No More Crutches!!

Been pretty busy lately and haven't been able to keep the blog updated on my healing. Part of the reason I am so busy is because I have been out taking photos again! I ditched the last crutch (the Smart Crutches are awesome!) and am walking great! I carry a cane with me for occasional balance, but I can go without it for the most part. It makes it possible for me to do more hiking, although a walking stick would be better.

My leg swells yet but I had fluid retention issues before surgery. Since surgery my left leg barely swells anymore, all the fluid seems to collect in the one operated on. I am guessing the trauma and swelling from surgery makes that leg an easier place for fluid to collect than the left one or something. I wear a compression stocking and that keeps it from swelling as bad. I didn't realize there were different compression stocking strengths and bought lighter ones. If I had ones with stronger compression my leg might not swell at all. The stockings I have keep it under better control than having none though, so I am happy enough with them at this point.

Now that I am healed it is easier to walk around than it was before surgery. With a straighter leg I don't have to labor so much to take a step. My husband can't stop telling me how amazing it looks to see me walking with a straight leg. Strangely though, I find I feel a certain degree of sadness about the loss of my "crooked leg". I don't want it back; I am surprised at these pangs of grief over something I hated so much, for so long. I almost, almost miss it sometimes. Isn't that strange? I definitely don't want it back! I can't express enough how much I absolutely LOVE my new, straight(er) leg. I am glad I took that before-surgery photo, it is easy to forget just how different it used to be.

Since I ditched the last crutch a couple of weeks ago I have really been getting out and taking photos like I have never been able to before. I am not completely pain free, not by a long shot. I still have problem tumors in my wrist, ankles and my hips just to mention the most severe. My knee joints are wearing out as a part of natural wear and tear, speed-ed along by MHE issues. I have more balance and don't wear out as quickly, making hikes possible again. It make such a difference in my emotional outlook to be able to get out of my tiny, dark, depressing little room and into nature somewhere. :-) I will get some photos or a video soon to show how well I am walking now.

I am finally healed enough that I feel able to discuss wrist surgery with the doctor who would be doing that. I have a lot going on and feel like surgery keeps interrupting my life, but at the same time I am incredibly grateful to have medical coverage to take care of these things. I think it feels overwhelming partly because I did go so long without medical care. Once I got coverage I had a whole laundry list to start with. Right after I got a bone doctor things like my knee suddenly got worse, overtaking the top of the list. The knee pain that led to my osteotomy started after I got insurance, while I was still trying to get through my starting line-up.

Another new thing has cropped up now too- the ankle of my newly straightened leg. The doctor says my ankle joint is finally level, like it is supposed to be, but it is bothering me now. I have some tumor growth in my ankle, making it deformed so being level might be a problem there. I am sure they will send me to an ankle specialist for that. Every area has its own specialist. Wrist is another doctor yet again. It is probably for the best that they all specialize, but it makes it difficult to have fluid care. I saw 4 or 5 different doctors before a decision was made to do the osteotomy and who would do it. It got really confusing and made it seem to take longer. Each appointment ended with me being sent to the next doctor, until I ended back up with one of them for the surgery.

It was worth the little extra wait to make sure it got done by the right person. I am so glad I had this surgery. I had some rough days, went a little stir crazy on bed rest near the end. This surgery was one of the most amazing things to ever happen to me. It was worth the rough days, the pain and the mind-numbing boredom. My only regret is that I couldn't have it done years and years ago.

Post-op Check-up

I went in for my post-op check-up today. I had hoped to see the surgeons because I have some questions, but they weren't there. I suppose it is normal to see the physician's assistant for check-ups though, the surgeon's time is much more valuable and in demand. The PA did say she would have the surgeon call me though, so it seems I can still ask him my questions.

I didn't understand my discharge instructions, but luckily I didn't do what I thought I was supposed to do. I was somehow under the impression that I should do as much as I could, just don't put any weight on my right leg. My leg has been pretty swollen though, so I have been spending almost all day and night in bed with my leg up. I went to see my therapist yesterday and stopped at a small park for some fresh air before heading home (I have been going a little stir-crazy in bed for 2 weeks now). I had planned to attend my group yesterday afternoon as well, but I just wasn't up for it. My leg was so swollen after only 2-3 hours of being up on the crutches that I couldn't see a couple of my stitches and my arms were shaking from using them to support my body weight. I'm glad I have been listening to my body rather than blindly following instructions that were incorrect and could have been harmful to me.

Me at the park after therapy. While I probably shouldn't have been up and around, I think the sunshine did me a lot of good.

