I had invasive cervical traction (ICT), the intracranial pressure bolt test (ICP bolt) on August 17th, and sectioning of the filum terminale (SFT) surgery with Dr. Bolognese on August 18th, 2021. In this blog, I share some tips that helped me survive Mount Sinai Nassau Hospital, where Dr. Bolognese does his surgeries.
I start with the reminder that everyone is different, and our experiences with surgeries related to structural conditions will reflect that. Since I have not had surgery for cranial cervical instability (CCI) or Chiari malformation, I am not in a position to address specific needs for these operations. Much of what I discuss below could apply to other hospitals.
My packing list and lessons learned
I benefitted from others who have shared their tips and tricks for surgery, and I am so grateful for all of the people who have conveyed their experiences in the various Facebook groups dedicated to structural diagnoses.
Click the hyperlinks associated with the headers below for more information on the products I found helpful in the hospital and at home.
My hospital essentials
Hospital bed caddy: This device was a great way to have all of my essentials within easy(ish) reach. I was unable to access it for the first two days post-surgery because it was slightly out of reach for me, even with my grabber tool (see below), but for the remaining days, it was helpful. I put snacks, wipes, masks, etc., in it.
Power strip with extra long extension cord: This product was great! It was nice to have USB ports I could plug my phone into directly. I looped the cord around a gap in the side rail and kept the power strip in bed with me to easily reach it. It was perfect.
Extra-long charging cable for phone: It turns out I didn’t need this in the hospital with the power strip I bought, but it still came in handy at the hotel and at the apartment I stayed at in Manhattan before flying home.
Blue ice packs: These are a must. After SFT, there is inflammation, and icing helps. However, the last thing I wanted was something directly under my spine where the incision was. You can wedge each ice pack in gingerly from the side, covering the muscles adjacent to the spine. They last for about 20 minutes, which is an ideal time to ice. Ask your nurse to put a label with your name on your ice packs and store them in the freezer near the nurses’ station (which I never saw, but my husband and nurses had easy access to them). They are invaluable for managing my pain from inflammation now that I am recovering at home.
Lumbar wrap ice pack: Because I didn’t want something directly under my spine, I didn’t start using the wrap-around lumbar ice pack with velcro until I started walking the halls. It was invaluable on the ride back to the hotel when the hospital released me. As with the blue ice packs (above), this one stays frozen/cold for about 20 minutes. I also like it in bed because it isn’t very thick, and feels nice to have it under my incision (after the first two weeks post-surgery).
Maternity hospital gown: During and after surgery, you will be in a hospital gown provided by MSSN. It is a hospital gown with snaps, so there is still easy access. They come in many beautiful designs. On day two, when physical therapy starts (sitting, standing, a little walking if able), it was nice to have something that provided a little more coverage, not that I would have cared if my ass was on full display at that point. I liked having something more cheerful, comfortable, and soft to wear.
Snacks and drinks: I’ll put it right out there: the food at MSSN is atrocious. It boggles the mind why hospitals would serve such crappy food when nutrition is a vital part of healing. They served steamed broccoli with a chicken breast a couple of times, but the offerings were inedible for most meals. Many patients arrange special meals with the hospital, but this did not work out for me (but did for others I know), despite my best efforts.
- Snacks: (again, this is so personal, but always interesting to see what people pack): Moon Cheese (Gouda is my favorite, but note that they are cheaper at Whole Foods), Brads Kale chips, almond butter packets (I like the ones with cinnamon or honey), jerky (didn’t touch it), dried granny smith apples, and my favorite comfort food: Lay’s salt and vinegar potato chips. I know, a bit of a contradiction given my focus on nutrition – but they were like medicine for me in the hospital. My very dear BFF sent me some excellent energy balls as a gift – they came in handy when there was no food worth eating. Protein bars are also nice to have around.
