Friday, April 30, 2010

Checking in....

Well not much has been going on as far as my CES....the Dr changed my pain pills and it does seem to help a bit I take Tramadol with the Hydrocodone....and it does seem to help me. He told me the neurontin may not have had time to kick in yet but at least for the time being I am maintaining.

I had to go grocery shopping this cupboards were son and my 2 grandsons went with me and I actually walked behind the cart this time...I have not went to bed yet tonight so we will see. Seems that when I am up alot I suffer at night time. I hope not...the leg pain at night is absolutely the worse to me and I still do not understand it. I mean it just does not make sense to me. I would think the legs/nerves would hurt more when you were walking....but laying down flat is horrible....simply horrible. husband and I had sex for the 2ND time since I had surgery. I am proud to report everything worked....I guess....there was no orgasm but there was no pain either. Before the surgery I would experience pain when we had intercourse. This was not every time but it was enough to be a worry to fact I was ready to talk to the Dr about it at my next visit when I got hit with this. Well there was no pain this time ....woohoo....our biggest problem with sex is we have no time....I swear ...we have to make an appointment....oh the life of a grandma and you imagine....there is just something wrong with putting those words and grandma and pap....omg.....wasn't it yesterday we were all fooling around in the back seat of a sedan madly in to reality...we are getting old!

Now on to more serious things....I have been getting urges to pee again...and I have not had any accidents today....that is a good thing. I was finally able to get my bowels to move day before yesterday... I had not gone for 4 days ....I am not incorporating Activa to my diet so we will see. You see all those commercials on TV for things that help the disabled like depends and stuff and you think is years down the road and you don't pay attention to them....well when you need them you are thankful they are there....but now I have to admit....I not only wear the pants in the family...I wear the diapers too! lol

Sleeping in not any better...not sure if it is because I just cannot sleep due to worry...remember my son is going thru some stuff....or if it is because of the leg pain....I usually drift off about 3 - 4 am then up around 8 or 9 am....just one time I would like for my head to hit the pillow and me go out and get some serious sleep!

Walking is good I guess. I am walking with a cane but honestly there are days when I feel like I could use a right leg is the one that gives out but my left leg is numb on the inside of my calf and my thigh bothers me when I have leg pain and occasionally it lets me know it is there. I feel like if I start going back to my walker that is regressing...and I refuse to do that....only forward....and if I have to use the walker I guess I will but I do not have to like it...I guess the important thing is that I keep walking.

Driving is far I have not had any trouble but I drive slower and if my leg is hurting me in any way shape or form I do not is not worth it to me. I am just thankful that I can was the most I have driven but had no choice...Dr's appointments, banking that needed done, groceries...just errands in general and toward the end of the drive home my leg was starting to let me know it was there. It is so weird that it works...although slower and clumsier, it hurts, but it feel numb when you touch it....just makes not sense to me. It is very cold now too....Dr. Kunkle says it is the nerves. I told you he told me we would see where we are in a year and a half....I cannot imagine!

I start physical therapy Tuesday. I am really excited about that...I am sure that he can give me some exercises to do at home that will strengthen my legs....I can hardly wait. It is a sad state of affairs when your good leg has a steel plate and 8 screws in it with the ankle screwed back on! I just hope I do not have to win a race! lol

OK hope you all have a good night and hope I have not been too boring this evening...unfortunately when you lay around mostly and pass the time by blogging or anything else you can do on a computer you get boring!

Peace and love to you all,


Tuesday, April 27, 2010

Finally an answer to some of my questions.

Finally today I went to the doctor and he gave me some real answers. Maybe I just asked the right questions but at least I feel like I have a game plan and that feels really good....guess maybe I am in charge I handle this is up to that I really know what it is!

