Physio

Physio is going well and not so well.  My physiotherapist is fairly certain that I have damage to muscles and nerves.  But without the MRI results she is cautious in her treatment plan.  Results should be available sometime this week.  And of course my family dr. is not in town... so she will have to request the MRI from the hospital herself, or wait until October 18th when my family dr. returns.  (I'm a perpetual run-on-thought lately... where was I?)

We are doing nerve flossing and passive motion only.  My shoulder seizes up at times and catches and won't move through the motion she is trying.  It makes progress difficult.  And she finally found my pain.  For the first few visits she could not replicate my pain by moving my shoulder.  Now, finally on Wednesday she found it and it indicates that the labrum is torn by the ball of the humorous - again.  It could have happened because my labrum was already repaired once, or could have torn in a completely new place.  She is not sure.  She also believes I might have a tear in the deltoid muscle.  My radial and my median nerves show signs of damage... And only the supraspinatous muscle in the rotator cuff appears to be working.  It's a complex problem.  But she is trying very hard just to keep me moving.  But pain management and strengthening are out of the question.  My pain is so intermittent that it is hard to manage.  It can be completely gone for hours and then it can suddenly be 8/10.  It is frustrating.  She tried ultrasound and interferential, but neither have offered me any relief unfortunately.

My physio is very happy with my knowledge and acknowledgment of my pain and my explanations of what is going on with my shoulder.  I've been through two shoulder surgeries, I know the terminology.  It helps that I understand what is happening as well.  It's just frustrating that I can't help fix it.

The worst is waking up several times a night in so much pain that I can't even roll over.  The hubby says I have woken him up - I'm whimpering in my sleep.  Yeah, I'm in pain.  But I continue to try and do normal things - cook, dishes, a little shopping, and finally driving.  But by the end of the day, and two or three sets of the physio exercises, I'm done.  My shoulder pain radiates down my entire arm, across my shoulder blade, up my neck and down across my chest.  I can reach forwards, sometimes without pain, but not abduct at all (to the side).  It's agony if I try to reach sideways.  Physio explained that some of the neck and chest pain results from the other muscles compensating for the muscles which are torn.  My pectorals and trapezius are trying to work instead of the rotator cuff muscles.  Wonderful.  I really look forward to those MRI results too... I'm in need of some answers.

Appointments Galore

I feel like I'm living at a clinic, hospital or lab all this week and next!

Physio started on Monday morning with a 1 hour 20 minute very thorough assessment.  The therapist  isn't really sure what is going on.  There is a problem with my deltoid muscle for sure, and quite likely some nerve impingement as well.  She said there is definitely something neurological going on.  Could be as a result of my arm being externally rotated and in a fixed position for my 5.5 hour surgery in June.  

Physio gave me a couple of exercises to do at home three times per day.  Epic failure on the abductor extension to do a spider walk with my fingers up the wall.  I am in absolute agony trying to raise my right arm to the side.  I cannot extend my arm fully further than a foot from my side with it straight.  PAIN, burning, searing PAIN!!  And then I bend my elbow or turn my torso to lessen the pain.  Hmph... a definite sign of something terribly WRONG!

I also had my full physical on Monday afternoon.  Won't die of high blood pressure according to my family dr.  And just to be safe he sent me to the lab for the usual fasting blood work - cholesterol, sugars, B12, blood counts, etc.  Everything else looks good.

Wednesday morning before physio I went to the lab and sat for an hour... and they didn't get me in (!) so I went back after physio to see the vampires.   (Why when you tell the lab tech that you won't get blood out of my right arm did she insist on finding out for herself!! ARGH!!)  At physio it was more assessing and some nerve flossing and passive motion.  She is trying to get my shoulder moving.

Wednesday night I also had my MRI of my right shoulder to help find out what's up with it.  Results will be back in about 14 days.  The "magic fingers" sensation of the MRI bed is NOT good for a 12 week post decompression patient.  I still have a headache 2 days later... (sigh...)

