So it is rapidly approaching the end of the year and my upadtes of this have been shockingly bad. I will try and get more organised.
So update time.
I have been approved for a posterior fossa decompression with duraplasty and a C1-C2 laminectomy. Now I'll let you know what that is lol. The posterior fossa is the part of the skull they are working on. They do the decompression by removing part of my skull. A Duraplasty is where they open the dura, which is the lining surrounding the brain, they put a patch of artificial material on to make a bigger space. A C1-C2 laminectomy is where they remove parts of the C1 and C2 vertebra.
I have been having seizures and for a while the surgery was put on hold. However I am going to an epilepsy clinic on the 12th January, so hope that will clear it up.
Going to try and get my MP onside to try and get my operation done quickly!
Merry christmas and happy new year!
x
This is a blog all about me. It started as a blog about my diagnoses and treatment of a rare condition called chiari malformation and my long recovery from the required brain surgery. It is now a blog about me, my life and things I enjoy! I accept products to review! Just use the contact me form on the right hand side. All reviews I do are my own opinions of the products
Sunday, 19 December 2010
Friday, 1 October 2010
Nothing to do with Chiari!
This post has nothing to do with Chiari, but I thought I would post it.
Been doing lots of thinking, in the nights when my pain keeps me up. Tonight is one such night, it is almost 6am and I am wide awake.
I have been thinking tonight about major events that have happened in my life. I realise that surgery is the next major thing that will take place, which is I guess what has made me think.
So first major event to happen in my life..
3rd February 2007.
This was a massive night in my life, that has really shaped my outlook on lots of things.
It was the night of Richard (my boyfriend) sisters 18th birthday party. It was held in a community centre in Totton. It was a nice night, lots of Richard's family but also some people I know there as well. My best friend at the times sister was there with her best friend who I knew pretty well.
It got later and I joined Kirst and jes outside whilst they had a cigarette. What happened next was the most unexpected series of events, something I never expected to happen.
A small fight broke out, followed by a group of people running just around the corner, we followed. This was more out of interest, and we were not planning on getting close. I walked round and kirst and jes followed behind. When I turned the corner there was a boy of 15 on the floor, unable to breath and bleeding from his chest. He had been stabbed straight through his heart and collapsed on the floor.
We all ran over right away and his friends chased off the attacker and others went to get help. I helped perform first aid and the others helped and one stood over the knife.
By the end of the night I was covered in blood and the boy was dead! The worst thing to see. I was only 18 myself and shocked was not the word for it. I spent the next 2 days being videoed and interviewed by police, having my clothing taken away and other things.
Court case came and went, the boy who had stabbed the young boy got away with murder, literally not enough evidence to prove it was not done in self defence, he got let free. AHHH!
Second major event was my step-dad passing 23rd March 2009. Another Worst day ever.
He had cancer and it was not possible to save him. I am not going to say much about this, it is not for sharing.
So third worst thing is brain surgery. So I have survived two super shit things and I am still here, still smiling and still fighting. So it has not made me sad thinking about what has happened in the past, it has made me realise that I can do it and I can be strong when I need to be. Bad things come in threes, right? So I should have a good run of luck now =D
And to quote one of my favourite musicians:
"Sometimes your circumstances suck, but life doesn't." Andrew McMahon
Been doing lots of thinking, in the nights when my pain keeps me up. Tonight is one such night, it is almost 6am and I am wide awake.
I have been thinking tonight about major events that have happened in my life. I realise that surgery is the next major thing that will take place, which is I guess what has made me think.
So first major event to happen in my life..
3rd February 2007.
This was a massive night in my life, that has really shaped my outlook on lots of things.
It was the night of Richard (my boyfriend) sisters 18th birthday party. It was held in a community centre in Totton. It was a nice night, lots of Richard's family but also some people I know there as well. My best friend at the times sister was there with her best friend who I knew pretty well.
It got later and I joined Kirst and jes outside whilst they had a cigarette. What happened next was the most unexpected series of events, something I never expected to happen.
