All Patients Doing Well!

Yesterday was another "eight week check up" day for John and Marian with Dr. Flinn. AND it was also surgical follow up day for me with Dr. Yu after Morton's Neuroma surgery in March.

My two CLL patients are both doing just beautifully on CAL-101. John has been in clinical trial for two years on the 27th of this month. Marian will reach her two year mark the first week of October, just before her 80th birthday! She says she feels great. And, I must tell you, she LOOKS great! We even had to remind Dr. Flinn that she's about to turn 80.

Because of the clinical trial, they are both monitored closely. They see the doctor and have bloodwork done every eight weeks. We have been able to back off the ct scans gradually. In order to participate in a trial, one must submit to the protocol. And when a drug is being studied, they are wanting data. In the beginning, they both had to have ct scans every other month. Then they were able to go every four months for scans. And more recently, they were allowed to space the scans six months apart. I'm advocating for annual scans next. John and Marian are in the extended phase of the study.

I want to be reasonable and cooperative. But I hate for them to have unnecessary radiation. There are no palpable or visible nodes. And every scan shows what we already know. Their CLL is under control. I have learned that you have to ask for individual adjustments to be made and be an advocate for yourself or, in my case, for your loved ones. Many times, reasonable adjustments are possible. But you have to initiate the conversation. Your medical care providers have many patients to see in a single day, let alone in the eight weeks between your visits. It only makes sense that patients take responsibility for initiating dialog about specific issues that are important to us. Dr. Flinn has always been caring and responsive to our concerns and questions. I am usually the assertive one (on behalf of John and Marian), and often the one with the most questions. But Dr. Flinn understands that I am simply doing my best to protect my husband and mother-in-law. I have no doubt he would do the same for his own family. If you've been following my blog at all, you already know we love Dr. Flinn and think he's the best there is. If you are within a day's drive of Nashville and have CLL, I highly recommend him.

Now for part two of this medical report. If you've been following my neuroma journey, I also got good news yesterday. Dr. Yu said the pathology for the nerves removed from my feet came back exactly what you would want to see after this procedure: "Intra and perineural fibrosis, compatible with Morton's Neuroma." This means that there was nerve damage inside the nerves. This is not something that ever goes away or improves unless the nerve is removed. I needed this surgery. Surgery is a hard decision because the diagnosis is made totally on symptoms. A neuroma doesn't show up on an x-ray. I put up with a lot of pain for a long time trying to avoid surgery. I wore orthotics in some of my shoes. I had cortisone injections. I couldn't wear most of my shoes. Forget heels, I couldn't even wear tennis shoes. I was limited to certain styles of Merrells and sandals. Orthotics allowed me to wear some flat boots during the winter. But I was very restricted in footwear and activity. This was my best shot at having normal feet again. And I have not had neuroma pain since my surgery. So Dr. Yu believes I am going to have a completely successful outcome. I just have to deal with a little more swelling and soreness until I'm completely healed from the surgery.

A few weeks ago, I had that little bump in the road after my last trip to Nashville, which I thought I had caused by overdoing it with my grandkids. Dr. Yu doesn't think I caused that. He said it sounded like a stitch abscess. And that probably would have happened regardless of my activity. At seven weeks post-surgery, he said I should have been able to pick Pax up and carry him around or go on a nature walk with Joshua. Those activities would not have caused my healed incision to open. But a stitch abscess would. A stitch abscess happens because your body rejects and tries to get rid of the foreign material rather than allowing it to dissolve inside the body. He said it can also happen because the stitch was close to the skin surface in that one spot (since the other foot did not have the same issue). Even though I never saw a stitch poke through the skin, he said that's what would have caused the little hole that opened in the stitch and drained clear liquid for a couple of days. He was glad I called for an antibiotic and thought my feet had recovered from that just fine.

At this point, he put no restrictions on my activity. He told me to do whatever I feel like doing, including a Zumba class if I want to try that. He said I can't cause damage to my foot. The consequences of overdoing it will only be soreness and a little swelling. He advised taking an anti-inflammatory before doing something vigorous and just being prepared that I might need to put my feet up afterward. But I don't have to avoid anything I want to do. He reminded me that most people's recoveries are from surgery on one foot and I had both feet done, so I might have a little longer recovery period. He said the swelling and soreness usually lasts up to three months. I will hit the three month mark in less than two weeks and I think it's going to be longer than three months for me. But knowing that doesn't mean I'm harming my feet or my chances for a successful outcome will make me less concerned about it.

Dr. Yu explained that anyone who has a neuroma will always have a neuroma. By cutting the nerve to remove it, you essentially create a new one. He told me this because I asked about stump neuroma, which I'd read about on the internet. He said that you can have a neuroma without pain if the neuroma is not on the ball of your foot or exposed to being pressured or rubbed on. He positions the cut portion of the nerve in the muscle where it will be padded and not aggravated. The reason for all of my pain was that the damaged nerve was on the bottom of the ball of my foot. He then advised me not to read about neuroma surgery on the internet. He said, "I think you'll find that the majority of people who write about it on the internet have a horror story. The people who have no problems don't normally take their experiences online." I told him that, actually, I had read a lot of positive outcomes (along with the horror stories). And that I was documenting my successful outcome as well.

He said there is also the possibility of an unsuccessful outcome when a person's body reacts to the surgery by growing a bunch of new nerves (like a clump of nerve). He said some people's bodies just do unexpected things and you can't control that. But there is nothing I could do to cause or prevent that. My body is going to do what it wants to do. And he doesn't see any indication of that in my recovery so far.

One funny thing about my visit was when I told Dr. Yu that I didn't really have the numbness I expected from having the nerve removed. I still have feeling in the area I thought would be numb. He used the cap of a pen to kind of "scrape" on the space between my third and fourth toe to see if I felt it. I said, "I feel that! It's not numb!" Then he applied the same pressure between the second and third toe and I was shocked. I said, "Oh yeah, I see what you're saying. I didn't feel it nearly as much between the third and fourth toe." But it's not something you really notice just going about your normal activities and walking around. I don't even have the marble sensation in the ball of my foot that some patients have described. Every once in a while (when my feet are swelling), I feel a tiny little lump sensation in a certain spot. But it doesn't feel like a rock or a marble. And it's not pain. And it doesn't affect my walking. I wore tennis shoes when I went on the nature walk with Joshua and didn't have any pain in my feet at all. That's why I was so surprised when I developed the stitch abscess. My foot gave me no indication that I was doing too much.

I'm excited that I can do Zumba any time I want to be brave and just do it. I may wait two more weeks, until I get back from my trip to the beach. I don't want to be dealing with any consequences that make the drive harder or limit my activity while I'm with all the kids that week. But when I get back, I will be ready to Zumba!


Blair said…
Hi there! I just wanted to let you know that your blog about your surgery experience has been extremely helpful! I live here in Nashville (and have actually seen another doctor at TOA in the past, as well as Dana Duff when I hurt my ankle last year) and have been considering surgery in both feet for my Morton's Neuroma. I am planning on scheduling surgery at the end of July/beginning of August. Thank you very much for documenting your experience and sharing it!!!!
Shari said…
Thank you for this comment, Blair! I am so glad my documentation has been helpful to you. And I wish you the all the best in your surgery and recovery. Let me know how it goes. (I get email notifications any time a comment is left on my blog.)

I still have sore feet days, but I am very pleased with my progress. I even walked on the treadmill and used the elliptical at the beach last week with no problems.

Dana Duff is amazing at cortisone injections! I've had several and tolerated all of them fine. But I felt NO pain when he injected me. I was so impressed.