Lots to Think About Now

It's been a long road so far, but alas it appears that there might be a resort full of lively activities just over the horizon, waiting for me to check in. Unfortunately, the road between here and there is partially 'unpaved', but with the support of my family, we'll make sure our wheels are ready to roll before we continue on from here.

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It appears that the shunt which was implanted in my brain two years ago to relieve increased intracranial pressure has NOT failed and is functioning properly. Thank you Codman, Inc.! Despite this, however, my intracranial pressure appears to be rising, giving me many annoying symptoms such as poor vision , tinnitus, head & facial pain, silly walking, and seizures. Although the shunt's setting somehow got changed to a non-optimal level, it is not anticipated that reprogramming it with a big, electronic magnet in New York last week will have much of an impact on my intracranial pressure. The consensus is that my intracranial pressure is rising because my overall condition is deteriorating…but do not fret!...all is not lost!!!

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The past few months have been exhausting with multiple trips to see Dr. Chainsaw while being in less than travel worthy condition. Last week, interspersed with visits to Chainsaw, I went for a second consultation at The Chiari Institute (TCI) in Great Neck, NY, followed by a consult with a leading expert in Ehlers-Danlos Syndrome (EDS) in Baltimore, MD: Dr. Clair Francomano. While I hesitate in naming doctors and institutes until all the cards are in, diagnostically these people have been incredible and unbelievably keen. These are not 'highlighter' doctors who run their highlighter pens across a lab sheet…these people think!
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Although the long-term effects of the EDS have had dramatic effects on my entire body, the most significant at this time is my brain. Because the EDS has affected the connective tissue around my craniocervical junction (where your skull meets your neck), my skull is kind of falling off and because of this my brain is slipping out. This is called Functional Cranial Settling and as it slips down, my neck bone presses up, into my brain. Ouch! That's why stuff happens like loss of speech, hearing, sight, temperature control, etc. Because the head appears to be connected to everything else (hmmmm), lots of secondary effects occur such as adrenal fatigue (I have that), flattened pituitary gland (I have that too), increased intracranial pressure (I guess I have that one too), etc, etc, etc. We absolutely know I have this, but it is still up for grabs whether or not I have something called Tethered Spinal Cord. This is also related to spinal problems from EDS where the bottom of the spinal cord is getting yanked improperly which can lead to similar symptoms. TCI has some incredibly educational videos on their web site: http://www.northshorelij.com/body.cfm?ID=6407 .

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Now we're talking surgery. It's scary, but exciting at the same time. I think we're at least a year away from the surgery because of all the preparation, both physical and financial. I saw films of what they do and it scared the hell out of me. I'm incredibly tough when it comes to this sort of stuff, but I got scared when I saw this. I think that's why they showed it to me because they don't want any woosy-ass patients. Oy. Guess I gotta' get a grip!

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Surgery #1: Craniocervical Fusion…oy vey. The idea is if they stabilize my head and neck, then my brain should float back to where it should be and my symptoms should improve dramatically. Hopefully, my intracranial pressure will even come down. Within three months before the fusion surgery, TCI implements a procedure they developed called invasive cervical traction. It is used first to confirm the diagnosis of functional cranial settling, and then to pinpoint the exact measurements to be used in the actual fusion surgery. This process goes on for a couple of days and a patient named Kriss posted pictures of herself during this procedure: http://www.killerbanshee.com/family/medical/headtongs.html . First they put bolts into the sides of the skull (under anesthesia) and they attach the bolts to a traction device which allows them to manipulate the position of the head and neck while taking both radiographic measurements and assessing my symptoms while awake. It's like trying on a dress before you buy it! From what I understand, nobody else in the world is using this procedure and it has been suggested that I take advantage of this wonderful technology they have developed. After all the measurements are together, I'm ready for surgery (?) where they fuse the bones together as prescribed by the invasive cervical traction procedure. Kriss has been very kind in posting pictures of her post surgical x-rays (http://www.killerbanshee.com/family/medical/cervicalxrays.html) and incision (http://www.killerbanshee.com/family/medical/surgery-Pages/Image9.html) although my pictures won't look exactly the same! The big debate is if they will be able to stop at C5 or if they will have to go down to C6. It is anticipated that I will lose about 40% mobility in all directions, but I consider that to be minor compared to what I have to gain.