A small fight broke out, followed by a group of people running just around the corner, we followed. This was more out of interest, and we were not planning on getting close. I walked round and kirst and jes followed behind. When I turned the corner there was a boy of 15 on the floor, unable to breath and bleeding from his chest. He had been stabbed straight through his heart and collapsed on the floor.
We all ran over right away and his friends chased off the attacker and others went to get help. I helped perform first aid and the others helped and one stood over the knife.
By the end of the night I was covered in blood and the boy was dead! The worst thing to see. I was only 18 myself and shocked was not the word for it. I spent the next 2 days being videoed and interviewed by police, having my clothing taken away and other things.
Court case came and went, the boy who had stabbed the young boy got away with murder, literally not enough evidence to prove it was not done in self defence, he got let free. AHHH!
Second major event was my step-dad passing 23rd March 2009. Another Worst day ever.
He had cancer and it was not possible to save him. I am not going to say much about this, it is not for sharing.
So third worst thing is brain surgery. So I have survived two super shit things and I am still here, still smiling and still fighting. So it has not made me sad thinking about what has happened in the past, it has made me realise that I can do it and I can be strong when I need to be. Bad things come in threes, right? So I should have a good run of luck now =D
And to quote one of my favourite musicians:
"Sometimes your circumstances suck, but life doesn't." Andrew McMahon
Thursday, 23 September 2010
hints and tips!
Some POSSIBLE non-surgical/ drug free methods to alleviate ACM symptoms- also useful for post-op patients and as life-style guidelines. Bernie Meyer, Editor (internautbhm2@comcast.net)
1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainers are recommended - New Balance, Nike, Reebok etc.- test before buying.
2. Avoid neck-stressing activities (football, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)
3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no"push" back. Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.
4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.
5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities - STAY LEAN
6. Sit in soft recliners with high backs and foot rests.
7. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.
8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.
*Wide vision rear vew mirrors remove the need to turn the head whilst reversing, they are available online or from most motoring stores*
9. Relax and avoid stress and noise. Don't tighten the neck muscles. Stay "cool".
10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.
11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.
12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don't wear them.
13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.
14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.
15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.
16. TENS machines may help CM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.
17. Avoid cervical traction.
18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.
19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.
20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM's. One member's herniation significantly increased after cervical adjustment. "That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)".
21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.
22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.
23. Methods to reduce neck stress during house cleaning/cooking are listed at http://www.pressenter.com/~wacma/pamshints.htm
1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainers are recommended - New Balance, Nike, Reebok etc.- test before buying.
2. Avoid neck-stressing activities (football, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)
3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no"push" back. Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.
4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.
5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities - STAY LEAN
6. Sit in soft recliners with high backs and foot rests.
7. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.
8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.
*Wide vision rear vew mirrors remove the need to turn the head whilst reversing, they are available online or from most motoring stores*
9. Relax and avoid stress and noise. Don't tighten the neck muscles. Stay "cool".
10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.
11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.
12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don't wear them.
13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.
14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.
15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.
16. TENS machines may help CM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.
17. Avoid cervical traction.
18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.
19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.
20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM's. One member's herniation significantly increased after cervical adjustment. "That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)".
21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.
22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.
23. Methods to reduce neck stress during house cleaning/cooking are listed at http://www.pressenter.com/~wacma/pamshints.htm
Monday, 6 September 2010
Positive Feelings!
POSITIVE AFFIRMATIONS TO SAY TO OURSELVES WHEN WE NEED TO BE ASSERTIVE:
- I am not a victim.
- I have no duty to be perfect.
- If I can't decide which of two choices to pick, perhaps my choice should be something else.
- I have a right to make up my own mind.
- I have a right to ignore the advice of others, even if I asked for that advice.
- Respecting other people's views does not mean I have to agree.
- My time is valuable, too.
- I deserve the time and space to heal.
- I am a very valuable person.
A LIST OF RIGHTS:
- You have a right to put yourself first.
- You have a right to make mistakes.
- You have a right to be the final judge of your feelings and to accept them as legitimate.
