I know I've shared simple explanations of EDS and how to get diagnosed, but for those of you that have a diagnosis or just want to learn more, here are 2 videos that are a must to listen to. Even with all the information I've found out and research I've done, I still learned a ton of things I didn't know when I listened back in May.
This
one hit it on the head when they talk about the Pain Toolbox. People
don't realize when EDSers are just trying to get pain at a reasonable and
functional level and understand it will never be a 0%, but would like
it to be under 85-95% even with all the other
things they are usually doing - Epsom salt baths every night, heating pad when at home,
yoga and breathing, pilates and strength, visceral manipulation, physical therapy, pain
medication, supplements, diet, prayer and inspiration, writing, and of
course just mental willpower: (make sure you scroll to bottom of page after clicking link 👇)
Last article is about pain management and I finally learned last year that my normal
just tough it out actually causes more pain. Even after I realized this, I was still guilty of letting
my pain get out of control because I hoped that maybe it would just all of a
sudden be gone so I'd try to go without any medicine:
“At
this point in time, I put EDS in the category of being in the top three
or four most severe pain problems. A lot of people for example think
that cancer pain is the worst of pain, but let me assure you that many
EDS patients have pain far beyond any cancer patient I’ve ever seen. And
so it’s one of the pain problems that is severe, has been very
troublesome, many physicians are afraid of the disease and of the kind
of the pain that EDS patients have.”
This list has been in the making for awhile now because I'm always learning something that I didn't realize was Ehlers-Danlos Syndrome (EDS) and it affects everyone so differently. I was going to wait and share in May for EDS Awareness Month, but symptoms and things EDS related have been the most popular questions I get. I'll go ahead and share what I have in case this happens to connect your issues that no one else has been able to. As I discover more knowledge about this multi-system syndrome I will continue adding or editing.
[Disclaimer: This is not a substitution for medical advice. I cannot diagnose or treat. This post is just sharing things that I believe should make you ask a doctor about so you can seek the right specialist to rule out an EDS diagnosis. After my diagnosis I didn't realize some of the below were things I should've mentioned. If you don't have the flexibility or hypermobile things, but a lot of the others, I would strongly consider doing the simple blood test for the other 12 types.]
Wait this isn't a normal and comfortable thing to do at 36 weeks?
Most Common
Muscle & joint fatigue young - I would blame on athletics
Muscle & joint pain young - Usually blamed as "growing pains"
Subluxing or dislocating fingers and joints - What causes me to do this is having to push buttons (like a toilet or seatbelt). I knew my fingers always hurt, but just didn't realize what was happening and currently in the process of getting splints for my fingers.
Hyperextended elbows - Handstands were difficult or cheerleading and ballet poses without looking funny
Hyperextended knees - My cardiologist even got a protractor to measure and was a little shocked at the degree
High arches or flat feet - Always picky on shoes or wanted to be barefoot
Bad eyes - Specifically astigmatism / near sighted. I was close to being legally blind, but had LASIK at 22
Blue sclera in the eyes - Bluish coloration of the whites of the eyes that my dermatologist found
Swimmer's ear & earaches - I actually learned our anatomy is different that can cause these and TMJ
Specifically shaped ear - So I didn't know this was a thing, but my sister-in-law learned about noticing ears for EDS diagnosis in a class for her Nurse Practitioner degree (was interesting because my husband always joked about my "elf ears" - it was in a sweet way that he loved my ears like Arwen)
Hearing loss - I've always had issues hearing or understanding someone with background noise
Small palate and teeth crowding - I had 15 teeth pulled out when I was young (some baby and some adult to make room for all my teeth) and still also had braces for 2 years
TMJ or overbite - I actually didn't know I had TMJ because my mouth didn't pop when I ate (it can actually cause migraines and there's something you can do to help if you see the right specialist)
Teeth problems - Can range from sensitive teeth, gum disease, more likely to have cavities no matter how well brushing or flossing
Extra flexible - Like zipping your own tops or dresses, never had to practice splits, PE flexibility test was always easy
Shin splints & tendinitis - I should've caught on to this because I had it constantly and would even get from doing flip turns at swim practice
Subluxations - Which I didn't even know I was having until a few months after diagnosis when my wrist hurt really bad again and I started moving it around and realized joints would always stop hurting soon after when I put them back in place and then I realized all the other joints it happens to
Dislocations - I did it with a rib and didn't know you could, you need to be aware it's definitely possible
Fractures - Another common and discussed symptom, but when it happens like just walking, THAT'S NOT NORMAL
Sprains & breaks - I would sprain and break toes like crazy when I was young doing gymnastics, cheerleading, flip turns in swimming (broke my pinky finger playing volleyball)
Constantly rolling ankles
Randomly falling down or losing balance - I learned I just had to start laughing at myself because what can you do?
