Monday, October 27, 2008

#4: Toasty

I am honored to hand out another "Under the Knife" Award to my girl Toasty over at My Inner Teen. She is up for surgery at the end of November, so let's send lots of love and healing vibes her way.

Tuesday, January 15, 2008

#3: Krishanna

I am happy to announce that Krishanna is the next recipient of our award. Here is her story:

In November 1998, I was managing a convenient store, getting ready to go back to school because I finally got a clue about what I wanted to be when I grew up. I was very active. I walked 2 or 3 miles a day, rode the city buses with no problem, exercised regularly, and so forth. After several years of working at it, I was within 30 pounds of a weight goal I had set for myself. Then I injured my back lifting a case of beer at work while I was cleaning up and stocking the walk-in cooler. Ironically, I was 11 years sober and even after all that time, booze still could still kick my butt. ;)

At first, I thought the lower back pain I was experiencing was nothing more than a muscle strain. But it lingered and continued to get worse. The pain extended from my lower back to the back of my left leg and shot down into my foot, creating needle sharp pain in the sole of my foot, combined with tingling. The big toe on my left foot went numb and the numbness began to creep over the top of my foot and up the left side of my leg to the knee. It didn't matter what I did, nothing brought no relief. I tried most over the counter pain killers, nothing touched it. Walking, sitting, standing, lying down, it all hurt.

After a week of this, I finally visited my primary care physician thinking I had sciatica. He examined me, prescribed a painkiller and a muscle relaxer and ordered no work and rest; no heavy lifting, no vigorous exercise, no nothing. Just rest. He told me to return in two or three days if it did not improve. It did not. The vicodin barely made a dent in the pain and walking was becoming increasingly difficult.

I returned 3 days later. My doctor took x-rays which suggested a herniated disk. He referred me to an orthopedic specialist and prescribed more meds for the pain with the same restrictions: no work, no heavy lifting, no vigorous exercise and rest. Preferably, bedrest.

The specialist examined me, sent me to physical therapy with restrictions. Two weeks later, the pain was unchanged, the numbness in my left foot and leg was increasing. So the specialist ordered an MRI which determined without a doubt that I had one completely ruptured disc and two bulging discs at levels L4 thru S1 in my spine. He prescribed more pain medication, no work, rest, same restrictions and referred me to a spine specialist and surgeon.

It was now December. I met with the orthopedic spine surgeon who examined me, looked at results of the MRI and agreed with the orthopedist. The surgeon told me the disc was completely ruptured and needed to come out as soon as possible.

The discectomy was scheduled for December 23, 1998.

The discectomy went off without a hitch. I was in surgery the 23rd, home on the 24th and able to make the family Christmas gathering with the help of percocet and a recliner. The horrible sciatic pain I had down my left leg was gone and the pain in my back was significantly decreased. I was hopeful.

While the pain in my back had quieted to a dull roar when sitting or lying down, walking and standing was another issue. It was very painful and got progressively worse. About a month post-op my back began to ache constantly in any position, day in and day out. Darvocet made it tolerable. I was still unable to work and still restricted in what I could do and could not do.

I started physical therapy for pain management and to build up my endurance both to pain and physical activity. I hurt more all the time. I could only walk a block or two and then I would have to rest and wait for the pain to subside to something I could bear. Sitting and lying down were the only positions that didn't cause me considerable pain. I was given a TENS unit which helped some in increasing my endurance in physical therapy and with walking and standing.

In June of 1999 an MRI indicated some instability in the same area that was operated on the previous December. More physical therapy was ordered. This continued until my physical therapist and I determined I was not getting any better. It was as good as it was going to get.

July, August and September saw me receiving Epidural Steroid Injections These injections are administered to the nerves in the area of your spine that is causing your pain. Theoretically, the combination of steroid and pain medication reduces inflammation and "blocks" the pain. I hear they work well for some people. They did very little for me.

By September, I was no better. After months of working to increase my endurance and strengthen my back, I was unable to walk more than a block or two without a rest and my back hurt 24/7.

When I saw the doctor for the follow up in October, he suggested a complete fusion of L4 thru S1 to help stabilize them and tus reduce my pain level. He stressed that there was a 40% failure rate and that my back would get no better as it was. He felt we had a good chance to get rid of most of the remaining back pain by doing a fusion. I told him I wanted to think about it.

I researched on the Internet, I talked with people who had had spinal fusions. Some were successful, some not so successful. I talked it over my boyfriend. I did more research. Meanwhile, the pain was getting worse. Darvocet was barely taking an edge off of it no matter what I did and walking and standing was excruciating.

