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11/27/2020

A Chronic Illness Christmas List

Something that can be tough is buying for someone with a chronic illness. Of course some people are wonderful gift givers, but others need or like a little more direction. I've always been a little disappointed with the usual lists I see circulating on the web so I thought creating my own list of favorites might be helpful for anyone who'd like to get something special for their loved one or friend with a chronic illness. 




1. A plant - I heard it actually helps someone if they have to keep something else alive. I agree, plus aloe vera is awesome for healing and surgery scars (paid link). 


2. Comfy & Soft Clothes - A typical item in these lists are usually pajamas. Although a good gift, other comfortable pieces that don't look like you slept in them or can dress up can take this idea a little farther. Sweatshirts and jackets are also sought after for someone with chronic illness because we can have issues with temperature control.  I mentioned Zyia in my last post with pieces I was gifted or you can click here to shop around yourself.


3. A Journal - You never go wrong with a journal. They can document, decorate, make into a smashbook, write thoughts, prayers, or if they need to keep track of pain and symptoms. Extra points if you add some special EDS pens like this (paid links).


4. Color Street Nails - I've always dreaded panting my nails because with my faulty proprioception, I don't always have the best accuracy and mix that with clumsiness, it doesn't make the best combo for applying regular nail polish. I just heard about Color Street recently and ended up deciding to try. They now have a customer for life. My favorite thing is to mix and match and even do patterns without having to actually draw on myself :) 


5. A Popsocket - When these first came out, I thought they were pointless and just another thing for us to feel obligated to buy. I was very wrong, it's more like a need now for my hands and fingers. I got this one for an easy conversation starter to share awareness (paid link).


6. Pony-O - Another item I saw for awhile, but thought it was gimmicky or too good to be true. It actually does help prevent headaches for me and I so wish I had these when I did gymnastics and track to keep my hair in place (it was such a huge pet peeve). They have a ton of colors to match your hair or to go with something more bright, or even a 🦓 print too. We got the girls pink ones for Christmas.


7. Grabber Reaching Tool - If someone is recovering from surgery, this is a must-have! My aunt got the tool for me when I got back from Germany and it's been a lifesaver (plus the girls love it and have not stopped playing with it).


8. An Illustration - Very trendy at the moment and I'm so excited how digital illustrations are cleverly being used to represent and show a glimpse into the life of rare disease and spoonies. All you need is a photograph to send them and this artist can draw you an illustration of your friend or loved one or even both of you together. Giving them this type of gift will definitely show how strong they are and help give some encouragement or confidence to keep going.


9. A Fun Cane - This one is on my list - it's a color changing cane! The company has a ton of options from bubbles, to lights, but the idea of being able to switch out colors is awesome. Another option is my first cane I ever purchased that can break down and fit into your purse or bag so it's more discreet if you don't need one all the time (paid link).


10. Ornaments - So many options! You can do one like above if someone finally got a diagnosis, or there's some others I'm also eyeing that have anatomy of different organs (I SO want the kidney one). My friend has done it again with her Spoonie Sister Shop!


11. Specifically Designed Makeup - This founder/make up artist created something I think there was a huge need for. The mascara, eyeliner, and 3-in-1 brow product are made for unsteady hands or someone who has issues with grip like 🙋‍♀️ I made sure to not reccomend anything I haven't tried and actually use so please know I approve of, which I have to be even more careful what I use because of my sensitive skin and reactions.


12. Something Cozy - Definitely not unique, but always a hit - a blanket (there's even a Hanukka one), pillow, socks, or slippers a chronic illnesser will always enjoy and appreciate being given as a gift.


13. Awareness Gear or Shirts - I've shared previously some of the best places to find them such as the SMASRAS non-profit, but a hospital bag or pill pouch are also a couple ideas you can switch it up with. Hospital trips and taking meds/supps are part of our life so why not get them something cute to cheer them up. You can also show your family member or friend that you care to know what they are suffering with 🖤


14. YuYu Hot Water Bottle - My go-to while traveling and I love that I can tie it if I need to do things around the house while getting a little relief at the same time. They have so many beautiful fabrics or prints to choose from so you can even get a couple to alternate. 



*Things to stay away from*

-Scented gifts like candles or perfume (may have reactions or get migraines if they have MCAS).