- You have a right to have your own opinions and convictions.
- You have a right to change your mind or decide on a different course of action.
- You have a right to protest unfair treatment or criticism.
- You have a right to interrupt people in order to ask for clarification.
- You have a right to negotiate for change.
- You have a right to ask for help or emotional support.
- You have a right to feel and express pain.
** Mentally I'm coping, emotionally I'm adjusting, and physically, well, two out of three ain't bad. **
- I am not a victim.
- I have no duty to be perfect.
- If I can't decide which of two choices to pick, perhaps my choice should be something else.
- I have a right to make up my own mind.
- I have a right to ignore the advice of others, even if I asked for that advice.
- Respecting other people's views does not mean I have to agree.
- My time is valuable, too.
- I deserve the time and space to heal.
- I am a very valuable person.
A LIST OF RIGHTS:
- You have a right to put yourself first.
- You have a right to make mistakes.
- You have a right to be the final judge of your feelings and to accept them as legitimate.
- You have a right to have your own opinions and convictions.
- You have a right to change your mind or decide on a different course of action.
- You have a right to protest unfair treatment or criticism.
- You have a right to interrupt people in order to ask for clarification.
- You have a right to negotiate for change.
- You have a right to ask for help or emotional support.
- You have a right to feel and express pain.
** Mentally I'm coping, emotionally I'm adjusting, and physically, well, two out of three ain't bad. **
Monday, 30 August 2010
The Chiarian’s Creed
I promise to accept the fact that I have Chiari
Malformation, a neurological disorder which will
limit my abilities in my everyday life.
While I will always have Chiari, some days will be
good and some days will be bad. I will be thankful
for the good days and try to make the most of them.
When I am having a bad day, I will try to remember
that most likely it will not last.
When I am having a bad day, I will listen to my body,
and get the rest that I need. I will let my family
know that I am not feeling well, because they cannot
read my mind.
I will not feel guilty about resting, because I will
eventually begin to feel better, and in the long run,
it will also benefit my family. They will not become
malnourished if they eat peanut butter
sandwiches for dinner.
I will not feel guilty or worry about the work that
is not getting done while I am resting. The world
will not all apart without me, even though it looks
like it already has.
I will not let anyone else make me feel guilty for
taking time out for myself. They will never understand
exactly what I am experiencing, the pain that I feel,
the exhaustion that I feel. They will never understand
the fear that I feel when my symptoms creep up on me,
and land me flat on my back.
I promise not to feel sorry for myself when I am
feeling bad, because there are a lot of people out
there who are in worse shape than I am. I will not be
sorry for what I don’t have, but be thankful for what
I do have.
I promise to learn a lesson from my illness, which is
not to take life for granted. I will enjoy every moment
that was given to me, and be thankful for the times
that I can smile and laugh.
I will try to help others who also suffer from my
condition. There are many confused and frightened people
who need to hear comforting words from someone who has
been there. There are many people who need me to take
his or her hand and be pointed in the right direction.
Lastly, I will not ask, “Why me?” While Chiari has
weakened my physical body, it has strengthened my heart,
my soul, and my spirit.
Malformation, a neurological disorder which will
limit my abilities in my everyday life.
While I will always have Chiari, some days will be
good and some days will be bad. I will be thankful
for the good days and try to make the most of them.
When I am having a bad day, I will try to remember
that most likely it will not last.
When I am having a bad day, I will listen to my body,
and get the rest that I need. I will let my family
know that I am not feeling well, because they cannot
read my mind.
I will not feel guilty about resting, because I will
eventually begin to feel better, and in the long run,
it will also benefit my family. They will not become
malnourished if they eat peanut butter
sandwiches for dinner.
I will not feel guilty or worry about the work that
is not getting done while I am resting. The world
will not all apart without me, even though it looks
like it already has.
I will not let anyone else make me feel guilty for
taking time out for myself. They will never understand
exactly what I am experiencing, the pain that I feel,
the exhaustion that I feel. They will never understand
the fear that I feel when my symptoms creep up on me,
and land me flat on my back.
