One Tough Cookie

January 2010 and goals are set

2010-01-05T20:29:00.002-05:00

I have booked my T Time @ my favorite course. Just leave it to me to book the wrong side though.....My date is May 9th, Mothers Day with my 2 sons and hubby! So to prepare I have joined Planet Fitness and today was my first real workout EVER.

Did 30 minutes on the tread mill, 20 minutes on the bike and 10 minutes with stretching machines. Working the core body parts. Plan is to go 4 days per week. Not looking to get skinny or build muscle, I want to enhance my ability to function 7 days per week with less down time...less time in bed. I am sure my heart is way out of shape. I may fail, who knows. I will never know IF I don't try and then I can say I put a 110% effort into it!

So I guess that would be goal # 2.....endurance, # 1 golf a good game.

As far as my mental therapy, this is going well. I have poured myself into my kitchen, creating things....making homemade breads, butter.....different meals. This is helping me with my concentration, reading ingredients and remembering. Taking the time to finish with out being frustrated because I have to read and re-read before it sticks. I have had to read out load to make it work.

I go to Dr doubeni Friday.....while he was on vacation I had to call in about my sinuses, wow they were getting bad or at least my hunch told me that is what was going on with pressure. Got 10 days of antibiotics, also went to my eye Dr to make sure my eyes were OK. He agreed it's in the sinuses. I do however have severe dry eyes and the drops help with the burning. I was pressure free for about 5 days on the med's.....gonna make this # 3 of the New Year to get this under control.

I don't plan on over loading myself with goals.....way to hard to complete everything all in 1 year. I did good last year, have come a long long way. I have dates set for events and places to go.....So I am gonna hold off on making any further goals till the end of February, see how I am doing. Set a date to re look at my date book, see how much I can push myself safely.

Last year or maybe it was even 2008, I had sent a letter to all my family including In Laws. A request to get close again, say my I'm sorrys and ask for forgiveness for NOT being part of anything for 3 years. It has improved my relationships with nearly everyone! Sad that it never took hold with my only sibling, my younger brother...

This was my last difficult Christmas with my feelings and emotions about my brother. I have now finally after so so many years finally closing that chapter. For it is not I that has wronged nor is it I who won't make time or even want time. My brother is prejudice and judgemental towards me and my family. For reasons that are so ignorant....money, my address, my failures. It has taken me many years to fully know just why he has looked down on my life, I prayed to know why.....I found out and it is bitter sweet knowing the truth when you want to know the truth no matter what it is. Don't ever wish or seek to know truths unless you are fully prepared.

The wonderful thing is I forgive him. By forgiving it doesn't mean I have to forget and I am sure in time I will forget. In seeking the truth it has made my relationship closer with my Mother. For she knows....casts no judgement on me. So I guess you could say this would be # 4, inner peace about my life:

The valleys I have looked up from, climbed from. The mountain tops I have reached and looked down from. All the things I have tried, the lessons I have learned from adventures not gone as dreamed. Yes peace for getting out of bed everyday and making an effort how ever right or wrong it may have been or will be....to keep trying. Peace is a powerful word and a powerful thing to posses. I will hold onto this inner peace as my # 4 goal till it becomes so natural I no longer have to have it as a goal.

Closing out 2009!!!! Thankful

2009-12-15T07:48:00.002-05:00

I had my follow up with Dr Mullins (NL) whom was the original NL that sent me to Dr Heilman. I was so hoping to get some steroids to help me get more done. Oh no he tells me, I push the window enough! so I went back on Neurontine and Clonazapam for neck spasms. He of course was correct.....these 2 make a world of difference! The stabbing pains from Occipital Neuralgia have gone way down, makes me a little sleepy at times but really that's not a bad thing!

I am still struggling with the pressure behind my right eye and fluid feeling in my right ear. Honestly if I look over all my MRI / CT reports....each one states "Chronic thickening to the Sphenoid sinus". I am going to talk at some great length with my PCP during my appointment in January about this. Give me something.......figure it out! Help dry up and clean out my sinuses, lets just see if this is it! I will also ask my eye Dr this Friday if he can take a deep look into that eye and see if there is any signs of my sinuses in trouble! Gonna bring him the scans and reports. Enough is enough! The ENT I have had since 2006 SUCKS and I have refused to go back.....he is OLD and way to outdated for me!