Today I learned that I should actually be spending about 23 out of 24 hours each day in bed with my leg up. Sadly, I will need to keep doing this for another 2-3 weeks until the swelling goes away. I am glad to have clear instructions now though. It reduces the amount of anxiety that I experience around what I am and am not supposed to be doing. They also want to raise the level of physical therapy I participate in as an attempt to offset the level of inactivity I am forced into right now. The home physical therapist has only come once so far and they want me to be doing more than just once a week. That means I will have to be going to the clinic for therapy, but  it will be nice to get out of the house for a couple hours.

While I was at the clinic today they removed my stitches and the suture tape strips and replaced them with new suture tape strips. Well, she removed all but one of my stitches. My very top stitch was so tight it was causing pain last night so I carefully cut it and removed it myself. When she looked at it she said she could tell it was too tight and it was fine that I removed it. (What could she really do about at that point anyway?) I no longer have to keep it covered with bandages after today either. I just have these suture tape strips now and when they fall off on their own, I won't have anything on the incision at all.

Still pretty swollen after my trip to the clinic today. There were 14 stitches alternating with 13 suture tape strips. Looks really good.

I was also told today not to use the Smart Crutches I bought for myself until I am able to start putting weight on my leg. She normally loves them, but right now they don't allow me to go completely without weight bearing. They are advertised as being able to be used for non-weight bearing- a strong, healthy young man even demonstrates in the video on their website. Unfortunately for me, I don't have the upper body strength to actually pull that off. Until I am able to start trying to walk on my leg I can't use them. Other than not having the upper body strength to use them completely non-weight bearing I think they are superior crutches to the "armpit" ones.

The good news I got today is that I should be able to start putting weight on my leg (thus able to start using my new crutches again) much sooner than expected. The PA told me today that I am healing so well they are hoping that in 3-6 weeks I will start trying to walk on it a little bit. I really hope they aren't getting my hopes up for nothing here. I am not going to plan on it or even expect it. I will just keep doing my best to heal myself and let it be a nice surprise if I am promoted to weight bearing sooner.

Some more good news today is that our laptop got fixed so I can work from bed now! It is none too soon either. I have to finish a workshop on Ableism/Differently Abled Oppression and I have a couple of articles to write. I have a short non-fiction book that is almost ready to publish that I am really excited about. But none of these things could be done from bed and I my leg swells too much if I try to sit at the computer (like what happened when I wrote I Survived Surgery!). It feels good to be doing something useful again, I have been feeling like a slug doing nothing except scrolling through Facebook on my phone.

Me, happily writing this blog article on the laptop with my leg up!

The next steps from this point are buckling down to work hard in physical therapy and in  3-6 weeks I can start trying to put weight on my leg. That is when we will find out how well this thing works. It looks so good I am afraid that it won't work as well as it did before surgery. I am glad that now I can recognize that this is all just fear and anxiety trying to upset me. I don't have to let it.

I Survived Surgery!

Before surgery on the top. After surgery on the bottom. The bottom is still very swollen in this image so it might look a little different later on. Since I can't put any weight on it for 3 months I won't know for that long if my knee still works the way it is supposed to and the improvements happened that were planned for.

I went in to the hospital on Thursday March 6th to have my leg straightening surgery (technical name is "high tibial wedge osteotomy") as scheduled. Before going in to the operating room they brought in an ultrasound machine to put a catheter in the nerve in my groin area. This made my whole knee area numb, like getting a shot of Novocaine at the dentist's office. That made the whole experience a LOT less painful.

I woke up in a lot of pain, despite the nerve block. They gave me several different types of IV pain drugs but everything was making me severely nauseous. I actually threw up a couple of times later in that same day. The first 2 days were almost unbearable. The nausea was much worse than the pain and I was so miserable. Eventually, about 48 hours later and with the help of 2 anti-nausea drugs, I was able to start taking oral pain drugs. I normally take 20 mgs of Methadone for long-term pain management but in the hospital they broke it into 7.5 mgs every 8 hours. That helped ease the trauma on my stomach.

The first couple of days were rough emotionally too. As many people know, it is almost impossible to get any rest in a hospital. The lack of sleep, stress of being operated on, pain, effects of pain drugs, nausea and my own emotional struggles all conspired against me for a bit. I was at least able to explain to some of the nurses that I suffer from such severe anxiety that it can make me irrational at times. They were very understanding. I also told them straight out that I was afraid my reactions to the anxiety would get me kicked out of the hospital again. Several nurses and aides went out of their way to reassure me that wasn't going to happen this time. That made me feel a little bit better.