Severe bruising - Didn't ever know where they came from
Fatigue - Not just being tired, but more like can't get out of bed or move
Digestion issues - Usually misdiagnosed as IBS, but we can have gastroparesis, or vascular compressions and I think everyone with EDS needs to learn about "fight and flight" because we are more prone especially with digestion that can cause the issues (Listen to Heidi Collins)
Lots of rashes or reactions - For me it really started with chlorine as a swimmer
Velvety skin - When the tech for my neurologist was doing some testing and was like wow your skin is so soft
This was just from a blanket
More unknown & unusual
Look younger - When doctors talk to me especially when they didn't want to give me pain medicine they kept forgetting I am actually in my 30's and have children
Skin imprints (above) - Tight clothing, waistbands, socks and honestly just sitting or laying on something will do it for me
Skin issues like ichthyosis vulgaris (extremely dry scaly skin) & eczema - A dermatologist was actually the first specialist to confirm my EDS
Eye floaters - I mentioned eye issues, but didn't know it wasn't normal to experience this all the time (very important to get eyes checked often if you have EDS because if you wait too late, irreversible damage can be done)
Cannot hold a pen correctly - I've actually found these special pens to write that are way easier (#paidlink)
Sit in weird positions - I could never sit correctly at the dining table or computer chair
Irritation from sticky stuff or bandages (last pic below) - PICC line was awful because of this
Trouble falling asleep or staying asleep (autonomic system dysregulation) - I've recently started melatonin thanks to my EDS doctor and it's life changing for me and my oldest
Vivid dreamer and nightmares
Overstimulated and oversensitive to light, noise, or touch
Shiver A LOT and it hurts - Another one I didn't know that wasn't normal
My youngest getting lip/tongue tie procedure
Women, Childbirth, and Motherhood
Pelvic pain and difficult periods
Imperforate hymen - Seems to be hereditary also
Tilted Uterus
Difficult getting pregnant
Pregnancy & hormones - With the hormone relaxin it makes our joints even more lax and more likely to have 👇
Quick deliveries - For my oldest's birth my water broke the morning I turned 37 weeks (since she wasn't a preemie didn't think anything about it) and even though she was born OP, was a very short delivery (was also dilated and effaced very early on when they checked at 34 weeks)
Lip/tongue tie - Both daughters had, but awareness is also lacking for this (what should've been looked for and diagnosed right after they were born when they had difficulty nursing, but my oldest had it clipped at 3 weeks finally, then after having issues again found out it can grow back if not lasered with exercises and had to have it lasered at 6 months)
Overproduction with nursing & painful production - I had to wear nursing pads the whole 15 months I breastfed my first and could only nurse her laying down (I also had no idea other moms didn't have pain or realize until I was in an EDS Mom Facebook Group)
Prolapse - I thankfully haven't experienced yet, but actually a positive that I had a hysterectomy (know it can be not just uterine, but bladder or rectal prolapse as well and a doctor should have you stand to check)
It never fails, this was only from an hour
Ones to be aware of
Difficulty healing - For me it started with chicken pox scars that were prominent and even though my c section scar healed normal, my much smaller hysterectomy incisions did not (keloid)
Problems metabolizing medicine - I'm usually a rapid metabolizer, if I metabolize something at all (why testing is so important for us)
Anesthesia & epidurals won't work effectively or sometimes at all (same with local anesthesia like getting something done on at the dentist) - Make sure to mention to any doctor before procedures
Sensitive skin - Makeup, soap, lotion, detergent
Pain - Like I didn't know it wasn't normal to wake up in pain and that's my first thought when my eyes open
We hyperextend and go way past normal range of motion - Something I've learned what the correct range of motion should be thanks to Jeannie Di Bon and my PT. I found out from my EDS doctor we can have hypermobile urethras, what the what what?!
Elastic Heart - Just kidding not a symptom, just the name of Sia's song (who has EDS), but we do have elastic bladders.
If you are curious about other diagnoses I have that are caused by EDS and those particular symptoms, read this post. Any symptoms or something you've experienced I left out? Any that you wonder are connected? Please share!
Q: How did you hear about Professor Scholbach and Professor Sandmann?
A: I heard about both the diagnostic doctor, Professor Scholbach, and the surgeon, Professor Sandmann, through the Facebook vascular compression groups (I actually had been off Facebook for 5 years, but there was just not much information online about EDS so I created a profile to see if I could learn more from a support group). I read about pelvic congestion syndrome in one of the EDS threads and it spurred me asking my physical therapist more about it. Then after my cardiologist said he suspected not just PCS, but multiple vascular compressions, he ordered a doppler ultrasound that finally showed abnormal velocities for the renal vein, superior mesenteric artery, and celiac artery. That's when I looked for the compression groups and soaking up any bit of information in them. Unfortunately the whole next year even with the ultrasound results and names from the groups of top specialists, I would be unable to find a doctor help me with those compressions. This brought me back to thinking about the German doctors.