In 2010 I don't want so many specialists, Endo, GI, ENT, NL, PCP and NS. Spoke with my PCP and he has agreed to monitor everything with the exception of NL & NS. If he feels I really need to go I will but ONLY after he has consulted with them via blackberry, email and or phone first! At this point it is mostly blood work and annual Endoscopy for Barrett's.

I hope I have done a good job with being Gluten Free, I go the 18th for new Celiac panel. Not sure if it's the right choice but I have stopped taking my Thyroid and Vitamin D for about a month now.....ya I feel it!! :( However I do not see the sense in having these things rechecked every 3 months because of the Celiac. I did discuss this with my PCP, he wasn't over joyed but understood the concept, get a true baseline since I am Gluten Free! I will be glad to restart taking the Thyroid meds....arghhh.

It was my goal in 2009 to start up a support group here in Ma. Well I have not gotten it off the ground other then support to all whom need it via calls, emails and even follow up with Dr Heilmans office. Perhaps it will happen in 2010. I am happy with the ground work I have gotten done, the wonderful people I have connected with so far. When I spoke to Joyce, Dr Heilmans NP yesterday, they are pleased about all the referrals and I am so grateful when a new patient calls.....tells them I referred then, there is not a 30 day wait! When the actual support group starts, I hope to have the help of his office with education.....

I seem to have settled into a good routine, walk 2 days per week, split up the weekly errands between 2 days as to NOT get over fatigued from driving and spend the other 3 days for caring for the house. Daily rest for about 2 hours really helps in recharging, keeping my head and neck from seizing. So far it is working well for I am able to do all the things I want and need to do! It's when I step outside this schedule and over promise, over do that I am laid up for a day or two! It truly is in the planning, rethinking how to tackle stuff that has been of the most benefit to my health, oh ya and learning the LIMITS! That took the longest and has been the most painful part of this journey.

2010, what will it hold? My son is getting married next Fall! I hold to continuing ground work to create a support group. More improvements to my house. I will golf a good 18 holes, tried it once this year and it was to early.....a little travel with my husband!

It's been to long

2009-09-29T20:41:00.002-04:00

So I have been trying just to put most medical stuff away. Move forward. Test came back positive for Celiac and Barrett's. Have been Gluten Free since May. Really this has been not hard for me at all, just something I gotta do, so I do it.

I waited patiently for the 6 months till I started doing more around the house....paint, decorate, gardening, fishing and golf. Now it's almost 1 year since PFD and I don't think I over do things BUT I must be.

I am scared. Doing daily chores are getting hard. Driving is difficult. Up and down stairs pound in my ear and eye. This past Friday set off a host of old feelings in my head. Thankfully I am sleeping good so I do get recharged.

Saturday night I had one of those Chiari HA's from hell. My eye sight went all hay wire, couldn't make out the remote clearly. It is alot of pressure only on the right side. My eyes zigging back and forth.

I go for my 1 year follow up on Oct 5th. So this should be a good appointment, I hope.

It's not 100% like it was before. Not at all. It's very weird, like I felt so much better right after and for the first 6 months. I think I want steroids again. Might be because I am more active it gets swelled up, don't know but I am gonna ask.

I can't hide from this.........it's here to stay. I have lived in a fantasy world thinking oh ya, it's all good. It is so much better but not good right now.

I do pace myself every day. I still need a 1 hour lay down nap everyday. I plan out projects. I can't do nothing, for my personal spirit I have to do things. I have let go the wants of BIG projects. Shit........................

It's hard to tell many people. I really don't say much about it. Hubby knows when I have a bad day and he insists I rest! Love him for that. I keep thinking positive, the glass is always half full to me. I was in a dark place once and I aint going back.....

BUT, I can't keep my fears bottled up either. So here I am poring it out. don't even know if anyone reads, don't really care. My safe place to say, I am scared..

I have so much to be thankful for. Great husband, wonderful kids, excellent medical care...truly the best doctors. I love my new home. Funny animals. Just the most supportive Mom and Dad. I am thankful so why am I scared???

