I survived and I am back!!!!!!

Wow! What a ride- that's about all I can say! It has been a journey that I hadn't quite expected. I will go into much detail as I recover and regain my strength, which will no doubt take many, many months. I am in a rehab facility as I write this, so please give me time. I really need not only your love and support, but your patience. I'm not sure if anyone is even reading this any longer. If you are, can you please let me know, because if not, there is no sense for me to continue. So please let me know. Thank for all of your prayers and everything. I felt it all.
Much love,
Valerie

The Big Day is Here!

Well, I do apologize as I never did post after the last time on Thursday. Somehow, the time just escaped me and now it is about 1:30 AM on "the" BIG DAY! I've decided to give up on the sleep possibility since I needed to rise at 3AM anyway! I'll have to catnap on the way to Boston or just take solace in knowing that I'll be "sleeping" alot in the next 2 days! I am telling you, there is a HUGE amount of planning and preparation into these kinds of surgeries!! Yikes, I'm exhausted. I have just a couple of things left to do on my "to-do" list and then I guess I'll shower again and just be ready to leave. I say shower "again" as I was given strict instruction that I had to shower with a special antibiotic soap. So I had to go to the pharmacy to get it and the instructions were that I was to shower on Sunday evening with this soap and then again on Monday morning before I left for Boston. You put it on, wait 3 minutes, put it on again, and wait another 3 minutes, then rinse - all the while not letting the water touch your skin. No lotions or powders afterwards. Do you know how darn cold it gets while you wait for 3 minutes to pass? I was freezing. And now I have to do it again in about an hour or so!! Ugh! I don't know why I'm complaining, I suppose it's a piece of cake compared to what I'm going to have to go through in the next few months.


Seriously, because I do have a couple of things left to do, I must sign off so I don't leave the house with them undone. All of you that know me well know that I can be a "bit" of a control freak!! I wouldn't feel okay about things if I left without doing everything that I wanted to do. I did wake up apprehensive today and a little scared. Please know that I am NOT scared of the surgeries' per se, more what will come after. I have every bit of faith in my surgeon and I also know that it is all in God's hands anyway. I feel pretty confident about that aspect, the recovery? Well, that's the part that has me a little wobbly! But I'm strong, I'm healthy and I'll probably be fine and with any luck, I'll be blogging again in no time, and you'll see (or should I say read) it for yourselves.

I went to Mass today and had my St. Gemma medal blessed and received an Anointing of the Sick. That is how I started my day and it felt very good. My dear sweet friend and neighbor sent me positive energy through Reiki. She has been doing Reiki on me for years, originally starting due to my back pain. She has been with me all the way, so supportive and so giving of herself. I love her dearly too. I can't believe that so many are doing such beautiful and selfless things for me. I called my other neighbors Tom and Trish over some ridiculous anxiety attack over iPods and MP3 players. They are both so patient and kind as well. Poor Tom, I am forever pestering him about computer problems. But that is the price he has to pay for being THE "geek squad" of our street since he is a technology "master". I couldn't even OWN a computer without him!! My Aunt Mary was sweet enough to help me do some menial paperwork yesterday, as I walked in her house with an armful of paper and even helped me reorganize my "to-do" list to a more reasonable existence! I've touched base, even if just for a few minutes this weekend with my closest friends, whether it be in person or on the phone. That was heart-warming too. I talked to my Dad yesterday and I know he hates that I have to go through this. I really do feel the support and love of so many. It is an out of space sort of feeling that I have been having for the past couple of days. A whirlwind. A complete whirlwind. But in less than 6 hours, I'll be "resting" and Dr. Glazer can do the worrying and the work, with God and the angels (my mother being one of them!) watching over him giving him the strength, courage and determination to straighten my spine. Then God and those same angels, with the prayers of all of you will then give ME the same strength, courage and determination to heal and endure the recovery that lies ahead. Till I can blog again, good night by dear, dear family and friends. I will blog again as soon as I possibly can. I am already anxious for that day. Please continue to read - it means the world to me.

St. Gemma

By the way, I know that many of you are looking for me to post the prayer to St. Gemma. I have put it in the sideline so that it will be easier for you to get to as the days go by (rather than trying to find it in a particular post, if I did it that way). So, feel free to start praying anytime you want!! Although at this point, I should probably find the Patron Saint of headcolds and I should be praying to him or her instead...................

I'm back!!!!!!!!!!!

Hi everyone - I'm back from DC! With a head cold! Which is NOT good news. I'm a little concerned and am praying that it gets better with each hour and not worse - because if that happens, the surgery will most likely have to be rescheduled!! I haven't been sick - even once - this winter and NOW I get sick! Maybe traveling wasn't the best idea right before surgery. Too late now, woulda, coulda, shoulda, right? I bought a Neti pot yesterday on my way home and I am going to try it in a little bit. For all of you that don't know, a Neti pot is a way to do a "nasal wash". Actually the first time that I ever heard of a Neti pot was when I had gone to the emergency room when I was ultimately diagnosed and later hospitalized with Mono, remember that? Well, when I had gone to the ER in the early morning hours, the doctor actually said to me, "Do you know what a Neti pot is?" and I said, "No" and he said, "I really think you would benefit from a nasal washing" and he went on to explain how I could still do it without a traditional pot. I was so sick, I just ignored him and also because I had no intention of putting any water up my nostrils!! Gross! Anyway, in the passing years as I have become more interested in more "natural" healing methods, I have often read of the Neti pot and know several people who use one regularly. In fact, in the past few months, I have actually picked up one in the store, but always put it back on the shelf, figuring why bother spending the money. So last night, when Erica picked me up from the airport, we stopped at Whole Foods in Cranston and I finally bought a Neti pot!!

I have a guy here today cleaning my carpets, so I will give it a try right after he leaves. I opened the box up a little earlier and was ready to give it a try, in desperation to "clean" out my nasal passages of this insidious little infection that is trying to spread through my body, but decided that I should try it out AFTER the carpet cleaner leaves! I suddenly thought that if he walked in and saw me with this little pot (that resembles a mini watering can!) with my head tilted, putting water up my nose, he may think I am a little crazy!! So in order to preserve my reputation as being a relatively sane person, I'll refrain from doing the Neti pot until he carpet man leaves!!

