Friday, August 10, 2007

Like a Rolling Stone

Opps, it’s already August and I haven’t posted anything since June on THE BLOG. I know you have been frustrated that I am not posting regularly but it is more a function of being busy and Kathy’s progress being steady.

Steady for Kathy is still exciting stuff for most of us. Let’s kind go from her head to her toes on her recovery status. First her shunt seems to be operating within design specification. What is specification? Heck, I don’t know but it seems to be doing what it is supposed too. She still has the side effects of the shunt; headaches and ear problems associated with the pressure but overall is slowly improving.

Dr. Kureshi installed an anti-siphon device during her last shunt revision which is designed to help her from over-draining. The problem is the anti-siphon device, since installed, has led to Kathy blacking out on occasion. You can imagine the havoc this creates-severe falls, bruised body parts, aches and pains and the worst, more set-backs. We have tried to limit Kathy’s activities to decrease her chances of blacking out and have had some success. (Including making her wear a softball helmet for ultimate protection when attempting certain movements) The major frustration is, she somehow always finds a way to fall and hurt herself when you are not at home or not hovering over her every second. We are keeping a focus on this because of the danger of her falling and hitting her head hard.

Kathy speech is still an issue due to her confidence and stress levels when talking to people outside of her immediate core. Countless times Kathy and I have conversed as if nothing had ever happened. Her recall of vocabulary and the speed of sentence delivery is quite amazing. It’s when she’s outside of her comfort zone that she gets super self-conscious about herself and starts having difficulty in finding words or speaking smoothly. I feel this is just going to take time with a speech therapist’s assistance.

Overall Kathy’s mental and emotional functions are “right on” except her ability to remember short term events. It’s just something the doctors say happens with this kind of injury. Her emotional maturity and understanding of external events are as good as before her injury. It just seems her brain is having difficulty deciding when and how it’s going to sequence events during the day. She can at times remember everything going on that day, no matter how complex and then at the next moment, forget what happened seconds ago.

I have been told it takes years for your brain to put away long term memory but to organize and efficiently store short-term memory for storage later is a mighty complex process. We are now currently looking into Kathy attending a junior college program that works with Traumatic Brain Injury students to improve areas such as short term memory recollection and many other helpful subjects. Schooling and time are hopefully the solution.

Just what you don’t need is a sudden and painful side ache issue popping up. Kathy has had side pain for 6 weeks now and we have gone to her doctor numerous times, taken various forms of imaging to find out why side hurts so much. Of course our early and easy prognosis was Gallbladder stones. Well, after numerous CT scans, sonograms and lastly a nuclear dye scan, it is definitely not Gallbladder stones! Next week, Dr. Coen is moving to her Kidneys to look there for the source of the hidden pain. I will keep you posted.

Finally, the Achilles tendon surgery has a mixed progression. Her left food is totally healed and she feels good on that foot. The right continues to be painful and unwilling to follow commands. She needs continued physical therapy to bring her naughty right foot around. Her natural balance is affected by her brain’s inability to handle sudden movement or change of direction. Combine that with her problem right foot and she is struggling to walk without assistance. Not time to chuck the walker yet.

She is currently working twice a week with her Sharp Hospital physical therapist Rose, who is probably the finest example of an “exemplary” person you can meet in the PT field. She has gone countless times over the top trying to help Kathy in every possible way. She is on a mission to track down every specialist, past doctors and associates, looking for any help in Kathy’s recovery. I just hope we can keep her until Kathy gets better.

Finally, how is Kathy holding up psychology? Well she is extremely frustrated that she is at this stage in her life and at times whishes she could have gone when called. But at other times, we travel places together, go to Lake Havasu, attend graduations and other events, and enjoy our friends and family. She’s definitely glad to be around for these moments. I just hope she continues to improve. On Wednesday of this week it was one year anniversary of the tragic day. I hope a year from now we can rejoice about her full recovery! Again, thanks for your thoughts and prayers!

Wednesday, June 20, 2007

You've gone a long way baby!


Your Future is Bright!