When I went back for the follow-up with my doctor, we talked some more about it and he went over everything: the surgery, the success and failure rates, some things that could happen during the surgery, everything. I thought I was well informed. I decided to have the fusion.

I had the spinal fusion on December 12, 1999. During the surgery, my surgeon nicked the dura (the casing that surrounds the spinal cord and nerves) while removing the remains of a disc and scar tissue. Nicking the dura during surgery can cause spinal fluid to leak out, causing a variety of troubles including horrid headaches. He caught it immediately, stopping the leak with a few sutures. Other than that, the surgery went well.

Because the surgeon had nicked the dura, I was placed on complete forced bed rest for 48 hours to make sure there was no spinal fluid leaking anywhere. I was not allowed to raise my head any higher than 45%. I was hooked to a catheter and I was on a morphine pump. It was the worst 48 hours of my life. I couldn't look around, seeing the television was a challenge, I was drugged, I had tubes in both arms, I had never been catheterized before and the nurses insisted I wear these horrible devices made of plastic that filled with air and squeezed my legs every minute or so. Plus, it was infernally hot on the floor.

So when the day came that i was able to be off of bed rest, I was more than ready. The nurse came in and mercifully took me off the morphine pump and handed me a perocet. Then she removed the catheter. It felt weird but I figured that was because I had been in bed for 2 days and I had never had a catheter before. I sat for awhile and thought I needed to go to the bathroom. So I got up and shuffled over to the bathroom.

When I sat down on the toilet seat, I knew something was very wrong. I heard myself pee but I couldn't feel it. When I wiped, I couldn't feel that. When I stood up and turned to flush, I noticed I didn't feel the other side either. So I sat back down and wiped the other end and felt nothing. Indeed, I couldn't feel any of my "stuff" from my lower abdomen all the way around to the top of my lower back. The backs and the insides of my thighs were also numb, as well as my entire butt.

The nurse was waiting for me when I came out of the bathroom. I calmly told her she needed to get my doctor in there to see me STAT because I was completely numb. Sometimes, medical personnel ask the dumbest questions and she was no exception, '"What do you mean numb?" So I repeated myself and she hurried off to get the doctor.

In came a parade of doctors beginning with my surgeon, who called for neurosurgeons, who called for a urologist. Each of them poked at my numb buns and thighs and stuff with sharp implements, parroting what I told them in the form of questions. "You can't feel that?", "You only feel a bit of pressure?", "You feel like you are sitting on a saddle?" It was really annoying. 'No, dolt, I am only saying that to entertain you', is what I felt like saying. Duh.

When they were all done examining me, the neurologist said I had saddle anesthesia and parasthesia. He said he didn't know when or if it would repair itself. It could be in 3 days or it could be 3 years or more. Time would tell. But I could take heart because he had a male patient who hurt his back in a parachuting accident and had lost all feeling in his penis and after 8 weeks some of his feeling was returning. I told the good neurosurgeon that I didn't care about his patient's penis. I was concerned with MY "stuff" and telling me about some guys numb dork wasn't helpful in the slightest. He bade me a quick, curt but polite goodbye and went on his way.

The next day I underwent a Myleogram and CT Scan to rule out the possibility of any spinal fluid leakage and to check for abnormalities. They said they found nothing unusual or out of the ordinary for four days post-op. The day after that, I was released and sent home to recuperate.

Some of the numbness had dissipated by the time I was sprung from the hospital but now I felt like I had a giant wedgie 24/7. Sometimes it felt like I was carrying around a tennis ball in my buns and at a year post-op, I still felt that way. These days it feels like a wedgie, most days. I can feel myself pee now and I am accustomed to the pressure changes in my numb buns that tell what time it is. Still, it's not always easy to live with a broken butt.

The bone grafts on the fusion filled in. None of my doctors could give me any sort of a time frame about whether or not the nerve damage I sustained during surgery would correct itself. It would or it wouldn't. Nerves grow and regenerate about a millimeter a month depending on the extent of the damage or trauma, if they ever regenerate at all, and it is nearly impossible to measure the extent of damage. All the research I have done also indicated that as well.

Did the fusion take care of the pack back pain? To a large extent, yes. The pain in my lower back is tolerable most of the time with medication. The TENS unit still helps in tandem with the medications and hot baths. However, nothing helps the walking and standing. I can walk about a block or two before the pain drives me to find a place to sit down and rest. I have horrible muscle spasms and twitching in my left leg that wake me and sometimes keep me up at night.