43 and have a difficult time driving, shopping alone, my spelling is going back down hill. I have never thought of myself as loosing Independence, being married for almost 27 years....the old fashion views I carry. I am not in dependant. Sounds corny.....Dave is my partner in all things so I don't have fears of this. Now if I ever needed help peeing.........that's another story!!

I am scared my brain isn't gonna cooperate with me. The heart and brain are NOT on the same page. One say do this the others says are you crazy. So I am struggling, I want to be fit and in the best physical health I can be. Not a jacked person, just able to handle stairs, hills stuff like that. it's the right thing be in shape. Well my brain says you take one more stair and I am gonna pop your eye out and burst your ear drum......so I ignore. Look at me now!

In a wait mode right now

2009-04-21T08:30:00.002-04:00

I had the biopsy done. It went easy with no complications. Takes 10 days for the pathology report.

What I do not understand is why I have to wait on all the lab/biopsy stuff before the GI treats for B12 deficiency, does it really matter if it is PA or Celiac. The chronic fatigue and pain in my bones is really holding me back. I am spending more time in bed then not. I felt better right after brain surgery then I do now...

I take Liz to the Endo tomorrow so maybe I can get her to look up the labs and see whats in.

She seems to be improving. The learning can be a slow and difficult process. Her medication I think we have under control, what works and what doesn't. I took 10 inches off her hair and this seems to help with sleeping. The B12 shots have improved her body pain, some of her nerve pain and definitely her ability to sleep normal hours.

My scalp is healing. Less areas of numbness which I am very thankful of. I still remain head ache free and blood pressure is constantly stable. I can not believe it has been 6 months since surgery! Everyday I am more and more convinced surgery was what I needed and that it worked. Dr Heilman said 6 months to really see.....he was correct!

The house is full of sweet little baby cry's. We had a litter of kittens. Momma had 3 babies and what joys they bring. Our puppy is growing so fast. Seems like I am back to the days of toys for the kids. Only they are all chewed up and hidden everywhere. What I love is the afternoon puppy nap! My excuse to nestle with him and nap!

Ups and Downs

2009-03-29T12:34:00.002-04:00

It's been a challenging 19 days since I was last here. A lot going on with both my daughter and I.

My newest lab results for Vitamin D have come up to 41. This means I am no longer deficient. My new Thyroid level is in the normal range with my new dose as well. I did test positive for Celiac Disease and am waiting for an appointment for having a biopsy done.

At first when I got MY news I was numb then pissed then depressed. This pasted as I received much support from friends at ASAP and my family. Now I have to learn a new way of eating. It's better then having to deal with NL's and Chiari! So I will survive and hopefully be healthier.

Follow up appointment with daughter with her NL was good and bad. The good is he supported us seeing a NS for a second opinion at Tufts. The bad is he believes her Trigeminal is a symptom not the cause. He has set up an Autonomic Test and EMG. We go this Wednesday the 1st of April. She is also to have another set of MRI's in 3 months for a spot they found.

We did go to Tufts, the NS was very pleasant and helpful. He told Liz that he feels TN is a symptom not the cause. Hearing this from 2 separate Dr's leads us to believe it true. He was very detailed in viewing her MRI study. He did suggest she has Chiari 0, of which I had thought as well. Recommended her to have further studying done to determine where her pain is coming from. Also pointed out a small spot on the left side of her brain that needs further examining.

It gives me some comfort that 2 separate hospitals gave pretty much the same diagnosis.

We have seen much improvement with Liz, taking the anxiety/depression medication. She is much more relaxed and doesn't have uncontrollable crying. It will make getting a proper Dx that much quicker I think, because she is calmer.

It has been a lot to take in. Just when I think I am ready to handle more....I have had a few brake downs where I just cry. Seems like getting healthy is with in reach, then it gets snagged back a few yards. I wished I enjoyed drinking some nights! Don't want a hang over.

I just gotta keep my faith and steadily move forward. Some days are harder then others but the sun keeps shining which is a good sign!

