Medical History - Strange but True

OK, I finally made an appointment to see my new doctor. I have to, for pre-op for my next 2 surgeries and I need to talk to him about my blood pressure. My pain specialist gave me a patch RX to wear, to help with my pins and needles feeling go away. Unfortunately, even on double the dose I still feel on edge and by the end of the day my legs twitch uncontrollably. The RX could drop my blood pressure and I'm already on blood pressure medicine, so I really have to watch it. So far, so good though, I haven't noticed that side effect. So, I thought I should go over my medical history, a synopsis, just to help him out. I really doubt he will take the time to read my 3" thick medical file before he sees me for 10 minutes next week.

So here it goes...

Surgeries:
Gastric bypass
Right Nephrectomy (kidney removal)
Bladder Sling
Hysterectomy
Lithotripsy (water blast kidney stones) (4 times)
Hydroplasia (bladder enlargement, to help with interstitial cystitis) (2 times)
Lateral Release left knee (cut in the muscle to release the kneecap from pulling)
Rhizotomy in right and left low back (burning of the nerves to alleviate pain)
Gall Bladder removal
Cyst removal left foot
Bunion Surgery and cyst removal left foot
Removal of hardware in left foot and placement of pins left foot
Removal of pins and placement of external fixator left foot
Removal of external fixator and placement of a plate left foot
Removal of seismoid bones, bone graft, removal of old plate an screws, addition of
new plate and screws left foot
Removal of old plate again to repair broken joint, addition of 2 screws and bone graft to help promote healing left foot

Upcoming: Nerve resection left foot
Hydroplasia
*possible spinal chord stimulator trial, after these surgeries if still having pain

Medical Issues:
Lots of allergies to RX drugs (Penicillan, Cephalexin, Rocefin, Sulpha, Amitryptaline, Tagaderm, Syn Visc, Nubain, Nalfon)
High Blood Pressure
Restless Leg Syndrome
Interstitial Cystitis
Fybromyalgia
Sleep Apnea and Diabetes (in remission since bypass Woo-Hoo)
Nueropathy
Asthma
Irritable Bowel Syndrome
Gastroparesis
Insomnia
Hypotonic Bladder
Anemia

Complications that have arisen from past surgeries...Take note! This could happen to you too! Beware! Get informed!

Gastroparesis - After my gall bladder slowed down to a halt and caused me excruciating pain for a while it was removed. I still have pain, up underneath my right ribs, sometimes it's unbearable. My gastroenterologist at Virginia Mason thinks that maybe I have some risidual sludge in my ducts that need to be cleaned out. With my surgical travesties he is not in any hurry to do this. After I start getting injections in my spine, this pain begins to go away, maybe it was just nerves. I don't know, but here is what happened after my gall bladder went KAPUT!

Several months after this surgery, I started to throw up several times a day. My food was not digesting and would come back out after I ate. It took 2 years and several tests and doctors later, before a young intern finally diagnosed me with gastroparesis. First my gall bladder, now my stomach, had quit working. The muscle was not contracting and couldn't push my food through to be digested. So the food just backed up in my stomach until it came out. They said I had 2 choices. They could fit me with a gastric pacemaker, to stimulate muscle contractions, OR I could get a gastric bypass to shrink the stomach so that the muscle was smaller and could contract easier. They did not want to do the pacemaker because it would affect x-ray's, MRI's and many other tests that I may need in my future. At this particular time I had diabetes, high blood pressure and several other problems. I was on 17 different prescriptons! We decided that the bypass would help with my other issues, so that was the better option. Simple, 3 days at the most in the hospital and then I'd be home, but recovery would be 6 weeks or more. I was teaching first grade and decided to get the surgery before Thanksgiving, so that I would be off through Christmas and back for the new year. Yeah, that didn't happen.

I went in for the surgery, and in the middle of the night some of my staples popped. I was in so much pain. They took me in for some tests and realized the problem immediately,and they rushed me back into surgery. I ended up in the Intensive Care unit for 17 days, in Seattle, away from my family. I missed Thanksgiving. My mom, bless her heart, stayed with me the entire time. It must have been hard on her too. I know this past year when my oldest daughter had to go to the hospital and get a catheter in for a week it was really hard on me! She was in so much pain, and there was nothing I could do. I had never felt so helpless in my life. I thought I was a pretty strong person, until that happened. Of course I was dealing with my own problems too, but still, it made me feel so awful! I don't ever want to see my kids suffer again. It's too painful.