Am I in worse shape before the surgeries? I guess that depends on what your perceptions are. I don't think so. I could not have lived in the pain I was living in prior to the surgeries, even before the last one. I have some hope that although this may be as good as it gets, I am still not living in excruciating pain and I'll be able to work again and make a good living for myself and my loved ones. As bad as I think it is, there are others who are not as fortunate or lucky as me.

Art was and continues to be a huge part of my healing process. It helps me feel more centered and serene and continues to sustain me through challenges and changes. It has allowed me to take the small steps that were necessary for me to reconnect with the world after my injury. The more I create; I become more familiar with my art and the creative process. If I had not had my visual art to retreat to for solace and expression in the months when I was unable to sit and write, I can't imagine I would have been able to make the strides in healing and confidence I now have in my work and in my new life without art.

Without having gone “Under the Knife”, I would not have been able to do what I love to do: write and create art.

Krishanna Spencer | The Altered Artist

Art That Doesn't Match Your Couch

Tuesday, November 6, 2007

#2: Vonda

Vonda is the next recipient of the Under the Knife Award. She was given the award by Coalminer Heather.

Vonda's story:

It had been a routine yearly appointment back in 1999 with my gyn and he found a tumor on my right ovary. After a couple of months and several opinions, the Doc felt like the tumor needed to be removed. It was supposed to be a normal laparoscopy but I ended up needing a laparotomy which took weeks to heal from. After the surgery, my Dr. told me I had had severe endometriosis although I had never had any pain. He informed me it was one of the worst cases he had ever seen and if it had not been taken care of when it did, he would have had to reconstruct my colon. But the worst news he gave me was that having children may not be possible as well as the endometriosis would likely return. I was single at the time and devastated at this news as my hopes of becoming a Mom were dashed.

But God had a different plan. In 2005 I married the love of my life and with a huge move to Germany with the Air Force we decided to wait until we got all settled to start trying for a baby. I had told my husband before we even got married that the chances of having a baby may be slim but he was absolutely precious and told me that if we NEVER had children, he wanted to spend the rest of his life with me. We started trying for a baby in February 2006 and got pregnant in June 2006 and our beautiful baby girl was born in March 2007. I ended up having to have a c-section which ended up being a huge blessing because the Dr. was able to go in and clean up some of the scar tissue from the endometriosis surgery as well as tell me that the endo had NOT returned. We were thrilled!!! Because we are older, we also decided to wait only 6 months before trying for another baby. So when our precious baby girl turned 6 months in September, we started trying and we got pregnant immediately! I am now 10 weeks along in my pregnancy and we are due in June. We are just thrilled that God has blessed us so very much! My anguish was between 1999-2006 in not knowing if the endo had returned as it is hard to pin-point or if the endo would do so much damage that it would cause infertility. I know our story could have turned out so very different and it could have taken us years to even get pregnant or we could still be trying but we are so grateful to God for His grace!

Vonda L.

#1: Coal Miner's Granddaughter

Congratulations to Heather at Coal Miner's Granddaughter! She has been awarded the very first Under the Knife Award.

Here is Heather's story, taken from her site:

Tyler and I have been trying to get pregnant since January, 2001, with no success. At the end of June, 2002, on day 54 of one of my cycles with a negative pregnancy test and no period in sight, I called Dr. Ceana Nezhat on the recommendation of a friend. After fasting insulin, LH, FSH, and glucose tolerance blood tests, as well as a vaginal sonogram, he diagnosed me with PCOS. At first, I was relieved because now I had an answer to why I wasn’t able to get pregnant. After July, 2002, surgery to remove the ovarian cysts and endometriosis (yep, got that, too!), and starting glucophage the next month, I expected to conceive with three to six months. Boy was I wrong.

PCOS has been a very uncomfortable, disturbing roller coaster ride. We are all told in our sex ed classes that it takes two people to create a new life. Sex ed class was wrong. It actually takes the wife, the husband, the fertility doctor, the phlebotomist, the numerous lab technicians, and the nurses. It takes a team of about 15 with all of them knowing when you’re going to have intercourse (not sex, because they are two different things), how big your follicles are, and what your LH and FSH levels are. It’s invasive, even without the scalpel and needles, maddening, and completely lacking in spontaneity. Days 10, 12, 14, and 16 are the days to have intercourse and you don’t want to overdo it because you’ll lower your husband’s sperm count.