- Nuun electrolyte tabs, water. I asked to have two plastic pitchers of water with me at all times – one for electrolytes and one for plain water. Bring your favorite cup – they only have paper cups, which were OK but small and tippy. I also had my Hydroflask but spilled it a few times.
- I enjoy coffee, but I am sad to say I did not have a good cup for the entire two weeks in New York. Call me a coffee snob. I did have packets of organic instant coffee, which I use for coffee enemas while on the road, but I didn’t think to use them for drinking! I am a Melitta coffee pour-over person – if you are a coffee snob, bring your setup to the hotel and plead with your caregiver or bribe nurses to source a decent cuppa for you. Or, as my fellow coffee lovers have shared with me, get one of these devices – I haven’t used one, but a few friends vouch for it (probably better for the hotel).
Foldable grabber tool: This item is a must. It is my new favorite gadget and is essential when you need to grab something that requires any movement that makes your back angry (it doesn’t take much – your back will tell you what it can and cannot do). Bending is not possible in the initial weeks following this surgery. Now that I am home, I take it everywhere I go – I can’t imagine post-surgery life without one of these tools.
Honest wipes: I am sensitive to fragrances and chemicals. These are nice wipes to have around – wiping bits, washing hands, cleaning off surfaces, etc.
Burt’s Bees Sensitive Facial Towelettes: I am not a huge fan of these (more like neutral), but I did use them a few times to wipe the slime off my face and was glad to have them.
Elta MD Foaming Facial Cleanser (or something like it): This is one of my favorite products. You apply it to a dry face, let it foam for a minute, then wipe off with a wet, warm washcloth (you have to bring your own and have your caregiver wet the washcloth for you). It’s the little things that help make the experience more bearable – a tiny pleasure in an otherwise unpleasant environment.
Washcloths x 4 (the average number of nights in the hospital for SFT): I had a washcloth for each day of my hospital stay and used them to wipe the Elta MD Foaming Facial Cleanser off my face and do a little sponge bath before bed.
Personal toiletries: Be sure also to pack things that help you feel a bit pampered.
KN95 face masks have been great, are very comfortable, and don’t smell too bad. Tip: buy in advance and let them off-gas a bit if you are sensitive to new things.
Surgical masks: If you need extra protection against SARS-CoV-2, putting on a surgical mask over your KN95 may help. When I was in NYS, many people were unmasked, which made me feel very nervous. JFK was a madhouse when I flew home and, I was grateful for the added layer.
All prescription medications – in their bottles: This is part of the pre-surgery chart optimization process, and if you have an appointment with Dr. Klein, the neuropsychologist, you will need to take your pill bottles to your appointment.
If you have any unusual drugs (e.g., most mast cell drugs, compounded medications, etc.), you will give them to the nurse, who will clear them with the pharmacist and deliver them to you on your meds schedule. It is a big no-no to self-medicate while in the hospital. You may need to be patient while they get the approvals. You may still need to remind the nurses that you brought particular medications. I have a compounded estrogen suppository I use, which the nurses kept in the fridge near their station. I had to remind them every night.
Tylenol: Again, you will not be self-medicating, but when you are getting discharged and making the transition out of the hospital, a little Tylenol might help. I am also taking Tylenol now that I am home. I had to make friends with this drug – it rarely helps with pain like Advil does, but due to bleeding risks, they want us off of all NSAIDs, including medications such as Celebrex, for a period before and after surgery. Check with your surgeon’s specific recommendations about when it is safe to take NSAIDs.
Hydro Flask Water bottle: I love my 40 oz wide mouth version.
Nuun electrolyte tablets (or whichever electrolyte you prefer): I get pretty set in my ways and struggle to find the flavors I like, especially at Whole Foods. If you are a Nuun aficionado, bring the ones you want. I was chronically thirsty while in the hospital, and having electrolytes helped quench my thirst.
Plastic bendable straws: I know, many hate the thought of plastic straws, but when you can’t sit up, they are essential for drinking.
A cup for drinks (they only provide paper ones that can get soggy). Or, ask to have a bunch of their paper cups.
