To start off, I have to say that I am exhausted. Since I arrived home Sunday night it has been pretty easy for me to sleep a sound ten or more hours in a row. To say the last two weeks have been overwhelming physically and emotionally would be a bit of an understatement. (I can not highly recommend enough that you make your bed – including putting clean sheets on your bed – before you go away for an extended period of time. It made it all so much better to crawl into my bed with my own clean, soft linen and fluffy comforter.)
I like to think that I looked as cute and relaxed out as the adorable French Bulldog above while I was catching all my zzz’s.
I am thinking if I am going to make this blogging venture a success I should strive for a format or at least a niche. I don’t think overly nice, naive person is going to cut it. Nor is constantly whiny person going to cut it. Although, I can do both with the precision of the world’s finest surgeon.
For my first Wellness Wednesday post I thought a ramble that barely touches the medical care that I received in New York City would be a good starting point to get my feet wet with. Here we go…..
I arrived in NYC as scheduled. The very morning after my arrival I was off to Weill Cornell to visit with two different, specialized neurologist. The clinical trial was explained, the risks/rewards of the surgery were explained, and so forth. My Neuro-Radiologist was stellar, patient, and even scheduled a follow up appointment for the next day because he could “just tell” I had more questions to ask. I would then proceed to see my Neuro-Ophthalmologist to have my visual fields tested, etc. My visual fields actually came back better than expected, which excluded me from the Clinical Trial. However, both doctor’s agreed that I was a candidate for the surgery given my symptoms and that most likely my visual fields had improved because I was on a high amount of Diamox that my body could not handle long term.
So, the next day I met with the wonderful Neuro-Radiologist who answered all my remaining questions. He explained how the surgery would proceed – first the venogram and then if there was narrowing of the transverse sinus the stenting would take place. The venogram took place on the right side of my leg via a vein (I believe), while the stenting went through my left side via my femoral artery.
Surgery did not take place until October 6th because I needed to be on blood thinners for at least three days before hand. (I will be taking blood thinners for at least a year after the surgery, as well.)
Overall, I believe the surgery took around four hours or so. I am still foggy about that detail. I spent just over 24 hours in a Neuro ICU where I received excellent care. That was followed by one more night in a regular Neuro wing before being discharged to rest at the hotel I had booked. I wasn’t really feeling any pain that first night and was actually feeling light headed – a good sign – as the doctor’s were suggesting that the cerebral fluid might already be decreasing. They were so encouraged by that sign they lowered my daily Diamox amount just twenty four hours after the surgery.
( The above picture was the view that I woke up to when I fully came through the anesthesia.)
I did very little when I got to the hotel. I slept (sleeping is impossible in a hospital), I cried, I stared forever at the lights of NYC from my room, I tried to venture out a little bit in the City (but I would get easily winded), so I was saved with Netflix and $7.50 large lunch specials from the Mexican restaurant that would deliver to the hotel I was staying at.
I had two last follow up appointments on Friday before I came home on Sunday. My surgeon thought the surgery was a success, but that I needed to remember to keep on the blood thinners, don’t get pregnant, stick with my follow up appointments – especially for the MRI to check the stent placement. The second doctor had tried to do a visual field exam, but I wasn’t to successful at it. He didn’t write it off as the surgery was a failure, but rather I was exhausted and still taking pain medication – it really doesn’t help if you are falling asleep taking an eye test.
I am still sore, but I am not really in excruciating pain. It is my left groin area where they entered with the catheter like device for hours and the left side of my head where the stent was placed that hurt the most, plus some general soreness. For the soreness I find good ole Tiger Balm and Lush’s Wiccy Magic Bar works wonders. Occasionally, I have had to take Tylenol or rarely the prescribed pain killer.
I will have a one month,three month, and so on follow ups and I am ever appreciative that I can get reach of members of the medical staff relatively easily. I am definitely appreciative that they gave me special “cards” to carry to alert emergency medical personnel that I have specialized devices implanted in me, so they are aware that they need to reach them right away and treat me with the following precautions. (Yay, for a hospital getting things done right !)
What I wasn’t prepared for was how emotional I would be days after surgery, as if it was a traumatic event. Hopefully, that will pass.
I will continue to give you updates on my condition to the best of my ability or until you ask me to stop (If you ask me to stop, please ask nicely.)
This truly was a brief overview of all the medical care that I received while in New York City. I am not sure if being only one week post op is to soon to say I regret or I am glad I did the surgery. I can say that I have noticed improvement in my symptoms despite the obvious pain of a surgical wound. I can also say I had AMAZING medical staff (okay, there were two cranky apples, but still the percentages were in my favor). I want to get there permission first before I name and thank them publicly. (Yes, I know I am old fashioned.)
Also, despite the negativity that I have received regarding the fundraising via GiveForward I think that I am still going to go ahead and proceed with the Campaign. Thirteen days in New York City was an incredible financial burden, despite insurance picking up most medical care. I will still have those out of pocket co-pays, follow ups, travel costs, and I will definitely need new lenses as I can tell one week post surgery that my eyes are seeing a bit differently – for the better.
I would also like to be able to spread the financial help to others, especially after hearing from medical staff that there are other candidates for this surgery, but they are having a hard time coming up with funds to travel even for an initial consultation or to find a proper neuro-ophthalmologist.
Thank you for your support and reading this long winded ramble.
Okay, time to get ready to snuggle in for the night. I don’t want to end up looking like this little fellow.
DISCLAIMER: By no means am I a medical expert in Idiopathic Intracranial Hypertension / Pseudotumor Cerebri and the views I present are my own and as I understand them from medical journals and my doctors.
I have linked this post with the wonderful Kate from The Lotus Creative for Daily Diaries.