Last night I went for tea with a Chiari sister.  We met before my decompression.  She has had 4 brain surgeries 7 years ago - decompression, patch, shunts... All at the age of 17!  She's a wonderful young lady and I'm so happy to know someone in town who I can sit down and talk to.  In a town of 100,000 people it's a rare find.... or not so rare... I know of 2 other Chiarians who have not had surgery and 1 sister-in-law of a co-worker who did have surgery... so in other words, Chiari is more prominent in my little town than it should be!

And back to physio this morning.  Heat, more nerve work and passive stretching, and IFC to finish off for pain management.  It's funny - I'm not generally in pain, but I go through fits and spurts.  Pain when I try to do something - fold towels, wash dishes, shampoo my hair.  But having the therapist move me through the motions is fine.  And frustrating.  It's hard to figure out what is wrong when she can't reproduce my pain.

Appointments are done for the week, thankfully.  Next week I have physio x3, massage therapy, eye doctor appointment, lunch with a friend, and that's just for starters!!  Thank heavens I'm driving again!

Orthopaedic Appointment

With luck, after I went to emergency on Friday for my shoulder, I got into the the orthopaedic surgeon today at the fracture clinic.

It was almost a three hour wait, but that is to be expected.  I've been through the fracture clinic plenty to know what to expect.

Dr. W came in and review my previous shoulder history from my last surgery in 2003.  Asked about my limitations, weigh-bearing, mobility, etc.  She recommended physio for now, and will see me again in 6 weeks to review the MRI results.  My MRI, fortunately, is on September 15th, so less than a week away.

And, I can start driving!! So, this weekend I will go out with the hubby and do some test-drives to make sure my neck and shoulder don't hurt too much to drive.  'Cause starting Monday, I have physio at 10am a bit farther from home then I would normally walk.  And I have at least 3 other appointments next week.  I'm sure everyone is getting tired of being my chauffeur.

I also got my appointment for my brain MRI - it's for November 7th! Argh!! I'm pretty sure Dr. Gentili didn't think it would take quite that long to get one done... I've e-mailed him to find out. 

Until my follow-up with Dr. W in 6 weeks, my days will now be walking, physio, and sitting on my duff with the laptop.  I'm trying to do some crafts every day but the pain is preventing me from doing much.

Hodge-Podge

1.  My wonderful husband has completed the trim work in the last bedroom.  IT IS BEAUTIFUL!!!  And he brought my piano up from the basement and put it in the room.  First time my piano has lived upstairs since we moved into the house!! :)

2.  I grew an ugly tomato - a really ugly tomato - people pay big bucks for these at the grocery store.  Should have sold it on eBay or something!!  But bumps, lumps and all the splits cut away - it tasted awesome!  There are still a lot of tomatoes still to ripen on the vines and I hope to make at least one batch of tomato sauce with them.

3.  I gave into the shoulder pain on Friday and went to emergency.  The doctor had an x-ray done - of course it showed nothing.  But he did put in a referral to the fracture clinic which will fast track me in to seeing the orthopaedic surgeon - hopefully in the next couple weeks (instead of MONTHS).  I was told to use a sling and to ice it.  I have been using the sling a couple hours a day while the hubby and I watch tv or while I ice it.  It helps a little, but not a lot.

4.  This morning there was frost.  The 6th of September - it's not unheard of, but still a little early for my liking.  I covered my tomato plants last night as I would prefer they ripen on the vine and not in the basement.

5.  Surefire way to aggravate a torn shoulder - sit down at the piano your husband moved into the spare room and play for the first time since last Christmas.  Three songs and I was done.  But I do miss playing!!

6.  I watched momma and two young otters swim down-river this morning on my walk.  They were fishing.  And so pretty!  I love watching wildlife.  And the river is only a block from my house, smack-dab in the middle of town.

7.  I promised a picture of my beaded Christmas tree ornament - the one I designed from a picture I saw. Here you go!!  Nothing amazing, but I think they are cute.  Right now I'm working on spiders - Christmas spiders (not creepy crawly gross things I make the husband kill if they live on the main floor of our house).  I'm getting ready for the Christmas craft show season.  This week I have to call the consignment shop in town and find out when I can bring in my stuff for the holiday shopping season as well.  I live in such a small city that yes, we have 1 consignment craft shop, and most craft shows might see between 120 to 500 people in a day.  You have to be diverse if you want to make any money with what you are selling.  There are many years when I don't even make enough to pay for the rental table.  I know I'll do one show this year, but might look into one more.