Comfy clothes – loose pants and tops: In addition to my hospital maternity gown, I got some baggy pants that turned out to be a hit. I like 100% cotton (a little spandex is OK), and I convinced myself that I would not like the polyester in these pants; I was wrong; they are super comfy.
High-quality eye mask: I have always been a cheapskate and used the eye masks that airlines gave. I happened to discover an excellent mask included with another item I purchased and now see that a quality eye mask makes all the difference! If you don’t have any, perhaps this guide will give you some ideas.
Foam earplugs: You can pick them up at a pharmacy or get them on Amazon.
Noise-canceling headphones: I have Bose QuietComfort (but they are $$$). They help me on flights and when I start to feel overwhelmed neurologically (ahem, Manhattan). I used earplugs when I was in the hospital, but the Bose headphones were helpful with air travel and other stressful times due to sound sensitivity.
Pillow: I grabbed one from the hotel – I stayed at the Residence Inn in Garden City, NY.
Cotton sheet from the hotel: MSSN does not have anything nice in the linens department. The sheets are rough and the blankets rougher. My mast cells reacted to the surgery drugs, making me more sensitive to other triggers, including the sheets. I ended up making sheets out of three cotton hospital gowns, which helped a lot. I had packed a pillow from the hotel, so I didn’t have the hospital’s polyester pillowcase on my sweaty face. When I asked for a second pillow, my nurse told me pillows are hard to find and that they roam around stealing them from other rooms when they can. If you are sensitive to fabrics (and what they are washed in), be sure to grab a sheet from the hotel or bring one from home. You can fold it in half and keep your body safe from scratchy and hot sheets.
Pillowcases x 2: I also reacted very badly to the leg compressors they put on patients after surgery to prevent clots. They were a weird plastic material that made me want to itch my legs till they bled when I could finally reach them! I finally asked for pillowcases from the hospital, which helped (but the polyester!). IV Benadryl was a life (and skin) saver for me.
Purple foam donut: I recall some MSSN patients saying to get a purple donut before leaving the hospital. Dr. Bolognese’s team uses them in various ways during ICT. When I started the hospital release process, I asked the neuro team if I could have a purple foam donut. He looked at me like I was an alien but complied. I am so grateful for this advice – the foam donut has a hole about the size of my incision. It helped cushion the bumps while riding back to the hotel from the hospital, when I had to sit up to eat, etc. I still am using it two weeks post-surgery.
Enema bag: I am enema dependent, and even with an enema, there is no guarantee I will succeed. Opioids are well known to, well, shut your sh*t down. The trauma from surgery and the drugs brought me to a screeching halt. If you suffer from severe constipation as it is, bring your arsenal of medications, supplements, and tricks and be prepared to advocate hard for yourself. Remember, they won’t let you out of the hospital until you show them a somewhat convincing #2. Don’t flush it down until your nurse sees it!
Heating pad: I use my heating pad every day and knew it would be helpful during my surgery recovery. Many people who have had SFT and other surgeries talk about how heat is beneficial after surgery, especially for muscle tightness and spasms. I mostly use ice on my surgery site but have had painful hips and sacrum and use my heating pad to manage those areas. When I have muscle spasms (usually from too much activity), heat can feel good. I also use a heating pad for my cold feet and when feeling chilly in bed. This heating pad is one of my favorites because it is large, the cord does not come unplugged from the pad, and it has a soft, plush material on one side.
BP cuff: This came in handy after I left the hospital. I was in a hyperadrenergic state while in the hospital, which isn’t typical for me. Usually, my BP and HR are on the very low end. I needed my BP cuff after I was released from the hospital and before flying home. My BP cuff helped me determine which of my dysautonomia drugs were safe to take on a given day. Luckily, within a day of leaving the hospital, my HR and BP started to fall, but I didn’t restart midodrine until my BP was back in the usual range. (NOTE: stopping Midodrine can cause rebound hypertension).