Saturday morning was a new day and a totally different experience from that moment on. I got some good sleep Friday night and my nausea was almost completely under control. I had some fruit and toast for breakfast that stayed down and my outlook was greatly improved. By Monday morning I was doing so well they were ready to let me go home.

I can't put any weight on my right leg for 3 months. For the first 3 weeks I have to use a Continuous Passive Motion machine for 6 hours a day. I also have a Physical Therapist coming to my house for the next several weeks. Right now I can only do things like move my foot around and slowly bend my knee. Eventually we will be working up to more difficult stuff.

Been home now for about 5 days and really starting to get antsy. I can't do much except lay down with my leg up to keep the swelling down and spend 6 hours per day in the CPM machine. Today was the first day that the swelling was down enough for me to post to the blog. Hope to write more again soon!

You can find my journey in photos here.

The Big Day Tomorrow

Well, tomorrow is the big day. I am now seriously anxious about my surgery. I have trust in the doctor and all that, but I also have a mental health condition that makes certain things more difficult for me to cope with than the average person. (I have Borderline Personality Disorder.) I also can't take traditional medications for anxiety because I have opposite effects from them, they make me paranoid and extremely anxious/agitated.

When I had my last surgery they gave me anti-anxiety medication in the IV as part of the “anesthesia cocktail”. I never imagined they would give me that so I didn't mention my inability to take that type of drug. (Now I list them as allergies). The anxiety built in me all that day in the hospital. I had a bad reaction they kicked me out of the hospital in the middle of the night some time. I wasn't given any pain medications or even crutches! It was a traumatizing experience. I have to spend several days in the hospital this time. I am afraid of having another panic attack and being kicked out again because of it.

Sometimes I feel really overwhelmed with having MHE and a serious, disabling mental illness both. I feel like when I get control of the pain in one, the other one takes over. My therapist spent the last 2 sessions I had with him helping me develop a plan for dealing with my anxiety. After our conversation I loaded some guided meditation videos onto my phone, I am bringing my therapy workbook, a list of healthy coping skills and I am going to let the hospital staff know ahead of time about my anxiety issues. On Thursday, Friday and then starting again on Monday I will also have phone access to my therapist. I leave him a message and he gets back to me as soon as he can.

I am bringing my Kindle, which has about 600 books on it besides being a tablet. I will have my smart-phone, my journal and some resources to help me cope. Already packed in my bag are my own fuzzy blanket that I really love, a stuffed Tigger to remind me to stay positive and a stuffed doll my mom made for me called a “Dammit Doll”. The Dammit Doll is designed to hit non-living things with while yelling “Dammit, dammit, dammit”. Great for stress relief! In addition to all of that, my husband and I have been working on a plan for him to help me remember to breathe deeply when I start to feel stressed. I jokingly started calling him my Lamaze coach! I wish I could take my therapist with me to the hospital but I am very grateful to have such a supportive, loving husband by my side.

About 4 days ago the stress really got to me and I cried for about half an hour. It was during the conversation with my husband afterward that I realized it isn't really the actual surgery that has me anxious. It is being in the hospital after that is making me about to panic. That was an important distinction because it let me plan accordingly. Just having that realization eased some of the anxiety.

Along with my anxiety I also feel some anticipation. My legs are fairly crooked and as a young kid my classmates used to pick on me pretty bad about it. I used to fantasize all the time as a child about having straighter legs. I would dream about being a witch (like Samantha Stevens) and casting a spell on them, of finding a genie in a lamp (like "I Dream of Jeanie") to magically fix them. Once I got to be a little older I knew that there was no magic twitch of a nose or blinking nod was going to fix things. I stopped letting myself dream about it at all then, figuring that I was never going to be able to pay for a “cosmetic” procedure. I know that my legs can never be perfectly straight but I am really excited about it being straightened even just a little bit.

Time for me to finish packing, lay down for a few hours before I head for the hospital. I probably won’t get any sleep but figure I have plenty of time to sleep during surgery! Please keep me in your thoughts. 

Surgery Scheduled

I saw Dr. Morshed on the 4th. He did another short exam and asked me if I was sure I wanted to go through with it. I am sure, although anxious, so we scheduled it for first thing in the morning March 6, 2014 at UCSF Parnassus. I am pretty nervous, this will be the most intensive procedure I have ever had done.

The plan had been originally to take the wedge out of my thigh bone, right above the knee. After doing more calculations the doctor decided it would be best if he took the wedge from the area in the photo below circled in pink. He said taking it from the femur (the thigh bone) would change the angle of my knee, which would be bad. He said taking it from the tibia (the larger lower leg bone) will keep my knee level while straightening my leg some.