June Gloom-High School Cheer

It’s mid June and I’m behind in writing about Kathy. The last months have been interesting in observing how far Kathy has gone and how far she needs to go. Overall I fell Kathy is slowly coming back and needs more time (maybe a lot more time) to overcome her inability to control her thoughts and emotions as before. Let’s take this BLOG one step at a time:

Kathy’s shunt operation healing is progressing well and her only major surgery pain is from the incision made into the skull for her fluid valve. Most bone cuts like hers take a long time to stop aching. Her overall shunt operation success seems OK. The headaches, related to the shunts operation, have gone down significantly. Her slightest motion or head movement used to created sharp pains has now lessened. Unfortunately, the traumatic brain injury Kathy received is just going to give her some problems life long. Our doctor comments, symptoms of people with shunts tend to be unfortunate and at times difficult to deal with. Kathy has to attempt to just find a way to get them under control and minimize there impact on her life.

The bulk of the problems Kathy is having seem to be the way the brain is relearning how to process what a typical day shells out. The stress of all the variables, decisions, pressures, uncertainties are too much for Kathy. Until she has time to relearn what we all take for granted, then she will have difficulty in dealing with the symptoms. The constant muscles strains and tightening around the head and neck, stress related headaches and the uncertainty of what’s around the corner are all effects of her uncertainty.

The good news is that she will learn to handle these things better as she learns to grasp the tools to control these actions. Unfortunately it will many months and maybe years for this to happen. She’s almost like a small child having to learn control and the discipline of emotions. It takes kid years and some never get it-just ask me!

Lately, she is been going through a combination of Bio-Feedback therapy and special healing treatments that seem to be very successful. Watching Kathy get better, even more engrain into my beliefs, that the physical side of Kathy’s head pain is not as great as the internal issues. The minute by hour control of the brain and how it operates is the prime factor behind her getting measurably better in the future. After both treatments her headaches and pain go totally away.

I not an expert but somehow the different processes work on the internal control of her mind and allow the brain to be calm and operate in an efficient and controlled manner. Unfortunately these various treatments result in only short term improvements, only for a few hours or one day. It is significant enough to keep doing and the training of the mind could hasten her recovery.

Now, let’s get to Kathy’s walking after her double Achilles surgery. She is coming along and is finding good strength and healing on her left side. The right one continues to be problemic due to the nerve damage it received. Unfortunately she cannot balance with the foot being so weak and uncooperative and she needs help walking. We hope Kathy can overcome this physical retaining process and eventually walk without assistance. But as I have learned, for the first time in my life, a good dose of patience is always an important skill to acquire. He doctor feels Kathy will get back to a good percentage of her old skill level with her strong desire and hard ethic. Possibly in a year or two?

Kathy’s most recent problem is trying to deal with the realization that she will not be what she was 100%. When you have to go through something a horrible as this, it takes all your hopes and desires away. She is slowly integrating back into society and was able to enjoy going out and attending her daughter high school graduation last week! As, I explained to her, this is the reason you lived and weren’t taken away from us, to go to events like these. It was great to get out and inhale the moments we all live for.

Again, thank you all for your concerns and wishes. Kathy is very strong and one day I hope you will see her and not believe she changed one bit since before her accident. It can happen!

Wednesday, May 02, 2007

May Flowers

It about time I updated everyone on Kathy’s condition! She’s had a roller coaster ride of health issues over the last few months. She looks better and walks better every day but her cognitive abilities are taking time. She cannot remember certain events, even in the same day let alone the last few days. This is our biggest disappointment because she is coming along so slowly in this area. It really scares her that she can get so easily disoriented and so forgetful. Let’s go over all the areas of concern and how we are handling them.

First from the top down-Her new adjustable shunt is performing acceptably. We visited Dr. Kureshi two weeks ago and he reviewed her surgery spot and adjusted her value. Her surgery looks healed and no signs of infection. He brought out the valve adjustment kit and it is quite cool. It comes in a small suitcase and he places it directly over the shunt (on top of her hair) and dials in the exact degree of change. He decided to dial it open wider, by one unit of measurement. He felt it would be better to increase the flow than to slow it down and reduce the cognitive development Kathy has already made. How has it worked? We can’t measure the progress yet because Kathy still has very strong headaches. The question is, are the headaches shunt related or other causes?

Maybe her headpain is coming from other causes? We noticed after her weekly Bio-feedback sessions, she had no headaches afterwards, even if she started with strong ones. Second taking medication like Valium, a central nervous system suppressant, reduces her pain better than any strong pain medication.

