Sunday Stroke Survival: Ugh! My Doctor Rounds

I've spent the last several weeks doing my regular doctor rounds. As I've said previously here, it's important to have all your doctors (your heealth care team) on the same page.

What happened at Emory a month ago caused a major hiccup in my health care plan and numerous missed appointments. They had to be updated. I've had medicine adjusted, discontinued and added. Who wants drug interactions thrown into the mix? A seizure and an undignosed head injury were just the tip of the iceberg in the realm of neurosurgery and neurology that they needed to know. But it effects all my other doctors too. My heart stopping was in the realm of my cardiologist, but my PCP needed to know this too. In fact, my PCP needed to know ALL of it because he's my ring leader and clearing house for everything medical. Even my podiatrist got updated because now with the low heart rates and blood pressure, I have poor circulation to my feet on top of my neuropathy in my feet. A double whammy for possible complication to pressure sores caused by my AFO.

They are my team and I'm at the center for the best possible outcome for me. This is not only deals with the doctors but their nurses as well. By everyone being on the same page, they can make informed decisions. For example, I really need to have my cancerous tumor in my thyroid area removed. But I have to heal up from my baclofen pump removal and the infection that started it all. This means contact with my neurosurgeon through my PCP or directly. My neurologist comes into play at this point because he's not only juggling my post strokes care, the fact I no longer have a baclofen pump, and the spasticity has returned with a vengeance, but also my seizure.  I have them under control and stable before I can even think about having surgery. Then, the cardiologist into play because my heart stopped. I've also got  three out of four leaky valves in my heart, unstable angina, been in heart failure, paradoxical blood pressures inside my heart vs my whole body, and worsen plaque in my carotids. It takes the whole team weighing in on a surgery and follow up treatments for my cancer.

While I agree with this team approach, I just want the cancer removed and go on with my life. I feel like Damocles' sword is hanging over my head. Can you blame me?

So the timeline looks like this. End of May they found the tumor.The beginning of July, I was preparing for this cancer surgery. It's September now. Neurology- I have to be clear and stabilized on seizure meds (at least a month).  Plus be off my blood thinners for at least 7 days which increases my likilihood of having yet another stroke by 75%.
Neurosurgeon- At least 8 weeks after pump removal. I'm now on week 7. Another week to go.
Cardiology- Have to be off blood thinners for 7 days and determine how to keep my heart beating during surgery since I can't take my atenenol nor my omega3 which reduces my cholesterol (at least two weeks). Will being off my blood thinner and omega 3 increase the likelihood of the plaque breaking loose thereby having another stroke or my lungs causing further complications.

It's complicated. So maybe by the beginning of October, I can be cleared for the cancer removal. I'm still hoping it hasn't spread by then. It's the luck of the Irish dampened by Murphy's Law.

Nothing is impossible.

Sunday Stroke Survival: Botox Again and the Benefit of a Teamwork Approach

Had my usual round of Botox injections last week. Still at 400CCs of the poison for my spasticity. My hopes of doing away with them entirely with dry needling is still a distant hope. There's just too much high tone in the muscles to do without it totally yet.

In talking with most of the stroke survivors I know, they complain that their neurologists or therapists are useless. Offering little or no help at all. I'm happy to say that I cannot relate to this.

 Part is due to, I believe, is God's blessing and part in my attitude of looking at care/recovery providers as employees. If you have a medical provider that is not on the same page as you are in your recovery, why are you paying them. Yes, even if you are on Medicare or State Assistance, you are still paying them with your tax dollars. Now if you are in a small town, you may not have a choice, but where I am there are four or five of each specialty to choose from. Even if there only two, there is the lesser of two evils in a choice. Keep searching for a health care provider who thinks that it is possible to recover. That's what you really want, isn't it? I know I do.

I've often sung the praises of my neurology and therapy teams here on this blog. They believe like I do that nothing is impossible. They show they care about me and listen to what I have to say. This is important. It's called teamwork. Everyone is on the same page to get Jo to recover as much as possible. So what if my brain is telling the muscles to move in the wrong way. How do we fix it? How do we make it behave like it should? What can each one of us do to have a successful outcome? When I'm with my doctors or therapists (in this case) THIS is what we are talking about. When one of us hears something new, we bounce possibilities around. This is what I expect from my health care team and will accept nothing less, and why should I? Get on the same page or get out. Isn't this the way it should be?

This time around we had a change up. I asked both my therapist and my neurologist if the other could be present at my Botox session. Even though doctors get reports on their patients in therapy, it's not always the same as seeing it. My doctor was curious about dry needling because she hadn't heard of it before I started talking to her about it the beginning of this year. My therapist had never seen EMG driven needles for Botox before. So both were curious.

Shameless plug

My therapist is also supposed to make marketing calls on doctors to boost referrals for his company also. I understand the marketing aspects companies can demand and have often discussed this with my therapists not to mention achievable goals or progress for patients for insurance companies to keep patients on the roster. It pays to think outside the box when dealing with paperwork. It can cause them to pull most caregivers' hair out.

For me, being able to hold and carry things with my affected arm is a positive achieved goal, even though it is still not voluntarily mobile. For me, it's a huge achievement. To have limited control to do that is a giant leap forward and I can do it at will now almost all the time.

So my therapist marked the time of my appointment as a marketing call, but I benefited from it greatly. My therapist was able to discuss what he was doing with me and goals that he'd like to work on in the coming months. My doctor bounced ideas off him in order to hit the right spots with the Botox to make it possible.

While previously the main concentration of spasticity in my arm was in my upper bicep and pectoral muscles, the dynamics have changed with the dry needling. It is now the lower bicep and forearm that is the most spastic. The upper bicep and pectoral muscles have shut down in spastic movement. So guess where most of the injections took place. You got it.

Now, I know I'm extremely fortunate to get the meeting of the minds for my benefit. It all comes from the approach and being able to look at a problem from outside the normal. I make a point of surrounding myself with the outside-the-box thinking folks. Not so far out of left field to be truly strange, just a little avant garde. So who won? All of us. The neurologist learned first hand how to help her patients. The therapist was able to get a new referral source and learned more about patients having Botox. And lastly me, everyone is on the same page as far as goals and procedures for my benefit. It's a team effort.

If your doctor or other medical personnel are not working for you, find ways to work in your benefit. If you can't, replace them. Don't you deserve the best possible outcome? Can I get a "HELL Yeah!"? It may not happen overnight. For me, it took six months worth of schedule juggling to make it happen. But I think it was worth it. All you have to do is ask.

Nothing is impossible.