Spring is in the air

2009-03-10T08:43:00.002-04:00

I am recovering very well. Still having trouble with the Vitamin D, haven't gotten my level into the normal range. My Endo doubled the dose and I am retesting in a few weeks.

The CM seems to be very much under control. Each week I am able to do more activities, carry more weight. My driving is back to where it was way before all this started, no more panic attacks or near fender bumping in parking lots!

My daughter has had her MRI, has been dx with TN. The medication is really effecting her in a negative way, she sleeps most of the day. It has not controlled the pain even going to max doses. I have her an appointment at Tufts with Dr Yao, he is the assistant professor to Dr Heilman. We go the 24th of this month. We are hoping she is a candidate to have Micro Vascular Decompression, by her MRI the V, VII and VIIIth nerves are involved.

My wonderful son in law brought home a puppy....his name is Reese. He is a lab/pitbull mix. What a handful he is. Loves to run and play. He keeps me going all day long. With the weather getting warmer we have started walking. He is very good on the leash and I so enjoy walking again, so I have made HIM part of my rehab! My little motivator!

The new PCP seems to be working out well. He has been very helpful so far. He very much cares about Liz and helping her with her many struggles that she has had to endure. FIRST Dr to tell her that most of her problems are due to the last surgery. Put her on Zoloft and this is helping.

While I was surfing the net last night, I found that this August in Boston there is going to be a huge convention of NS from around the world. One of the work shops is about CM. I am going to write to the Dr in charge of this workshop and request they spend some time covering HOW we are treated....I got plenty to write down. I would like to find out HOW I could get an invite and sit in on that workshop.....guess I got some work to do there.

I hope all my fellow CMer's are getting ready for spring! It has been a very long hard winter!

Fears and challenges

2009-02-03T17:24:00.000-05:00

I can not remember when it started. It seems to have been for sometime. She has always been achy in the neck, daily head aches, trouble sleeping. When we lost power in December I think is when it really started to show.

I am speaking about my youngest, Liz. She is 22. We have made several trips to the ER since Dec 26th. Now we go to a NL this week. We are not sure what is going on, her CT shows Cerebellum hanging like all of us CMers. We won't jump to a conclusion till she gets a full set of MRI's. Her face on the left side is very painful with shocks then numbness. Worries me she could have Trigeminal Neuralgia.

The only thing to come of ER trips is the Dr saying get her to a NL asap, we can not properly care for her.

She has had her first appointment with a NL of my choice. So glad he was taking new patients. He has ordered MRI's to check for CM however, he did make a Dx of TN... She is now just 1 week on taking medication and her daily pain has dropped but not gone. Even just the cold air flares up her face.

It is a whole different set of worries when it's one of our children. I have started her on the right path of getting the proper help.....I hope! The NL did a whole set of blood work including Vitamin D, Vitamin B12 and her Thyroid. I should be able to get these results today. Started gathering all her records for a file. We will take it one day at a time!

Now I have to come to terms with my biggest fears, that she too has CM and the challenge of caring for her! I am putting my faith in God to help us all through this. Faith he will give me the strength to support and care for her while continuing my own recovery.

A new year.......Working on my goals

2009-01-14T07:36:00.002-05:00

Well I started out the New Year with a list of things I want to change....mostly a new family doctor. Which by the way is no easy task. For the medical field is all about BUSINESS.....and patient comes in second! So sad.

I had my 3 month check up with the wonderful Dr Heilman. I am healing wonderful and remain Head Ache free. I do have lingering nerve pain in my scalp on the right side. So I have decided to go back on Gabapentin in a low dose. Ya this has helped where as before surgery it only increased pressure in my head, weird but I like the relief from the feeling my hair is being pulled out one strand at a time. Dr. Heilman requested me to stick with Dr. Mullins @ St Vincents as my NL. Not to use Umass. This is because he has a working relationship with Dr. Mullins and they can communicate about my progress. I am OK with this! I go for a check up on the 28th. He also supports a new PCP.

I did finally find a new PCP, went for an interview and really liked him. He wants to help me find the cause for so many Autoimmune issues and the now solid Lymph Node by my ear. Yesterday I made the switch....with my insurance.....have my first real appointment with the new dr for the 15th of January. I would like to get these things done by spring so I can get to gardening! The part I am worried about is transferring medical records, for this is up to me...I don't want to call but I guess I will have to.

