First Doctor Update

Dear Dr. Ararta,

Hello! I wanted to update you at my two and three week mark. Overall I have feel more wonderful than I can explain!

Procedure Date: January 5

Pre Procedure	2 weeks	3 weeks
Tremor in foot, especially bad in the bathtub	Tremor is faint, doesn't act up at all in the bath.	Tremor is still weaker, but occasionally it will freak out. Still not affected with heat. I hope in time it will go away more as it can occasionally cause painful cramp in my calf.
Body Tingles and Twitches and all the time, like ants having a party	Tingles and twitches aren't as crazy and feels more the ants are having a siesta.	same as week two.
Fatigue- EVERYTHING was an effort, extremely debilitating. Felt like I had mono everyday. I NEVER felt refreshed.	Fatigue totally gone! This was so drastic for me. I feel like my head is so CLEAR!!! Feel like I can get 10 times more accomplished in a day. Happily, this is my biggest symptom improvement.	Energizer bunny still going strong. If I restenosis I think it will be the lack of my head clearness that I will notice most. I am still amazed at how clear my head feels. It has been so since day one and never changed.
Morning headache behind eyes and back of skull. Felt head was full. Felt it the minute I woke up, resolved as the day went on.	The MS morning headache is gone!! However I have been getting headaches but they have felt different and seem to be related to my neck pain.	The MS morning headache still gone! The neck pain is much less and my headaches associated with them have gone. I have found if I bend over with my head down too it will cause an instant headache behind my eyes.
Leg Pain, my worst symptom other than fatigue. Spasticity. Prescribed baclefen for pain and spasms.	I haven't had pain in my legs. So after week one I tried going the Baclefen pain was bad the next day. At week 2 I tried again and have no pain.	Been off Baclefen for 10 days and still no pain. This is amazing as I have been struggling with this the longest.
Freezing feet! Discoloring of feet	Went skiing and still had warm feet and didn't feel like they were frostbitten! Never never happens.	My feet are kind of strange. Once in a while they get spots of incredible warmth almost too warm. They also are a nice pink but a splotch pink, like they are working their way there. Still warm though!
Heat Intolerance, another very bad one for me. I needed to lie down after I stepped out. A day I had to shower, was always a bad day.	I can't believe how different I feel even after a hot hot shower! I am not tired and it doesn't affect me at all now.	Same as week 2
Bladder- periodically painful spasms, urgency	No spasms less urgency.	Same as week 2
Insomnia I was beyond exhausted but could NOT ever fall or stay asleep.	I no longer take sleeping pills. I naturally get tired and can fall asleep and sleep through the night. Changed my sleeping posistion from off of my stomach which keeps me stirring a bit but always fall back asleep.	Still sleeping well without any pills. I raised my bed it seemed to help with my sore neck.

Post Procedure Symptoms

When getting just about any other procedure done, for example when I had and ovarian cyst removed, you receive a page print out about what to expect, what to avoid, and when to be alarmed post procedure. The disadvantage of being one of the early ones to receive this particular procedure, there isn't a gold standard yet of what to expect post procedure in terms of recovery. I understand why this wasn't available to me. However it became tough when you are already pre occupied with the fear that your valve didn't tear during those first 2 weeks. I hope with my account and others maybe there can be a more detailed future "post procedure care" paper.

Personally, I didn't experience any pain in my neck for a couple days. However if I did anything that would put any to strain to that area it would be quite painful. Almost like spasms. I would really ache and sometimes it would cause a wicked headache at the base of my skull. That lasted on and off for about 3 weeks. I learned quickly that my beloved position of sleeping on my stomach was not helping and once I gave up that position my neck pain and headaches greatly improved. Which I had read that sleeping position does a number on your jugular veins and should be avoided anyway.

It didn't take much to strain it either, lifting a laundry basket, scrubbing the counters or a stubborn pot would irritate the muscles surrounding the collarbone and up the neck, and it would radiate up to my skull in a form of a headache. I also felt deep aches in my chest.

Seeing my MS is relatively minor compared to many who undergo this procedure I was probably a lot more active and did more regular things than most. Therefore more aches and pains would follow. So I would suggest mentioning to your patients that they may feel neck pain and even headaches for several weeks. I of course was alarmed that maybe there was a problem but I wasn't having any regression in symptoms so I hung in there. Sure enough they went away.

Dr. Arata, I am overjoyed by my progress and feel extremely blessed that I was able to be your patient. Thank you for all you do and your diligence for moving this forward. You are truly saving lives, by bringing quality back to them. Thank you!

Sincerely,

Jenn