Today is my 3 weeks. Starting to really feel the effects of the surgery. My neck rotation is much much better. My walking has improved. Sleeping is so wonderful, last night I got a full nights sleep with out sleeping medication.
I really can not wait to go see Dr Heilman. He really is going to be shocked at ALL the little things that have resolved. I just wished it had taken away the light headed feeling, perhaps in time this will go away once I am no longer taking any muscle relaxers. I still have a little ringing in my head when I lay down, each day it goes down just a little more.
Today I feel like I will be able to sit at the sewing machine and get working on some Christmas stuff. I have been planning and preparing but unable to sew yet. My neck feels like it's up for the challenge today.
It has been 5 days with out the steroids and I have noticed that I am not as hungry as I was. Boy those things make you want to EAT! Bet I gained 8-10 lbs. I must try and get out and walk more, plus lay off the sweets!
This morning I woke with a head ache which surprised me. Not the same type of CM head ache. I took 2 Tylenol and it went right away. Could be that I slept funny, I don't know. Just glad the Tylenol worked. I am sure every time I get a head ache I will worry. I never want those CM head aches again cause they are killer and nothing works.
Yesterday I was out and about with my hubby. I was explaining what CM is and the long process I went threw before surgery. To me it has been difficult but to hear and see the expressions of others, well lets just say that people find it hard to believe that one would suffer that long before something was done. If you really think about it, they are correct! There needs to be a real change in how CM is treated.
Tuesday, October 28, 2008
Sunday, October 26, 2008
Oh Surgeon was correct
Woke at about 10pm with a killer head ache. This would be the head ache he told me about from no more steroids. Nothing is touching it. I have tried icing down my head and Tylenol. I just took a muscle relaxer, hoping that helps. I have a few perks left so it by morning it's no better I'll take one.
It is unlike any other HA I have had. This time I can feel the surgery inside. Now I know why he warned me ahead of time. Glad he did otherwise I might be freaking that I sprung a leak. Also doesn't help we are having a rain storm and the pressure is strong in the air.
I am sitting next to an open door and the cool air feel good. I will hang here awhile till the muscle relaxer kicks in and try and get some more sleep. I wonder if I caused this head ache by cutting back on the medications??
Tomorrow I will continue with the muscle relaxers, till my appointment with Dr Heilman. I may be pushing myself to hard to get off something that I may need. I also have a non steroid anti inflammatory I should be taking.
Boy geesh. 15 minutes and the head ache has lessened with the muscle relaxer. Wished I had thought to take it at 10pm rather then 4am. I really need to stop fighting with myself about popping pills every day. I would much rather take a few sleepy naps during the day then to have another head ache like this. Another lesson learned for me.
It is unlike any other HA I have had. This time I can feel the surgery inside. Now I know why he warned me ahead of time. Glad he did otherwise I might be freaking that I sprung a leak. Also doesn't help we are having a rain storm and the pressure is strong in the air.
I am sitting next to an open door and the cool air feel good. I will hang here awhile till the muscle relaxer kicks in and try and get some more sleep. I wonder if I caused this head ache by cutting back on the medications??
Tomorrow I will continue with the muscle relaxers, till my appointment with Dr Heilman. I may be pushing myself to hard to get off something that I may need. I also have a non steroid anti inflammatory I should be taking.
Boy geesh. 15 minutes and the head ache has lessened with the muscle relaxer. Wished I had thought to take it at 10pm rather then 4am. I really need to stop fighting with myself about popping pills every day. I would much rather take a few sleepy naps during the day then to have another head ache like this. Another lesson learned for me.
Saturday, October 25, 2008
Family
It is not just one person that CM affects. It's the family, the whole family. I have lost touch with my brother and his family, my in laws and their children. Horrible! I have so much to make up, not bad stuff, just time!
My brain was so consumed with this disease and getting it treated I lost years of family activities. I didn't even see this happening. Months turned to years of disconnect. Worse yet it affected how I looked at family. I viewed everything with a little anger because I could not do the thing they could so I just ran and hid in my bedroom hoping to sleep it off. For years!
Now I want my family, all of them. Hoping they have not all moved on thinking I am some kind of snob that doesn't care.
Doctors need to know this. They need to know that by dragging out long drug treatments it can cause so much disconnect with family. They need to involve the family right from the beginning. YOU need to involve family with your care and treatment.
For the first 2 years I did everything alone. All appointments, all research. I kept every thing to myself. Because I was unsure, of what this really was. I was embarrassed because so many appointments yielded nothing but hurt and confusion from these doctors.......it's all in your head! I did not want my family to know that I was perhaps CRAZY.
When really what I should have done is empower my family to advocate for me......that I was not crazy and something was really wrong. The last 6 months I did this and got noticed and VALIDATED that YES something was wrong and treatable. Oh the time and energy I wasted.
Time and energy I have now, home recovering. This time will be spent much more wisely. Reconnecting with my lost family and friends. Reconnecting with God.
My brain was so consumed with this disease and getting it treated I lost years of family activities. I didn't even see this happening. Months turned to years of disconnect. Worse yet it affected how I looked at family. I viewed everything with a little anger because I could not do the thing they could so I just ran and hid in my bedroom hoping to sleep it off. For years!
Now I want my family, all of them. Hoping they have not all moved on thinking I am some kind of snob that doesn't care.
Doctors need to know this. They need to know that by dragging out long drug treatments it can cause so much disconnect with family. They need to involve the family right from the beginning. YOU need to involve family with your care and treatment.
For the first 2 years I did everything alone. All appointments, all research. I kept every thing to myself. Because I was unsure, of what this really was. I was embarrassed because so many appointments yielded nothing but hurt and confusion from these doctors.......it's all in your head! I did not want my family to know that I was perhaps CRAZY.