-Food, candy, or beverages with gluten, dairy, or caffeine (you never know if someone has intolerances or allergies so always safe to ask first).

-A yoga book or piece of fitness equipment (unless they are a yogi or fitness buff and you know they'd enjoy). Don't offer something in hopes it'll "cure" their lifelong chronic illness. Something to help give relief is always welcome though like Epsom salt or TENS unit.




Any items you think should be included? What's been the best or worst gift you've received?

 


11/25/2020

Thankful & Grateful 🍂

Last year at Thanksgiving I couldn't physically eat more than 2 small bites or drink more than a sip. We were even surprised I could make it to my sister's house to celebrate the holiday (I know it definitely was from finally having pain medicine), but it was still mostly spent on the couch.


I am five months post surgery and I think it'll be more like a year before I feel recovered from surgery and will have energy again, but tomorrow I will be able to eat as much as I want and won't have to be sitting the whole day. Although the coronavirus has impacted what our Turkey Day looks like this year, we are still feeling thankful and grateful for all our blessings and all of you. 


Here are a few crafts we are doing with our girls:






Happy Thanksgiving!



11/06/2020

Chronic Illness Style: Comfort


As someone with chronic illness, wearing comfortable clothes has always been a priority, even how they feel on my skin can be a factor. With my vascular compressions I couldn't have anything that was too tight on my abdomen or pelvis. When I got back from Germany my sister was excited to tell me about some clothes she had tried that were super cute, but super comfy. When she came to visit the first time once I was home she ended up bringing some that I could try on to see what I thought. I ended up loving a few pieces, which she gifted me with while I recovered from surgery. 


These are all the pieces she gave me. Names & sizes below. Black & turquoise shorts are ones I already had in my closet that aren't Zyia brand, but matched the tank perfectly.

5’5 150
Bomber shorts M
Havana Tank M
Bengal tank S
Grid bra M
Unwind joggers S
Nimbus tank M


I decided to throw a Zyia party to win some rewards for Christmas gifts and possibly a few I've had my eye on, but also loved the idea sharing with my family and friends a brand I've grown to love. Options to order start on Monday and will be the rest of the week. What I enjoy that my sister does is share ideas how to wear pieces (my style always has to be multifunctional where I can dress a piece different ways) or some of the parent kid matching outfits they have.


If you'd like to browse my party: 


My sister's page if you'd like to follow or even throw your own party: 


Have you tried Zyia? Do you have any favorite pieces? Are there other brands that are your go-to for comfort or seem to be made for chronic illness wear? Please share below in the comments 👇



11/05/2020

Support Groups

When I first joined the Facebook Support Groups, I didn't know what to expect. I had no idea they would help navigate my health more than any medical practitioner to finally figure out what was causing my debilitating pain and get surgery. I also didn't realize that I'd meet forever friends without leaving my house or have to see them in person. 

 

Of course there's always a positive and negative to everything. For me personally it was beneficial when asking a question for direction and feedback about doctors and next steps when I wouldn't know where to turn. I would also be blown away how my experience would become valuable to others and they would soon reach out to me so I could give back. I think you do just have to realize that some people become very passionate about one certain surgery or a certain doctor not understanding everyone doesn't always have the same options, finances, or location. 


I also think a problem is that a lot of doctors don't understand that us patients can be interested in actual research journals/studies and not just "googling" to scare ourselves with worst case scenario. It's been incredibly rewarding to find doctors who see the value and actually are impressed by the knowledge we have about our condition, body, and treatment options and get to have very interesting conversations that might benefit their other patients. The goal of the support groups is to give hope and to spread awareness so everyone can get an early diagnosis and have the same access to treatment. 

 

 MALS-

SMAS -

NCS-

MTS-

PCS- 

 TOS-

 Multiple Vascular Compressions-

EDS-

Texas EDS -

Endometriosis-

Mother with EDS or Chronic Illness-

 EDS Related Conditions-

POTS-

MCAS-

PICC Line-

 

Are there any that you've been in that you would love to share because they've helped you? You have to keep in mind before these groups so many had to navigate their health in the dark, but they didn't want others to suffer so they created them 💜 If you haven't thanked an administrator of the group or someone you know who advocates for awareness, please do. They don't hear it enough and sacrifice time and energy that I don't think many realize. If you also find a good doctor who listens and encourages you to share your knowledge, make sure to thank them as well.