I slept well last night, albeit with the help of a couple of Tylenol PM's! I slept very well while I was away and am thankful for that. My leg (mostly my left one) has been still giving me issues with sporadic spasms, which mostly appear at night when I lay down. Unfortunately, the sensation has reared its ugly head during the day a few times. I don't like that. Some nights (like last night) it is very mild and I am able to almost ignore it and go to sleep. Other nights it is very bothersome and I am awake for hours, thrashing around. I have found that a Percocet helps a bit, not 100%, but enough so that I can go to sleep eventually. That is a double-edged sword though, because as I've mentioned before, narcotics generally cause me insomnia. So unfortunately, there are nights that I have to choose between leg spasms or insomnia. Great choice, huh?

I was finally able to speak with Dr. Glazer last Saturday. He called when I was in a workshop at the conference and left a voicemail with his personal cell phone number, telling me to feel free to call him back so that we didn't continue to play phone tag. I reached him later that afternoon. As I started to ask him questions, I could hear his small children in the background, "Daddy" and him saying "Shhh...” - I thought that was sweet. It was a reminder that although he is this world-renowned spine surgeon, he is first just a man ~ a husband and a father. I know that he has three young children and I'm pretty certain that the oldest isn't even 6 or 7 yet - so in the little time he probably spends at home, his children must cloister around him and they all must cherish those moments. So once again, here I am about to be sliced open with a load of questions, and yet I hesitate, picking and choosing which questions to ask so that I don't take up too much of his time away from his children. I guess that in that moment, I figured that his kids need him even more that I do.

Anyway, I asked 7 of the 9 questions that I had and we were off the phone in 4 1/2 minutes!! Ha! Ha! A true surgeon nonetheless - straightforward and to the point. You ask a question and you get an answer and then.......next question! Don't get me wrong, with Dr. Glazer you never get the feeling that he is rushing you, it is just that he is a typical surgeon - blunt. They don't have a lot of use for idle conversation. Funny group they are. So I asked if I could get my Harrington Rods back. Or any part of them, I should say. Dr. Glazer is not even sure he is taking them out completely. A lot of times, because so much time has passed from the time of implementation to revision, they can become deeply embedded in bone making it very dangerous to try to remove. More often than not, they take out parts of the rods, the parts that come out relatively easily and then actually use the parts that are embedded as an "anchor" for the new instrumentation. Regardless, I told him that I want back whatever he can give me. He said that they generally send it on to Pathology (weird huh? I forgot to ask why? Perhaps as part of a study?) so I have to fill out paperwork when I arrive on Monday morning. I also mentioned the leg pains and spasms that I am experiencing more and more and he said without doubt, he is certain that it is related to nerve impingement due to the severe lumbar stenosis that I have. He commented that he is opting to do the anterior (front of body) part of my revision for this reason alone. He said that doing anterior, along with posterior, will enable him to better "open" up this area and "really get in there" to "clean it up" and also to gain even better correction for me. I also inquired about anesthesia and mentioned that I do indeed have slight apprehension of being intubated regularly again, especially along with knowing that it will occur two days in a row and especially on the second day, for many, many hours. He said that although he understands my apprehension, he thinks it may be unwarranted because the paralyzed vocal cord did heal as expected. He said that they may decide to do it "fiber optically" versus an endotracheal tube, as is most often used. He said "we" will discuss it with the anesthesiologists the morning of the first surgery. I then proceeded to ask several other questions that will no doubt just bore you all to tears so I won't bother to explain, but then the call was over. Another "check" off the list of things to do!

So today, I am doing laundry (which there is MASSIVE amounts to be done!) and completing some paper work and then of course, I am going to clean about my nasal passages with my Neti pot! And I am also going to lay low and nap. Because if these surgeries end up having to be rescheduled, you all might end up having to visit me in a psychiatric hospital!! And I'm not kidding!!! Seriously.

Acceptance

           The Dalai Lama says, "When you lose, don't lose the lesson"

I guess that I may have lost out on a healthy spine, but I truly hope that I haven't or won't lose the lesson. The truth of the matter is that my scoliosis, has no doubt, made me the woman I am today.

So, here I am just 10 days away!! I'm feeling pretty good. I have prepared to the best of my ability. I trust my surgeon and his very skilled hands. I am humbled by the love and support that I have received from so many. I envision myself being pain free and walking straight. I am eating healthily. I am meditating and praying. There is not much else I can do. I really have given it up to Dr. Glazer and God.

Dr. Glazer has magical hands, hands that he has reminded me that he feels great responsibility with. He has often said, "It is my goal to improve the quality of their lives, never make them worse and I take that very seriously". I trust his hands. In fact, let’s face it; I trust them with my life. God? Well, I give it all to Him to handle. He is the man in charge after all!!

I will say this. These surgeries have forced me to confront alot in my life. What I like about it, what I don't. What I want to change, what I don't. What I like about myself and what I don't. Who is important to me and who is not. Who I know have my back (no pun intended!!) and who doesn't. More importantly, for reasons that I can't explain, I have easily come to terms with it all and accept it. All the good and all the bad. Someone told me recently that if you want things to be different, perhaps the answer is to become different yourself. Acceptance. It, for me, means finally coming to terms with WHAT IS, instead of what I wish for. Choices. And then Acceptance. I have Scoliosis, and I wish I didn't. I didn't choose it, but I must accept it. But I truly think that I am coming to a certain peace about it, all these years later. As Helen Keller once said, "I do not want the peace that passeth understanding. I want the understanding which bringeth peace." I love wisdom quotes. I love anything that makes us as human beings, stop in our tracks and just "think". I have been told that I am quite philosophical about so many of life's topics. Some people have even pointed a finger exclaiming their anger with me saying that they think I am self-righteous or that I think I am always right. In fact, that is not true at all. In fact, I think I am often wrong. I am just a human being interested in the human mind and I love to bring people to the point of "uncomfortable" when delving into their minds. Growth begins when we accept our weaknesses'. It is only then that we really find out important things about ourselves. My mother once said that the person we all lie most often to is ourselves. She was right. We "pretend" to assert all of kinds of things in the company of others or even to our own image in the mirror. Yet the truth is that unless you "test" these assertions on your body or in your intuitional consciousness (which we all possess), look in the mirror and really look at what we see, only then can we accept that if what we asserted is in fact true. Pretty deep, huh? If you understand that, then you know how to delve deep. If you don't, start delving!!! Calm the mind and let it be still. All kinds of thoughts will come through. Acknowledge them and accept them!