When really what I should have done is empower my family to advocate for me......that I was not crazy and something was really wrong. The last 6 months I did this and got noticed and VALIDATED that YES something was wrong and treatable. Oh the time and energy I wasted.
Time and energy I have now, home recovering. This time will be spent much more wisely. Reconnecting with my lost family and friends. Reconnecting with God.
Wednesday, October 22, 2008
Sense of peace
For the past couple days I have had this feeling of true peace. My head/brain no longer feels like it is a miss firing ball of emotions. A feeling like everything is OK or will be OK.
I use to worry, worry myself sick. Over everything, the kids, my husband, the job and money. I have been able to just process thoughts and move on, not getting stuck in some emotional circle where that's all I can think about.
Weird!
I know that depression can be caused by Chiari. I never ever thought I was depressed. Not chipper me. Maybe I was! Maybe my brain was so squashed that it was miss firing signals.
That heavy weight I carried at the back of my head is gone, could this have been some of it? Before when I would put my head down to go to sleep this Chiari is all I thought about......the what ifs, the bad doctors, will I wake up, how am I going to get threw the next day?
The last 4 nights I go to bed and just sleep. I don't remember what I am thinking just before I fall a sleep. I wake rested and refreshed. I have not had 1 episode of Explosion Head Syndrome, not 1. Could my new space really be doing this? I must make note to tell Dr Heilman about this!
For he did tell me and my husband that when the brain is put under stress things can change and with time perhaps it will relieve it's self. By having my CSF restricted it was putting pressure on my whole brain. Again he made NO promises, just the hopes that in time these things.......emotions, memory, word findings would restore! I am sure he will be as pleased as I am that these things are indeed being restored.
I use to worry, worry myself sick. Over everything, the kids, my husband, the job and money. I have been able to just process thoughts and move on, not getting stuck in some emotional circle where that's all I can think about.
Weird!
I know that depression can be caused by Chiari. I never ever thought I was depressed. Not chipper me. Maybe I was! Maybe my brain was so squashed that it was miss firing signals.
That heavy weight I carried at the back of my head is gone, could this have been some of it? Before when I would put my head down to go to sleep this Chiari is all I thought about......the what ifs, the bad doctors, will I wake up, how am I going to get threw the next day?
The last 4 nights I go to bed and just sleep. I don't remember what I am thinking just before I fall a sleep. I wake rested and refreshed. I have not had 1 episode of Explosion Head Syndrome, not 1. Could my new space really be doing this? I must make note to tell Dr Heilman about this!
For he did tell me and my husband that when the brain is put under stress things can change and with time perhaps it will relieve it's self. By having my CSF restricted it was putting pressure on my whole brain. Again he made NO promises, just the hopes that in time these things.......emotions, memory, word findings would restore! I am sure he will be as pleased as I am that these things are indeed being restored.
Sunday, October 19, 2008
Learned a lesson today
So I had a little experiment going on that I did not tell anyone about. I was wondering if the medication for my BP was really needed. I wanted to find out if having my CSF restored I would be fine with out it.
When I got up this AM I felt a little funny. Lightheaded and just off. I eat a good breakfast and took all my med's. By noon I am thinking what is up with this. I have not been dizzy for 11 days, please say it's not so. OH the medication! I took a hot shower, put on my compression stocking and TOOK my medication.
After a long nap, I got up and now I am fine. I was so hoping that I really did not need to take this medication. I was dreaming that I really did not develop Small Fiber Neuropathy, which causes me to have Postural Hypotension.
So from now on I will take it faithfully!
When I got up this AM I felt a little funny. Lightheaded and just off. I eat a good breakfast and took all my med's. By noon I am thinking what is up with this. I have not been dizzy for 11 days, please say it's not so. OH the medication! I took a hot shower, put on my compression stocking and TOOK my medication.
After a long nap, I got up and now I am fine. I was so hoping that I really did not need to take this medication. I was dreaming that I really did not develop Small Fiber Neuropathy, which causes me to have Postural Hypotension.
So from now on I will take it faithfully!
Saturday, October 18, 2008
I can read again
Oh have I missed being on the couch and reading a good book. It has been nearly 3 years since I have been able to do this. Actually I had nothing to read anymore. Got rid of all my books because it depressed me.
So today I went out to check my mail. I had a package! A get well package someone mailed me. This has been so exciting everyday getting a card, but a package! So I opened it up and it was a book from a grade school friend. Called 3:16. I was excited but nervous. I have not opened up anything to read in so long.
After lunch, hubby is watching TV and I crawled up on the couch and started to read. What a wonderful book so far. I read 5 chapters and did not feel sick to my stomach. My eyes stayed tracking the words and I remember what I read.
To bad I gave away all my books, I could re read them all. Praise the lord for healing my sight! So I will finish this tomorrow. Maybe read it twice!
So today I went out to check my mail. I had a package! A get well package someone mailed me. This has been so exciting everyday getting a card, but a package! So I opened it up and it was a book from a grade school friend. Called 3:16. I was excited but nervous. I have not opened up anything to read in so long.
After lunch, hubby is watching TV and I crawled up on the couch and started to read. What a wonderful book so far. I read 5 chapters and did not feel sick to my stomach. My eyes stayed tracking the words and I remember what I read.
To bad I gave away all my books, I could re read them all. Praise the lord for healing my sight! So I will finish this tomorrow. Maybe read it twice!
Thursday, October 16, 2008
Thinking
I always thought of myself as a smart person. No doubts about what I could do. Right now I am feeling so clean and clear it has me a little scared. I want a really big math problem to solve or world hunger. Better yet give me the damn federal bail out package and I will fix it!
