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MHNI Visit #5

Mother/Daughter day aka more Dr apts. We tried a new restaurant out today and are having lunch between apts at Noodles and company.

Really the only changes that occurred today were that Lyrica was increased to 150 mg a day and Imitrex 100 mg was added as an abortive medication.

I did receive the Doctor notes from my pain psychologist and it is always interesting to see what I talk about and what I am stressed about, etc.

Medical notes from Dr. Lake

Headaches: Mixed experience with headaches since RFA procedure with Dr. Shamas on 5/22/15.  She had some significant improvement within about a week of the RFA which would be unusual as a direct result of the RFA.  At that point she began doing more when the pain level was at a low range (1-2 on a 5 point scale), may have done too much, her headaches escalated, and she began to back off on the level of activity.  More recently in the past 2 1/2 weeks there has been mixed ups and downs with some severe headaches back up to the incapacitating level, but she understands this is still quite early to determine the efficacy of the RFA procedure – we would not respect significant results this early.

Botox: It was her understanding it would be scheduled today with Dr. Da Silva.  I am giving her chart to our charge nurse to confirm that the product is available and planned for today’s visit although that does clearly appear to be Dr. Da Silva’s intention in documentation of the chart (unfortunately Heather informed in a passing conversation with me at the end of the day that her insurance will not cover Botox at this time – I did not have an opportunity to explore that further).

Return to Work Issues: We faxed the FMLA forms that she had given us to her work Human Resources group on 5/22/15.  Heather informed me today that although we had extended her return to work date until 8/16/15, her work has given her another form different than the last one that they insist must be completed today.  I am arranging for her to talk with Margaret in our medical records group to review the form and determine what might be reasonable in terms of communicating with them and actually completing this.  To get this kind of form completed on the day she is seen here is not a reasonable expectation, but she will show it to Dr. Da Silva and get his overall view of it.  I do not believe she is in any position to sustain a successful return to her former job at this time and we will need to reassess in early August if it would be possible for her to return to work by 8/16/15.

Carpal tunnel syndrome: She has had some episodes of significant carpal tunnel symptoms in the past, and has carpal tunnel braces that she wears when symptoms flare.  Normally she does not wear it.  She had some issues with her right arm that she addressed by wearing the brace continuously for a period of time, and function and appearance improved significantly.  I encouraged her to consider wearing the brace routinely at night, to minimize any low-end RE:incipient irritations of the nerve.  This is particularly critical both in terms of her work as a microbiologist but also in terms of her alternative potential employment as a photographer since she holds the camera with her right hand that is difficult when the carpal tunnel is acting up.  She has however taken some pictures recently of her kids showing me the change from the first and last day of school and a recent haircut and is trying to be more active in general.

Functioning: She stated she is trying to do more walking and other activities when she feels better, trying to find the right balance between overextending herself as noted above when she had those 5 good days in a row shortly after the RFA.

Cognitive functioning: She continues to report some words switching such as telling her kids “load the refrigerator” when she meant loading the dishwasher.  Although she has had occasional examples of this occurring in the past, the frequency is now several times a day, and appears correlated with increasing her dose of Lyrica.  She states when she does at the beginning of the week it is more noticeable and appears to improve a bit as the week progresses.  She is currently at 125 mg twice a day and will be titrating to Dr. Da Silva’s recommended 150 mg twice a day.  She is not sure at this point how much Lyrica is helping her.  She did report some similar kids of issues at my last session with her before the RFA procedure.

Adherence with relaxation and biofeedback techniques: Excellent.  We did not have an opportunity to review some of that in session today but she gave me examples of using the techniques on an ongoing basis as well as helping herself relax as she goes through the physical therapy procedures with her neck which she feels is helping improve range of motion function as well.  She will see our physical therapist Andrea Sherman later today and request another physical therapy prescription.

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MHNI Apt #2

I called into the dr yesterday with the worsening vision and jaw pain and some word loss. So I met with my neurologist today. After going over all my meds and making a few adjustments we discussed what over the past 3 months had given me any relief. My only response was the narcotic Nubain that they allowed me to take for some relief. It took the pain completely away for about 7 hours.

And then talked about the trigger point that the physical therapist found and sprayed Ethyl Chloride on and the headache went completely away for a short time but reduced for several hours.

So he decided to do a nerve block in those trigger points the headache went completely away as long as the lidocaine wore off it started to get worse but has eased up again this evening.

But my friends and family, we might be getting closer to root cause behind the headache and it is a nerve issue. Next step is to monitor how the steroids are doing and do another nerve block at my temples/trigger points in a month. If that works they will discuss and attempt to kill the nerve to hopefully get full or at least some relief. They would just have to get the right nerve. But it would resolve the jaw pain blurred vision and headache as I understand it. This might be to much to believe in but for today I have hope. And for that, today I am grateful.

Meds: He is slowly ‘ up the dose of Lyrica to see if I can get more of a full effect.  Stopped the Norflex as an abortive and made it into a preventative every day medication.and added Zanaflex as an abortive.  Also recommended B12 shots.

Comments from FB:

Shanon Smith: Great news. Will continue to pray for you!
Michelle Govitz: Great news! Still praying each day
Joy DeSimpelaere: Prayers they find it soon!
Shannen Rowe Dubose: Excellent news.
Kristen Long: That is good news Heather. Glad to hear you had some relief and forward progress is being made
Natara Loose: Are they 100% sure it’s not MS? Since it runs in our family? I take it you already got an MRI and CT SCAN and spinal fluid analysis? Just looking out for you cuz
Dawn Tomlin: This is a hopeful break through! All in Gods timing!! I will continue to pray for the smallest things and relief!!!
Heather Loose Johnson: Yep they did all those tests plus like 50 others it felt like. I let them know I had MS in my history. There were some spots on my MRI but they were pretty certain the spots were caused by the headache/migraine. I will have a follow up MRI in 4 months to be sure because there was a slight chance it was autoimmune. So they are keeping an eye on that.
Heather Loose Johnson: Two of the spinal taps lead to spinal headaches both times that lead to a total of 3 blood patches. Sucky. But I will bring it up again. The clinic treating me had not yet received the scans. Good reminder I need to call the hospital to get a move on the medical records. My mind pretty much sucks.
John SilverstoneAt least it sound like there’s light at the end of the tunnel. Still Praying