11/03/2020

Life Lessons from My Mom that have Helped with Chronic Illness

I didn't finish this post in time on my mom's birthday, but as I've learned from Lesson #2 below, it's ok ☺ The night after we left celebrating Memaw's birthday I was looking through old blog posts. I stumbled on this post where I said "I love you mom and I can't wait to celebrate with you when we finally get those answers we've longed for, for so many years." I honestly feel like we've been celebrating the past 4 months, grateful every day, and will continue because that's what you've taught me.


This past year there were a lot of times I felt like a failure as a mother, but Memaw would come to the rescue and do things with the girls that she'd do with me and my sister that I cherished so I didn't feel like they were missing out. I'm fortunate that she taught me so many things growing up that would benefit me with my chronic illness.


1) Work ethic - even during surgery recovery I was going to make myself get up and walk because I work hard and it pays off.


2) Sometimes you just have to let things go. I know there were many times I had expectations and unforeseen circumstances happened, but I've been able to cope because she taught me that early on.

 

3) There's always a reason. That's why determination is so important.


4) Never stop learning - if it's new research on EDS or something I learned from a sermon at church. You can always learn something new.


5) Health matters and being proactive matters - there are things we can do to better ourselves and improve our health and we should continuously stay up to date with them.


6) Everything in moderation - sometimes you just need to celebrate with something special for a holiday or a mood booster.


7) Always be kind. Enough said.


8) Focus on what really matters. What's the big picture? In the big scheme of things, is this really a big deal?


9) Even the smallest things (like a Dr Pepper & Hershey Bar) can be a party or special event and end up turning into a tradition.


10) I'm proud of you - she always told us and it inspired me to always want to do more things to make her proud.


11) Visualize - she used to teach me and tell me to do this in my swimming and I think it's the biggest lesson because I've learned how to turn everything into something positive, even the most difficult hardships.


12) Belt it out in the car - this is just good for your soul (crying allowed too).


13) Nature is most healing and animals most giving. Nothing like being outdoors or at the ranch and taking care of your horse, or planting something that can feed your cows.


14) Dancing can make your heart sing, but even better is watching your own child dance. I'll never forget the words she wrote in a note with flowers after a performance. I think the same thing every time I watch my daughters dance.


15) A smile can make a difference. As I've said before it's been my biggest testimony to smile even while suffering.


Happy 65th Birthday Mom, I love you. Thank you ❤


10/28/2020

Further EDS & Comorbidities Education



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.
 



 
 
For my friends in other countries, unfortunately they don't have the above videos in other languages, but the Ehlers-Danlos Society translated their 2020 Summer Virtual Conference and there's a ton of great speakers about EDS & comorbidities. If you'd like to read any of the paper and articles below, you can enter the link into this page -> https://www.ehlers-danlos.com/2020-virtual-summer-conference/relive-our-2020-virtual-summer-conference/ (and then just pick your language to translate).


Best paper to read:
 
 
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.”


Dr. Forest Tennant presents “Managing Intractable Pain in Ehlers-Danlos” Published on Apr 8, 2015 https://www.youtube.com/watch?v=pLw29ndmLcA

(He started out primarily treating cancer patients, as a specialist in intractable pain.)





 

The Ultimate EDS Symptom List

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 
  • Scoliosis or lordosis - We believe this is the cause of my multiple vascular compressions
  • 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
  • Piezogenic papules on the heel - You have press your heel down on the floor for them to pop up
  • 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 👇
  • Pubic Symphysis Dysfunction (now called Pelvic Girdle Pain) - I wish I had known and made more of a request to get imaging because I was told it was just normal to feel that way, but I was in a lot of pain
  • 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)
  • Bleeding & hemorrhaging - My youngest's birth
  • 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!




10/26/2020

Germany FAQ

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.

Q: What did you bring to Germany?

 A: I actually created this specific post to help with that :)


Q: What symptoms did you have?

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.




10/25/2020

Traveling to Surgery -> What to Pack

 Overpreparedness + Obsessive List Maker = Me

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)
  • Picture board translator like this - https://amzn.to/2Ex7ngs #paidlink
  • 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
  • Your surgery playlist or you can borrow mine :)
  • 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)
  • Compression socks like these cute ones - https://amzn.to/3hrCQ27 #paidlink
  • Slippers or cozy socks
  • 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.