My body is not ready, head is stiff and tender. I can not shut my brain down at night or during the day, it's like little lights going off of ideas.
Tomorrow I go back to Boston to get out my stitches. This will get me out of the house for about 6 hours. This will be a good thing for my growing mind.
Spoke with work tonight and they want me back sooner then later. Not happening if I risk injuring myself. They can just wait like I am. However my husband is so not happy with out me working with him. We have worked together for so many years, he feels lost! He does not want me back till Dr. Heilman says 100%, so home I am!
I want to wash dishes, make my bed and put away my clean clothes. I feel so useless right now. I hate having to ask, oh I wish these next few weeks would just fly by much faster then the few days I have spent doing nothing.
My body is not ready, head is stiff and tender. I can not shut my brain down at night or during the day, it's like little lights going off of ideas.
Tomorrow I go back to Boston to get out my stitches. This will get me out of the house for about 6 hours. This will be a good thing for my growing mind.
Spoke with work tonight and they want me back sooner then later. Not happening if I risk injuring myself. They can just wait like I am. However my husband is so not happy with out me working with him. We have worked together for so many years, he feels lost! He does not want me back till Dr. Heilman says 100%, so home I am!
I want to wash dishes, make my bed and put away my clean clothes. I feel so useless right now. I hate having to ask, oh I wish these next few weeks would just fly by much faster then the few days I have spent doing nothing.
Wednesday, October 15, 2008
Day of surgery......my new Birthday!
It is about 3:30 am on Tuesday the 7Th of October. I am up and ready to go. We have packed a big cooler of food, feed all the animals and the house is all in order. I took care of all personal stuff....paper work, legal stuff, etc... I am prepared! We all meet a few miles away, my family! And a few friends. Off to Boston for a 6am check in.
Of course we are a few minutes late. We always are late! The check in is packed with people lined up for surgery. I get greeted and escorted to a changing room. Get the house gown and a pair of scrubs, oh the slippers too. Then I go to get weighted and vitals taken. All is going good, although I can see my hubby is starting to get freaky. I wished I could take that away for him......but I can't, I just tell him I will be OK and that I love him.
So they call my name....I am next! I give everyone a hug and kiss, extra one for my hubby! Tell them I love them and I will be fine! I get walked down a long hall and into another holding pattern of rows and rows of beds. I get my place and they cover my hair with a fish net and begin to hook up lines for the heart. Then it's the IVs and since I have Low Blood Pressure they put in a A line to get the most accurate reading.
Each part of my surgeons team comes over to talk with me. First are the Anesthesiologist, what a hoot they were....some pretty funny people. They did give me a choice of how I wanted it to work: with there eyes open or MINE! I picked theirs! Then the Nurses, which one commented that I must have done a lot of prep and research because I have the TOP team in NE working on my case. This made me feel very comfy. Then the surgeons that would be helping: they promised to take good care of me and keep my husband informed. Finally my doctor: Dr Heilman, in his scrubs ready to go. I asked him if he slept good? He joked and said he has not yet........ No he replied, when I have a case like this we ALL go to bed early! My friends with the medications came back and I only remember him saying......so you like Ativan, well wait till you try this..........................OUT!
Seemed I was only out a second. I woke and my throat was so dry and it hurt. I was thirsty but they would not give me anything. I could hardly talk. The back of my head felt like cement. However, funny I had NO pain in my right eye and NO pressure in my right ear. Everything else hurt. I opened my eyes and looked around and it was crystal clear.....the smells, the sounds, I was understanding everything! Now to some this may be odd, but I was excited! A nurse came over and asked me my name.....where I was......my birthday......To which I replied all correct except my Birthday, I told her it was Oct. 7, 2008. No she said what is YOUR birthday! I giggled......my real one is Aug. 14, 1966 but today I am REBORN! She got it!! Then Dr. Heilman came to check on me, I told him I have NO eye and ear pain! He was reserved and said lets just hope it stays. He told me it was VERY crowded in there and things cleaned up nicely.
They got me my husband and I was so glad to see him. He looked so tired and stressed, poor baby! My nurse was a general I swear, she made him leave. Not before he gave me a hug, kiss and my pillow. Which by the way was the WRONG pillow for me to have and for YOU if you are having this surgery.
Onto second shift nurses (7pm - 7am). Not as much a warden but pretty close. I get to see my daughter for about 2 minutes. That's it. Can't see my sons or my mom. By midnight she sees I am not comfortable and she comes in and says.......do you want to get out of here faster? YES I DO. Then lets do this MY way, I have cared for many whom have had your surgery, lets start with your PILLOW. GONE! She has soft smaller ones and some big side ones and kept rolling me side to side every 30 minutes. Kept increasing the degree on the bed. Shifted me up when I was slipping. She was there the whole time! By the time 7am came she had bought me an Ice Coffee and had me propped up so good I could drink it! So I am ready to move to a normal room.
As soon as I get into my room, PT is there! Lets Go! So I go! They got me out of bed. No stopping me now. Lines are coming out and my medication is by pills. This is what I want! They feed me good hot food, no it really was good! So the first day I walk around the halls every hour for 15 minutes. Yes I hurt! But it's on the outside, no longer do I hurt on the inside! I get my visit from Dr. Heilman whom is shocked to say the least. I am 3 days ahead of the normal recovery time. He asked me if Tomorrow I would like to go home......if........I promised to be good! I agreed and started making my plans to go home!