Q: Did you do online consult or just fly to Germany to do the ultrasound?
A: When my health continued deteriorating and I began having kidney stones and vomiting, we knew we could no longer wait around and finally paid to do the online consult where I sent a previous CTA. At the time I was considering just getting nephrectomy done because I was so desperate for pain relief. It was also during COVID so I didn't actually think at this point I would ever fly to Germany, we just hoped for a diagnosis finally and some direction. When he found things on my imaging no other doctors previously did, that's when I decided to mention it to my EDS doctor and get her opinion on what I should do. She was actually the one to suggest that I had to go to Germany and even wanted to go along so we could bring back the knowledge to our doctors in the states (because of having to get a medical travel waiver and everything happening so quickly she wasn't able to come with me, but I kept in touch the whole time). The ultrasound in Germany was worth it because Professor Scholbach would end up finding way more than what was just on the CTA.
Q: What made you decide to go to Germany or consider having surgery there?
A: Honestly it was hearing Professor Scholbach's answers to all my questions during the consult. He actually wanted to know what was causing the compressions and how to prevent them. No other doctor I had previously talked to was that way. Plus, for him and Professor Sandmann it wasn't about jumping immediately to last case scenario and cutting things, but preserving the integrity of the veins and arteries. Understanding my EDS, I knew this was my best chance. Not to mention Professor Scholbach actually had experience with transplants and kidneys before he was doing what he does now.
Q: How can I contact Professor Scholbach or Professor Sandmann?
A: Professor Scholbach has an excellent website that allows you to request an online consult or schedule an appointment in person. You are quite fortunate that Professor Sandmann has started doing online consults as well, which is a huge blessing to so many to have his expertise. If you'd like his contact information or considering surgery, you can join this group on Facebook.
Q: Do they speak English? Did the nurses speak English?
A: Yes! I was thoroughly surprised and impressed with how well Professor Scholbach and Professor Sandmann speak English. Do not assume everyone speaks English though. A polite way to check is to say "hallo, spreche si Englisch?" and I think the nurses really appreciated this and shows a bit of kindness. If you fly to Germany for surgery I would definitely recommend this (paid link) just to be safe. I actually left mine with other patients because it was useful.
Q: Do you have EDS, Scholbach or Sandmann mentioned they think I cold have it. What is it and how do I get diagnosed?
A: I do, I actually knew about my Ehlers-Danlos Syndrome before I found out about compressions. Please look at this post and this post for helpful information. I would also recommend making sure you are positive you know if you have it before ever deciding on surgery. EDS affects everyone differently and there were a lot of things I had no idea were symptoms or something to ever mention to a doctor. Why it's so important to know I talk about here.
Q: What did you ask Scholbach during your consult?
A: I created a list of questions after reviewing my very detailed report he sent me. He lets you really lead the consult so you can go over his findings and the imaging or ask any other questions about compressions. Mainly I asked him about why they were happening, if my symptoms could be linked, and what he thought about different treatments and surgery, and what he would recommend. What I love about both these doctors is they never make you feel bad for asking anything and when you ask them something they will back up an answer with multiple journals/studies in different languages and countries. It's incredible. And when you communicate with them or do finally talk to them face to face, you will see first hand how they really care about their patients and why they do what they do.
Q: How much was your consult?
A: To be honest we couldn't afford the online consult for a year when I heard it was over $1000 and I understand it can be a large amount for some, but please understand what this doctor provides is so much more than any other doctors I have ever been to. The time and energy he expends to help his patients I think is greatly underknown and underappreciated. Please contact Professor Scholbach to ask about price because depending what you want to send for him to look at and how much communication is needed, it will all affect the price. Same thing with the consult in Germany, please contact him to ask before scheduling. Besides the ultrasound, consult, & report, we had 2 COVID tests, and a MRSA test I needed for surgery with Professor Sandmann so that made a difference in my price.
If you believe you have SMAS (Superior Mesenteric Artery Syndrome) or already have a diagnosis, you can apply for a grant from the SMAS organization. I did and received it to help go towards my in person appointment/ultrasound.
Q: How much was your surgery?
A: Everyone's surgery will cost a different amount depending on what kind of room you get, what all is fixed during surgery, and your length of stay. I know Professor Sandmann actually should charge more than he does and tries to keep it as low as possible to be accessible to his patients that come from all over the world. How do you put a price on a life? I know baby deliveries that cost more here in the US than his surgery and they do not provide the care or the food (or the accommodations) that a private clinic would. Please keep in mind exchange rate can impact the price as well. You can contact Professor Sandmann or Clinic Bel Etage if you'd like an estimate on what compressions would need to be addressed during surgery.