My doctor today told me indeed I am diagnosed with cauda equina syndrome....none of the other Dr's would say the words to was yes it is nerve damage...this was because of the fragments on the nerve...and so was like no one wanted to say the words. That really upset me....I needed to hear what it was that was really causing my leg pain and making me pee my pants...and the other various things that were going on....I needed to know what it was that I was dealing with, I needed to hear that my symptoms really did exsist and today he said "yes is Cauda Equina and NO this is not in your imagination." So now we have a name for the things that are happening to my body....and it is all good...imagine that! The pain is the nerves healing...come on really...I can handle some pain if I can walk again...crap we just did that with my other leg! He did tell me that nerves heal very very slowly and that he has had patients that have reported healing up to 5 years after incident of nerve damage but that 1 and 1/2 years will be our marker...he said it will take at least that long for the nerves to heal and we will aim for that ...then we will get excited...I like his now I have a time frame and by then we should know exactly what we are dealing with..and now I can relax a bit. I honestly thought when I woke up from surgery and could wiggle my toes and had no leg pain...hahhhhhhhhhhhh...I was thrilled...I mean I thought OK you heal this body up and you are good to go....I did not understand that the nerves were damaged and had to heal. I had not a clue what was in store for me....I was beating myself up because I thought I should be doing better than I it was three months post op and I am still in pain...and I cannot walk any better than I could before the surgery.....NOW.... I feel like I am right on schedule or am doing is ok to hurt and it is ok that you still walk funny....if that makes sense. Now I can relax and heal myself....this has made all the difference to me...Junior understood immediately when I told him how I felt...he knows me so well....Now I have a goal and something to work towards...I know I will be OK....I may walk funny for awhile but I guarantee you...I will walk and my leg will work again.....and I feel right on schedule and I am no longer afraid my leg will not work.....I am getting more sensation this week with my bladder that is a good really I am doing very well.

Another good thing he did ....I really am gaining a great respect for my new Doctors....omg...they listen to me....they answer my is a blessed is all the difference. I feel pretty good about what they are doing for me and I know that is a big part of any rate I now have an appointment with a physical therapist ...but not just a therapist ...this guy is a Doctor with a background in he will be familiar with the cauda equina nerves and what to look for....I am impressed and so very any rate I go there Tuesday morning for an evaluation with this Doctor. So that is a good thing. He will also understand about the nerve pain and we may beable to do some things to help that maybe no pain clinic! That would be a good thing and save me miles on the when I can get out I don't want to go far....I really do love my home and just want to beable to do what I want to do around here!

All in all I feel like I had a very successful appointment with my least I have a game plan and I know that there is light at the end of this tunnel....Life goes on....this is just another little delay....but life goes on and that is good thing.

Peace and love to all....

me! is suppose to frost tonight at our little edge of the hubby covered up my bleeding heart with a sheet so it would not how sweet is that coal miner????
My rock.

Monday, April 26, 2010

Night time and pain and nerves!

Night time is worse...last night my leg really hurt. I could not find a comfortable position at all...first one pillow then two...and still no relief. I finally took another Pain pill and a Trazadone...that was about 3 am and I guess I fell asleep...I woke up around 9:45 this morning so 6 hours is not to bad....but then I could not move my leg very well once I woke up. The pain is horrible when I try to move it and walking is getting more difficult in the mornings. It is like the leg itself has to wake up and is stuck.

I read some more about this in the forums I belong to and it seems to me that the nerves are worked all day and by working them it irritates then when it is time for them to rest they are all inflamed or something and thus the least that is what I think. The problem is that no one really knows and this is just part of the healing process. They say the pain is the nerves healing ...well if that is the case I am healing my rump off!

It seems that after the weekend my legs hurt worse Sunday night and Monday morning and I guess that would be because I have the boys and I am more active....Standing cooking...wii more active in general...(I do believe that kids keep you young!).....and that would irritate the nerve. But then I wonder if irritate is the right word...I am thinking that stimulate is a better least it is alot more positive.

I think being positive is a definite plus with this crap too. I have to laugh about it or I would cry...and I have always said...if you laugh at yourself then people are laughing with you, not that I think anyone would laugh at someone with a disability. BUT I have to admit...I have taken some funny falls.....I just don't bounce as well as I used to.

So general consensus is have a lazy day and no leg pain or go about your day as best as you can and endure some pain, increased numbness etc.....and go on with your life.
I suppose I will pick going on with my life.