Of course we are a few minutes late. We always are late! The check in is packed with people lined up for surgery. I get greeted and escorted to a changing room. Get the house gown and a pair of scrubs, oh the slippers too. Then I go to get weighted and vitals taken. All is going good, although I can see my hubby is starting to get freaky. I wished I could take that away for him......but I can't, I just tell him I will be OK and that I love him.
So they call my name....I am next! I give everyone a hug and kiss, extra one for my hubby! Tell them I love them and I will be fine! I get walked down a long hall and into another holding pattern of rows and rows of beds. I get my place and they cover my hair with a fish net and begin to hook up lines for the heart. Then it's the IVs and since I have Low Blood Pressure they put in a A line to get the most accurate reading.
Each part of my surgeons team comes over to talk with me. First are the Anesthesiologist, what a hoot they were....some pretty funny people. They did give me a choice of how I wanted it to work: with there eyes open or MINE! I picked theirs! Then the Nurses, which one commented that I must have done a lot of prep and research because I have the TOP team in NE working on my case. This made me feel very comfy. Then the surgeons that would be helping: they promised to take good care of me and keep my husband informed. Finally my doctor: Dr Heilman, in his scrubs ready to go. I asked him if he slept good? He joked and said he has not yet........ No he replied, when I have a case like this we ALL go to bed early! My friends with the medications came back and I only remember him saying......so you like Ativan, well wait till you try this..........................OUT!
Seemed I was only out a second. I woke and my throat was so dry and it hurt. I was thirsty but they would not give me anything. I could hardly talk. The back of my head felt like cement. However, funny I had NO pain in my right eye and NO pressure in my right ear. Everything else hurt. I opened my eyes and looked around and it was crystal clear.....the smells, the sounds, I was understanding everything! Now to some this may be odd, but I was excited! A nurse came over and asked me my name.....where I was......my birthday......To which I replied all correct except my Birthday, I told her it was Oct. 7, 2008. No she said what is YOUR birthday! I giggled......my real one is Aug. 14, 1966 but today I am REBORN! She got it!! Then Dr. Heilman came to check on me, I told him I have NO eye and ear pain! He was reserved and said lets just hope it stays. He told me it was VERY crowded in there and things cleaned up nicely.
They got me my husband and I was so glad to see him. He looked so tired and stressed, poor baby! My nurse was a general I swear, she made him leave. Not before he gave me a hug, kiss and my pillow. Which by the way was the WRONG pillow for me to have and for YOU if you are having this surgery.
Onto second shift nurses (7pm - 7am). Not as much a warden but pretty close. I get to see my daughter for about 2 minutes. That's it. Can't see my sons or my mom. By midnight she sees I am not comfortable and she comes in and says.......do you want to get out of here faster? YES I DO. Then lets do this MY way, I have cared for many whom have had your surgery, lets start with your PILLOW. GONE! She has soft smaller ones and some big side ones and kept rolling me side to side every 30 minutes. Kept increasing the degree on the bed. Shifted me up when I was slipping. She was there the whole time! By the time 7am came she had bought me an Ice Coffee and had me propped up so good I could drink it! So I am ready to move to a normal room.
As soon as I get into my room, PT is there! Lets Go! So I go! They got me out of bed. No stopping me now. Lines are coming out and my medication is by pills. This is what I want! They feed me good hot food, no it really was good! So the first day I walk around the halls every hour for 15 minutes. Yes I hurt! But it's on the outside, no longer do I hurt on the inside! I get my visit from Dr. Heilman whom is shocked to say the least. I am 3 days ahead of the normal recovery time. He asked me if Tomorrow I would like to go home......if........I promised to be good! I agreed and started making my plans to go home!
Tuesday, October 14, 2008
When it all changed in my life.....
It was in November of 2005. I was driving my car and some one rear ended me very hard. Oh god my head feel like it exploded. The noise in my ears was awful. The guy who hit me got out of his truck and banged on my window, saying your car is fine, I am late for work here's my info. I was crying and my head hurt. I picked up my cell phone and called 911. State police where right there with in 1 minute. Then I called my husband at work, we work together. He was there in about 6 minutes.
I never took a ride in the ambulance, they checked me out and released me. My car was smashed and they said it's OK to drive. Well I did, right to the Ford Dealership I worked for and bought my car from. Body shop manager said "You can't drive this, your frame is bent". 6 weeks to fix the back half of my car.
Now the pain is bad, I go to a Chiro. What a mistake that was. With in 2 weeks I can hardly move my neck and my head is throbbing. I stop going. Right after Christmas I am so dizzy I start falling down my stairs. Call my PCP and he see me and orders an MRI of my Brain and C spine. He calls me the next day and says I need to see a Neurologist for they found something on my MRI called Arnold Chiari Malformation. So off I go.
This doctor barely looks at me, has me walk the hall way and turns around to say.....this is Incidental and nothing to worry about. You have Whiplash. Here take these pills and call me in 6 months if things don't improve. Well they did not, they got worse. I try several time to get an appointment with him but no return calls, so I fax......YOUR FIRED!
I go to a recommended NL from my mom. He really is a good doctor. Looks at my MRI and tells me that is could be Chiari but.....lets look at your neck. So he treats me for Occipital Neuralgia by injections into the C1 area. Puts me on Nerve med's, sets me up with PT and OT. Now by June of 06 things are starting to calm down a bit. Still no memory, still no sleep, tripping over my own feet, pressure is building up in my right eye and ear, but the pain in my neck is improving.
I treat myself to a fancy hair cut and dye. Well let me tell you that if you think you have CM do not put your head in a hairdressers sink. I had the same explosive thing happen in my head. Not so much a treat anymore, now I can't wait to go home and crawl up in bed and cry. Call the good doctor back and go see him for more shots. Plus a bonus of increased ringing in my right ear. We continue with this treatment threw out the fall and winter. By January 07 I am back to June of 06, so I stop treating.