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Surgery #2: Tethered Cord (huh?). I don't know much about this procedure because I don't know if I even have it, but there's many signs that I do. From what I understand, it involves releasing the base of the spinal cord from an abnormal restriction. The results of this procedure appear to be just as miraculous as Surgery #1, but substantially less invasive. This is not an option, however, instead of Surgery #1. It is simply being discussed at this time as an additional diagnosis and I do not know how it is recommended to handle both conditions.

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So what about right now? I'm going to be in more restrictive orthoses between now and then to accommodate my deterioration and to try a mimic the effects of the surgery to ensure that this is what I want to do. I'm even getting orthotic devices for my poor little EDS stricken fingers! I've also got better supervision for physical therapy, although I need to find a therapist in my area who can work with an EDS citizen. The neurosurgeon and Chainsaw have to battle it out to determine when it would be safe to go, although Chainsaw feels that the problems with my maxillary and mandibular bones will not spread beyond. TCI and Dr. Francomano need to agree on the diagnoses and course of treatment. There are several financial battles including negotiations with TCI, the insurance company, rehabilitation centers and lodgings for family members, some way to pay for stuff like our laundry services as I can no longer have my head lower than my chest. I'm getting close to the point where I need help dressing myself and expect this to happen before we get to surgery time.

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Aside from all this focus on getting myself better, I'm also focusing on keeping some normalcy in our lives. This is the only way to approximate sanity! Believe it or not, what I've wanted to do for the longest time is go to weekly Weight Watchers meetings. Yes, I'm concerned about my weight and my internist and I agree that this is a safe program for me, but I really just want to feel like I'm doing something normal on a weekly basis (besides flying to New York for the day for a little crunch and grind). I know I can do the same thing with physical therapy, but Weight Watchers sounds like so much more fun…especially when I go to Ben & Jerry's afterwards!

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Love to all…

Susan S

Who's a Turkey?

We found a neurosurgeon and I'm scheduled for LOTS of tests next week. We reconvene with the surgeon the following week when we'll discuss the results of the tests, which should pinpoint what part of the shunt is malfunctioning, if it is indeed malfunctioning. Hmmm. That will be the pivoting point in determining my hair fashion (or lack of it) for the next six months. But my Mom comes to the recue...yay!...after that she's going to drive me into New York (I'm grounded from air travel due to my elevated intracranial pressure) for some slice and dice by Dr. Chainsaw, which is way overdue and, needless to say, been problematic. So, I'll be squeezing a New York road trip in there somewhere, but New York with my Mom ain't so bad! Speaking of which, I'm headed out there for Turkey. Happy Thanksgiving everyone!

It's Working!

Well, I'd say its working! I've been back and forth the New York a couple of times to see Dr. Chainsaw and this definitely has an impact on my body's overall inflammation. I guess the jaw bone is connected to the everything bone! So, I fly to New York every two weeks for treatment and ride my bike when I'm well enough in between. Later!