Batteries: I had to pick up some new batteries for my BP cuff while in NY. Think about which batteries you might need and pack a few spares.
Back scratcher: This was the one thing I wish I had with me. My mast cell flare came on hard and fast, and I was woefully unprepared for it. The discomfort from the itching I experienced far surpassed my pain levels, which is saying something!
Other tips while in the hospital
Ask for a commode right when you get to your hospital room. You will have a foley catheter for about 24 hrs after your surgery and won’t need to worry about peeing – be thankful for the small mercies! After the catheter comes out, you will not be able to reach the bathroom easily due to being hooked up to the heart monitor and pain med pump. The commode is a chair with a bedpan insert. Once you can sit up, it is much easier to transfer directly from the bed to the commode without the hassle of disconnecting from IV and ECG leads.
Manage your room temperature: I hate being hot and like to keep my room very cool. If I am cold, I can use my heating pad to warm up my core and feet. You will not be able to adjust the temperature of your room on your own, but you can ask the nurse to call the hospital’s physical plant and ask to turn your room down to 68 degrees – this is the minimum temp they allow. Every morning the room would heat up again and, I had to request a lower temperature. It was a constant battle! If you get warm, ice packs can help cool you down.
Manage PRN meds: Many of your medications after surgery will be PRN – which means unscheduled medications. It is maddening to need drugs delivered as soon as you can retake them without having to ask, but several medications may fall under the PRN category for you. The one I needed every four hours was IV Benadryl to manage mast cell reactions. I had to ask for it every time, and sometimes this meant that I had to go 5-6 hours without it. Same for Zofran, an anti-nausea medication. If they have you on a PRN medication that you need regularly scheduled, ask them to do so. If they say no, you will have to advocate for yourself to get medications when you need them.
Try to be on the E2 floor: Most of Dr. B’s patients end up on the second floor of the E wing. It is nice to be on the same floor as other surgery patients. I made a few friends while I was there and could only visit one of them because the other was on the floor above, and the nurses wouldn’t allow either of us to visit. Also, many of the rooms are singles. I was lucky and was put into one straightaway, but tell them you would like to be moved to a single when one opens if you must start in a double room.
Practice log rolls! This will help when the time comes to sit up and get out of bed.
Be prepared for worsening mast cell reactivity: Now that I am paying attention to surgery stories more carefully, many people experience worsening mast cell symptoms. If you are prone to mast cells acting up, bring your entire arsenal of mast cell drugs (the hospital will not have many of them) and let the surgical team know you are at risk for worsening mast cell activation.
Know which pain meds work best for you: Along these lines, trialing pain medications before surgery is essential for finding drugs that you respond well and that don’t cause any additional side effects.
Assess adrenal insufficiency: Also, being on high doses of steroids can mess with adrenal gland function. If you have adrenal dysfunction, talk with your doctor about handling steroids used during and after surgery. An ACTH stimulation test is the gold standard for assessing adrenal insufficiency. I have not had this test done, but I will if I need another surgery.
Have your advocate camp out with you in the hospital: Having an advocate with you is essential if things are not going well with your care. If you are concerned about this, arrange to have your caregiver stay in your room with you. They provide very little support for caregivers staying, but if you have a friend, family member, or partner willing to camp out in your room with you, be sure to ask for that and have your caregiver pack a sleeping bag and sleeping mat. Having a caregiver stay is vitally important for help during the night, especially if the staff are not responsive enough.
I am sure there is much more I could say here, but these were some of the items and tips that helped me survive my stay. MSSN is notorious for variation in the quality of care – it is good to prepare for this possibility. I was lucky that I did not have much pain and managed it well with the hospital’s drugs. I know some people are not as fortunate or may have other problems they need to troubleshoot. Be sure you have a call button easily accessible (loop it through the hospital bed rail, so you know where it is at all times), and do not hesitate to use it.
Good luck with your surgery!
Frozen in Amber 