Monday, February 22, 2010

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!! ;)

Thursday, February 11, 2010

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.

Tuesday, February 2, 2010

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?