March of 07 the ringing is getting really bad and my eye pressure has increased, motor skills are declining as with my memory. Call my PCP and ask if I should have another MRI? He says no, lets send you to an ENT specialist. Well that was a waste. All the test they did where all NORMAL. So I just try and fumble threw things. Work is stressful and I am not sleeping well, my Hubby is frustrated because I am not well or happy. I now am bringing my bed to work with me, pillows and blankets are always handy in my car for a nap during my work day.
June of 07 hubby and I go away for a nice week vacation in the White Mountains. We gear up for some stream fishing and mountain drives. It was really good to get away. After we are there for a couple days I feel like I have the worst flu every. Can not get rid of this head ache and my body hurts so bad. Took a drive UP Mt. Washington and it happened again! That explosion pressure in my head. Was it from the altitude? Was it the high winds? The cold? I did not do anything but walk around. So for a couple days I took it easy, had to cause I could hardly breath or think.
It's now July of 07. By the way I am a Commercial Sales Manager at a Ford Truck Dealership! This is coming into my prime time for selling. I do! Sold a nice plow truck but the blade is in storage.....at this point no one has told me not to lift or do anything........ so far everything is "Incidental"! That was the last sale for 6 weeks for me! I installed the plow and was layed up in bed! So much pressure in my head I wanted to die!
I get a referral to an Neuro Eye Dr @ New England Eye. My eye looks that bad. I bring all my stuff and he told me, your eye sight is fine but we believe this is really related to having CM and YOU NEED to see a Neurosurgeon. Sends me back to my Neurologist for further work up and a referral.
My NL again was wonderful, agreed that we need to pursue this since everything else has not worked. Told me I needed to have a Flow Study done. He referred me to a different hospital and told me under NO circumstances do I have anyone but this NS touch my head for this!
So I wait for my appointment at home. I have never been in so much pain in all my life, I can hardly lift my head off the pillow. Finally, it's here! I go and bring all my stuff and he is very patient with me and the exam is LONG. He does not believe the CM is my current problem! He feels that I have Chronic Pain Syndrome due to Whiplash. He does do the flow study, which comes back "with in the guidelines". Oh am I just let down! His recommendation was for me to start an anti-depressant, heavy exercise program and yoga. I was angry at first with this Top Notch NS, but I agreed to try.
I call my PCP for an appointment to start the drugs. With in a couple months they seem to be working. At least I am not all freaked out, so maybe he has something here. I am able to work most days. I inform people I work with of my struggles and they seem OK with it, me disappearing for a little rest.
The holidays! I go out shopping on my own. Heavy packages! I hurt myself again! I am in the parking lot sitting in my car, crying uncontrollable because I am now having tremors that will not stop. I can not hold the steering wheel and the whole world seems like it is spinning. After about 1 hour it stops to the point I can drive home. Pushing threw is what I have to do!
January 08, I land in the ER. So weak and unable to walk correctly, can not think straight and I hurt all over. They offer me drugs........not what I am here for, NO. They do a CT of my head. shows CM of 7mm. Refers me to Neuro Clinic, call your PCP for a referral. I do and his nurse tells me.......we know all about your CM and we don't think you need to be seem by any further Neuro's. It's just Chronic Pain Syndrome! So I refer myself, call them and tell them what my PCP's office said and they booked me right in.
This is the month I joined a wonderful support via the Internet. WWW.ASAP.ORG, best thing I have done for myself. I started to research Chiari and related neuro disorders. I pledged to myself this is the year I get this problem under control.
I get assigned a nice Resident. He seems good and concerned about my health. So we take my list and start to get things tested. Sleep...........I have central apnea. Head pain..........does so many different MRI's and gets me going on a Non narcotic med to help with swelling. This helps, so we are moving in the right direction. He orders me to restrict my activities and weight carrying to under 20lbs, cut down on my hours as much as I can. Gives me a great book to read about Head Aches, which I should have been a little suspicious about. I have been told I am "Migrainus" and I hate that term...... I am not! I read it and learn a lot about head aches and food, environment so not a total waste.
June 08, my right leg is now burning and so is my right arm. Like someone punched me and it throbs. I am very dizzy when I get up, nearly passing out. Can not keep warm. They order an Autonomic Test. I failed! They tilted me and passed out! Did the muscle biopsy and failed.... Small fiber neuropathy. Anything else you all want to give me! The Asst. Professor of the Dept did the testing, he was concerned about the Chiari! First Dr in a long time to be concerned about this. He told me I really need to have a different kind of MRI. Because my symptoms mainly occur when I am Up Right. He was not sure where they even had them or if I may have to travel. Oh I knew where it was and told him so.........in CT. So off I go to wait for an appointment there. Mean time he puts me on medication to raise my dangerously low blood pressure, side effects......pressure increase in the head!
My Resident NL calls me and is not very excited with the idea of an Up Right MRI. Why? Because there are NO case studies yet done with Chiari to compare to. So What! Lets be the first! He refuses to order my entire spine and only will do my brain and upper C. He warns that they are not looking to see if my herniation goes down further, they are only looking to see if I have any kinking. That there is no guidelines for comparing a MRI with a patient having CM. Ya ya ya I get it Doc., your nervous!
Now I call the Neurosurgeon back and update him. Blood pressure, small fiber damage, worsting head pain and pressure. I ask his opinion of the MRI and he is VERY pleased I am having it done. He is very concerned about the BP. Asked me to email when I have the hard copy CD and he will take a look, told me I don't want their report, I want the images.