I am leaving tomorrow for a business trip to DC. I will return next Wednesday evening. I will attempt at that point to post on the blog each day until I leave for Boston. Right now, I must go pack. I'm slightly apprehensive about struggling through the airport, the plane and the walking I will have to endure. I am traveling with my dear co-worker and friend Paula. She is the kind of friend that I know that I can rely on and not feel bad. She very often instinctively knows when I need a helping hand before I even ask for it. I know that even if I find the trip painful, I will have many a laugh and tons of fun with Paula. I'm thinking that this trip is really a gift and the best use of my time right now.

Shout out a prayer for my 92 year old Aunt Sarah. She fell again! I believe that she is in surgery as I type this. Thank you to Diane and Jill, who took me out to dinner last Friday evening. It was relaxing and a lovely way to unwind. They too are two people who I know are there for me, no matter what. It is not only humbling, but heart-warming. We all need that in life. Actually, I feel quite selfish lately. I'm finding that I just can't "give" anything right now. It's as if I have no control, as if my mind and body are taking over and conserving everything just for me. I've chosen not to fight it. If I anger, hurt, or frustrate any of you - please forgive me. It is not my intent. I love each and every one of you dearly. It is just, as I stated earlier, an acceptance on my part of being kind to myself for once and focusing on just me so that I am prepared for this grueling recovery. I am learning to accept me and I ask you lovingly to just accept me as well. I'm leaving it all up to God. Acceptance. Acceptance is God's novel. Let's let him write it.

      "People are like stained glass windows: they sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light within."

The Preparation

Wow! There is a lot of planning for these surgeries!! I feel like I have been in constant motion since I last posted! First, I decided to eat organically, starting 2 weeks ago and I plan on doing it through about the 4-week post-op mark. I have read alot about this as part of recovery, being the healthiest you can be before surgery. "Clean" eating supposedly increases your immunity and strength and God knows that I am going to need strength. But you know what?? It's darn expensive to eat organically. I would say I am eating at least 80% organically; I'm not too crazy about it. I mean I still go out to dinner and I don't worry about it, but I'm trying - so that's has to be good enough! Along with that, I have been trying to follow the US guideline of eating 5 fruits and vegetables a day. Do you know how difficult that is? To do everyday? And I LOVE fruits and vegetables! I'm not always successful - but once again, I'm trying so it has to count for something.

The next thing was to self-donate blood, which is called Autologous Donations. My sister Ursula and my son Ben both share my blood type and they donated for me. That is called "Direct Donation". So with that out of the way, I should be good. Spinal surgery is known to be "bloody", so in fact there is a good chance this won't actually be enough blood, but let's pray that it is. We'll see!

Along with the organic eating and deciding to follow that right through to at least the 4-6 week post-op mark, I realized that I needed to do some cooking!! So for the past couple of weekends, I have been preparing and cooking only organic food for myself and freezing it! I chose the 4-6 week mark because otherwise I'll be poor - this can't go on for forever, that's for sure. But at least, I'll know I tried.

I've also been taking my vitamins and supplements religiously. I repeated bloodwork requested by my Primary Physician. She called last week and said that everything looked great. So that was a good thing.

I have scheduled my yearly Gynecologist appointment and a dentist appointment for right before surgery - these 2 particular appointments are evidently difficult, if not almost possible, for a few months after surgery. I'll be due for both so I figured it would be best doing them before and getting them out of the way. My yearly mammogram cannot be done (due to insurance restrictions) until after the middle of April - so that will be late this year. I will have to check with Dr. Glazer about this and when he feels that I will be able to do this. Ladies - you know what I am talking about when I say that you have to "twist" slightly during a mammogram, right? So I'll have to check into that one. I may have to be a few months late this year.

I've had to arrange care for during the day - as I can't be left alone for the first few weeks. Also, it depends on how much narcotics I will be on. Dr. Glazer recommended planning on 6 weeks of care with the notion that I could always cancel it if I didn't end up needing it. So I arranged for about 5 weeks. It wasn't too difficult, but I was anxious as it seems everyone works during the day.

I've returned to church. I had gotten "a bad taste in my mouth" about church for a while. I didn't really like the new priest we have at my church and I didn't particularly like his homily's either. There was just a distaste. I was "disenchanted" by church. I originally thought that I would just go to another church, but that never happened. Recently I had an urging to return. I mentioned this to a devout, religious friend of mine. I said, "I feel foolish going to church because it's been so long" and she said, "God forgives Valerie. Don't ever feel foolish visiting the house of the Lord. He will always accept you, and with open arms. If you want to return to church, then return to church". Hmmm.......so I did. It has given me a sense of calm and solace. Prayer has become my friend. Interestingly, I did a little Google research and found the patron Saint of back disorders!! Her name is St. Gemma. She was a beautiful young woman, who died at the age of 25 and she was canonized just 33 years later by Pope Pius X. She had scoliosis and had to endure this huge, heavy IRON brace!! She eventually developed tuberculosis and died. I have ordered a medal and say the St. Gemma Novena asking her to pray for me and for the skilled hands of my surgeon. So, I expect each and everyone of you (even you lurkers who refuse to join and prefer to be "silent") to pray to St. Gemma for me on March 15 and march 16. I am going to post her picture on the sidelines. Isn't she just the prettiest thing?? I'd love to go to Italy and see her shrine. I suddenly have a real affection (and connection) with St. Gemma.