Anyway, after the 17 days, and then a couple more weeks in general hospital population they sent me home, with 2 drains coming out of my stomach to help relieve the pressure in my stomach from the complications that arose from the staples that popped. I thank God that I don't remember that entire month. There are several days that are seared in my mind, I won't go into more details, but it was a very unpleasant experience. I did have a group of interns that were fantastic though. They tested me and treated me for a month, and nursed me back to life. They were so determined to get me well. I know that my mom sent them a couple of gift baskets and cards as a thank you. My recovery was way more than 6 weeks, but I'm alive, and very grateful to the providers at Virginia Mason, who worked together to fix me up. They truly deserve the award they recieved for being one of the top 5%best hospitals in our nation. Everyone there works together for the good of the patient, and they are not self serving or controlled by HMO garbage, or if they are, I have not seen that. I recommend Virgina Mason to anyone suffering from an ailment that is not improving. Please, take time for a second opinion, it's important for your own health and self-preservation.

Bladder sling - caused my bladder to be hypotensive. It quit contracting (notice any patterns - several organs slowing down to a halt). The bladder sling also changed the angle of my ureters that lead to my kidneys. After this surgery, I was completely unable to go to the bathroom (pee) on my own. After 9 weeks, they taught me how to catheterize myself. I still have to do this 3-4 times each day. When the surgery changed the angle of my ureters, I began having reflux back into my kidneys. The constant catheterization caused many urinary tract infections which quickly became kidney infections as the infected urine backed up into my kidneys. I was hospitalized 6 times the first year after my bladder sling. The constant pylonephritis (kidney infections) caused my right kidney to shrink and quit producing eurethropointen. This poor kidney hurt constantly, as it was repeatly refilled with urine. It HURT all the time! Eventually I was hospitalized for a liver problem and during this 10 day stay I missed my high school reunion and a cruise to Canada, and at the end of the stay they removed my poor little kidney. My back pain went away! Now I just have to worry about getting another kidney stone in my left kidney, if it is not taken care of immediately I could end up on dialysis.

Watch Out! Before you have a bladder sling, have a procedure called urodynamic testing. This is a very embarrasing and uncomfortable test (I had it twice, getting a second opinion on why I could no longer go pee without catheterizing), but it is also very informative. I was told that I should never have had a bladder sling put in without this test. The test would have revealed my hypotonic bladder and given pause, I may have reconsidered this surgery. Now I'm told that if I have the bladder sling reversed, I will not only begin to leak again, but my bladder still would not go back to normal. I will have to catheterize for the rest of my life now. I am finally able to void a little on my own, but my bladder doesn't empty completely without a catheter and now I have interstitial cystitis which is when your body quits producing the lining in your bladder (another pattern - no more production of fluids). Whenever my bladder starts to fill I get excruciating cramps in it and the urine just eats away at my bladder wall until I get it out of my body. This is another unbearably uncomfortable problem, but it is not connected with the hypotonic bladder, just another fun issue to deal with.


Bunionectomy - This has been really fun, one seeminly simple procedure has caused a miriad of problems from which have stemmed 6 more foot surgeries in attempt to fix the problem that arose from the first surgery. To begin with I had a cyst on my left foot. My local podiatrist injected it with cortisone, in attempt to shrink it. A week later, it hurt like crazy. He decided to remove it. So I had my first foot surgery on my left foot to remove a cyst. A few weeks after the surgery the cyst came back. It's located below my ankle, and when I wear shoes, it puts pressure on the cyst. So he looked at it again and decided to remove it a second time. I also had a bunion on my big left toe (I also have one on the right, but we aren't addressing that). We decided to remove the bunion at the same time he removed the cyst. So I went in, late December for this second surgery on my left foot. The plan was to have the surgery during Christmas break and then go back to work, teaching first grade early January. Unfortunately, I haven't been able to work since the second surgery...that was in 2005.