August 15, 2008. I have my MRI @ Yale Medical in New Haven, CT. Bring all my old ones for comparing. I asked how many patients per year do you scan here for Chiari? Oh 2-3! What! This sends a real red flag up for me! Do they even know what they are looking for? I tell myself don't freak out, just get your CD and go back to Boston!
Of course the call comes in Monday from the good resident and he tells me everything is normal and fine by there report. I asked did you SEE the scan? No! Are you sure then it's OK? Well they tell me it is! NO, I tell him, I have a copy and I will bring it in for you to see.
September 08, I bring it in. He pops up a few generic slides, ones that even I know how to read and says yup it looks fine! Calls in his Attending and she agrees it looks fine. Both look at me and tell me they have discussed my case and want me to join a 6 week pain management clinic, to learn how to manage my daily activities, get Botox injections and if I could just take a year off from work. WOW, where did all this come from? I leave twisted! Not real happy! Good thing I still have one last chance with the Neurosurgeon in Boston.
Oh by the way, I never told the Good Resident that I had a second opinion appointment set up with a NS in Boston.
I go and see the wonderful Dr. Heilman @ Tufts Medical Center in Boston. Traffic is so backed up I am 2 hours late and he waits for me! Nothing was rushed even thou he was to board a plane. When he put up on the computer my CD he went right for the area that should have been looked at by others before him. The herniation had plugged me down to C1. I was Blocked! He turned to me and said, "here is your problem, you see right here, there is no fluid flowing". Both of us nearly cried, I mean the Dr and I! The look on his face I am sure matched mine, relief and validation. So I agreed whole heartily to decompression surgery. He asked if he could keep the CD......YES teach with it PLEASE!
I called the Resident to inform him that Dr. Heilman may be calling for records so please assist him. He was MAD! MAD at me! Yelled that he could not have missed anything. Why would I want to chance having surgery when I only have migraines? This whole conversation took me by surprise, was not excepting this! Why would I want to have a bump at the back of my head. If indeed I have increased pressure then why don't I do a spinal tap to check? Told me he would get back with me in a day or so. He did alright, to badger me some more. plus to inform me that THEY wanted a second opinion done at a different hospital. I am thinking your crazy! I have been suffering for so long and now you are telling me to go somewhere else? NO! I asked him: "How many patients do you treat that YOU have had decompression surgery done?", he has had ZERO! Why did I not ask this from the beginning? Should have known when he gave me the book to read some months ago, remember?
After my husband meet with Dr. Heilman 2 weeks later, we decided as a team and family this was needed. All questions were answered and the surgery was properly explained, with recovery and success rates. We all agreed it was needed and I was mentally and physically ready. October 7, 2008!
I never took a ride in the ambulance, they checked me out and released me. My car was smashed and they said it's OK to drive. Well I did, right to the Ford Dealership I worked for and bought my car from. Body shop manager said "You can't drive this, your frame is bent". 6 weeks to fix the back half of my car.
Now the pain is bad, I go to a Chiro. What a mistake that was. With in 2 weeks I can hardly move my neck and my head is throbbing. I stop going. Right after Christmas I am so dizzy I start falling down my stairs. Call my PCP and he see me and orders an MRI of my Brain and C spine. He calls me the next day and says I need to see a Neurologist for they found something on my MRI called Arnold Chiari Malformation. So off I go.
This doctor barely looks at me, has me walk the hall way and turns around to say.....this is Incidental and nothing to worry about. You have Whiplash. Here take these pills and call me in 6 months if things don't improve. Well they did not, they got worse. I try several time to get an appointment with him but no return calls, so I fax......YOUR FIRED!
I go to a recommended NL from my mom. He really is a good doctor. Looks at my MRI and tells me that is could be Chiari but.....lets look at your neck. So he treats me for Occipital Neuralgia by injections into the C1 area. Puts me on Nerve med's, sets me up with PT and OT. Now by June of 06 things are starting to calm down a bit. Still no memory, still no sleep, tripping over my own feet, pressure is building up in my right eye and ear, but the pain in my neck is improving.
I treat myself to a fancy hair cut and dye. Well let me tell you that if you think you have CM do not put your head in a hairdressers sink. I had the same explosive thing happen in my head. Not so much a treat anymore, now I can't wait to go home and crawl up in bed and cry. Call the good doctor back and go see him for more shots. Plus a bonus of increased ringing in my right ear. We continue with this treatment threw out the fall and winter. By January 07 I am back to June of 06, so I stop treating.
March of 07 the ringing is getting really bad and my eye pressure has increased, motor skills are declining as with my memory. Call my PCP and ask if I should have another MRI? He says no, lets send you to an ENT specialist. Well that was a waste. All the test they did where all NORMAL. So I just try and fumble threw things. Work is stressful and I am not sleeping well, my Hubby is frustrated because I am not well or happy. I now am bringing my bed to work with me, pillows and blankets are always handy in my car for a nap during my work day.
June of 07 hubby and I go away for a nice week vacation in the White Mountains. We gear up for some stream fishing and mountain drives. It was really good to get away. After we are there for a couple days I feel like I have the worst flu every. Can not get rid of this head ache and my body hurts so bad. Took a drive UP Mt. Washington and it happened again! That explosion pressure in my head. Was it from the altitude? Was it the high winds? The cold? I did not do anything but walk around. So for a couple days I took it easy, had to cause I could hardly breath or think.
It's now July of 07. By the way I am a Commercial Sales Manager at a Ford Truck Dealership! This is coming into my prime time for selling. I do! Sold a nice plow truck but the blade is in storage.....at this point no one has told me not to lift or do anything........ so far everything is "Incidental"! That was the last sale for 6 weeks for me! I installed the plow and was layed up in bed! So much pressure in my head I wanted to die!
