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MHNI Visit #3

My mom and I are on our way to down to MHNI for a full day of apts. Today’s visit will also determine if I will be able to continue on Short term disability and whether or not my job will any longer be held for me. So much in limbo right now. My last day of FMLA is May 25th and STD lasts until Aug 6th. I’m not even sure what to pray for at this point. But they will do another nerve block today which will hopefully give me a week of relief but when it wears off the migraines and headaches come back in full.

Today I met with Dr. Lake (pain Psychologist), Dr. Da Silva (Neurologist) and Andrea (physical therapist.  The main things that came from this were that they titrated Norflex daily down to stop the medication due to side effects.  I was still also increasing Lyrica (but side effects from Lyrica were also starting to take effect as the dose increases, but I am still willing to give it a try). Dr. Da Silva also recommended that I meet with the General Pain Division, Dr. Shamis to see if there might be more options for other nerve blocks to try.  Dr. Da Silva also did another nerve block in my temples and doubled the steroid.  I am very much looking forward to a few days of pain relief.

Starting to lose hope that the doctors will ever really figure out what is going on and how to help solve it.

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Medical Notes from the visit to MHNI

Headaches: Some improvement continuing, but has also had some very severe headaches typically related to extensive talking with a friend that triggered a three day incapacitating headache, exertion in combination with a head-down position when she took a walk with her family and watched her kids picking up rocks and head down position when working at the computer.

A supraortbital aricular temporal block from Dr. Da Silva on 4/22/15 gave her a clear week of relief wtih a headache level dropping to a mild level for extended periods of time.  The severe headache triggered teh the walk and looking down occurred exactly one week after that block.  She will have a repeat block today by Dr. Da Silva, followed by a possible Radio-frequency Nerve Root Ablation.

She reports an increase in stress concerning her ability to return to work successfully, and other financial concerns that are unrelated to work including trying to sell a rental house that they are in the process of repairing after it had been vandalized by their tenants.  Her FMLA expires on May 25th.  Her employer (Neogen) has sent her a note explaining that they will not be legally required to maintain her job for her, but may be willing to do so when they receive appropriate information from us.  She logged in the appropriate form with Medical Records today and I put her name up for discussion with multidisciplinary treatment team for our next meeting on Tuesday, May 19.  I am also sending her a copy of this note which outlines her progress and behavioral treatment.

As she explained the ergonomics of the job to me,  it involves a great deal of laboratory work, making media, working with big dishes of media, and working over a safety hood that requires her to lean forward and extend her arms out in front of her which put some strain on her neck and back musculature.  We discussed trying to keep her self centered over her hips, but I also talked with our physical therapist about these issues and how that might be addressed in physical therapy.  She is scheduled to see our physical therapist, Andre, shortly after this apt today.

Also, she has continued to have some cognitive issues with word finding and word substitution.  Her job requires significant Cognitive demands.  In my judgement we are making progress but not in a position where she will effectively make a return to work before May 25th.  However, this is a treatment team decision.  She will see Dr. Da Silva, her primary neurologist with our group later this afternoon.

Anxiety and depression remain improved: however some return of depression after the last weekend with severe headache after she spent three hours talking with her friend.

She reports excellent adherence with relaxation techniques, and states they are quite helpful with the moderate or low-end severe headaches although it is very difficult to relax when the headache reaches an intense or incapacitating level.

I introduced her to biofeedback training. Bitemporal EMG was 2.25 mcV at baseline which is normal range.  However, when she would talk, it would rise and remain about 7 mcV, requiring some sustained attention to bring it back to a lower level.  With visual feedback she was able to drop this to 1.5 mcV and sustain it at that level, at times dropping a little below that, which is our target range.  I underscored the importance of continued attention to jaw relaxation, particularly while she is doing other activities, and returning to her baseline after talking with some sustained attention.  The temporalis may play a key role in some of the vice-like pain over the ears extending to the top of her head.  She also reports pain at times in the TMJ area, that may even extend into the mandible.

Right cervical trapezius EMG was elevated to 3.5 mcV range at baseline.  With instructions to sit with good back support and imagine that she was suspended from a cord with extension of her spinal column aligning her neck through the top of her head, she immediately dropped to below 1.5 mcV.  We discussed the importance of ergonomics and how she keeps her head from being in a down position, using a music stand to hold papers that she may need to work from, consideration of getting a monitor at eye level rather than hunching over to look at her laptop, not sitting on the couch when working on her computer at home, consideration of a wireless keyboard that she could hold on her lap while looking at the screen at eye level.  We also discussed the importance of returning to good posture positions and jaw relaxation as a baseline condition.

I will see her again at her next medical return visit.  She stated the session was quite helpful to her.

Dr. Lake

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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