many months of trying all sorts of things, I finally had the nexplanon implanted in my arm. I have had some burning there from the crps but it seems to help (fingers crossed).

March of 2016 came and I was finally approved for my SSDI (social security disability). That was a huge stress relief! Around that time, I also went to see a rheumatologist. This is when I was Diagnosed with fibromyalgia and had my hip injected for bursitis. The Dr explained that my body is constantly fighting so hard that eventually it causes other conditions. Sadly, there are no meds that I can take for it because I’ve had so many reactions to them.

In the meantime, I followed up again with my vascular surgeon and was informed that short of removing my skin (obviously can’t do that), there was nothing else to do for the compartment syndrome. It’s better then it was but there is no further cure or treatment for it.

After that, my CRPS spread to my other leg, my back, and my face. It will eventually be throughout my entire body, including my organs. With it comes crazy sensitivity to things as simple as noises, vibrations, the bed sheets, or a breeze. My legs will also sometimes just give out without reason. I’ve had this happen when clipping my horses leg (he actually braced and caught me so I didn’t hit the ground). If I were going by pain, I’d be in a wheelchair now but I’m afraid if I got in one that I’d never get out of it. Another joy of crps is excessive sweating. Not sure how I got so lucky! Even just walking to my car can cause me to be drenched. It’s my bodies way of saying I need to stop and elevate my legs. This is a constant battle for me.

I just last week traveled from VT to Philadelphia to seek advice of another Dr who specializes in neurology, internal medicine, and pain management. The flight there was absolute hell. Not being able to elevate my legs is so painful. I ended up having to stay longer then planned for a skin biopsy. The Dr was the best I’ve ever seen and I ended up being diagnosed with small fiber neuropathy as well (up to 16 conditions for me). I have several other clearances and etc to get done but I do hope to be able to go inpatient to the hospital in Philadelphia for lidocaine infusions to see if that helps. I just have to figure out a good way to travel. I took the train home and it took 10 hours. The pain from the length of time and vibration was very intense. These are all things we take for granted and don’t think about until it happens to us.

I’m sorry this is so long but it’s my story. I went from being hard working and active to not being able to walk an 1/8 of a mile. Each day, I wonder if I’m going to be able to get out of bed. My horse is my therapy. I’m so grateful for the owners of the barn where I keep him and my parents (I’d never be able to keep him otherwise). I have a chair that the owners brought to the barn for me so I can elevate my legs as often as needed. Everyday, after a couple hours, I have to go home to elevate my legs and take a 2-4 hour nap. I used to cry myself to sleep at night because I missed working so much. The judgement from others is very hard to get over(especially if they can’t see on the outside what is wrong). I’d say I’ve lost friends but they weren’t really friends to begin with. My true friends and family are so beyond supportive. I hate never knowing if I’ll have to cancel last minute or have to leave early from a planned event. These are all things that I for sure took for granted before.

The way I looked at the world and my life has completely changed. If you asked me how I felt 18 months ago, I would have still been grieving. Now, I’m grateful for what my rare diseases have taught me. They are with me for life and incurable. This has taught me to choose what is really important in life. I thank God everyday for the support of my family and loved ones. Instead of asking why did I get these illnesses, I ask how I got so lucky to have the parents I have.

My advice is to never judge a book my it’s cover and to live life to its fullest. A rare disease can happen to anyone at anytime.

Stephanie Tanner (A rare disease warrior)

Personal Story

My Story Matters

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In February of 2013, I began a new career as an interventionist and street outreach employee. I had previously been an emergency dispatcher for 8 years and a part-time police officer for 2 years. This new opportunity was quite a pay cut for me but my dream position. I would be outside all day, responding to calls dispatched by the largest police department in the state, and helping people experiencing mental health crisis’s. I felt like I was born to do this work.

About a month into my new position, I began to experience pain up the side of my legs and in my calf muscles. At first I thought it was just getting back in shape. With the career change, I would walk up to 14 miles a day. I just ignored the pain in the beginning. I have a high pain tolerance due to having several other painful conditions. The main one being interstitial cystitis. Basically my bladder doesn’t have a lining.

The pain continued and became way worse. My symptoms expanded as well. For example, I was experiencing numbness in my feet and my calfs literally felt like they were going to explode. I finally couldn’t take it anymore so made an appointment with my orthopedic surgeon who had previously performed both a knee and ankle surgery on me. Unfortunately it was a 2 month wait to see him so I saw a PA at his office.

At my first appointment, I explained the pain and numbness and that I have had plantar fasciitis for 12 years but this pain was different. The Dr was very short with me and said I needed the layering method and needed to attack the fasciitis from all angles. I explained I’ve done that for years and this was different. She blew me off sending me to PT and home with gel heel cups. At one point she stated that my calf muscles were really tight and I may need to see a massage therapist to work on them. When I asked if insurance covered that she stated: “honey sometimes in life you need to pay for things!”. Easy for someone making a PA’s salary to say.