Peace and love to you all....have a wonderful day~

Sunday, April 25, 2010

My banged up ankle and hip.... this is what happens when you lose your balance and plop your big ole butt down to the ground....A pain in the ass...literally!...I am not as sore as I was yesturday...feeling a bit more human...Has a rough night last night till about 2 am then I took trazadone to help me sleep...more drugs....but I did get the sleep I needed.
Made a pan of lasagna for dinner and have it in the over...then I think a movie is in the works....I feel the need to relax!

What a day....

Today was filled with drama it son was not in a very good I said at first he is going thru some major life changes and it is hard for him...his two boys are with us on weekends and two evenings a week....sometimes it is hard when you are trying to adjust ..and we are alllll going thru some kind of adjustments in this house! This was a hard day emotionally for them and him....and grandma picks up the pieces...and I hurt like crap today....I found bruises I did not know I had after my foot is totally blue toes look like little sausages sticking big toe is purple matches my hair!!! It is very swollen and tender to walk on.

I have had pain in my legs today just like the old kind before the surgery...the burning....wavey starts at my hip and travels to the tips of my toes....crazy...I have only taken 4 pain pills today...which is a good thing...I did take both of the naproxen and I cut the neurontin by vision is getting blurry when I first take my medicine...or at least that is when I seemed to notice it today...I only stood long enough to deep fry wings for the guys....and my legs hurt...that does not seem fair...seems like a girl ought to at least have a story to tell about her legs hurting....I went for a hike ....I started walking or running...oh....I have CES....that's a real pisser! I did ask the my neurologist about physical therapy and he said not as long as I was still have the leg pain like I am...Dr. Kunkle agreed with him. I was kind of looking forward to getting out of the house!

I still am having bowel problems...pretty soon I will really relate to that "she is full of......." lol.
That is probably true anyway!!!! At any rate I did not get to the grocery store because my son decided I did not need to drive with my foot and I am not sure I could have, but, I am going to get my hands on some fiber bars and different things. I was reading about timing and stimulation to make yourself go....this is one thing that does worry me...I am so hoping that it is the pain meds. The really scary part to me is that my stomach does not really hurt either....I have no urge to go at all...that is just weird.....The voiding part of cleansing my body is what it is......I actually had an accident free day! It seems strange to be talking about this where all the world can see it but it is part of this syndrome...actually a very big part of it evidently...that and can't poop and you get pain too.....sounds like fun to me!

I have been reading today about pain and different kinds of pain. I did not realize there is different kinds of pain but there is I guess. I have mulled thru some of it and was surprised to see words that I had used to describe my pain....seems to be a common analogy where pain is concerned! I was reading about how nerves react to pain and I am totally confused....I saved the site to my favorites and will get back to eyes got blurry and I could not read ....damn pills anyway! I am not sure that medicine is causing that but it is an easy blame! lol

So today I am standing in my kitchen and my leg is shooting pains from the top to the bottom...and it feels like it wants to fly out of place. I asked Dr. Nair about that and he said that the nerves the told the ligaments to tighten and loosen in my legs and knees and ankle and, I guess where ever you have ligaments in your legs, are damaged and not sending the signals out and my leg is like a free agent in that means the muscles and ligaments are just hanging round.....Soooooooooooooo that means I need to build it up and I remember the exercises they gave me to strengthen my knee after surgery so I will make sure I will do them religiously....I cannot say I have been faithful to that for the last few weeks.

I am tired tonight....Jr has been growling at me that I am doing to much but I really do not have much of a goes on and mine is not willing to wait on CES at this moment. Family dynamics 101 I guess...I just know that I keep putting one foot in front of the other and hope I am going in the right direction! Maybe that is why my leg is flying wants to go the other way......ha ha. Ok...take care all....I am gonna go check on the kids and make sure they are in for the night....Charlie would stay up till the chickens get up if you would let him....Benson falls asleep in the middle of his tv program....Jason is in bed ...he works tomorrow....and Jr is working now. Me and the dogs are gonna find a movie....Love and Peace to you and yours!

Friday, April 23, 2010

The Bathroom ....a Dangerous place or I have turned into a commercial!