The yellow triangle on the photo is where he said he will take the wedge out. He said he will also "clean up" where the purple arrow is pointing. I had a very large tumor removed from that spot when I was 14 years old. Because my skeleton hadn't completely finished forming yet, some of the tumor grew back. Lately, when I sleep wrong with pressure on that area, my leg goes painfully numb there. I think it will be nice to have that hook of bone off, I hope it relieves the painful numbness.

The area circled in blue is where I still have good cartilage cushioning for my knee. By straightening my leg the idea is that my weight will be shifted to that part of my knee. The side not circled has little to no cartilage. It is hoped that this procedure will also relieve the problems with the area circled in red (I call that my stalk of cauliflower because that is what it reminds me of). That is the area that they can't do anything with because a major nerve runs right through there. I think that nerve is part of what is causing me pain. There are tendons, nerves, veins, muscles and who knows what other soft tissue right there also. The best way I've found to describe part of the sensation there is to ask you to imagine strumming your thumb down the stings of a guitar. All of my abnormal bumps "strum" the strings of my soft tissue. It is, of course, much more painful than actually strumming a guitar. Sometimes the bumps get "caught" (like sticking your finger too far between the strings while trying to strum and not being able to get it past the next string because of that) and that is even more painful.

Dr. Morshed told me that I can expect to stay in the hospital 3-4 days, which has me anxious. None of my surgeries have ever had me spend more than one night in the hospital. I suffer from pretty severe anxiety when I am out of my comfort zone (home, work, school) for too long, and I fear this will be way too long. I'm worried about being alone in the hospital too. Being there that long, it will be too much to ask my husband to be there with me the whole time. He can't anyway, he has classes and will have to rest. I will have to work on some coping skills ahead of time with my therapist.

The doctor also told me that I am looking at a long, difficult recovery. I will be on crutches for probably 6 months. Since I have issues with my right wrist I will have to have a special crutch that has a "shelf" to put my forearm on to hold my weight up rather than my hand and wrist with a regular crutch. It looks really tricky to manage and I am really afraid of falling with crutches. I can't remember how long he said I would have to go without even touching my toes to the ground, it was either a couple weeks or a couple of months. (I know, that is a huge difference but I got a little overwhelmed by all the information he was giving me). I am used to being able to walk within a day or two of surgery. It is going to be hard, not being able to do much for myself.

One of the other things that has me anxious is that Dr. Morshed says it will be at least 6 months before I feel any relief. So, in other words, things are about to get much worse before they get better. I am no stranger to pain, but this is probably going to be worse than anything I have ever experienced before. I assume they will keep me comfortable with pain meds, but that could have an impact on my school work. Even if I am able to get back and forth to school, I am concerned that being on pain drugs could negatively impact my school performance. The doctor said I should be able to continue going to school with no problem, but we will see. If it gets too tough, I will ask them to excuse me for this semester and finish after I have healed a little.

I am also worried about my work, I do outreach and won't be able to go out for a while. I am hoping we can work something out so that I can still get my hours in without taxing my healing body too much. I am blessed to work with a couple of truly wonderful agencies and I know they won't just leave me hanging. I only work about 20 hours per month with each agency so I shouldn't miss a whole lot. Both places are flexible about where I get at least some of my monthly hours.

On Feb. 21st I go in for my "prepare" (for surgery) appointment. That morning I also have CT scans scheduled for my right wrist (and my head/sinuses). Once I have healed up enough from this surgery I will be getting ready for wrist surgery next. I am hoping that wrist surgery will make it so I can crochet again without such pain. I really miss crocheting for stress relief and the extra cash it can bring in. 

Hip pain

For a couple of weeks now my right hip has been feeling like something is "catching" when I move. When I sit it feels like something is being pulled in my groin area and it starts to ache after a while. When I am walking, if I move a certain way it feels like my hip is giving out and the pain is more in my backside. I have a moment of panic because it feels like I am going to fall. Because of how twisted and uneven my legs are, my back has started really being a problem for me as well. One of my discs is herniated along with arthritis and exposed/pinched nerves in my spine. The past 2 days my hip and my knee have felt connected, they both hurt at the same time and it feels like a string of pain goes between them at the same time.

My hips next to nonMHE hip xray (gotten off the web). The femoral necks of my hips are thicker and covered in bumps that catch on soft tissue, like tendons, nerves and veins. 

I went to a local protest against some developers today but got the time wrong and showed up about 90 minutes early. I stood around waiting for as long as I could, but ended up going home before anyone else even showed up. I just couldn't take the pain anymore. I want to cry so badly. I am used to being able to do a lot more than I can now and it is frustrating. I feel so worthless and hopeless on days like today, the pain and frustration are overwhelming.