8.  Suddenly, after 10 weeks of having no social life, things have suddenly turned around...strange! I went for lunch with my mother-in-law and aunts-in-law on Thursday.  Saturday I had tea with a dear, dear friend who is going for wrist surgery in Toronto on Wednesday - I'm praying for her!!! And this week I will be having lunch with another friend before she goes back to Bogota.  Plus appointments galore in the next two weeks - massage, shoulder MRI, physical, eye doctor, and I really need a haircut soon!!  And I should hear from the fracture clinic too, so I'll have to head up there for a day too.  I'm not complaining - it's nice to be out of the house.  And in another week or so I can actually drive!! :)

Post-Op Report

Monday was a long day.  It was also extremely hot.  Mum and I flew to Toronto for my follow-up with Dr. Gentili.  The basic gist of the appointment...

Posterior fossa decompression surgery looks like it was successful.  Dr. Gentili is very pleased with my recovery and progress thus far.  

My scars look good - the head is great, the thigh is not as good, a little hypertrophic - it's red and wider than it should be.  I can get some serum to reduce the look of the scar if I want to. But as I see it, it is a battle scar, not a beauty mark.

I can start driving in about two weeks.  But no driving in Toronto - hahaha!!  And just for short periods of time to start.  No 3 hour trips for a while.

Dr. G (I'm tired of typing his whole name, sorry folks, you get who I'm talking about) isn't confident that the numbness in my left leg is Chiari related (I disagree with this, but he is the doctor) and said if it persists that I should bring it up with my family doctor.  I also have some disc issues in my back which might be why I have the numbness.

I was told to see my eye doctor to make sure I don't have any retinal issues as I've been seeing more spots and halos than normal and Dr. G wants this monitored but doesn't think it is from the surgery.

I will have an MRI done here and send the results to Dr. G.  He will use the MRI as a base line to monitor my herniation and the arachnoid cyst in my right temple.  If the MRI looks good I don't need to see him until June next year.  If he sees something amiss he will let me know and I will see him in December or January.

After checking the clinical notes for the length of my herniation (sorry, didn't record it, but the tonsils were into the first vertebra) and if he took a picture during surgery of my brainstem (sorry, guess I didn't this time) he also looked for anything about my shoulder (nope, sorry, don't see anything and the positioning during the brain portion of the surgery should not cause my shoulder distress).  For the brain surgery I am laid on my face (obviously) with my arm externally rotated at my sides, not splayed out in a T.  But he does not know what happened when they moved me or rolled me over like Raggedy Ann.  He is sorry about my shoulder issues and did concur that the orthopaedic I found at Toronto Western is an excellent shoulder specialist and recommended I be referred to him by my family dr. as well.

Dr. G left the return to work discussion up to me and my family dr.

Mum and I walked approximately 7 miles in the 40C / 104F temperatures.  We walked through the Eaton's Centre, China Town, to the hospital, back through Kensington Market and back to the shuttle to the airport.  We were hot and exhausted, but it was a good day.  We had a few good laughs and a really nice early supper at Red Lobster.  And thank goodness for air conditioned airports and free cold drinks. And our flight was only about a half hour late getting in, so in all it was only a 18 hour day.

Today was the trip to my family doctor to discuss the shoulder and the return to work plan.

Family doctor (from hereon in fam dr.) did the referral to the second orthopaedic surgeon - the one at Toronto Western.

Fam dr. also did my referral for my brain MRI at Dr. G's request, sooner than later.  Hopefully it will be in the next couple of weeks instead of the traditional 6 to 12 week wait we usually have here for MRIs.