Ok....after taking more laxatives I finally had rumblings in my belly this morning so I hobbled into the bathroom and after going to the bathroom proceeded to stand up and pull up my undies and down I went.....My right leg gave out and my ankle bent and my toes ....well I heard them crack and they were under my toe...but I can move them! lol Seriously they are black and blue already and I have a bruise on my ankle....I scraped/cut my butt on the corner of my vanity and there I laid.....with the door shut on one side and hubby on the crying and tell him to just give me a minute. Him on the outside...saying "are you ok?"....hell no I just fell and I can't get up...omg....I am a commercial....When the heck did that happen??????? This syndrome is nothing to toy with I am telling you!

At any rate I finally got from in front of the door and my hubby actually picked me up from the floor...he is such a good man.....The place on my butt toes are bruising but they really don't hurt....they are basically numb you ankle...well it is kind of numb to and I have not walked on it yet really. I think I see a burise appearing. Oh well...this too shall pass.

Talk to you later! I am sure my day will be more interesting as we go....atleast I am counting on it! Have a great day!

As the day has gone on my foot has become blue but it does not hurt...ofcourse I am walking easily on it...ha I sit here wondering if the numbness from the CES is lessing the pain from the toe bend or if the pain pills are back is achy and I am really hoping that it is just normal and I did not pull anything out of whack...I am about 11 weeks post op so I am hoping I am healed up inside and nothing got damaged. The longer the day goes the sorer I am getting and the bluer my foot my grandma would say...such is life!

Thursday, April 22, 2010

I have decided that in this blog I am going to be very frank and honest about this syndrome. I want to discuss my physical problems because number one they are problems and any helpful hints or ideas are always welcome to me.

I am having trouble with my bowels presently. I need to get into a routine of taking laxatives or something and am really fighting it. I seem to have to go thru a period where I think this is temporary and it will be ok then it smacks me in the face and I realize ok...have to make some allowances and move on. At this point in time I am beginning to see that this in not temporary...this is/or may be a way of life. So I guess I have to surcomb to the habit of taking laxatives on a regular basis. Now the quest is to find a routine that works for me. I need more fiber obviously...and maybe a stool softener. I understand that the pain medication will make you constipated...but at this point in time I need pain medication...ok...more pills to take care of what the other pills may do....I always hated that!

In the mean time I am going to find some fiber bars I like and get out a jar of the applesauce I canned this fall and eat it....then we will see what happens. I have read where some of the people that have this actually have to go to the hospital and have them selves cleaned out. I really have no urges to go to the is like I have to plan it and really concentrate to urinate and have bowel movements. What was a natural function has now become a quest but this too shall pun intended!

I just took my pain medication for the night...I had a relatively sedate day...just hanging around waiting for the kids to get home. We ate and then I took them to thier mother for the night....I can drive...but I am slow..and I do have a handicapped sticker now...point is I did nothing major today and now my back is achey and my legs are hurting and numb. Hopefully I will sleep to night.

The Life of Cauda Equina.....

OK.......I have decided to start a very first one...ta daaaaaaaaaaaaaaaa...I have been handed a test in my life and I need information, support, an call it what you want ....I need to discuss this and say what is on my mind about it.....Welcome to the world of Cauda Equina Syndrome.

Lets start this adventure with my name and my story....I am Lynn ....I live in a very very rural town in West Virginia...27 students in the graduating class last year...I kid you not....I live a quiet life with my husband, my dogs, and my grandchildren and their father at the end of my lane. We live in a small cedar home on a lake in the woods....Life has been very good to me. I am 55 years old, married for 39 years to a coal miner, my soul mate and best friend. I have one son, a coal miner who is presently going thru a divorce (I only add this because I feel that stress has a bearing on this wonderful syndrome) and is the father of two boys, 10 and 12.

I am the proud half of a Therapy Dog Team...I have two Rottweilers. Sativa my girl is a licensed therapy dog and until three years ago we visited nursing homes on a regular basis and were also active members of Hospice of Garrett County Maryland. Then I have my "little boy dog" Walker...he was / is my dream dog. I had plans to show him then I fell and broke my left leg in three places and snapped my ankle we wasted two years learning to walk this.. Cauda Equina Syndrome....but life goes on and so do we!