Q: What did you have done?
A: Here's the post of our plan before surgery and the post of what they actually found and fixed when they operated. I have two external grafts, one placed around my renal vein and one around my iliac vein because even with my internal iliac stent I still only had 50 % blood flow. Honestly with my history I usually never have things go smoothly and typically have something weird happen. You better believe this is why I chose Professor Sandmann. I wanted the best chance if he opened me up and found something unexpected, that he'd be able to handle it because he's had so much experience thinking on his feet and how the whole body is connected and affected. Meaning he takes extra caution when dealing with the tissue and organs and isn't just tunneled into one section.
Q: How did you decide where to stay?
A: My uncle who is from Germany actually ended up picking and we were so impressed with both places - Hotel Rosenkranz in Markranstädt (right outside Leipzig to see Professor Scholbach) and Auszeit Hotel in downtown Dusseldorf (to see Professor Sandmann). He drove because he knew I could not take the train with the condition I was in. Please be aware that Professor Sandman and Professor Scholbach are in different places and not close if you plan to see both in one trip. A lot of people actually end up flying to Dusseldorf. If you'd like more ideas on transportation and accommodation, Professor's Scholbach's Facebook Page is a great resource. In Dusseldorf, I was surprised how Clinic Bel Etage was so convenient because it was in the center of the city. Everything in walking distance and close to public transportation. They do have an underground parking garage for a daily fee if you end up doing a rental car like we did.
Q: When did you leave and the timeline of ultrasound and then surgery?
A: Check out both these posts (First Week & Recovery) where I include more details, but I was in Germany for almost a month before traveling back to the US. I think if you are able to make it so you can change your return date at anytime this would be a good idea just to play it safe in case you needed more time to recover.
A: I wouldn't learn until after my surgery just how many symptoms were all from my compressions. Even at 3 months post op I'm still noticing things that have improved.
This is my friend Emma who's story originally made me first think about Germany because ours was so similar with symptoms and health issues (here's her news story I've previously shared). I'm so grateful we connected before I went and can now call her a close friend. She's an amazing advocate and has done a fabulous job of sharing the details of her diagnosis, surgery, and just answering compression questions to help others so take a listen below if you'd like to know more:
Q: Should I consider surgery?
A: Something I was thankful Emma warned me about is that the only time you should ever consider this surgery is if your life is severely impacted by the compressions. She was very honest that the recovery although completely worth it, is very difficult (that first week especially) because it's a MAJOR surgery. If you are able to control pain and not debilitated by it, eat and drink without pain, you may not notice a difference after the surgery enough to warrant this decision. I would definitely still encourage you to get either professors to look over imaging so you know what you are dealing with on how extreme the compressions are and if they are impacting any organs. It's smart to of course try things like physical therapy to rule out pelvic floor dysfunction or body alignment and see if working with a dietician or Nutritional Therapy Practitioner can make a difference. I know for most of us though we've tried everything possible out there (yes, including yoga) to cure our issues without luck. All of these things will also make a difference in your healing and keeping inflammation down during recovery so they are not wasted, but sometimes you just need SURGERY.
Q: My symptoms aren't severe all the time, does that mean it's not bad or that I don't need to get the compressions fixed?
A: That's how mine started and seems to be the consensus in the Facebook groups. I think this is why it can really mess with your mind and understanding something is really wrong because you may have some good days too. I will even admit when I'd be in a "flare" I'd call them where I'd trying to be deciding if I should go to the Emergency Room, I'd beg my husband to never let me forget how much pain I was in (not that it makes any sense, but I have a feeling if you have this you know exactly what I mean and have done it too). Unfortunately those "flares" would be fewer and farther between until it was like one big flare that I never got out of. For me my severe symptoms started at 12 when I started my period, but it was only debilitating during that time of the month and when I exercised (I was a competitive swimmer). Unfortunately there's the perspective that it's just normal for some people to have painful menstruation so no doctors were concerned or willing to investigate. I also got the typical IBS diagnosis to go with with my digestive issues and abdominal pain. You can read the rest of my story here, but all of that to say is why it's important to get Professor Scholbach or Professor Sandmann to have a look at imaging or do their own ultrasound and CTA.
Q: Are you completely healed?