People have been asking me if I am scared? I'm not sure. I think I am a "normal" scared, not over the edge. I KNOW what I am getting myself into and I KNOW that this isn't a cure. As Dr. Glazer says, "All I can do is what we have to work with today. I can give you no guarantees". So, some might say, "then why do it?" Well, that is a good question and the answer is QUALITY OF LIFE. I can't do much. And if enduring this, I can get the next 30 years with a higher quality of life, meaning without pain and able to live again, then it will be worth it. So in 25-30 years, I'll be around 75 years old. Perhaps I'll have to go through all of this again? I suppose it's a crap shoot, isn't it? Scoliosis is a demon. It is nasty and mean. It is a beast that some of us have to fight for our entire lives. But at least I have life, and a beautiful one at that, while fighting it. And that is more than some have had. So it's all good. And I will persevere. Beside the fact that I am now counting on St. Gemma, I also know that my mother will have it no other way!! ;)

The CT/Myelogram, the Results and my next surgeries - & hopefully my last!!!

For quite some time, Dr. Glazer had wanted me to have a CT/Myelogram. I said, "No way". I had heard horror stories about myelograms. To understand a CT/Myelogram, you have to understand which each test is and why sometimes it is combined into one. I'm sure you are well aware of, and probably have had, a CT Scan. If not, a CT Scan is really just like a huge x-ray. The scan provides a radiographic image of a single body plane. It is particularly good at imaging hard tissue such as bony structures. The equipment is shaped like a donut or ring with a movable table that slides in and out of the ring. The scanning system includes a computer that creates pictures represented as cross-sections or slices of the target anatomy, such as a specific part of the spine. Capturing similar images is not possible with traditional x-rays. That’s a CT Scan. Painless.

Now, a myelogram is an entirely different test. It is a diagnostic tool that uses radiographic contrast media (dye) that is injected into the spinal canal’s fluid (cerebrospinal fluid, CSF). After the dye is injected, the contrast dye serves to illuminate the spinal canal, cord, and nerve roots during imaging.

Thus, when a CT scan and myleography are combined (a CT/Myleogram) images are produced that clearly show both the bony structures of the spine and the nerve structures. These images are invaluable to physicians as they diagnose a patient’s spine problem.

Now, the horror stories I have heard were barbaric and this was a test that I had tried to avoid for many years now. However, when I had last seen Dr. Glazer and I told him that I was ready to proceed, the first thing he said was, "You need to do a myelogram for me". NO!!! He said, "Yes". I said, "Fine". He said, "No worries, I'm sending to you one of the best in the business, you'll be fine". Yeah, yeah, yeah. That's what they always say!!! Well, needless to say, the knee situation had come up and I had to cancel the appointment - TWICE!! First time because I had to attend a conference, so I rescheduled for about 4 weeks post-op from the knee surgery (because remember, I was told I would only need a few weeks to recover!). Well, there was no way I could go through with this test, laying on my stomach no less, with swollen knees that couldn't bend yet!! By the time I got around to rescheduling AGAIN, I had to call back to Dr. Glazer's office and have them start all over with a pre-authorization. I had now created more work for everyone! Finally the day came and off me and my friend Dee went. I had to do the "pre-op" stuff and get the instructions - nothing to eat after midnight (here we go again), someone has to drive you home, no work the next day, you must take it easy so you don't put strain on the "hole" that is made in your spinal canal and cause a leak. Blah, blah, blah. I was so scared. Much more nervous and scared than I had been with the neck surgery or the knee surgery! As usual, they were running behind and it was several hours before I was finally brought in to the special radiology center of Dr. Steve Reddy at Beth Israel. Hours behind schedule, and after being given an anti-anxiety medication hours earlier as well, I was happy to now receive whatever drugs they would give me. I was told to lie on the table on my stomach, I explained that I have Flatback and that is nearly impossible, they said, "We know. We are going to help you" and they brought some pillows and did their best to make me comfortable. But the best part was that they immediately started a line and the drugs were given to me instantly. The worst part was when they injected a local anesthetic. Although I was mildly aware of what was going on - I really wasn't? They then proceeded with the spinal tap in which they remove some spinal fluid and replace the same amount back with dye. In someone without a fused spine, you would lie on your side and pull your knees up to your chest to open the vertebrae, but with a fused spine there is no point. Nothing's opening! In my (our) case it is best to lay on the stomach to get the "best picture". In the middle of the procedure, they rotate you to allow the dye to fully incorporate into the spinal canal - like mixing a cake! Towards the end of the procedure, I remember that I suddenly had "the" dreaded myelogram headache and I must have turned my head or started to lift it up and Dr. Reddy, using his hand, forced it back down and said, "Valerie, don't move. Why are you moving?" and I remember saying, "I have a headache" and I heard him say to someone something about giving me more something or another, which I could only assume meant more drugs and then I barely remember anything. I do recall them telling me that they were bringing me to the CT now and I said, "Ok". I mean, c'mon, they could have taken me anywhere and I wouldn't have really understood or cared. I remember them waking me saying, "Valerie, CT Scan is all done". Yeah, ok. Back to sleep I went. They kept me there for several more hours and Dee took me home. My instructions were not to lay flat, but elevated, rest and drink plenty of water to facilitate the elimination of the dye. No real movement for a couple of days. I was fine almost the whole car ride home, but about 20-30 minutes from home, I fell fast asleep. I could barely make it in the house and the kids said I was "loony" the next morning when we talked about it. I just remember being tired, but they said I was saying all kinds of foolish things that didn't make any sense. I was just glad to have it over. For something I was so scared of and something that I had dreaded for so long, it really wasn't that bad of an experience. I had some awful twinges and strange feelings on the second night (which they had warned was common as the dye leaves the body) so I took 2 Percocet and fell asleep. This part was all done.

Dr. Glazer called with the results at a time when I was least expecting it. I was driving home from work and on RT 95. I answered the phone and heard, "Valerie dear, it's Dr. Glazer". I wanted to yell, "Now? NOW is when you call, when I am driving home?” Of course, I didn't.