For some unknown reason, when the podiatrist removed the excess bone from my big left toe, straightened out the toe and held it in place with a screw, my body had a massive rejection. Several weeks after the bunionectomy my foot still hurt like crazy. The doctor said that some people have a rejection of the screw because it is a foreign body. So we scheduled a third foot surgery to remove the screw and hopefully eliminate my pain. What a surprise it was to wake up from surgery and find 3" pins sticking out of my foot! Turns out, that the screw was so foreign in my body that it actually disintigrated my bone! My toe lost about 1/2" of bone! When the bone disintigrated at the base of my big toe, there was nothing to hold that bone to the metatarsals below. So all of those bones broke too. So my podiatrist put the pins into my foot, to hold the bones together while they healed. A week after the surgery and for several weeks later, I would go to see my podiatrist, he would take an x-ray and he reassured me that my bones were healing. I kept telling him that my foot hurt even more, but he just reassured me even more that the x-rays showed everything to be normal. He never showed me the x-rays. This was after my bladder sling and while I was suffering from my bladder/kidney problems. I had started to go to a specialist at Virginia Mason in Seattle, WA about my bladder and kidneys. On the way to one of these appointments, I called to see if I could also see an orthopedist about my foot. Luckily I could. I went to see an orthopedist after my kidney specialist. He immediately took x-rays and showed them to me. Boy was I shocked to see that the pins had slipped through my bones and several of the bones had moved and were laying criss cross over each other in my poor foot. How could my podiatrist in Yakima tell me all looked good, when this was going on? I never went back to the podiatrist in Yakima. I pray that my orthopedist doesn't retire before he fixes me foot.

So I'm scheduled for my fourth foot surgery, to remove the pins. Then he packs bone graft in between the broken bones to promote healing and adds an external fixator to the outside of my foot. I have 2 huge screws sticking out of the right side of my left foot now. My toe has shrunk an inch! Twice a day, I'm supposed to turn this wrench that I attach to a screw on the external fixator. This should pull the bone apart ever so slightly, in hopes of relengthening my toe. New bone is supposed to fill in as the screw moves ever so slightly each day. Good theory, but I only regained 3.8mm of length by the time my new orthopedist determined that the new screws were irritating my foot too much since they too were a foregin body. So back to surgery I went again, but this time I actually left in a cast! He put a plate and several screws over my fragile toe bones to hold them together. These five surgeries kept me in a wheelchair for about 9 months. Then I slowly was able to try and walk...again. Not normally however. The two cyst surgeries left a lot of scar tissue below my ankle. Now I have some entrapped nerves on the left side of my foot, and a plate on the right side of my left foot. It is very difficult to walk and any pressure on those nerves sends shocking pain up through my toes. I am forced to wear slippers or nothing at all, to help relieve the pain from walking.
This causes problems with my knees (not new problems, just more active problems).

I'm told by 2 different doctors that I have arthritis in my knees and my body has quit producing the joint juice that prevents your kneecap from rubbing against the bones below it. They say I will need knee replacements, but I'm too young. One gives me a leg brace and says, quit using stairs for the rest of your life to save your knees. He hopes that the brace will prevent my knee from moving and allow it time to heal and hopefully start reproducing that vital fluid that prevents my knees from grinding. At one point I had this full leg brace, a cast on my left foot and an I.V. (midline) put into my arm so that I could give myself an I.V. at home to help me get rid of another kidney infection. I was beginning to be a mess. By the time I got my external fixator, I gave up on the full leg brace. I wasn't walking anyway. Eventually I went back to Virginia Mason and that doctor started giving me cortisone injections first, then later syn visc injections in my knees, hoping to stimulate the rebuilding of fluid around my knees. Spring 2009 I had an allergic reaction to the syn visc. My knees tripled in size and I could not walk, it hurt so much. I went to the local ER and they said that only an orthopedist could drain my knees and that one was not available for me. They advised me to go home and wait until the swelling went down on it's own. Yakima dr.s are SO SMART (NOT)! An allergic reaction like that does not go away on its own. Syn visc injections take a 3 week time frame. Same time, each week, you go in for a shot for three weeks. The following week we went back to Seattle for my scheduled injection. The doctor took one look at me and said I was having an allergic reaction and that we would not use syn visc anymore. He drained both knees and injected them with cortisone to help decrease the swelling. I felt much better after that, but now I wonder, how much longer can I use these poor knees without the syn visc. It actually decreased the grinding and swelling for a while. We'll deal with the knees a little more later. For now, they will just grind and swell like before, while I deal with my foot some more.