My life with this syndrome began on January 24, 2010. I woke up and could not walk. I was in horrible pain...the worse pain I have ever endured. I was sure I had slept wrong when I woke up and could not husband helped me out of bed and my foot was not was numb and dragging....numb but hurting at the same time, kind of like it was asleep and I could not lift it...I had never heard of drop foot. Well truth is I am not the type of person that runs to the doctors at the drop of a is not on my list of fun things to do! I babied my back as I had back pain with ice for a few days with ice and ate any kind of pain pill I had available to me for a day or two. I finally had to admit that something was wrong and called my doctor. The next day I went to the Doctors and he took one look at me and said something is really wrong with you huh? Well yeahhhhhhhhh....he did a few muscle tone test and ordered a MRI never mentioning the name Cauda Equina Syndrome but thinking something was going on with the disc and we needed to find out immediately. Well that was Friday, on Monday I had the MRI, Tuesday he called me and told me that I needed to see a Neurologist ASAP and he recommended a Doctor at John Hopkins University Hospital in Baltimore Maryland. Wednesday Dr. Nair office called me and scheduled an appointment for me on Friday. I can remember thinking "wow..that's fast...maybe he can fix me up and my legs won't hurt anymore".

Friday Feb 5, 2010 was a history making day in my opinion and also to those on the East Coast...we were in the beginning of a history making blizzard..Baltimore and surrounding area was brought to a stop.....I remember we called the Dr on the way down to make sure he would still be in his office and they were going to wait for us because we were driving so far. Well we were at the office at 1:30 pm and after looking at my MRI and ordering some more xrays...and testing this and questioning that....I was on the operating table about 6-7 hours later. Dr. Nair wasted no time. I have never been treated so well by a doctor..except mine here at home. I feel very blessed to have what I feel is good medical care, the problem is no one knows much about this syndrome because it is so rare and the answers they do have leave you wanting more information and guarantees...and with this there is no certainties.

So I have my surgery and am in the hospital for 4 cousin Roxy got snowed in with me but that is a whole different story and again I am blessed by having a wonderful family, she never left my side! I then went to my other cousins house (Roxys sisters house) and took over her bedroom....I could not get home...the snow was too deep and I had 17 staples in my back. I was walking with a walker and I was getting up to go to the bathroom by myself but other than that I was pretty well taken care of by Vanna and her family. I remember sitting there looking out of her bedroom window thinking that I could not wait until this was over and I was home with my dogs and doing my thing...taking care of my family and cooking and cleaning life. I never dreamed that I would be dealing with issues for what looks like could be forever!

Finally I was transported by my other cousin, Nathan and his wife...( is really beginning to sound like a West Virginia thing here....Honestly my family is from Maryland...I moved here by choice!) to my mothers house...I still could not get back on the mountain to my husband and my family...I was stuck in the snow literally!

While I was at my Mothers I noticed that I was having problems with numbness still and I seemed to be peeing myself even more than usual. I had been having incontinence problems for awhile and had a cystoscope this past October. My complaints were incontinence and frequent bladder infections. I also could not pee...if that makes sense...I did not get the urge to pee but when I did I better be there or an accident was going to happen.....(bless you depends!).

The results of the cystoscope was that I have a under active bladder...not sure why....take this (macrodantin Sp?) as a maintenance antibiotic and that should keep the infections under control....ok...ummmmmmmmm why is my bladder under active?....why does it not empty all the way? These questions were like a million dollar never really get the just is. As I look back now I think why didn't my urologist connect this with nerve damage...has he never seen an under active bladder before and questioning WHY or does he just hand out maintenance antibiotics? I remember filling out the papers for my medical history...I do not have copies of them but I can guarantee you that if it asked about leg pain or arthritis I would have checked yes...Hmmmmmmmmmmm that's 2 red flags of Cauda Equina....I just have a hard time understanding why someone did not start to put the signs together.

My life has changed in so many ways that it is not funny. I am now taking medicine all the time, I have pain continuously, I don't sleep at night, I walk with a cane and the list goes on.

I wonder how many people are out there with this going on...I have a zillion is just craziness.

I am hoping with this blog to learn from others and share my story or journey as I like to think of it....I know I will come thru this being a better person...and I know I can always look around and see someone in worse shape than I am in....this is what keeps me going...that and my family and my belief in God. I am thankful for what I have....scared of what might be...and learning to accept....this my friends is a indeed a journey.

More tomorrow....peace to you all.