He said, "I have the results of your Myelogram in front of me and it's not good." Now, that's a great way to start a conversation, isn't it? He proceeded to say, "It shows you have severe forminal stenosis, are you experiencing more numbness or more sciatica now?” Yep. I was. "Hmmm", he says. He continued with a list of not so wonderful things and finally said, "You know, I know it's really inconvenient to come to Boston, but I think you should come in so we can talk about next steps". Alrighty. I should move to Boston.

I called the next morning. (Aren't you proud of me?) I made an appointment for a couple of weeks later. Once again I find myself taking that all too familiar trip to Boston. Dr. Glazer entered and said, "So dear, I guess you feel you've put me off long enough, huh?" He said a lot of things at the visit but in the end it was obvious that I needed to go ahead with revision surgery sooner rather than later. Dr. Glazer said that he would have Janet (office manager) call me to set something up. When he left, I said, "Guess I'll see you in the OR". He just smiled.

Janet called me a few days later and I told her that I needed to set up the appointment for revision. She said, "He wants you to do this soon Valerie, seems like he is worried about permanent nerve damage or cauda equina?" I said, "OK" And before I knew it the surgery date was set for March. I received the office notes a couple of days later. Reading my diagnosis was more difficult than hearing it. I've always been a visual learner and this was no different. It states that I have:

"very severe forminal stenosis at L5-S1 along with Flatback Syndrome. Surgical correction will require a 2 or possible 3-stage surgery which would include on Day 1 (1st stage), an anterior (meaning that he will cut me open down the front, through my abdomen) lumbar fusion from L2-S1 with a partial vertebrectomy at L3 and then on Day 2 (2nd & 3rd stage), a posterior (meaning that he will cut me open down the back, the length of my spine - I would imagine just opening through the current scar from my previous fusions) fusion from T6-S1,S2, which will include a pedicle subtracting osteotomy at L3. Risks and benefits of this procedure were discussed in detail using the language understandable to this patient, who is quite knowledgeable about Flatback and concurrent conditions."

Now, can you see why I've lived in denial for so long and put it all off for as long as I could?

So now you all know - I am facing 2 surgeries and they will happen on March 15 and March 16 at Beth Israel Deaconess Medical Center in Boston. I should be in the hospital for about 10 days and Dr. Glazer has always said it is a very long, grueling recovery. "Owners decision" - that's what he has always said. I received my packet in the mail recently and I've been a busy girl. There is ALOT to do to prepare for a surgery of this magnitude. My next post will include all of this and other pertinent information, but not in this one. As I type this it is 1 o'clock in the morning and this girl has to get her rest!!! Good night my friends - I'll post again very soon. Thanks for all of your support. Love to all of you! Good night - sleep tight.

Knee surgery - 2009

In time, the voice box healed, the right vocal cord became flexible again and after several more of the hideous endoscopies, I was deemed healthy and able to have surgery again by Dr. Feldman.

The knees both felt good! I decided that I really liked steroid injections! It was the most relief I had in years. My neck was feeling good, the holidays came and went and I was thinking, "OK, I guess I should start planning revision". I saw Dr. Glazer again in February '09 and he reported that my neck was faring well, although I felt it was a bit "stiff" and I didn't feel that PT was all that successful. I had chosen a new PT this time and I think she was so fearful of hurting me that I didn't get out of it what I should have. He gave me a script to do another 'round' of PT.

Of course, I waited before I made a PT appointment. And I waited. Till slowly but surely, I started having problems. By April, I had a pain in the neck!! Worried that something may be wrong, I knew I couldn't call Dr. Glazer without having gone to PT, which was what I was supposed to have done a couple of months ago. So I chose another PT and had almost immediate success. This young lady was wonderful and really seemed to understand what I was going through. By now, the steroid injections had basically worn off, BUT I still had to admit that overall both knees didn't feel as bad as they did before the injections. I made an appointment and returned to see Dr. Davis.

His response was, "What's going on with your knees and WHY do you have pseudo-gout??” Duh! You are the doctor; YOU should be telling me why I have pseudo-gout!!! He said, "Let's give you another injection in each knee". OK-sounds good. He did and they weren't nearly as painful this time. I didn't know what to make of that. Then he said, "Let's get new MRI's". Ok-sounds good again. I guess, I mean all of this money, all of this time and all of this radiation exposure!! Is it really necessary??? But okay, he's the doctor. We arrange to do it at a Shields and there is a facility in Providence. Wonderful.

It was the worst MRI experience of my life. I realized how badly my Flatback had progressed because it was near impossible to stay flat on my back for that long. The test took about two hours and fifteen minutes to complete and I was in horrible pain. Plus, at this point, I had also developed Restless Leg Syndrome and they kept telling me to stay still. Between the back pain and the uncontrollable need to move my legs, it was torturous. I was literally in tears at the end and the MRI tech's felt so bad and were so compassionate.

I received a call from Dr. Davis a couple of weeks later and he said, "OK, I see meniscal tears in BOTH of you knees. You can either live with it OR I can go in there and see what the heck is going on". Knowing full well that the pain from my knees could impact recovery from spinal revision, I opted for the knee surgery. PLUS, I knew that Dr. Glazer wanted me to resolve the knee issues first. I trust him immensely and if that was what he wanted, so be it. So, just about one full year after my cervical fusion, here I was headed back to Beth Israel for bilateral knee surgery!! C'mon, I just wanted to have spine surgery. For some reason, I never get to opt for the easy path to anything; it seems as if I get stuck with detours at every turn. I ask, "How long will I be out of work?" remembering the supposed 2-week recovery from the neck surgery turning into 6 weeks! He said, "Eh, 2-4 weeks!” OK, so this time I told work 3-4 weeks. Although I spoke with several people who had ONE meniscal repair in ONE knee and were out for more than a month, because I feel that for the most part  I recover quickly, I'll be back at work in 4 weeks MAX. Surgery is set for July 27. Let's get this show on the road.