A: I am still very early in my recovery because most friends before me didn't fully see complete healing until 6 months to a year (when their scar turned white). There are so many factors that can affect the success of the surgery and "being fixed." I think it firstly depends if you have a connective tissue disorder, if you've had previous surgeries and which ones, and how long it took before you had the compressions corrected because that can lead to irreversible damage in itself. That's why I'm horrified medical practitioners don't see a problem until a patient is severely underweight and now too weak to safely have a surgery or organs have stopped functioning. I have EDS so I will continue to have other health issues pop up from years of not having my diagnosis, but I would say my quality of life went from 0 % to 70 %. The biggest thing is pain doesn't control me anymore or my life. It's not what I think about all day or trying to find a way to power through.
Q: There's no way I could fly to Germany or afford that, what would you recommend to do where I live?
A: I understand everyone's situation may be different and will always support you no matter what you decide. You have to do what is best for you and even if you go with a different surgeon, that will not change anything. I ask you to read this before deciding on any treatment because I feel like knowledge is our best tool. Don't let a doctor ever bully you into something you don't feel comfortable doing, there is no problem asking to wait and think on something. It's your body, trust your gut. I see time and time again a doctor promising something and then after a surgery the doctor will no longer see you because there's nothing more they can do. That's why I feel like the support groups help a lot with this on knowing what surgeons are great about post op care or with further complications. Again don't be intimidated to ask them the hard questions because you'd rather do it then instead of asking them after you've had a problem. Unfortunately because these compressions are rare, we are right now on the forefront of paving the way for the best treatment. There are still unknowns, but for me I wanted a surgeon who continues to adapt what is most successful for their patients and admits when things should be changed or improved.
Are there any other questions that you would like addressed or added? Don't forget to read the Germany section here as well. Please know you are always free to reach out if you would like to know more.
Since these are my tendencies I thought it might benefit others who like to have everything organized and done for you. Here ya go :)
Awareness shirts, baggy t shirts & tanks, low and loose shorts & pants
More dress up clothes that wouldn't be tight on my abdomen or need a bra (and still fit with swelling)
Shoes & accessories and what I would wear on plane and bring in backpack that I could change into
Ok a little tip, this really made a difference organizing all my pills when I got checked into the clinic. Mainly just for the first week it helped so much when I couldn't get up or reach myself I didn't want to have to be dealing with pill bottles and trying to think about telling someone else what I needed (on top of the pain medicine you will be receiving).
Medication list (maybe a few copies to be able to give to surgeon & anesthesiologist )
Folder to keep documents safe - anything to show Scholbach or Sandmann, CTA, (remember you will most likely have a surgery report and CTA you will also be bringing back)
All medication (don't rely on place for anything, and bring as much pain meds other docs can give you to travel back with)
Nausea medicine, ginger chews, mints and lollipops or something to suck on
Gum (there’s been a study to show it actually activates a bowel movement after surgery)
If you have allergies or allergic to certain medicines, write the names in English and German and make copies in case you need to hand these out to nurses if they try to give you
Swimsuit if you are uncomfortable with nurses or caretaker washing you
Flip flops for the shower
Prunes/colace/miralax (do have green drinks they can give you, just ask)
Gas-x (have a different green drink you can ask for as well)
Bigger clothes for swelling (loose dresses are best for females)
Shorts or pants that won't rub incision (why I went overalls and yoga pants)
Heating pad
Hair dryer if you need one
Phone charger/Europe plug
Headphones
Earplugs if you might be sharing a room
Electronics and Entertainment (I brought laptop and 2 books)
Room Decorations ( I brought a couple frames)
Snacks (especially if you have food sensitivities or intolerances)
Drinks you like (any specialty hot teas, or even powdered soup you'd prefer for early on)
They will provide water, coffee, and hot water or the popular teas you'd expect
Small Pillow (to hold against incision)
Biofreeze Gel (I didn't bring this, but think it's a great idea my friend mentioned for any legs or back pain)
Brush
Toothpaste, toothbrush
Shampoo & conditioner, dry shampoo
Deodorant (I would bring yours over planning to buy in Germany (no antiperspirant)
Ponytail holders
Wet wipes (although I never needed to use mine, nurses came and washed me often)
Lotion (face and body and something scented to rub on feet if that's relaxing for you)
Chapstick or lip balm
Nail clippers
Q-tips
Sleep mask (I didn’t end up using, but good idea if you need it dark during the day to nap)
Masks (I didn’t have to wear in my room, but if I walked down to the garden I did)
Hand sanitizer for traveling and before you get to clinic
Make up (if you are like me and it makes you feel like a new person when you put on - again I would bring your own if you have sensitivities to certain chemicals)
Journal (to log pain, symptoms, medicine times, or document your experience)
Abdominal Binder (you can bring one or you can ask to buy one from the PT who will get you fitted - I did the second, but honestly I didn't wear except traveling back because I didn't like anything tight on my abdomen)
So here's what everything looked like all dispersed and accessible for my recovery:
I brought a lot of gluten free snacks because I wasn't sure what the clinic food would be like. Make sure you tell them food sensitivities, they were very accommodating and would even go to the store if they didn't have some like jello or ice cream those first couple days (there are stores in very close walking distance if you end up needing something that your person can go get or for their needs as well).