I promise not to feel sorry for myself when I am
feeling bad, because there are a lot of people out
there who are in worse shape than I am. I will not be
sorry for what I don’t have, but be thankful for what
I do have.
I promise to learn a lesson from my illness, which is
not to take life for granted. I will enjoy every moment
that was given to me, and be thankful for the times
that I can smile and laugh.
I will try to help others who also suffer from my
condition. There are many confused and frightened people
who need to hear comforting words from someone who has
been there. There are many people who need me to take
his or her hand and be pointed in the right direction.
Lastly, I will not ask, “Why me?” While Chiari has
weakened my physical body, it has strengthened my heart,
my soul, and my spirit.
Thursday, 26 August 2010
I promise I will try and update this more!
So its currently 2 am on 27th August. I have just received a very drunk phone call for my best friend, who is a little drunk asking me to come and rescue her. The only problem with that being that I am in Hythe and she is in Belfast lol.
So update on my Chiari. I have switch GP surgery's, on the advice of Claire's mum. She is now my GP and is setting the wheels in motion. She doesn't think I am making it up. She knows so much about my condition. I saw her for the first time about 3 weeks ago. She adjusted my medication, sent me for a blood test and wrote to my neurosurgeon asking for an earlier appointment. Had my blood test done 4 days after on a Friday morning and by the Monday morning I had a phone call informing me of the results. At my old surgery it was common to wait about 4 weeks and only get the results if you bugged them. The results showed I had slightly low potassium, so I just have to eat more bananas. I have also started to take a vitamin supplement, just to cover myself.
Went for another appointment on Tuesday, as we had not heard from neuro she sent them a fax again asking for a quicker appointment so fingers crossed!
However, the better news is that she has agreed I can go back to work on an adjustment plan. I basically can only work part time, can't be left alone with children in case I faint, no lifting, climbing or strenuous activity. I go into work during the week of the 6th September to get this sorted, I hope they can accommodate me.
I also had an appointment with the eye specialist. My eye sight has changed again (in a month) and so has my squint. I have been given a temporary lense in my glasses and this has got rid of my double vision totally !!!
Today I have had the worst day in a long time. I have had a really bad headache, I still can't shift it so I am still wide awake at 2.45. Yippeeeee!
I will update this after my next hospital appointments which are in the next few weeks.
So update on my Chiari. I have switch GP surgery's, on the advice of Claire's mum. She is now my GP and is setting the wheels in motion. She doesn't think I am making it up. She knows so much about my condition. I saw her for the first time about 3 weeks ago. She adjusted my medication, sent me for a blood test and wrote to my neurosurgeon asking for an earlier appointment. Had my blood test done 4 days after on a Friday morning and by the Monday morning I had a phone call informing me of the results. At my old surgery it was common to wait about 4 weeks and only get the results if you bugged them. The results showed I had slightly low potassium, so I just have to eat more bananas. I have also started to take a vitamin supplement, just to cover myself.
Went for another appointment on Tuesday, as we had not heard from neuro she sent them a fax again asking for a quicker appointment so fingers crossed!
However, the better news is that she has agreed I can go back to work on an adjustment plan. I basically can only work part time, can't be left alone with children in case I faint, no lifting, climbing or strenuous activity. I go into work during the week of the 6th September to get this sorted, I hope they can accommodate me.
I also had an appointment with the eye specialist. My eye sight has changed again (in a month) and so has my squint. I have been given a temporary lense in my glasses and this has got rid of my double vision totally !!!
Today I have had the worst day in a long time. I have had a really bad headache, I still can't shift it so I am still wide awake at 2.45. Yippeeeee!
I will update this after my next hospital appointments which are in the next few weeks.
Saturday, 14 August 2010
My Life in Pain
Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.
Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.
Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.
Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.
Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.
More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.
Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.
Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.
Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.
The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking er defenses, the beasts seem so strong.
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.
Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.
Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.
Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.
Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.
More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.
Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.
Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.
Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.
The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking er defenses, the beasts seem so strong.
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