I get a referral to an Neuro Eye Dr @ New England Eye. My eye looks that bad. I bring all my stuff and he told me, your eye sight is fine but we believe this is really related to having CM and YOU NEED to see a Neurosurgeon. Sends me back to my Neurologist for further work up and a referral.
My NL again was wonderful, agreed that we need to pursue this since everything else has not worked. Told me I needed to have a Flow Study done. He referred me to a different hospital and told me under NO circumstances do I have anyone but this NS touch my head for this!
So I wait for my appointment at home. I have never been in so much pain in all my life, I can hardly lift my head off the pillow. Finally, it's here! I go and bring all my stuff and he is very patient with me and the exam is LONG. He does not believe the CM is my current problem! He feels that I have Chronic Pain Syndrome due to Whiplash. He does do the flow study, which comes back "with in the guidelines". Oh am I just let down! His recommendation was for me to start an anti-depressant, heavy exercise program and yoga. I was angry at first with this Top Notch NS, but I agreed to try.
I call my PCP for an appointment to start the drugs. With in a couple months they seem to be working. At least I am not all freaked out, so maybe he has something here. I am able to work most days. I inform people I work with of my struggles and they seem OK with it, me disappearing for a little rest.
The holidays! I go out shopping on my own. Heavy packages! I hurt myself again! I am in the parking lot sitting in my car, crying uncontrollable because I am now having tremors that will not stop. I can not hold the steering wheel and the whole world seems like it is spinning. After about 1 hour it stops to the point I can drive home. Pushing threw is what I have to do!
January 08, I land in the ER. So weak and unable to walk correctly, can not think straight and I hurt all over. They offer me drugs........not what I am here for, NO. They do a CT of my head. shows CM of 7mm. Refers me to Neuro Clinic, call your PCP for a referral. I do and his nurse tells me.......we know all about your CM and we don't think you need to be seem by any further Neuro's. It's just Chronic Pain Syndrome! So I refer myself, call them and tell them what my PCP's office said and they booked me right in.
This is the month I joined a wonderful support via the Internet. WWW.ASAP.ORG, best thing I have done for myself. I started to research Chiari and related neuro disorders. I pledged to myself this is the year I get this problem under control.
I get assigned a nice Resident. He seems good and concerned about my health. So we take my list and start to get things tested. Sleep...........I have central apnea. Head pain..........does so many different MRI's and gets me going on a Non narcotic med to help with swelling. This helps, so we are moving in the right direction. He orders me to restrict my activities and weight carrying to under 20lbs, cut down on my hours as much as I can. Gives me a great book to read about Head Aches, which I should have been a little suspicious about. I have been told I am "Migrainus" and I hate that term...... I am not! I read it and learn a lot about head aches and food, environment so not a total waste.
June 08, my right leg is now burning and so is my right arm. Like someone punched me and it throbs. I am very dizzy when I get up, nearly passing out. Can not keep warm. They order an Autonomic Test. I failed! They tilted me and passed out! Did the muscle biopsy and failed.... Small fiber neuropathy. Anything else you all want to give me! The Asst. Professor of the Dept did the testing, he was concerned about the Chiari! First Dr in a long time to be concerned about this. He told me I really need to have a different kind of MRI. Because my symptoms mainly occur when I am Up Right. He was not sure where they even had them or if I may have to travel. Oh I knew where it was and told him so.........in CT. So off I go to wait for an appointment there. Mean time he puts me on medication to raise my dangerously low blood pressure, side effects......pressure increase in the head!
My Resident NL calls me and is not very excited with the idea of an Up Right MRI. Why? Because there are NO case studies yet done with Chiari to compare to. So What! Lets be the first! He refuses to order my entire spine and only will do my brain and upper C. He warns that they are not looking to see if my herniation goes down further, they are only looking to see if I have any kinking. That there is no guidelines for comparing a MRI with a patient having CM. Ya ya ya I get it Doc., your nervous!
Now I call the Neurosurgeon back and update him. Blood pressure, small fiber damage, worsting head pain and pressure. I ask his opinion of the MRI and he is VERY pleased I am having it done. He is very concerned about the BP. Asked me to email when I have the hard copy CD and he will take a look, told me I don't want their report, I want the images.
August 15, 2008. I have my MRI @ Yale Medical in New Haven, CT. Bring all my old ones for comparing. I asked how many patients per year do you scan here for Chiari? Oh 2-3! What! This sends a real red flag up for me! Do they even know what they are looking for? I tell myself don't freak out, just get your CD and go back to Boston!
Of course the call comes in Monday from the good resident and he tells me everything is normal and fine by there report. I asked did you SEE the scan? No! Are you sure then it's OK? Well they tell me it is! NO, I tell him, I have a copy and I will bring it in for you to see.
September 08, I bring it in. He pops up a few generic slides, ones that even I know how to read and says yup it looks fine! Calls in his Attending and she agrees it looks fine. Both look at me and tell me they have discussed my case and want me to join a 6 week pain management clinic, to learn how to manage my daily activities, get Botox injections and if I could just take a year off from work. WOW, where did all this come from? I leave twisted! Not real happy! Good thing I still have one last chance with the Neurosurgeon in Boston.
Oh by the way, I never told the Good Resident that I had a second opinion appointment set up with a NS in Boston.
I go and see the wonderful Dr. Heilman @ Tufts Medical Center in Boston. Traffic is so backed up I am 2 hours late and he waits for me! Nothing was rushed even thou he was to board a plane. When he put up on the computer my CD he went right for the area that should have been looked at by others before him. The herniation had plugged me down to C1. I was Blocked! He turned to me and said, "here is your problem, you see right here, there is no fluid flowing". Both of us nearly cried, I mean the Dr and I! The look on his face I am sure matched mine, relief and validation. So I agreed whole heartily to decompression surgery. He asked if he could keep the CD......YES teach with it PLEASE!