To take advantage of this theory, her headaches pain is maybe stress and disorientation related, we are trying two new approaches. I recently rented a home Bio-Therapy machine to give Kathy daily therapy, versus twice a week, she was receiving. Second Dr. Druet, her pain management doctor, who also believes the theory of stress related headaches, feels he can help. He is going to prescribe some stress relaxation type medication for Kathy and wants her to visit the office regularly to manage the head pain. He feels once Kathy, in a year or so, regains more cognitive abilities, she will gain the self management to stop taking the medication.

Another major concern-Kathy is falling every so often. She blacks out and wakes up on the floor. This of course is very dangerous and her doctor has ordered an evaluation. She could be having everything from negative brain activity to a central balance issue. Next week she is attending the Balance Center at Sharp Hospital. They will determine if this is a minor issue that can be overcome with medication or it’s a rehabilitation issue.

Now, can we get her walking better? He doctor, Dr. Freeman feels her Achilles surgery went very well. Again he cautioned it takes two years for her to get full recovery, but possibly her right foot would have some residual nerve damage from her brain injury. To help Kathy get going, we are weekly going to Sharps, where she has a great therapist named Robert, who has made great strides with Kathy. He even invented, from scratch, last week, a non- evasive light support for her right foot. He is very kind and supportive. We just hope we can keep getting a great progress every week that Robert affords Kathy.

Finally, how is she really doing from me? Being around her so much, I feel I can give you a good idea of her progress. Her shunt remains and will remain, to give her some form of headaches, as a side effect for a long time. But is it really her shunt because the ventricles inside her brain are scarred so heavily from infection, they are not working as God intended. They are the root cause and not the simple medical action of removing excess fluid, causing the internal head pain. Her headaches from other sources show real promise. I give her a full year or year and a half to regain the bulk of her brain abilities, especially her higher cognitive capabilities. Maybe 75-90%?? Is that good- well for being just 2 hours away from dying, that isn’t bad!

She is walking better every day. Her right foot might never get better and she might have to use a cain. Knowing this is a physical mind over matter thing, Kathy has always had a well conditioned body and should overcome her walking issues. I give her an 80-95% recovery on her feet in a year and a half.

And of great importance! Kathy is looking better every month. She is eating healthy, exercising a lot and just looking better. Thanks for the prayers and thoughts and we can never thank you enough for all the kind wishes. I look forward to her next progress report!

Tuesday, April 03, 2007

Can't Get a Break

A lot has transpired since my last entry. Kathy has gone from doing pretty good to going downhill again. Since the last days of March she has had severe headaches on and off with other bad symptoms. Yesterday she had enough and we decided to get a CT scan.

This morning we traveled down to Scripps Memorial to get a CT scan. Everything went quickly and efficiently as always. I took the CT’s directly to Dr. Kureshi office for comment. Before I knew it, his office had closed and I had not talked to him. I e-mailed him tonight to hope to get a response tomorrow.

Kathy just cannot shake her headaches. No matter what we do with cold/hot compresses and natural means, they won’t go away. I mix up her medication and decrease the intervals but all it does is dent the pain slightly. Does it all have to be bad?

You probably need some good news. I have some! If we get out of the headache mode, things would be looking up. Kathy is receiving Bio-Feedback from Dr. Drew as we call him, twice a week, at home. He has evaluated Kathy’s brain damage and is retraining her brain waves to operate normally instead of out of kilter. He is super intelligent and his discussions about Kathy have been very educational. After his session, Kathy’s headaches are greatly reduced with his “Natural Treatment”. His goal is to reduce her headaches while improving her ability to retain and use current information. It will take up to 40 sessions to get her treated. Wish my pocketbook luck!

Also today Kathy had her first REAL rehabilitation session on her ankles and feet at Sharp Rehabilitation Hospital. Kathy had a one hour consultation with her therapist, Robert. He was extremely nice and was very up on Kathy’s condition. He analyzed her carefully and recommended a wide range of home and facility rehabilitation. He is concentrating on her ankles, feet and balance. Kathy and I were just ecstatic when we left because she is finally getting EXTREME professional care. He feels it will take Kathy months to get balanced and gain the strength back in her lower extremities. But he is very positive-she is going to do fine!