Needless to say, I felt defeated. Little did I know, this was the beginning of a very long and windy road.

I started going to Pt immediately. Within a couple visits, the therapist told me that he thought I had something called compartment syndrome. He told me it was rare and the drs may not believe me at first but he was positive I had it. I was finally able to get into my original surgeon within a month. He stated the condition was rare and he highly doubted I had it. He sent me instead for an EMG (nerve testing). The EMG came back negative and of course it was several more weeks to wait to go over those results with my surgeon. When he came into my room, he said I think you have a very rare condition called compartment syndrome (have to love how no one listens to patients it seems) and I needed to see a Dr who performed pressure tests to confirm it.

Of course it was several more weeks before I met with that dr. If you aren’t familiar with the compartment pressure tests, be glad. They basically take this huge needle with a gauge on the end of it and insert it in each of your four compartments on each leg after numbing you. This gives your resting pressures. They then had me get on the treadmill and tell them when the pain was worst. It only took two minutes for the pain to show its ugly head. They asked if I was sure…trust me I was sure.

Another note to add is that while you are on the treadmill, blood is running down your legs. I don’t recommend wearing a new pair of socks when having this test. They then retake the pressures. Normal pressures are around 5. My resting ones were in the 30’s and after 2 minutes, in the 90’s. The Dr told me I shouldn’t be able to walk 10 feet let alone miles everyday.

I was then referred to the orthopedic surgeon who told me all the details of having my fascia released. He told myself and my Mom once the compartments are released then there will never be any problems again. He also said I’d be out of work a max of 3 months. At the time 3 months seemed like forever. I’d never taken more then 10 days off since being an adult. My boss was amazing about everything. He even wrote me an email saying how valued I was as an employee and that it seemed as if I had done the job all my life.

Fast forward to August and it was finally my surgery date. My date had been pushed up two times due to my pain level. The surgery took a couple hours but the dr told my Mom and I that everything went smoothly. It was shockingly an outpatient surgery so we headed home to my parents in NY which is 2.5 hrs away.

I honestly don’t remember a ton about the ride home. When I arrived home, we were able to get me in the house. My Mom had my Dad stay at our other house (my parents live in a house on the property that she manages so we still have our house I grew up in) with our 2 dogs. Luckily I was still pretty doped up at that time and slept pretty well through the night. The next following days were regular post op days.

My Mom was a gift from God (she always is anyways) when it came to caring for me. Lots and lots of icing and always elevated. I was unable to get out of the chair by myself so she would have to help me and then I’d shuffle along with a walker. The first week or so, my right foot was at a 90 degree angle outward and I was unable to straighten it. The pain was well pain.

I was taking oxy for the pain so that helped. The high pain tolerance helped even more. I later found out that this is considered a very painful surgery for most people. About 4 days after my surgery, I noticed I had a UTI. I am prone to them because of my bladder condition so have a standing rx for them. My Mom drove the 30 minutes to the pharmacy for me (like I said, she is a saint). I was able to take the rx around 1pm that day. Around 5pm, I began not feeling great. I had a bout of diarrhea and then a terrible tightness in my chest. I went to lay down and it got progressively worse. I began shaking so bad that I could barely speak. I was freezing cold and felt like my chest was going to explode. I remember thinking this is what it feels like to die. My pulse was 104 and my blood pressure was around 200/100 and something.

Long story short, the ambulance brought me the hour ride to the hospital with my parents. We later found out that I had developed an allergy to the rx I had always used for my UTIs. Add that to my list of issues.

The next couple weeks were filled with me developing a reaction to the dissolvable sutures so my body “spit” the stitches. It was quite painful and very nasty looking.

I ended up staying with my parents a week longer than anticipated. The next month or so was filled with lots of pt. It seemed like the pain was gone but it was hard to tell from the post op pain. The spitting of the sutures delayed pt at one point as well. Before I knew it, the 3 months had come and gone.

I went from short-term disability to long-term. I went from making over $45 grand the year before to around $17 grand a year. It makes you realize just how fast you can lose everything. If it were not for my parents, I would have for sure been homeless. I also have a horse (Ernie) which is my child…my life. I still am able to have him thanks to my parents and amazing friends (who I also consider family) who took Ernie in at their farm.

Overall the severe pain seemed better as did the numbness. Unfortunately, my left foot went into a major flare. My ortho sent me to their podiatrist. This of course took forever to get in and lots of pointless appointments. They put me in a walking boot for several wks. This was followed by 2 removable hard casts and being completely non-weight bearing for around 4 months. When it hit about 8 months of being out of work, it finally set in that I was not returning to work. It was very difficult and sad for me to accept.

My boss was again amazing. They had held my job for me the longest they had ever for an employee that had only been there for 6 months. By August, I underwent a partial fascia release of my plantar fascia of my left foot. Several more months of a boot, forearms crutches, and a knee walker followed. Still, zero relief. I began going to a new PT who was highly recommended by Mary and Jerry who own the barn where Ernie is.