Monday, July 27 ~ Erica, Ben and I head to Boston. I drive us up and it's a nice ride, I'm calm - this is going to be NO big deal. In and out. I'm a little hungry though. So here's a question for you! EVERY single time you have surgery, the instructions are NOTHING TO EAT AFTER MIDNIGHT, right? OK, so shouldn't there be some leniency with that if your surgery is slated for the afternoon vs. first thing in the morning? So if someone eats last at 11:55 PM and is slated for surgery at 7AM, they followed the rules, and everythings is perfect, right? But if someone is slated for surgery at 4PM and hasn’t eaten since 11:55PM the night before is starving!!!! And freakin' dehydrated!! I never understood the logic to that! I think I need to ask someone that question sometime. We got into prep with no fanfare and no difficulty, everyone is very nice. They do the basic info, get me ready in a Johnny, a phlebotomist gets a line in me and soon Dr. Davis arrives. He draws with the infamous marks on my knees and tells the kids what he is going to do and then the anesthesiologist arrives. This time you can just tell he is an attending and no "newbie" and as he and I are talking, guess who walks by and looks at me? Dr. Glidden!! Remember him? He was the Chief of Anesthesiology that Dr. Glazer had arranged for me to chat with over the unfortunate incident that had occurred after my cervical fusion. After he looked at me with a quizzical glance and kept walking, I instinctively called out, "Dr. Glidden?" He backed up and squinted his eyes and said, "Hi" and I immediately re-introduced myself and he very quickly remembered and said, "Oh yes, you're the patient that the resident told you that you were a difficult intubate and you weren't?" Yep, that's me. He even took the time to explain to the present anesthesiologist (I never did plan for any special treatment for this surgery as I would only be out for 1-2 hours and Dr. Feldman had told me to ask for a LMA -laryngeal mask airway, which Dr. Davis said he would make sure was used) exactly what had occurred and he remembered it perfectly. He asked about my spine and when I would be having revision with Dr. Glazer and I told him, "Well, I really don't know. Right now, I am having this knee surgery and when I am fully recovered from it, I'll deal with the revision." By the way, LMA is a form of intubation that is very common in one-day surgeries anyway, regardless of any difficulties. Even though Dr. Glazer and Dr. Glidden had previously assured me that I am not a difficult intubate and that I had no problems whatsoever, I must admit that I felt a degree of comfort knowing that I would only be having LMA intubation rather than the typical endoscopic intubation. He wished me luck and was on his way.

I then turned my attention to this anesthesiologist (definitely an attending and not a fellow or resident or "newbie" as I call them!) by the name of Phillip Hess, MD. He was cheerful and personable and I could just tell that he "knew what he was doing". At last, I knew I was close to going to the OR when he started playing around the line and said, "Ok, Valerie, let's go! Do you drink wine?" and I said, "Yes?" and he said, "Red or White?" and I said, "Both" and he replied, "OK, you just got a BIG dose of Pinot Noir honey and you should feel it about now" and I said, "Oh yeah, I do" and the kids laughed. I kissed the kids and was wheeled to the OR. I don't know if it was because I was relatively calm or what, but I was relaxed with or without the aid of the "Pinot Noir" and I barely remember being wheeled into the OR and I was out. The next thing I knew was I was "coming to" and opening my eyes and looking directly at a clock. It was 2:15. Alright, that was good. Dr. Davis had said it would be about 1 1/2 - 2 hours and this was on target. Must have been successful - YEAH! After idle chit-chat with several nurses about Flatback, I was given oral pain meds and some crackers and ginger ale and up on my feet. My knees were all wrapped up and I couldn't tell what the heck was on them. I was brought to another area where Erica and Ben were waiting, I went to the bathroom, given instructions and a pair of crutches and Erica was sent to get the car and meet us out front. I was wheel chaired out to the front and had a little difficulty getting in the car (can I just say how grateful I am that I have a SUV?? I honestly don't know how I would have made out after either surgery without it!!) and my little Erica drove me home with my Ben in the back seat attending to my every moan. Bob and the kids helped me in the house and it was now about 7 or 8PM. I couldn't climb stairs so I slept downstairs in the now infamous "Aunt Mary's recliner" with one kid or the other for several nights.

After day 3 or 4 when the discomfort level had risen and I was wondering what the heck Dr. Davis had actually done, I decided to look at the discharge papers. Well, what a surprise!! Wonder why both knees were starting to really hurt! As it turns out, I didn’t just have meniscal tears repaired. He performed 5 procedures in my right knee and 4 in my left!!! Duh! Instead of feeling better with each passing day, I felt worse. It was never horrible, intense pain but more discomfort just on the brink of pain. I hobbled and wobbled, and moaned and groaned and after the 2 week mark, I knew that there was no way I was going to work. I kept insisting that I was until my daughter Erica finally said, "MOM! HELLO!! Look at you! You can barely get to the bathroom by yourself, you are NOT driving!!!! Face it, you're going to be out longer than you thought!!! End of story!" I had to call my boss and tell her. She was wonderful, but I felt awful. I mean, my God, these people are going to think I am a wimp!! So, not to digress, recovery turned out to be very difficult - mainly because I just could not do anything. At my first post-op I was told that I wouldn't be going back to work until October 1. Yikes!! Had to call work again and tell them that. I think the only reason I CHOSE to be compliant was because I knew that this surgery was just a stepping stone and I needed to heal and to heal well. The time eventually passed and I returned to work. I was still in PT 3x a week and I was exhausted. So now my neck was "fixed", and my knees were "fixed" - all set for spinal revision now. Right? Wrong. I couldn't bear to take any more time off of work. I was just going to have live with the pain a little longer. A year. Or two. Or three. I mean, I wasn't that bad. Or was I?

***18 more pictures!! Start at the bottom of the page!***

Thanks Trish - I'm sort of partial, but I think my kids were adorable too!! Thanks for commenting! (As you can see, I do indeed see your comments now!) I wish more would so I'd know who was still reading or not. But nonetheless, I'm so appreciative of your support - all of it!!
Love, Valerie

Post-op Recovery and oh those knees!