In summary, if we can get her head to stop hurting, she has excellent professionals to assist her recovery. It will be long and hard trip for Kathy. She will be frustrated (Like watching grass grow) but we all know how hard Kathy works when she sets her mind on something.

I will post you all when I get the outcome from Dr. Kureshi on her shunt situation!

Wednesday, March 21, 2007

Walking Tall

I have been waiting for some good-solid progress before I've reported. Kathy visited Dr. Kureshi two weeks ago for her post surgery check-up. He was extremely happy with the overall appearance of Kathy’s incision. He commented, everything looked great with no signs of redness or infection. Kathy was greatly relieved when he removed the surgery staples.

Kathy’s feet are another story. She has been an absolutely disaster after her Achilles surgery and the effects of her foot nerve damage. Her local physical therapists were just not helpful. Ladonna, Kathy’s sister was extremely helpful. Ladonna posse’s extensive Chiropractic knowledge in these areas and got proper treatment into gear. Ladonna ordered in house treatments, special walking braces and assisted walking. Kathy was much improved in just a few days. Why can’t we get the same level of help from the orthopedic surgeons?

We applied to get her back into Sharp's out-patient therapy for longer term therapy. We feel Sharp is the best option for her long term rehabilitation professional care.

Overall, Kathy’s shunt operation is much improved over the last week. She seems to get fewer headaches and other complications. Unfortunately, some days, she still gets bad headaches which are extremely difficult to manage. With the daily assistance of her visiting parents, things have gone much smoother. WE hope on her next appointment with Dr. Kureshi, he can adjust her shunt to optimize its performance and eliminate the headaches. I will post you up over the next few weeks with new information. To To Lo!

Sunday, March 04, 2007

New Shunt Report Card

Were at the one week anniversary date of Kathy’s shunt revision surgery. How is she doing?

The Good:

No earaches
Good appetite
Sometimes light headache
Sleeping OK

The Bad:

Head pain from the incision
Some very strong headaches
Dizzyness
Feels weird at times

Overall, Kathy’s Medtronic Shunt makes a difference. She has lost some painful side effects but regained new ones. It’s also confusing if the surgery incision is producing referred pain or is it her ventricles. Were visiting Dr. Kureshi this week and he plans to remove her surgery staples. (They are absolutely a major pain) This week we hope things just even out. Wish us luck!

Tuesday, February 27, 2007

The Waiting Game

Kathy’s progress is too difficult to chart at the moment. We went from Thursday’s high of the surgery to the low of Friday’s complications. Saturday we went from the excitement of being released from the hospital to a mixed up Sunday at home. So what’s going on?

This morning Kathy’s surgery incision is slightly raised and giving her lots of pain in the back of her head. She has a headache but we are not sure of if its source. The good news is Kathy is not experiencing earaches or ear discomfort after the shunt revision.

As time goes on, we can only measure against her earlier surgery. We are praying for no new problems. The big fear is the infection of the shunt and we defiantly do not want that! I guess were playing the waiting game.

Friday, February 23, 2007

The Big Easy

Well, I guess everything went too easy yesterday. (A quick surgery, good prognosis and a short hospital stay) Kathy had a rough night and morning. Her surgical dressing bled heavy and her headaches were so strong she vomited continually. I guess this is the famous two steps forward and one step back saying in action.

Doctor Kureshi visited this morning and ordered a CT scan of the brain to determine if everything was OK. He also ordered the nurses to redress her incision and have the staff pharmacist analyze the pain and nausea situation. The bottom line is Kathy will not go home today.

The doctor wants to get the head pain and bleeding under control before Kathy is to go home. We of course are all disappointed with the news. Hopefully things will get better soon.

Thursday, February 22, 2007

Fits Like a Glove!

Kathy had her surgery today and it went about as well as could be expected. She started at 5:30 A.M. with her pre-surgery preparations and went into surgery around 7:00 A.M. We waited until 9:30 A.M. when Dr. Kureshi came downstairs and gave us his post surgery update.

Dr. Kureshi commented everything went extremely well. He had to make an extra long incision to get everything fitted correctly but that was the only unpredictable event. He installed an adjustable shunt for the fine tuning features, which is set at a lesser flow to slow down the movement of excess CSF. (Over draining was the problem with Kathy's older shunt) Also, he installed a gravity cut off feed which allows Kathy to move her head up and down without as much head pain. Everything this afternoon went as planned with Kathy being probably released tomorrow.