I called the Resident to inform him that Dr. Heilman may be calling for records so please assist him. He was MAD! MAD at me! Yelled that he could not have missed anything. Why would I want to chance having surgery when I only have migraines? This whole conversation took me by surprise, was not excepting this! Why would I want to have a bump at the back of my head. If indeed I have increased pressure then why don't I do a spinal tap to check? Told me he would get back with me in a day or so. He did alright, to badger me some more. plus to inform me that THEY wanted a second opinion done at a different hospital. I am thinking your crazy! I have been suffering for so long and now you are telling me to go somewhere else? NO! I asked him: "How many patients do you treat that YOU have had decompression surgery done?", he has had ZERO! Why did I not ask this from the beginning? Should have known when he gave me the book to read some months ago, remember?
After my husband meet with Dr. Heilman 2 weeks later, we decided as a team and family this was needed. All questions were answered and the surgery was properly explained, with recovery and success rates. We all agreed it was needed and I was mentally and physically ready. October 7, 2008!
Monday, October 13, 2008
A few KEY definitions
So today I start my continued journey in the wild world of Arnold Chiari Malformation Type 1 or ACM / CM. I will begin with stating I am not a doctor but have no doubt read more then most of the doctors I have wasted co pays on over the past 35 months. I still do not have the Medical Certificate hanging on my wall, so bare in mind these are MY opinions with some facts / definitions.
Incidental:
Incidental:
4 dictionary results for: incidental
Dictionary.com Unabridged (v 1.1) - Cite This Source - Share This in·ci·den·tal –adjective
–noun
| 1. | happening or likely to happen in an unplanned or subordinate conjunction with something else. |
| 2. | incurred casually and in addition to the regular or main amount: incidental expenses. |
| 3. | likely to happen or naturally appertaining (usually fol. by to). |
| 4. | something incidental, as a circumstance. |
| 5. | incidentals, minor expenses. |
[Origin: 1610–20; incident + -al1]
How many of us have heard/read the words "Incidental Findings" after we have had CT / MRI's done? These are not incidental, we came for medical explanation and help to a problem..... finding something is what we are looking for! Stop dismissing the signs and symptoms that can be seen on scans, PLEASE!
Borderline:
]How many of us have heard/read the words "Incidental Findings" after we have had CT / MRI's done? These are not incidental, we came for medical explanation and help to a problem..... finding something is what we are looking for! Stop dismissing the signs and symptoms that can be seen on scans, PLEASE!
Borderline:
3 dictionary results for: borderline
Dictionary.com Unabridged (v 1.1) - Cite This Source - Share This bor·der·line –adjective
–noun
| 1. | on or near a border or boundary. |
| 2. | uncertain; indeterminate; debatable: not an alcoholic, but a borderline case. |
| 3. | not quite meeting accepted, expected, or average standards. |
| 4. | approaching bad taste or obscenity: He made several borderline remarks that offended them. |
| 5. | a person suffering from borderline personality. |
[Origin: 1865–70; border + line1]
This may be another term you may hear a lot. I do not believe that any CM is Borderline. It is either there or not. Herniated or not. Either yes or no in black and white.... No 2 brains will every be the same. This is fact. Do we have Borderline Cancer......NO. Do we ever have Borderline Strokes........NO. Why is it so different when we speak about Brain issues? Most everything can be labeled borderline........depression, migraines, ADD, insomnia, loss of memory. In fact these borderline symptoms are connected to CM. Giving further reason to deem the "Incidental Finding" as CM.
By now if you are HERE , you may have been told by your PCP, ER Dr. or NL that there was an Incidental Finding of Borderline CM. However "we" "I" feel you are suffering from Migraines and stress, soft tissue injury (whiplash), depression or yet the ever famous Chronic Pain Syndrome.....that's a biggy for some doctors! STOP them right there!!!! No I mean STOP them from speaking another word......... Ask this question?: How many patients have you succesfully treated with Incidental Findings of Borderline CM? You need to get a number of patients in YEARS, if they can not give you a quick firm responce, politely let the doctor know you are going to do a little research on this matter and you would like to get a referral to a specialist. Before you leave ask for a copy of the scans, I mean the hard copy's. You will need these. Never leave your films with anyone.
]This may be another term you may hear a lot. I do not believe that any CM is Borderline. It is either there or not. Herniated or not. Either yes or no in black and white.... No 2 brains will every be the same. This is fact. Do we have Borderline Cancer......NO. Do we ever have Borderline Strokes........NO. Why is it so different when we speak about Brain issues? Most everything can be labeled borderline........depression, migraines, ADD, insomnia, loss of memory. In fact these borderline symptoms are connected to CM. Giving further reason to deem the "Incidental Finding" as CM.
By now if you are HERE , you may have been told by your PCP, ER Dr. or NL that there was an Incidental Finding of Borderline CM. However "we" "I" feel you are suffering from Migraines and stress, soft tissue injury (whiplash), depression or yet the ever famous Chronic Pain Syndrome.....that's a biggy for some doctors! STOP them right there!!!! No I mean STOP them from speaking another word......... Ask this question?: How many patients have you succesfully treated with Incidental Findings of Borderline CM? You need to get a number of patients in YEARS, if they can not give you a quick firm responce, politely let the doctor know you are going to do a little research on this matter and you would like to get a referral to a specialist. Before you leave ask for a copy of the scans, I mean the hard copy's. You will need these. Never leave your films with anyone.
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