The two hour car ride was soooo long and yet.....we were home before I knew it?!? Strange, what drugs do to you. It seems as if we hit every bump in the road and I was sure my head was going to fall off! I had cradled myself with pillows and even using Ben's sweatshirt as more support. I couldn't get comfortable. As soon as we walked in the house, a surprise waited for me. My Aunt Mary owns an electric recliner that she had offered to me several times. I had thought about accepting but I couldn't bring myself to. Erica knew all about this and she must have asked every single day leading up to the surgery, "Don't you think you should get the recliner from Aunt Mary?? Don't you think you might want it?" I can be stubborn and just kept saying no. Well, my little Erica ignored me! While I was in the hospital, she decided that she wanted me to have it because she was certain I would be more comfortable in it. She spoke to my sister Ursula and Ursula got in contact with two of my cousins, Joey and Tommy, and they went to Aunt Mary's and got the chair. Ursula met them at my house and they brought it inside. I felt awful for them when I heard this - it was soooo hot out. Before Ursula left, she put the air-conditioning on - so when we walked in after that very unpleasant car ride, there was the comfy electric recliner and the house was cool!! If you know me at all, you KNOW that I despise the heat! What a pleasant surprise that was and I was so touched by Erica's choice! She was worried that I'd be mad at her, but how can anyone be angry when someone does something like that out of pure love?? She helped me into some comfy pj's, I took another Percocet and she lovingly helped me into the recliner and off to sleep I went.

I won't bore you with all of the details of that recovery, but I will mention some highlights. It sucked! There was a great deal more pain that I had anticipated. And the description I gave in an earlier post saying that my head felt like earth stuck on the top of a skinny pencil is still the best way of describing it. I truly felt like a bobble head and thank God I wore a neck brace for 2 weeks. I did remove it for showering and when I was reclining in the chair, but I felt much safer with it on. Everything was difficult, especially eating and swallowing. To this day, I think my throat is smaller. I have never been one to have difficulty swallowing pills, but now I do. Sometimes, out of nowhere, I seem to choke on my own saliva. Sometimes when I drink, it doesn't seem to go down "right". I have spoken with several people who have had a cervical fusion and they all say the same thing. Every single one experiences the same sensations as me. Weird. My neck mobility was difficult at first. I went to PT and it improved slightly. I just figured it would take some time to gain the flexibility back.

Now, I would like to mention one little problem that I had when I was in the hospital and that I still had weeks later. I could speak a little more than a whisper now, but it was hoarse and deep. If I tried to speak louder it hurt. At my second post-op visit with Jeff, Dr. Glazer's PA, we discussed the voice since it didn't seem like it was improving. He remarked that the hoarseness should dissipate by the next time I came, and if it hadn't, that Dr. Glazer would want me to see an ENT to investigate what the problem was. Now, let me back up a step. Do you remember the anesthesiologist that I spoke of? The "newbie" that had my blood spraying all over prior to surgery?? Well, the morning after the surgery, Saturday morning, he came into my hospital room and announced to me that I had been a "very difficult intubate" patient! He asked if I had ever been operated on before and if anyone had ever told me that I was difficult to intubate? I said, "No". He said, "Yeah, we had a helluva time and I hope you're not being operated on in the near future, but if so, you better make sure to tell the anesthesiologist!" and he left. My sister, Bob, Ben and Erica were all in the room. I think we were all speechless. WHY none of us thought to question him, or to question Dr. Glazer about this conversation the following morning when I saw him before discharge, I'll never know!!! My excuse is going to be pain and drugs, the kids, well, they're kids, Ursula, well, she wasn't there the next morning, but I do wish my husband had bothered to ask some questions. To be 100% honest, I think I was in so much pain, I really didn't care what he had to say. But I knew what I heard. So when my voice wasn't improving, I started to wonder if what he had said to me had anything to do with my current throat/voice problem? Hmmm.....the medical sleuth I can be, I started to do some searching online. OMG!! It happens again! I diagnose myself online! Seeing that Jeff had mentioned that if it didn't improve that Dr. Glazer would want me to be evaluated by an ENT, I decided to take things in my own hands and I called up the ENT who aided me with my mono - Dr. Feldman. I was able to get an appointment for 5 days later and when he walked in and said, "What's going on???” I told him the whole story. The poor guy had to practically sit in my lap to hear what I was saying. He then started to look down my throat and then said, "Ok, I need to do an endoscopy". Ok, I thought. I had no idea what that was, but ok. He told me to lean my head back and close my eyes. Then he said, "Do NOT cough, do NOT swallow, breath through your mouth only, NOT through your nose". OK, as I kept my eyes tightly closed (if I've learned anything with all of my medical experiences that I can relay to you -- ALWAYS do what the doctor says, if he/she say's "close your eyes", for God's sakes CLOSE YOUR EYES!!) and suddenly he is putting something up my nose!! And I can suddenly feel it going down my throat, my eyes start to water and I want to cough. As if he sensed it, he calmly reiterated, "Valerie, breath through your mouth. Follow me" and he started breathing through his mouth. It calmed me down and he quickly finished the exam. I gagged as he took it out. YUCK!! GROSS!! Well, that's an endoscopy!! And he verified what I had already diagnosed myself with! My right vocal cord was paralyzed! He proceeded to tell me that it either happened from the intubation or the surgery itself. He explained that in a difficult intubation, they very well could have "scraped" the vocal cord in an attempt to intubate, especially when time was of the essence. Or it could have been Dr. Glazer, as he gets really, really close to the vocal cords during a cervical fusion. However, he stated that if he had to take an educated guess, it was probably the intubation. If it were the surgeon, he felt he would have seen a little nick, but he didn't, which led him to believe it was "bruised" rather than cut. He said that although it's relatively rare, it certainly isn't unheard of. The good news was that it has 80% chance of recovering on its own and the bad news was that it could take up to a year to heal!!! And he recommended that I NOT be intubated again unless it was completely cleared up! I said, "Wait a minute - I need this spinal revision". He just looked at me and said, "Not unless this clears up!” He asked me if I had spoken to Dr. Glazer about this situation and I said "No" because I hadn't even seen Dr. Glazer yet, just Jeff. I was going to be seeing Dr. Glazer about 2 weeks later for my final post-op, so I decided to pre-empt the visit with a letter. I sat down and wrote down everything, exactly as it happened and put it in the mail. I received a voicemail days later from Dr. Glazer (he had been at a medical conference), saying he had no idea what I was talking about, because NO one had ever told HIM that I had been a difficult intubate and that we could discuss this when I was going to be seeing him a week later or call him back. He also revealed that he had a phone call in to Dr. Glidden, who was (at the time) Chief of Anesthesiology AND who was the attending during my surgery!! I decided not to call him back as this was a conversation I'd rather have in person.