Kathy's ROOM number is #803-1 on the 8th floor of Sharp Mercy Hospital. You can call the front desk at (858) 939-3960 and ask for her room. She has no direct dial number.

Again thanks for the prayers and the wonderful visits.

Tuesday, February 20, 2007

Kathy to Have Surgery February the 22nd!

Kathy will have shunt revision surgery this Thursday at Sharp Memorial Hospital. Her surgery is scheduled at 7:20 AM. I expect the surgery to take just a few hours. She should go right into post surgery ICU for the afternoon. I am told she will be in the hospital for only a few days and get released for the weekend.

The surgery is very straight forward. The plan to insert a new adjustable shunt valve in place of the fixed valve which is over-draining. After the valve placed they will hook up both the siphon end and the displacement end tubes without changing. This is the way its supposed to happen. Kathy should then have the comfort of having a valve that a Doctor can fine tune to assist Kathy's comfort levels. Let's keep our fingers crossed!

Monday, February 12, 2007

Surgery On My Mind

Today was a big day for Kathy. She visited with her new Neurologist, Dr. Shen Ye Wang and her Neurosurgeon, Dr. Sohaib Kureshi. Hard names to remember but both unforgettable doctors. Kathy’s morning visit was with Dr. Wang for the continued ear ache pain.

Kathy needs a permanent Neurologist besides a Neurosurgeon and visiting Dr. Wang seemed a good choice. He gave Kathy a round of testing but could not diagnose any problem with her inner ear or identify the referred pain source. His opinion was since the inner ear and brain are in such close proximity with both intertwined in function; her source of pain could very well be the low-pressure level in her brain. He portrayed “were there’s smoke, there’s fire”. He also gave us interesting alternative viewpoints of what issues are going on internally in Kathy’s brain and suggested she move forward on her shunt revision. If her ear aches did not go away after the revision we could eliminate that as a source and proceed on alternate treatments. One down one more to go!

In the afternoon we meet with her longtime Neurosurgeon, Dr. Kureshi. The purpose of the visit was to exorcise, face to face, some of the bewildering questions towards her shunt revision. Dr. Kureshi was awesome in taking time to answer each question in a layman’s approach with true compassion and emotion. I summarize their conversation below:

He suggested since Kathy has severe symptoms like headaches and neck pain 100% of the time, it is worth the surgery risk for the potential upside of less pain. (Kathy has a condition where her shunt is overdraining her CSF fluid in her brain cavity) Nothing ventured, nothing gained and nothing guaranteed. He is a smart doctor, he continues not to issues any guarantees except these comments "most of my patients I have performed shunt revisions on, have shown some improvement".

What are the major risks in shunt revision (replace the fixed valve with a adjustable magnetic valve)? As in all surgeries, this carries an infection and internal bleeding complication factor around 1%.

The surgery will be a Sharp Hospital (the same spot as her rehabilitation hospital) as soon as it can be scheduled. We will let you know ASAP.

The operation should take less than an hour without any complications. He will cut into the area of the original shunt, cut back the scar tissue, disconnect the siphon tube from her brain to the shunt and drainage tube to her stomach from the shunt, remove the old shunt and insert the calibrated adjustable shunt in its place. Once everything is working he will hook up the two ends to the new shunt and stitch up the incision.

Kathy will stay in the hospital for one or two day at the most. He wants her home as quickly as possible to minimize any hospital borne infections. If Kathy were to get an infection later, it most likely originating during the actual surgery itself. We don’t even want to go there-It would require a 3-4 week hospitalization and be a major bummer.

Over a period of three weeks to a month Kathy should progress to point-possibley further along than where she is today. We hope this includes less headaches and ear aches! She should easily make her son’s Wedding in May without any hitches-His words not mine.

Kathy asked about her constant inability to speak words she was thinking but could not quite roll out into her conversations. He described this condition in a Latin term and is associated with the damage her abscess created in the speech area. He is still extremely pleased in the fact that Kathy can speak and write as well as she does and not to worry because this will improve over time.