Don't you love my Invisible Illness Warrior medicine pouch? You can find it here.
I had a heads up that I would be pretty swollen after the surgery so I made sure to order underwear that was bigger and low enough not to rub my incision. Can you tell I've watched Marie Kondo hahaha? But seriously I was thankful I made it easy for the nurses to grab for me when I felt like changing out of the hospital gown on the 3rd day.
I did bring swimsuits in case someone had to help me shower. I ended up not having a problem showering myself and never used except throwing on a bikini to take a few pictures to document my scar healing. Depending when you go to Germany, I would recommend a jacket and sweatshirt (even during summer I was glad I brought mine).
Don't forget your shades! I'm a sucker for versatile pieces when traveling so I have to mention it really came in handy bringing my blanket scarf. Also, if you want to blend in and not look like a tourist, bring a scarf to dress up your outfits.
I would last add try to think about the purse you bring. You will have a weight limit on what you should be carrying post op so if you have something smaller that can fit your phone and money if you go out exploring or to dinner.
I wrote a post when I flew to Germany and had diagnosis and surgery all in one week. Here's the next month in detail about my recovery and rest of my trip before finally making it home.
Day 1 (Tuesday, July 14th):
After surgery I was pretty comfortable and not in too much pain in the recovery room or when I made it back to my room. I couldn't have anything to eat except for hot tea. I was so excited that my legs and feet were warm that I couldn't sleep for awhile. Even my uncle said they were actually hot.
Later that night is when I started to get uncomfortable because of the painful gas, but the pain was still at least under control with the epidural and IV meds. I had a sore throat and raspy voice from the tubes during surgery, but these are all normal. I also got my first heparin shot that I would continue to have daily at the clinic until I was released. It wasn't the most fun and I think the nurses felt pretty awful when they saw how bad I would bruise from them (thanks again EDS).
Day 2 (Wed, 15th - The day my new niece was born!):
The next morning I wasn't supposed to, but the nurse got it approved since I asked to have some coffee (to get my bowels moving along). I felt well enough that they even let me try some blended yogurt with fruit. I had only a couple bites not to overdo it and for lunch was able to eat some potato soup as well. Later that day I ended up starting to have lymphatic drainage instead of the previous blood, which was a little scary until my surgeon told me not to worry because it was perfectly fine and explained why it was happening.
That evening although I had been doing well, my nurses had to call the anesthesiologist and doctor in because I was having unbearable spasms. We think that's actually when my duodenum was waking up (hallelujah!). This is the day we were so impressed because I would have one of my surgeons check on me morning and evening, the anesthesiologist twice a day, and the nurses taking vitals and checking in at least 3 times a day unless I pressed my button and needed them more or time for more meds.
Days 1 & 2 it was important to lay flat so the nurses would come in and empty the catheter and drainage bags.
Day 3 (Thurs, 16th):
PT came and I was able to sit up and stand for the first time, even trying a few steps in place to surprise my PT. The nurses then gave me a washcloth bath and I got to put on a little make up, it was so nice! They even let me change into my own clothes. It's always a mood booster when you can do that :) I also tried laying on my right side to switch up my positions after requesting extra pillows (great tip), but it was too uncomfortable to lay on left with the drainage port.
This was a tough day. I always know 3rd day is usually the most sore, and I definitely was. I had been a little more afraid to eat because of the bloating and spasms I kept having, but my surgeon really encouraged me to so I tried two small pieces of fruit and at lunch some Götterspeise AKA jello. I also had quite a lot of phlegm and kept trying to cough it out. I would actually end up getting up myself and walking that evening to go to the bathroom. Because my pain kept seeming to increase, my surgeon actually had a different anesthesiologist come in and do an "ice test" to check if the epidural was still working. It was only working on one side so they did finally give me some different medicine to get some relief. Unfortunately that evening my two IV spots would blow and I would wake poor Thomas up in a little bit of a freak out to run and get the nurse. It happened to both sites so I would need two more placed. Just like for surgery, it would take a few attempts smh.
.
Day 4 (Fri, 17th):
This morning we tried stopping the epidural, but unfortunately after a little bit we realized I needed to get back on. They also took some blood to check on everything. I know the best thing you can do during recovery to get things moving is get up and walk so that afternoon I made myself walk down the hall with the wheel walker above (that was also used as a laptop holder for movie night) and we even ran into my PT who told my uncle he was very impressed how well I was doing. I think that may have been even more of a mood booster than the make up the previous day haha. Can you tell ex athlete?