Appointment day came and Dr. Glazer announced a startling comment. He said he had been so shocked by what I had said in my letter, and he was taken aback because he had absolutely no idea what I was talking about, that he immediately called and spoke with the Chief of Anesthesiology, Dr. Randy Glidden. He said that they reviewed my OR notes and NO WHERE in the notes is it stated that I was a difficult intubate!! They ended up having to review the OR notes that day and it appeared that the "newbie" anesthesiologist made an error. A grave error. The day of the surgery, I was told repeatedly that the reason my surgery was delayed by 4 hours was because there had been a "complication" in the surgery before me. Evidently, the difficult intubate was the woman before me! That "newbie" anesthesiologist got us messed up! Plus, Dr. Glazer was appalled that even if it had been me, the way in which this resident treated me was unacceptable. He said, "It's not bad enough that you WEREN'T difficult to intubate, but that he didn't treat a patient here at BIDMC with compassion". He then said that Dr. Glidden wanted to meet with me personally to apologize for the incorrect information that have been given to me. I agreed to this. He called to Dr. Glidden but in the meantime,  I was brought to another room to see a knee surgeon before meeting Dr. Glidden.

So, let's back up a bit..................c'mon, you had to have known there would yet another part to the story! Since when have I ever had things go without complication??? Ok, in the meantime going back to after the surgery and when I wrote my letter to Dr. Glazer, I had returned to my local ortho and told him that Dr. Glazer was requesting an MRI of my knees and that he was hesitant to proceed with my spinal revision surgeries without having my knees evaluated with an MRI to rule out any major problems. I hope you are sitting down for this one!! HE REFUSED!! Yep, you are reading that correctly, he refused!! His exact comment was, "All you have wrong with your knees is pseudogout. There is absolutely nothing else wrong with your knees! I am refusing the MRI because that is how confident I am that I am right!” I was aghast. I requested that he put that in writing to Dr. Glazer. Well, it just so happens that one of the doc's I worked with at South County Pediatrics was appalled that I told her this. She said, "I have never heard of a doctor ignoring the request of another physician! Why refuse an MRI? It doesn't cost him a penny; you have to pay for it". She was soooo mad, so she said, "The hell with him, Valerie. I'll write the darn script for the MRI's!!" I replied, "You will? You don't have to, I'll just call Dr. Glazer and he'll have to!" and she said, "No biggie, here you go!" and she handed me the script. So off I went for a bilateral knee MRI with a script from a pediatrician!!! That is kind of funny, except for the fact that it was that way because my own orthopedic wouldn't write it- and basically out of ego. Rather patheric, if you ask me. I arranged for the MRI's in Wakefield, RI and got the report and disc (no old-fashioned films anymore!) and managed to snag a appointment with another knee surgeon in the office next door to Dr. Glazer for the very same day as the post-op appointment in which I would be discussing my letter with Dr. Glazer. (Dr. Glazer had referrred me to this doc when I made a phone call to his office). His name was Dr. Robert Glen Davis. Now keep in my mind, "the" report was read as my having nothing wrong with my knees except osteoarthritis and some "abnormal" area's in both knees. No other explanation. All I knew was that I didn't care what the damn report said, I had knee pain and there had to be some reason - for God's sake, I knew that I wasn't crazy!

So, now....while I was waiting for Dr. Glidden, I was going to see Dr. Davis. He reviewed my report and films and said, "Wow, how did your knee's get like this and WHY do you have pseudogout at your age?" Good question. He definitely diagnosed me with pretty significant osteoarthritis in my knees, so he suggested a steroid injection in each knee. I said, "Sure." I mean anything to reduce the pain. It had gotten to the point of torture to get up in the morning, climb down stairs or get up after having sat for more than 5 minutes. Boy, those were painful injections, but within 30 minutes - the pain was simply gone. My friend and neighbor Dee came with me to that appointment that day and as we were walking to meet up with Dr. Glidden, we passed by a room and Dee said, "Valerie, they are calling you in there". We proceeded into the room where Dr. Davis was looking at my disc that I brought of my MRI's on a computer screen. In the room was Dr. Glazer, Dr. Davis and what I would presume to be two residents. Dr. Davis proceeded to tell me that he completely disagreed with the MRI report from RI and that he was confident that I had meniscal tears in both of my knees!! However, since he had just done the steroid injections, we decided that we would review it in 6 months. I didn't say a thing, but I knew this also meant I wouldn't be proceeding with revision anytime soon. I suppose that is why I didn't say anything. Hmmm.....I got to put it off just a little longer. Now the question was, was this a blessing or a curse??

From there Dee and I went and met with Dr. Glidden. He was a personable man who apologized profusely over the error that had occurred and Dee and I later agreed that he seemed nervous. We both suspected that between him and Dr. Glazer, they were probably scared to death that I was going to sue them or something. I'm not sure. The whole story DID seem sketchy to me, yet..........I really do trust Dr. Glazer and I have no reason -whatsoever- not to trust him. I can't imagine why he would involve himself in a lie, so I decided to just trust them both that this was just a horrible mistake and Dr. Glidden assured me that when I was to be operated on again for my spinal revision, that I could refuse to have a resident be on my case and I just had to request an attending instead. In fact, he told me that he himself would do it if I so chose. We left the hospital after seeing three doctors and 6 hours later - we were exhausted. I had so much to absorb in my mind. It was a very long day indeed. But.........I had no knee pain. Thank God for small miracles!