We made a small amount of progress and I went back to my original ortho from before my surgery. He put me in a walking cast for 8 wks and gave me hope again. That was short-lived when after the cast was removed he told me he had nothing else for me. I saw another specialist who was brilliant. He said the surgery should not have been performed on my foot with my track record. He also said that they had injected my heel so many times that there was no fatty pad left there. He agreed I needed to see a vascular specialist and continue with pt.

December of 2014 I headed back to pt. The ladies there were amazing. They agreed that many blew me off because of my weight which angered them. I had gained 75 lbs since the leg surgery. Ive always battled with my weight but working out has helped me keep it down. I hadn’t been able to be physically active in well over a year. They even took pictures of my legs and sent them to some of the best vascular pt specialists in the nation. They agreed my legs were not from being overweight. There was some sort of mechanical flaw in my body but not sure what.

I finally was sent for an ultrasound, doppler testing, and etc at the vascular department to check for intermittent claudication (where your blood flow gets cut off). I won’t even get into how terrible the tech was. He said there was nothing wrong and the dr probably wouldn’t even be willing to see me.

After filing a complaint and my pt reaching out to the vascular surgeon, she agreed to meet with me. My appointment with her gave me hope again. She told me she would figure it out no matter what. She scheduled an MRI/MRA with plantar flexion and said after that we would do an catheter angiogram to check for PAES. Popliteal-artery-entrapment-syndrome-paes is where your nerve becomes entrapped in the back of your leg. It is very rare. I had to search myself to even come up with that possible diagnosis.

About a week later, I had the testing done. I was in excruciating pain during the 3 hrs of testing. I was told , I’d hear back in less then 4 days. 5 days later, I called and a nurse told me the results were negative. She then called back the next day and said she was wrong and they were still reviewing the results. Another week went by and I finally heard back from the dr. She stated you do not have a vascular issue. Go back to your primary care. I asked about angiogram and she said there is nothing vascular wrong with me. Talk about blowing me off and ripping my hopes apart. I then decided to call another hospital.

In the beginning of May 2015, I met with the new vascular surgeon. Upon exam, he stated that he believed I still had chronic compartment syndrome. I was astonished at this. He said 11% of people can still have it after surgery and need to have the fascia completely removed. Due to my extremely high pressures the first time, he believed this was definitely a possibility. If this is the case, the surgery is much worse the second time around and then there is a 30% chance it doesn’t work. He also said there could be more than one problem. I can not explain the relief that this surgeon believed me.

2 years of an indescribable pain that has taken over my life. I have an appointment this Monday, June 15th to have my pressures taken again. I’m praying for answers. I also have an appointment on the 30th to have my upper back injected (I also have thoracic disc degenerative disease and thoracic spondylosis without myelopathy) by my pain management dr. He is also going to check to see if I have CRPS as well.

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.

CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. It is an extremely painful condition which is considered number 1 of the top 10 most painful conditions. I have nerve damage from the leg surgery and my right leg will literally feel like someone is stabbing it with a hot poker.

I’m afraid to say I’m hopeful again because I’ve lost hope so many times. I keep my life and pain well hidden from most who aren’t around me from day to day. I’m still battling for my SSDI but am making progress. On a daily basis, I can’t fall asleep until around 3am. My sleep is not good sleep. My leg pain is often so bad that I’ll have disturbing dreams where something has happened to my legs such as they catch on fire and etc.

I go see Ernie around noon and can not stand or walk longer then 10 minutes without having to sit. Sitting is also painful so there is little relief. Around 4pm everyday, the pain is so bad that I have to take a 3-4 hr nap with my legs elevated. I then head back to the barn to see Ernie again. He’s my mental therapy. He’s so used to my disability that when my leg gave out last week, he actually moved not to step on me and braced to catch me with his shoulder.

At 32 years old, it has been very difficult to adjust. I look normal on the outside and don’t have a diagnosis such as cancer that catches people’s attention. The stress of no income is unbelievable on top of the physical pain. I dread going to bed every night because my stairs are so painful to climb. You begin to feel like people forget you and have no clue what you are going through because you “look normal”. I feel people looking at me when I pull into the handicapped space. They don’t need to say anything. Their expressions say it all.

My life is forever changed. I often feel that it’s such a waste of a life. I’m so incredibly blessed with my family and loved ones who remind me daily that just because I’m disabled doesn’t make me worth any less. I can not put into words the love I have for them and how I will be forever grateful.

My parents have taken care of me after every surgery. I feel like my Mom and best friends get the most of the burden when I tell them my pain level from day to day because there are so many I don’t share it with.

I’m writing this to make others aware of my story. I want to remind everyone to always be kind to each other. You have no clue what struggles others are facing. Your kind hello that takes 1 second to say could be what makes someone like myself feel like you care. I will never give up even though there are many days I need to remind myself not to.