Kathy asked about her short term memory loss after her accident. She stated she could not remember much of anything over the last two years. He reminded Kathy the brain takes a long time to store away short-term memory and if you have an accident, the brain has not properly preserved the items into long term storage yet. It’s like your hard drive crashed but the data is still intact. He suggests a cognitive recognition program that was being taught at UCSD as a possible start to finding and remembering her recent memories.

Kathy asked about her inability to remember daily comments from people around her. He stated that her brain after the injury is not as attentive and trying to get to recover to optimum performance. (He reminded Kathy it has only been six months since her surgery and it takes up to five years to get everything back that’s coming back) He told her to concentrate when someone talks to her similar to the way she was listening to him. (Because he said he was going operate on her head so she better listen) She would need to work on her concentration and over time she would regain these abilities.

Finally Kathy told him of her tiredness, frustration an embarrassment of her condition. He stood up and lectured Kathy on the miracle she is and reminded her of her close brush with death or extreme retardation. He told her everyone else should be embarrassed around her that cannot appreciate what she has gone through to survive today. She should be proud that she has recovered 95% of here abilities and above all, got that second chance so many people don’t get. A great deal of recovery will be driven by her desire to fulfill her destiny.

He was very inspirational and even I wanted to go out and run through a wall for him and Kathy after his uplifting speech. As we sit here tonight Kathy is still scarred and confused. The operations, the hospital, mistakes, pain and the uncertainty-Should she go forward or not? I guess we’ll find out sooner or later? Keep you posted on the surgery date and the outcome!

Love and Prayers

Sunday, February 04, 2007

A Super Bowl-Kathy Progress Report

We are back! Many people have asked why I haven’t keep posting the blog. Busy, busy and busier. I wish I could report life has gone back to normal and everything is fine but I can’t. Kathy has made great progress in many areas but still has significant problems with her shunt. What is wrong with her shunt?

Kathy’s shunt valve is still overflowing CSF fluid out of her brain. When you look at the CT scans, her ventricles are little thin slits instead of normal canals. We have learned that most surgeons install shunts with the aim of overflow for obvious reason vs. under flowing. The big issue is how the patient “adjusts” to the “under” pressure in the cranial area. Headaches, neck aches, nausea and vomiting are all extreme reactions to overflowing shunt valve.

Kathy has mostly recurring head aches and neck aces but are not considered major shunt failure symptoms. Dr. Kureshi has given Kathy the choice; live with your side effects or have surgery and get an adjustable shunt valve installed. Seems like an easy choice but you have to consider surgery risks, pain, hospitalization, complications, infections and will the revised valve work better. A true risk versus reward dilemma!

What else is going on with Kathy? Well, she has a constant ear ache. It started around Christmas time and got progressively worse towards New Year. We went to a new ENT doctor for a diagnosis before New Year’s Day. She saw nothing and advised us to go to a TMJ jaw specialist for referred ear pain. During the time we saw her and the most recent doctor, Kathy has seen eight doctors for ear pain; the dentist, the neurosurgeon, the practitioner, the new practitioner, another ENT, an inner ear specialist and finally the TMJ doctor. The TMJ doctor found a ball of cotton in Kathy’s ear but bruised up her inner ear canals getting it out! Oh what a mess! Who knows anything?

Kathy is still suffering from her ear ache! We can only guess it might be her shunt or lingering pressure in the brain but these symptoms are not consistent with shunt or pressure symptoms. So far it’s a real mystery and a great disappointment in the medical profession. Let’s move on-

The good news is about everything else is going good. Kathy has a good appetite and her current weight is excellent. She can take care of herself during the day and carry out all of her personal grooming requirements. She's walking without the assistance of a walker and currently using a cane. Kathy’s Achilles tendon surgery was successful and she seems to be walking better each week. She will start physical therapy to build strength in the feet to assist in her balance which is a little off. Her overall physical condition below her head seems great!

Kathy’s brain besides the head aches and ear aches is working well. All her measurable cognitive skills have improved immensely. She fully understands all actions, communicates well, writes well and has even started to email her family. She still lacks self confidence at times and is confused when events get busy. This will all improve with time. So, we are in search of the ultimate ear ache solution. Will Kathy go forward with her shunt revision? These are all things hopefully God will help decide soon.

Again Kathy cannot express all of her intense feelings for the wonderful family and friends that got her through the difficult times. She just wants to say thank you, over and over and love to you and your families.