Autumn's Chainsaw

I'm not sure who painted this mornings picture, but who ever did it, she is a very gifted artist!. It appears that autumn is finally here as the strong light of the early morning sun pointed all attention to emerging colors of orange and red amongst the rolling hills of green trees. This is the sight that this morning's artist treated me to as I rode to the airport, on my way once again for a day in New York for a little crunch and grind with Dr. Chainsaw. The bone infection has been debilitating since I got back from my last treatment two weeks ago. I won't go into details, but its really gross! In the meantime, my body's overall inflammation level has skyrocketed. At the risk of sounding like a kvetch, the first wakeful sensation of yesterday was pain in my fingers, accompanied by stiffness. Neuropathic type of pain plagued me throughout the day with hits along my arms and legs, as well atomic strikes on my hands and feet. By nightfall, I was back to the feeling of battery acid pouring down my arms, similar to what I felt a year ago before I received some relief through nerve blocking procedures. I'm sure anxiety over the possibility that the nerve blocks wore off didn't help. Nerve blocking is not usually a permanent solution to inflammatory problems of spinal nerve roots such as mine. Oy. I'm back on some serious non-steroidal anti-inflammatories which I have permission to use for a maximum of three days, after which I will start to increase my risk of stroking dramatically. Jeeze. Give me a break already! In the past, when the bone infection has become very active, it sometimes triggers my body into an inflammatory state. I'm hoping that this is the situation and today's crunch and grind will help to wash away the 'battery acid'. Otherwise, I have to go on the hunt for a doctor to perform new nerve blocks. While I'm very happy to have moved to this new state and have access to a wonderful new pool of medical professionals, not to mention a whole bunch of nice people, its difficult to be in critical need of a skilled doctor and not have one already in place, not to mention not having the slightest idea of where to begin to search! In light of the fact that it's hard to start all over with new doctors when you're sick and in pain, I'm going to root for the bone infection's driving the body's inflammation hypothesis and settle for fixing this problem when I get off this plane in half an hour. Regardless of today's crunch and grind outcome, I will be relying on just enough local anesthetic to allow me enough sanity to direct the driver to my favorite bakery (that's why I don't like to do this on Mondays, this bakery is owned and run by an Italian family and is traditionally closed on Mondays) to pick up a dozen of the world's finest prune hamentashen before catching my flight back home. With God's help, I'll be back on my bike within a few days! Thanks for keeping up with me and for all the e-mails and, well, not so many lately, guestbook messages! Later!

Stepfather Part I

I know that the term "stepfather" has a negative connotation to it and we're supposed to use better sounding words such as "bonus father", but my mother's husband has truly stepped in as my father. I have no problem referring to him as my stepfather because that is exactly who he is to me. I thank God that I have him and, right now, I feel as if I am the luckiest person in the world. I know that I'm super sick and suffering and miserable and everything, but at least I have a wonderful stepfather to help me through it! Earlier this month, my husband and daughter and I picked up our lives and moved to a new state for: 1) better career opportunities for my husband, 2) better educational opportunities for my daughter, and 3) better medical opportunities for me. Part of that move left us in closer proximity to NY, with even the possibility of getting there by car. In the middle of all this craziness with settling in a new world, the osteomyelites kicked in big time. I have had pain running down the entire side of my body and my vision has deteriorated horribly. I have needed to get to NY for medical attention from my oral surgeon there but had a very difficult time getting anyone to help me, as it seemed all family members (not that there are many to begin with) were overrun with responsibilities and responsible medical aids were not available due to ridiculous reasons such as hurricanes. I hate not being able bodied enough to travel independently! Upon overhearing my desperation, my stepfather got in his car and drove half a day to my home and then spent another day driving me to New York. At this moment, I am safely tucked away in the hotel that my mother had arranged for us and I know I'm going to be o.k. throughout the procedures this week because my stepfather is here with me. While I wish I was independent enough to face this week on my own, I'm glad to have my stepfather here with me. He can't possibly make the pain go away, but he sure does make me feel like smiling!

Listen to Everyone!

I survived and I'm home amongst moving boxes and am recovering. The combination of my SOMI brace and Tempurpedic pillow kept my head and neck steady and comfortable throughout the flight home. My companion talked the entire way with a gentleman next to her as I comfortably dozed to their melodic voices, but I still got some info from them. It seems that the gentleman travels frequently for medical treatment, as he was that evening for chemo therapy in New York, and he had several tips about charitable institutions which help people with the expensive burden of medical travel. I checked out one web site http://www.aircharitynetwork.org/ and feel totally encouraged by the idea that people actually organize to help those of us in this type of situation. I'm so glad I kept one ear open while I slept. My father told me more than once never to give up an opportunity to hear what someone has to say. You never can tell when you're going to get that wonderful bit of information, or even inspiration! Later!!

Visiting Dr. Chainsaw Part II

I'm in LaGuardia airport waiting for my very delayed plane for home. I'm in pain and feel extremely sick. I lay down on the floor to try and sleep and eventually had to settle for a seizure instead. Hmmmm. Imagine having a seizure on the airport floor? Well, no one seemed to notice and from my perspective it was reminiscent of the 1976 WHO concert in the Miami Stadium with lights flashing. I felt much better after that and am back to miserably waiting for my delayed plane again. Oy. Being really sick has many complications, including airline delays. I felt this one was worth a kvetch!