I am also having issues with my pain medication. I have a lot of stomach trouble and can't take many things. I am prescribed 20 mgs of methadone and 20 mgs of flexiril and 500 mg of naproxen. I also use medical cannabis but it is so expensive I can't afford enough for complete relief. This is the most effective combination that I have ever been on, but the methadone is causing chaos with the rest of my body. It is a bit of a trade off, either I have pain or severe nausea for 12-18 hours to relieve it.

Besides making me feel really sick to my stomach for the next 12+ hours, it also causes me to be more dehydrated. Somehow, at the same time it also increases fluid retention in my legs (which is a chronic issue too). I have gotten so dried out from the methadone several times that I was constipated for a week, but it was regularly 3-4 days. Recently I started taking it again and my doctor gave me some natural stool softeners. They seem to help a little but not enough. I also have to deal with a severely really dry mouth. It is harder to study or even hold a conversation because of the mental cloudiness it causes. They also make me itch all over and nod off to sleep any time I sit still for a few minutes. That is really embarrassing in class and dangerous on the bus!

I see Dr. Saam Morshed at the UCSF Orthopedic Institute on Tuesday to talk about an upcoming surgery. I am going to have to mention the hip issue to him. The surgery is to straighten my right femur just above the knee to attempt to help relieve some knee pain I am having. The issue with my hip might complicate things even more (seems to be the story of my life). I really hope it doesn't, I want something to be solvable for me at least once in a while. 

I have decided that the knee and hip problems are more urgent than the right wrist issue, so I definitely want to have this wedge osteotomy surgery first. I am concerned about the straightening procedure though, it is much more complicated than the simple tumor removals I have had done in the past. I usually don't have much concern, the doctors have always done a good job and I healed very quickly. The last surgery was the most recent one though, and I healed much slower and the pain was greater than the surgeries I had years ago.

I am getting anxious to hear what the doctor(s) has to say on Tuesday. I want to get going with this already. I have been seeing doctors and getting passed around from one to the next for almost 2 years over this same issue now. Time to stop talking and start taking action. 

Why are my bones bumpy?

I was born with a rare bone disorder called Multiple Hereditary Exostoses (among many other names). Basically, instead of growing long and straight, my bones grew bumpy, twisted and with "tumors". The disorder can be a spontaneous mutation but usually is inherited, about 50% of the time. I got it from my mother, who got it from her father. Luckily, neither of my children have it. Some of my mother's siblings have it and so do a couple of my cousins. I have a moderate case, many people have much more pain and disability than I do, many have less.

The deformed bones themselves don't hurt usually, but they can damage or pinch soft tissue around them. That can cause from mild pain or tingling to severe injury that requires surgery. I started experiencing pain in about 3rd or 4th grade, and that is also when I started to notice that I was different than the other kids. I was 14 when I had my first surgery to have one of the tumors, or spurs, removed. I had 2 removed during that surgery and 8 more in several surgeries over the next 12-13 years.

For many years I had no health insurance and just had to suffer through any pain or disability that it caused. Finally a few years ago I was awarded SSI and was able to start receiving medical care again. I had another tumor removed from my inner thigh area, right about the left knee in 2010 by Dr. Richard O'Donnell at UCSF Mt. Zion.

My legs bones aren't straight, so I am pretty knock-kneed (this is fairly common in MHE). Over the years the outer part of my knee joint has worn out much faster than my inner knee cartilage. I am having a lot of pain from that and from all of the deformity to the head of my fibula (the thinner lower leg bone) lately. The doctors discussed a knee replacement but are worried that a nerve that runs along the outside of my knee in that area would be damaged, causing drop foot.

I have spent the past 2 years trying to find a doctor that could help me. It is getting more difficult and painful for me to walk (which is resulting in weight gain, which is resulting in depression) every day. I think I have finally found a doctor that can help. They want to try to straighten my leg a little bit.

So far the plan is to cut a wedge out of my femur, on the inside above my knee, and put a plate in to help hold it together. I go in to talk to the doctor again on Feb. 4, 2014 and I believe we are discussing scheduling the surgery. The only problem is I am also having trouble with my right wrist, which is deformed from the MHE.

I have been to see the wrist specialist recently as well. I will most likely be having surgery on my wrist soon too. I need to speak with all the doctors to find out which I should do first. The wrist will heal much quicker, but might be needed to use crutches for the wedge osteotomy. That is going to be a scary time for me, but hopefully it won't be as bad as it sounds!

This is a strange and scary time for me and a friend suggested I blog about it while I am experiencing it. I don't know if anyone is interested, but it might help me cope even if no one else ever reads it.