A year after my 5th left foot surgery, I was still having a lot of pain in that big toe joint and in those entrapped nerves on my left foot. My doctor said, he would not do anything until it had been at least a year post my last surgery. He did x-ray my foot one afternoon and found that the screws in my toe were loose and so the plate was moving, which is what was causing my pain. I also had a lot of pain below my big toe on the pad of my foot. So back for surgery number 6. This time to add more bone grafts, add a special formed plate to my bone, and new screws, and remove the seismoid bones below my big toe, to help alleviate the pain in the padding of my foot.

Of course, the entrapped nerves are still a problem and the new plate is non-flexible. It was specially formed to fit over the bone of the big left toe. Unfortunately, my big left toe was not "normal" since it shrunk 1" and the joint was not healing properly. So, as I healed and began to walk again, when I walked, the tip of my toe would bend just enough to hit this new plate causing more pain when walking. I've had shoes made with special soles to help me walk, I've bought expensive tennis shoes that did not have a seam where my big toe joint was, so I didn't have extra pressure on this area, yet I still could not wear them very often because the entrapped nerves were so painful. I'm sent to a pain specialist in Yakima(finally) to help me figure out how to get off of the pain medicine I've been on for almost 5 years now. It takes 8 months to get in! Once I'm in, I find out that I have arthritis in my back, fibromyalgia and a degenerative spinal disorder.I'm not even 40 and already I've shrunk one inch! This is getting ridiculous! After several x-rays, a nerve conduction study, an MRI, a consult with a Neurologist and a Psychiatrist I find out that I may be a candidate for a spinal chord stimulator trial. They would attach a battery pack and lead wires to nerves along my spine to send little impulses to my brain before pain signals can reach my brain. They think this may help my entrapped nerves. But it may not work either. With my history, I need to realize that it may not help at all. I'm told that I need to get off of or reduce the amount of pain medicine I'm on before we can consider this procdure anyway. No worries, not to wild about this one, especially since it is in my spine! I'm afraid it could paralyze me, and look for an alternative. In the meantime my arthritis of the spine is addressed and I have several medial branch blocks to try and lubricate the sheaths around my inflammed nerves along my spine. Eventually I have a rhizotomy on the left and right low back. This burns the nerves temporarily (about a year)so that the feelings they carried disappear. This was another very uncomfortable procedure, but it worked, and my low back pain is gone. Now if I could get the burning pain out of my neck and stop my arms and legs from going numb while I sit, stand or lie in certain positions I will be on my way to recovery! Right? Yeah, right!

That brings us up to my most recent foot surgery, number 8. My orthopedist had me do a bone scan of my left foot. It is supposed to "light up" any problems that I'm having as my bones are healing. The plate in my foot really hurts! The bone scan reveals that my big toe joint is disjoined once again...broken underneath this plate. So we go back for another surgery to remove the old plate, add more bone graft and put in 2 more screws to hold this joint together. It's been 9 weeks since that surgery. I'm finally walking again, but now my right knee has torn cartilidge in it and I have bursitis in my right hip making it very painful to stand or walk even short distances. I am off of pain medicine, but my pain specialist said he would rather have my orthopedist try and remove the entrapped nerves to stop the pain, rather than try and put a bandaid (temporary fix) on it with a spinal chord stimulator. The nerve resection does not sound fun and may not eliminate my pain, but I'd rather risk my foot than my spine. So, I'm waiting for the nerve resection to be scheduled. This time, my orthopedist will open my foot, find the entrapped nerves, follow the nerves up until they are healthy, go a little above the healthy nerve and cut out the entrapped part. Then he will drill holes into my bone and stuff the nerves into the holes so that they don't regrow back together and leave me with the same problem. Again, I won't be able to walk, but I hope it will resolve the pain of walking and wearing shoes. If not, I guess I can try the spinal chord stimulator, but that will be a way off. Besides, the worst is over, right?

Not sure about my right knee. My knee orthopedist will probably send me for an MRI to confirm that the cartilidge is torn. Then, he may try to remove the broken cartilidge, if I'm in too much pain, but he really doesn't want to leave me helpless and in a wheelchair. That's a nice sentiment, but my goal is to eliminate as much pain as I can. Without pain medicine I am living on Alleve or Advil and just waiting for my liver to fail again. If they can't fix what the problem is, I don't know that I can live with this pain, it is so painful to walk or bend that right knee...will these problems never end?