I was in high spirits so my uncle and I decided to watch an old western I had never seen while also watching the gorgeous sunset in the background. We heard the song from Once Upon a Time in the West on the radio driving to Dusseldorf and Thomas enlightened me about Italian westerns. I was going how in the world am I from Texas and don't know about this little bit of information. Ok sorry off topic. Unfortunately a little bit later I would think I overdid it and was hurting more from the hallway walk, but looking back I now know that's when I started really feeling the fluid overload and explain the phlegm I felt in my lungs and difficulty breathing (not a normal thing to have happen whatsoever, but I had this before with my PICC line back in January and would finally realize this the next day).
Day 5 (Sat, 17th):
This day started out with some excitement. I would end up having some bleeding and clots when I used the restroom along with sharp pain, which didn't make sense because I've had a hysterectomy. It was actually very frightening for me to experience bringing back all the memories from my 2nd daughter's birth. My uncle and I related the urgency of the situation and although my surgeon was at home for the weekend, he came to the clinic immediately (he only lives 10 minutes away). Luck would have it that he originally wanted to be an OBGYN of all things. He did an exam and we knew it wasn't caused from the catheter, but we would continue watching. At this time I was able to talk to him about believing I had fluid overload, which he definitely noticed my legs swelling and agreed I knew my body and we would switch to pain pills instead of the IV. It explained my increase in pain the last few days without medicine helping and just kept getting worse.
This is when my uncle had to give me a pep talk. We both knew that I had to tough out my pain to get off the epidural so I could get it removed along with my catheter, and most importantly, not go back to the IV meds no matter what. This would be the worst day of my whole recovery and I know it was beyond hard on my uncle to watch me in so much pain. I cried, worshipped, and moaned all night. Guess what though?
Day 6 (Sun, 17th):
The next morning I felt like a new person. My friend Justin shared with
us that his surgery recovery was the hardest thing he's ever had to do,
but that all the hard things in his life had prepared him for this. No
doubt I felt the same way, but staring at the frames I brought of
Christopher and our girls, helped get me through. It was a much better day and I was able to get my cath and drain out. Thomas even surprised me by bringing me some gelato he found right next door. When the other surgeon came by to check on me (also was a swimmer), he told me he couldn't believe how well I was doing so far. It was the huge inspiration I needed.
Day 7 (Mon, 20th):
The best day so far, I felt pretty good, and had beautiful flowers delivered to my room. Because I was able to get my epidural removed that morning I was able to have my first shower! The nurses wrapped up my wound and although it had to be a short shower, probably one of the best showers of my life. Professor Sandmann removed my previous bandages and I got to have a look at my scar before getting new bandages put on. My physical therapist Konstantin came by and I even walked some stairs without feeling like I needed a cane like I did pre-surgery.
Week 2 (Tues, 21 - Mon, 27th)
I'll
never forget on Tuesday (one week after my surgery) my other surgeon
Al-Maqablah came by and said 2 weeks! Are you ready to be discharged? I laughed and kindly reminded him it had only been a week :) That's a perfect
example of how shocked we were all how well I was doing already. I got to have the proof on Friday when Al-Maqablah performed an ultrasound to check all my velocities to make sure blood flow was fixed. It was!
This ended up being one of my favorite spots. The clinic had a little garden area that you could take the elevator down to and I would do a lap or two or just sit and take in some Vitamin D.
And this was one of my favorite meals the cafe in the clinic would make me. Ginger soup with fresh mint tea. With food, I started to slowly get a little of my appetite back the 2nd week, but there was a lot of trial and error where I'd eat a little more than I had and then not want to eat anything else for the rest of the day. I was so grateful for the selection of healing and low inflammation foods I was able to choose from. I even got to try buckwheat pancakes (blinis) with a homemade date syrup one day. Not to mention of the servers actually had a friend who was a chef that just moved to the US to work at a restaurant on a ranch in Fredricksburg. He got a kick out of my cowboy boots most of all ;)
Because I was doing so well we felt comfortable letting Thomas make the drive to
surprise his mother who lived 6 hours away over the weekend. She had just had major surgery the month before and with COVID travel restrictions we really had no idea when he'd be able to make another trip. It worked out perfectly. On Sunday I had my stitches out and didn't have to keep a bandage on so I decided to try exploring outside the clinic and walked to the museum across the street.
Although I enjoyed it greatly, I had almost a small heart attack realizing they locked the outside doors of the clinic and all I had was my phone with Wi-Fi (that wasn't connecting). Finally after I came to terms with having to just sleep on the steps for the night, the busy nurse luckily heard my buzzing 10 minutes later and let me in. Don't learn your lesson like me haha. Germany usually closes down on Sundays with all businesses, restaurants, and stores included.