It can at times feel like a full time job just to keep your health in order when you have disorders and or diseases. I really don't think it's suppose to be this way. This is what I am hoping a new PCP will address.......just tell me what I have and fix it! I want my energy back! I don't want to look 42 but feel 72.

My oldest son is going to his new dr today.....He called to tell me that he was having his Thyroid and Vitamin D checked for me! Really it's for HIM....But I am glad he is doing this. My mother also went and had her blood work done for the B and D. Her bone scan came back with Osteopenia which is pre Osteoporosis......I will bet her D level is low too.

So my mind wants to know if.......medical research has proven that more then 75% of all people in Ma could be Vitamin D deficient and that in New England we have high counts of Lyme Deer Ticks.........WHY on earth are these not just tested for when we go for an annual check up! I mean really! Would they much rather us on anti-depressants? I can almost understand not testing for Lymes but the D I can not.

Seems like the medical field has lost touch with US. It's "can I have your insurance card please". I wished they would just look at us and our charts and treat....I mean TREAT us as if we were their patient, not just a few letters and then a few numbers on a manila folder that gets shoved into an over stuffed wall of other numbers and letters..... Wouldn't it be a surprise if they asked how is your family!!

My goals for the first quarter of 2009: Start a Chiari Support group in Ma., sharing experiences with others locally. Spread Vitamin D awareness and have my whole family tested. Start a new relationship that is effective for my husband and I with a new family doctor.

It's been awhile......

2008-12-31T09:43:00.002-05:00

I hope all who read or follows are doing well! I have been battling fatigue and bone pain.......why??

Another area that our medical field needs education! Vitamin D!! With feeling so fatigued my mother insisted I have my Vitamin D level checked. I never even knew we had a blood test for this or that it needed to be monitored.

I am very deficient, now taking 50,000U per week for 8 weeks. I have been on the dosage for 4 weeks and am now noticing that the severe bone aching is nearly gone! Still very angry that I had to ask for the test!

I am trying to read everything I can about Vitamin D and my goodness........it answers so many questions about the chronic fatigue, deep muscle and bone aches! But it does not answer WHY. Why do our doctors not test this more?

In finding this out, on my own! I have had to do another search. For a new PCP! Why? Because his office missed........my Thyroid, Lymes and now D Deficiency. WHY? I have been with him since 1995 and I feel my investment into his practice cost me years of my own health.

January 1, 2008 I promised myself that by September 2008 I would have my CM addressed....missed by a few weeks but I got there! Now for 2009! I will find the right PCP that will care for me and my family.

I am waiting for a new PCP before I further investigate what if any damage has been caused by being Vitamin D Deficient. I will have a bone density test done.

When I got my lab results I called my Endocrinologist, she wants me in HER office for the follow up blood work, informed me with my levels being that low I should be taking the 50,000U weekly for life! I trust her! She will monitor this.

My other promise for 2009 is to make sure my whole family gets tested. Tested for all 3....Lymes, Thyroid and D.

My advice is for anyone with nerve pain.....get your Vitamin/Mineral levels checked.

Federal Chiari Awareness

2008-11-21T05:08:00.002-05:00

This is so important to all of us that have Chiari Malformation. A Bill has been submitted by a Congressman in Pa. to designate every September as Chiari Awareness Month. The vote is in January.

There needs to be 100 Co Sponsor's to the Bill.....So we need YOU to call your Congressman and ask that he/she support House Res. 1422.

If this passes it will put us out in front! Doctors will have no choice but to treat those suffering with better care and STOP telling us that it is all in our heads!! I am hoping that it will get the disease more programs of genetic testing, a uniform standard of testing and most important the young doctors being taught this in medical school.

To read this Bill, I have created a quick link under Awareness.....House Res 1422. To help spread this to friends and family, go to www.thomas.gov search House Res 1422.

It is my hopes to soon see Purple magnet Ribbons on the back of vehicles all across America! Please help in supporting all of us that have Chiari, there are more of us out there then we all think are........