Return to work - hahahahahahaha - not possible with my shoulder right now.  My shoulder is getting worse by the day and the activities I can do with it are less and less.  I cannot hold a bath towel with my arm outstretched to fold it.  I cannot pour the kettle without supporting my arm with my left hand.  It's killing me to type my post, but I can't stand typing left-handed only... And the pain gets worse as the day goes on to the point that by 3:00 or 4:00 I'm usually very uncomfortable and bordering on wanting to go to the emergency room.  (but what's the point, they can't do anything for it anyway)  It burns in my shoulder, radiates down to my fingers, down my clavicle into my chest, up my neck into my jaw and ears, and down my spine.  OUCH!!!! And no pain killers work.  Where was I?? Oh yeah, even without the shoulder issue my fam dr. would like me to have 4 more weeks off of work.  But because of the shoulder 6 to 8 weeks more off work, minimum.  We will revisit the return to work sometime early October.

Fam dr. would like me to have the MRI results before I return to work.  And if it's in the stars, the cards, the heavens, and any other thing that could work in my favour, also to see an orthopaedic before I return to work.  So I'm on extended "vacation".

After my appointment I stopped in at my office to let my two bosses know what was up and talk to the HR department about the end of my short term disability coverage and the start of my long term.  Good news there, there should not be a lapse between the two plans and when we get close to the end of October I just have to pay my fam dr. to fill in more paperwork to confirm my symptoms and that I cannot yet perform my duties at work.  (I have not mentioned how much I dislike having to pay $30 for my fam dr. to write on a form for my insurance company telling them I cannot yet return to work.  But them's the breaks right??)  Both my bosses were in meetings, so I had to hang around for a while.  I chatted with a couple of colleagues and then brought my bosses up to date.  Both are sad that I cannot come back right now, but neither want me to rush back either.  My male boss noticed that I'm still having trouble with the cognitive thinking and transferring it to speech, but he was nice about it - said he could live with it.  (not in a condescending way, typing it out sounds condescending...)  It doesn't happen all the time but only when I'm trying to think quickly - like responding to a question.  My female boss misses me and really wishes me nothing but the best (she is possibly the nicest person I've ever met).  She too said once I am back she will accept any difficulties I might have returning to my duties and we will work with them so I can be the assistant I was before my surgery.

So, 6 to 8 more weeks off, at home, continuing to heal my head and hopefully hear from an orthopaedic!!

Neuro Follow-up Tomorrow

Tomorrow promises to be a long, hot day.  Mum and I are headed back to Toronto Western Hospital to see Dr. Gentili for my posterior fossa decompression surgery follow-up.  

We fly out at 7 am and arrive around 9.  I planned out our day sort of.  We'll take the shuttle to Union Station and then walk up to the Eaton's Centre for some shopping.  (Why is it still called the Eaton's Centre if Eaton's went belly-up 10 or more years ago??)  Then we can walk or take the streetcar to the hospital for my appointment at 1:45.  I hope my mum's hip isn't bothering her because I'd really like her to walk through Chinatown!! I love it there.  It is so culturally diverse for 3 or 4 blocks and the bam - back to TO.  After my appointment we'll head back to the financial district and mall area for an early dinner at Red Lobster.  Then back to the airport by 6 for the flight home.  I mapped it out and if we walk all of it we're looking at about 10km / 6.25 miles, without the mall walking.  I can do up to 5 miles a day right now, but not all at once... So we may have 1 or 2 streetcar rides tomorrow.

I'm not sure what Dr. Gentili is going to say.  I'm sure he will agree that the surgery this far has been a success.  I don't know what he will say about going back to work.   Brainwise I am fine to go back I think, it's the dang shoulder that may prevent me.  I know I still have to have another brain MRI to check the decompression and CSF flow too.  But I think it will be another month before Dr. Gentili wants that done.  

Should be an interesting day. Tuesday I see my family doctor to determine my return to work based on what Dr. Gentili said.  And I will update my 3 loyal readers once I'm home from that appointment.

For now, I'm going to go soak up some sunshine as it is already 28C / 84F with the humidex.

A Letter From Your Brain by Stephanie St. Claire

Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love,

your wounded brain

©1996 Stephanie St. Claire

May be reprinted for personal, not for profit use.