On Monday, the day of discharge, I got to meet my last friend, Cecilia from Spain, when she checked in. She has 2 daughters as well and gave me so much encouragement having to leave my girls. It helped tremendously having other people that went through surgery share
what they experienced to know what's normal and what to expect and the only reason I'm sharing this post. The four friends above I got to meet in person I will never forget. It's hard to describe how much they mean to me and the impact they had on my life even though we all live on separate ends of the world. There are a few other warriors I haven't had the privilege to meet in person, but dedicated time and energy to be there for me and support me preparing for the trip, when I was in Germany, and after surgery. If you are one of those reading this, thank you.
Professor Sandmann ordered a CT to be done to make sure all looked good after surgery and that I could take back to my doctors here in the US. Looking at this picture brings me to tears because I can't tell you how many times I waited to have imaging done praying that it would finally show what's wrong and they never did and I had so many. Just because a scan says "normal" does not mean it's normal. I repeat. It takes the right person to know what to look for. Don't give up.
After my CT Professor Sandmann even showed me on a computer to point everything out and let me see the compressions were fixed. Honestly I don't know a lot of surgeons that do that. And yes I had my previous CTA ingrained in my brain so I instantly could see the difference.
We took a picture and said goodbye. A perfect example to show how humble this man is even thanking him, he replied "oh I didn't really do anything." No Professor Sandmann, you believed my pain and you saved my life.
Week 3 (Tues, July 28th - Mon, August 4th)
After I was released from the clinic we went to check into the Auszeit Hotel where we stayed at before my surgery so we'd be close to the clinic just in case. I mentioned their buffet before, but you can imagine how excited I was to try it out with my duodenum functioning?! Although we were there during a Pandemic, they were amazing with precautions and just the nicest staff ever. If you have any food intolerances or also like to have healthy options (or you just want to indulge as well), you have to stay here. No I am receiving no perks, we just had such a great experience.
The
next day I was supposed to go pick up my surgery report to bring back,
but unfortunately it wasn't ready (they were kind to translate it to English for us) so my uncle took me to THE go-to
shopping experience in Dusseldorf - Königsallee (the "King's Avenue). Seriously it was such a pleasant surprise how similar my uncle and I travel and he would show or take me to things I would have picked myself. If you need a travel host... ;)
A short drive from the hotel, my uncle had found an area with a bunch of gardens and a couple restaurants. The weather was so perfect that last week there. This is when Thomas would talk me into trying German goulash. It was so delicious I picked up a couple packets to bring back to the states.
I returned the favor by making sure Thomas tried a Döner box. Ok honestly I just had to have one before we left Germany because my husband and I loved them when we lived in Austria. Yep, just as delightful as I remembered. If Döner isn't really your thing, you can also get the best pizza there and FYI they use salami instead of pepperoni. Do not ask for pepperoni or you will have a very confused look on the server's face.
We would stay in Dusseldorf until Thursday making sure I had no complications and then headed to Frankfurt to stay the night before our morning flight back to Texas. I would find out even the 2 1/2 hours in the car was really not very pleasant on how it made me feel afterwards.
Here was my 3rd week update when I arrived in Houston. I was glad we already planned for me to quarantine and stay close to my EDS doctor and vascular surgeon there because there's no way I could've traveled the whole way back after that trip.
Because the rest of the weekend and the next week I did a whole of this ^. That traveling was rough. I found out a lot of friends ended up in the hospital after flying home so I was fortunate as tough as it was, I knew everything was normal. Plus, I started finally feeling better after all that rest and we felt safe for my husband to drive down to take me back. We were soooooo ready to be reunited.
For the last leg, my husband made the most awesome little pallet to keep me as comfortable as possible. We made a pit stop around half way and decided I needed a little pick me up when the attendant told me the coffee was on the house. That is just another example how I was blown away by everyone's kindness this whole entire trip. So many people blessed me and my family and it I don't think I'll ever stop being overwhelmed with gratefulness.
Finally home sweet home 4 weeks after my surgery! The girls made me the sweetest little surprise, a flower stamped bag (thanks Millie). The next week would be another tough one recovering from the drive, but resting always did the trick. My abdomen would just feel so sore and tender, even changing sides to sleep would be uncomfortable. At that time I was safe to use a heating pad on my stomach again and soak in a bath so that did make a big difference. I will mention though who knew that you use so many abdominal muscles by soaking in the tub?
The first week of surgery I kept repeating what a doctor had said that recovery can feel like one step forward, two steps back. Then I saw this picture and I was like that's EXACTLY what recovery is like. Some days you feel on top of the world, and then other days you are reminded you have a long road ahead, but I'm incredibly grateful for this road. I used to never think I could say that I was thankful for my suffering, oh how God has done work in me because I can say now say that I am.
.