Not only is my private life part of doctor’s office conversation, but my usual month consisted of a vaginal sonogram and bloodwork on day 2, injections on days 3 through 8, sonogram and bloodwork again on days 10 and 11, more injections on days 10 and 11, and insemination on day 12. This doesn’t even include the daily struggle with what I eat, making sure that what goes into my mouth isn’t going to raise insulin levels, and hormone-induced hot flashes. For two and a half years, I had all the symptoms of pregnancy (nausea, hot-flashes, headaches, sore breasts, etc.) without the end-result of a little bundle of joy.

Well, that has finally changed. In January, 2005, we tried IUI with Follistim again. I was inseminated on Friday, January 28th and took a pregnancy test on Thursday, February 10th with positive results. I nearly fell over. After four years of negative pregnancy tests, here was one telling me “Pregnant.” The doctor’s blood test the next day confirmed it and we told our parents and Tyler’s brother and sister-in-law. We waited until March to announce it to friends and family because we wanted to see the heartbeat. And, guess what? We were pregnant with twins! As of this writing our beautiful twins are doing great! I continued to take 1,000 mg of glucophage until about week 30 of the pregnancy and the 81 mg baby aspirin until week 33. Week 34 dawned with high blood pressure (pregnancy-induced hypertension) and I spent three days in the hospital before they induced labor because of the drop in my blood platelets. I stayed on the blood pressure medication for six weeks after giving birth until my blood pressure equalized and lowered on its own. I am now off it.

Six months after I weaned the twins, just after their first birthday, we got quite a surprise. I was pregnant again! This time, just after taking metformin for three months, my body had figured out what to do on its own. Our third child, a little boy, is as of this writing two months old and getting along great with his 21-month-old twin siblings. What a ride it's been!

The most difficult aspect of being infertile is the fact that others around you are having children when you are not. Seeing a pink or blue bow on a mailbox was sure to upset me and I tended to leave the room when a commercial came on TV that had anything to do with pregnancy or pregnant women. Friends and family members became pregnant and gave birth in the last four years and I smiled through it all until I left the hospital/baby shower and returned home. That’s when the tears started. The worst was the insensitive friend who told me that her pregnancy was a mistake and that she was “so fertile.” That one sent me into a crying/yelling fit. I despised Mothers’ Day and hearing how my friends received gifts from their children. Mothers’ Day is the worst holiday for the infertile. You start to feel defective and less than female and I even felt like a failure as a woman. People told me not to feel this way but it was rather difficult not to.

If you are uncomfortable going to a baby shower, DON’T GO! If you don’t want to hear about your friend’s Mothers’ Day celebration, TELL HER! And if the insensitive friend/family member, whom you haven’t seen in a while asks, “So, why don’t you two have any kids?” tell them, point blank, “I’m infertile. Any other inappropriate questions you’d like to ask?” This reply is guaranteed to make them realize how insensitive their question was. Don’t pussyfoot around the subject! Let people know it hurts and if they can’t deal with your reactions, then you don’t need that added stress in your life!

The final severe blow is realizing that I’ve lived with this most of my life and it wasn’t until I was 30 that a doctor could tell me I had PCOS. All those years I had irregular periods I was told that was just part of being a woman. Bullcrap! And I guess that’s also the explanation for the weight gain and acne? I’d like to take the lot of OB/GYNs (particularly the three I put up with prior to finding Dr. Nezhat) in this country and string them up by their stirrups. It’s insane that only a handful of fertility specialists/endocrinologists in this country can understand and diagnose this syndrome. Vaginal sonograms and hormone/lipid/glucose/insulin bloodwork should be standard fare for all routine gynecological visits, along with pap smears. I urge every woman who reads this site and recognizes the symptoms in herself to get checked out and get educated! (OK, deep breath, off my soapbox now.)

Finally, I want to say that I love all of you, friends and family, and to thank you for putting up with my ups and downs. You held me up when I couldn’t get pregnant and you’re still holding me even though we’ve succeeded. I love you all! For those of you who have found my humble page and are still trying, DO NOT GIVE UP HOPE! If I can make it, I know you can. I went from committed sugar junkie-“you’re not sticking me with any needles”-crying-basket case, to anti-sugar-able to stick myself-smiling-pregnant woman, proud Mom of twins. And, if you try everything and nothing works, ADOPT! Adoption is a wonderful thing that we are considering following through with even though we've had two of our own!

I have included below the links to three pictures from my surgery and links to Web sites that have helped me. If you are at all squeamish, I recommend that you not click on the picture links. I have included the pictures to simply help further the PCOS information included here.

Click here to view the ovarian cyst.
Click here to view endometriosis.
Click here to view the ovary after the cysts have been burned off.