5 week post op appointment with Dr Heilman

2008-11-15T05:02:00.002-05:00

I went to see my wonderful surgeon in Boston. He is as I am very happy about all the symptoms that have gone....however he does caution that its not set in stone and I still need to wait wait wait... I love him! He told me I could come down every day and tell him how good I feel!

During the exam I asked him to check a lump on my neck. Swollen Lymph Nodes! Now I have several that are swollen. I had a nasty cold about 2 weeks ago, plus the steroids lowered my immune system. He told me it could be a couple more weeks of this. I have no fever but do get tired easy....so I rest and take extra Vit. C and Echinacea. Oh the chills and night sweats that I have had for a week have been horrible. Thought I was going threw menopause. He told me NO...just my body working overtime on healing my head and brain.

I would have thought that after 5 weeks recovery and doing so well he would have told me I could return to normal house duties or go back to work. NO NO NO.....he has ordered 6 more weeks. Still no lifting, bending over, shopping by myself. I can wash dishes, make my bed and drive around town. Weird he asked about my trunk in my car, or rather he made mention NOT TO USE IT! Again can I say how I love the care he gives!, details like that may have slipped past others.

I told him I was taking NO medications that he sent me home with.....no more muscle relaxers, no Tylenol, plus I am over 1 week off the Florinef for low blood pressure. He was very glad about this. Wants me to go back to the NL that did my tilt test and have it done again to make sure about the blood pressure. This will be good for future studies as well! So I will. I am also over 2 weeks now for NO sleeping medication, I will ask same NL about the Apnea ending as well!

The burning pins and needles has return in my right leg, not the foot or arm, just the leg where my tissue biopsy was done. Not constant and not as bad as it was before surgery. He told me this is why I should not count on anything till the body fully heals.

My scalp is very very slowly getting normal feeling back on the right side. It is working from the bottom upwards. He also told me that because this was the really damaged side it may take a long time to totally, if ever resolve. I am OK with it. I did go to the hairdresser, had to have my hair length fixed....was really shaved uneven. That hurt the scalp a bit, I did go with fresh washed hair as to not put my head in the sink........I will NEVER do that EVER again, been there done that. No one with CM should EVER do that!

My brain has been getting stronger everyday. Memory, planning, directions have all been improving! I now feel OK to deal with finances. Have not messed up the household money....this is a real big improvement, I have for over 20 years handled paying all creditors. So when ever I messed up the banking hubby knew something was wrong last summer. Mind you it's not that much money however, I do manage it as to not go negative.

My appetite has returned finally to 100% normal. I am not eating all the time, back to 3 meals a day. I have cut way way back on caffeine, amazing how before surgery I NEEDED caffeine to get me threw the day, now if I have to much my heart races and I feel jittery! Again Dr Heilman said that was a very good sign surgery has worked!

So now I can start to plan for the holidays. With my wonderful daughter who has given up her schooling to help me.....we will plan together! 20 people for Thanksgiving which is right around the corner and then Christmas with all the sewing and decorating! I am truly blessed and so excited about this holiday season! Even with less money I know it will be the best ever!!!

3 weeks Post Op.....Feeling wonderful

2008-10-28T06:51:00.002-04:00

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.

Oh Surgeon was correct

2008-10-26T03:59:00.002-04:00

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.

Family

2008-10-25T08:24:00.002-04:00

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.

Sense of peace

2008-10-22T06:02:00.002-04:00

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.

Learned a lesson today

2008-10-19T21:26:00.002-04:00

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!

I can read again

2008-10-18T19:21:00.003-04:00

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!

Thinking

2008-10-16T18:57:00.002-04:00

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.

Day of surgery......my new Birthday!

2008-10-15T10:24:00.002-04:00

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!

When it all changed in my life.....

2008-10-14T22:17:00.003-04:00

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!

A few KEY definitions

2008-10-13T04:33:00.005-04:00

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:

4 dictionary results for: incidental

Dictionary.com Unabridged (v 1.1) - Cite This Source - Share This in·ci·den·tal

–adjective

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).

–noun

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:

3 dictionary results for: borderline

Dictionary.com Unabridged (v 1.1) - Cite This Source - Share This bor·der·line

–adjective

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.

–noun

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.