I hope you not only read Nicole’s Journey but are able to help her by donating. Here is her story in her words…
……Not only did my life take a drastic turn about 3-4 yrs ago but so did my family’s. I was diagnosed with a very rare condition called Tarlov Cyst Disease. Tarlov cyst disease effects 5-9% of the general population (less then 200,000 Americans) and is more prevalent in women then men. Tarlov cyst are a nerve root cyst and as the cyst grow they compress the nerves inside the cyst as well as the nerves around the cyst.
Symptoms of the Tarlov cyst:
– pain in the lower back, buttocks, legs, and feet
– weakness/cramping in legs and feet or arms and hands
– parasthesias in legs and feet or arms and hands
– pain in sitting or standing for any amount of time
– pain when sneezing and coughing
– inability to empty bladder (extreme cases inability to urinate at all)
– swelling in the sacral area
– pain and pressure over the sacrum and coccyx (tailbone) extending across the hips and into the thighs.
– vaginal, rectal, pelvic, and abdominal pain
– headaches/migraines due to the changes in spinal fluid along with blurred vision
– dizziness and a loss of balance
Being outdoors was the one thing my family all enjoyed, hiking, adventure walks (my daughter it was endometriosis and there wasn’t much they could do about it. It seemed like with each passing year came a new symptom. Doctor after doctor just passed me off as nothing was wrong or it was all in my head, I was even told by one doctor I was a hypochondriac. I was given so many different medications to try but they just seem to make things worse or have horrible side effects. I was told I needed to loose weight and everything would stop so I lost almost 150lbs but was still not symptom free. It was the summer of 2011 that I lost all bladder function and I had to start self-cathing. I was devastated, who at 28 yrs old looses the ability to go to the bathroom?!?!? I was subjected to test after test, multiple MRI’s and CT scans and still everything came back negative nobody knew what happened. So this too was another symptom that I just learned to live with. The symptoms got a lot worse early June 2013, I woke up and my left leg was numb (the feeling you get when your foot falls asleep times 100). Because of yrs of being like this my left leg weakness has caused my foot to begin to drag and I have lost all reflexes. Not only has this debilitating disease ruined my quality of life but it has taken so much from my family. We no longer are able to hike or take our adventure walks because the weakness in my leg has caused my foot to drag. Bike riding is completely out of the question because siting for any amount of time is very painful and causes a lot sciatica problems. I would love to be able to get back to our old life. All these tests have not only taken the small amount savings we had but have racked up a stack of medical bills. Currently my husbands income is our only income. We have located 1 of 5 specialists who is able to elevate the pressure on the nerves with amazing results. Dr. Feigenbaum is located in Dallas, TX. He is covered on my insurance plan and I do not require a referral to see him. I have finally gotten an appointment scheduled for October 15th with Dr. Feigenbaum. Then I will need to get my surgery scheduled and the funds raised for surgery. After surgery is done I will be required to stay in Dallas for 2-3 weeks post op before being released to come home.
These are the different stages of a tarlov. The circles are a sliced view of a nerve and the cyst is the growth growing off of the nerve
The white mass at the bottom of the spine is a large tarlov unfortunately I do not have the measurements
……………………………..This is a letter that I had written to my family and my close friends in regards to what I live with every day. I have lost almost all of my friends and alot of family since being diagnosed. It has definitely been trying.
I am writing you this letter in hopes of improving your understanding of
those who live with symptomatic Tarlov cysts and the chronic pain, the nerve
damage, and life altering changes the disease causes. Having the multiple cysts on my spinal nerve roots that has resulted in sever nerve damage causes chronic pain and many other issues in my life (a lot of them invisible). Most people do not understand a lot about the relentless, intractable pain and its effects. Most people are misinformed and uneducated on this rare condition that effects less then 200,000 of the worlds population. In the spirit of informing those who are the most important to me and the ones that I hold closest to my heart these are
the things that I would like you to understand about me and my medical
diagnosis, Tarlov cysts disease.
Please understand that living with this medical condition doesn’t mean that I am not still trying to live a “normal” life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don’t seem like much fun to be with, but I’m still me…….. just sometimes stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I try to focus on what I CAN do, and not what I can’t!
I worry about how the changes in me are affecting my kids, my friends and my family. I care very much about each and every one of you, and I’d still love to talk to you, hear about your life, about the family, and how everything is going. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship. Please understand the difference between “happy” and “healthy”. When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I’ve been living with this diagnosis and its symptoms for years; I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in pain, or not extremely fatigued, or that I’m “getting better”. Please don’t say, “Oh, you’re sounding good!” or “But, you look so good”, as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery. Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn’t necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn’t mean that I can do the same today. With this medical condition, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style. It has been quite frustrating and is quite a learning experience. I am still learning more about my condition and still learning more ways to learn live and cope with it on a daily basis.
Please understand that chronic pain is variable. It’s quite possible that one day I am able to take a walk, go out to lunch with you, go shopping, or to church, although when I get home or the next day I’ll have trouble walking to the next room. Please don’t be confused by saying or thinking, “But, you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do. Please understand that “getting out and doing things” does not always or necessarily make me feel better, and can often make my symptoms worse. I cherish the times I can be more sociable and active. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don’t you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I
pay for it dearly .You can’t always read the pain on my face or in my body
language. The pain is not caused by depression. The sadness and sometimes
irritability that you might hear in my voice (even though I try hard to hide
- it) is from the pain and adjustments I have had to make in my life to go on,
and it is due to the changes such as the loss of my job, my inability to
jump in the car whenever I want to run errands, see a movie, visit friends, shop, clean my house, work out, go for a walk or hike etc. as I did previously. Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can’t be put off or forgotten just because I’m somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor’s office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone. You may have wondered why I don’t just take something stronger for the pain. I have tried many different medications, and unfortunately a lot of side effects. I also had surgery which did not result in significant improvement for me, although it has for many patients. I have developed many more cysts since my surgery in cervical, thoracic, lumbar and sacral spine areas. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there are only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are indicating a higher percentage of improvement and many patients are much improved. If I seem irritable or distant occasionally, it ¡s probably because I am experiencing an increase in my symptoms. It’s not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, and cleaning. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of “understanding” from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking things is to have my kids help me every time I end up on the floor after falling. In recent months my left leg weakness has caused my foot to drag and when I am tired it gets really bad and I have a tendency to fall. I am starting to lose some of the sensation in my fingers in my left hand but on the bright side at least I am right handed. These may seem like little things, but it is sometimes those little things that make you aware of the changes this disease has caused. Thank you for trying to understand what I do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this disease has blessed me in many ways. I have met many new people, learned a lot about myself and find myself surrounded by God’s blessings in my life each and every day.