"Suffering the Slings and Arrows of Outrageous Fortune"

Here is the general plan I have pulled together from Parts 1, 2, and 3 – hopefully it will end up being about 2 printed pages, I just couldn’t get it any shorter and I am not really happy with that. Brevity means a doctor might actually read the document, so I need to figure out how to make it easier to use.

One commentor stated she has her medical info (med list,  surgical/medical history, tests/procedures) printed on note cards, which can easily be copied by the office/ER staff. Something like that could maybe work for this info – perhaps each section could be on a separate card and just that particular info handed to the doctor/ nurse/ lab tech when needed, instead of overwhelming them with 2 printed pages. Something to think about.

Another stray idea is to somehow color code the info. So, for example,  mast cell info might be highlight yellow on the ‘Plan’ document and any additional printed info could be on yellow paper, Pain management info could be highlighted blue and any additional printed info could be on blue paper, and so on. Not sure how this would work, but it might be doable.

My current plan, which could change, is to have a simple folder with this info in my car and in my medical binder. Theoretically, it should just be a few printed pages and I could just pull out whatever was needed at the moment or hand over the whole thing, if that was called for.

The most important thing, I think, is to come up with a system that you are comfortable and will use. I am partial to both a binder with hard copies of any documents AND a digital system as a backup plan. I love the Care Medical History Bracelet – my daughter has one she wears as a med alert bracelet and I am able to store a ton of info on it. I am going to get one (or their USB card, necklace or keychain) for myself to store all of this info and to be my digital backup. I don’t have to wear it, but I can keep it in my purse.

In addition to the info listed below, a list of current medications (doses, reason for taking), doctor’s/specialist’s names and contact info, medical history, mast cell protocols, printed info from EDNF, and anything else that I can think of, will be in my binder and on a Care Medical History Bracelet so it is available for reference. Obviously, this is information to have on hand, not necessarily something I would just hand en masse to a doctor or nurse. The medical bracelet we have allows you to print off a document with all of this information and I am seriously considering doing that and just having it in my folder – it would keep a lot of this info in one place and easy to access.

On to the plan:

In making this plan personalized, I will plug specific information that applies to my daughter and substitute her name for ‘EDSer’ anywhere that particular info pertains to her. As of now, I am planning to also include that general EDS info as well as personalized info. Obviously, this is a good beginning but you would need to add and subtract and personalize where needed.

Blood Draws/ IV

  • EDSers are often hard sticks. Use a butterfly needle and would be best for the most experienced, confident person to do place the IV or do the blood draw.
  • Ask the individual if one site is historically better or worse than another. Consider other sites, other than the arm and hand, if placing the IV is challenging.
  • IV pressure may need to be at a lower, slower rate when administering fluids.
  • EDS blood vessels are fragile and may collapse easily.
  • Use Koband tape instead of a bandaid – this may help minimize bruising.

Diagnostic Imaging

  • Move the x-ray machine around the patient, do not expect the patient to move to get the imaging. An EDS  patient can dislocate effortlessly, do your best to avoid provoking one.
  • If patient presents with severe abdominal or chest pain, CT scan or MRI should be done immediately to rule out rupture.

Surgical Techniques

  • Refer to the Emergency Surgical Suggestions listed in the Emergency Physician’s Reference from the EDNF http://www.ednf.org/documents/cdrombooklet.pdf
  • Stitches should be more plentiful that you would normally use and closer together, to prevent wound dehiscence. Leaving them in longer than usual is also helpful.
  • Use steri strips to close an incision (and lots of them)
  • Expect longer healing times – perhaps twice as long or more than would be expected – and take this into account when restricting the patient’s activities post surgery
  • Use extreme care with the tissue of EDS patients – pulling and tugging at normal strength, or anything that stresses fragile tissue, is unadvisable. Be as gentle with an EDS patient as you would be with a newborn baby, with every move that is made.
  • If you are not familiar with EDS, educate yourself before operating.
  • Minimize blood loss during surgery – EDSers can have bleeding issues, so this is a concern to be aware of.
  • Plan for likely complications and know that the EDS patient will likely be a challenge. Be prepared to think outside the box.
  • Surgery can be done successfully on an EDS patient, it simply requires a bit more care and thought.

Anesthesia

  • EDS patients often metabolize meds oddly. Sometimes huge doses of meds will wear off quickly or be ineffective, other times they will be extraordinarily sensitive to tiny doses and it can even vary within one individual.
  • Local anesthetics often do not work for EDS patients. If they say it hurts and that they can feel it, take them seriously.
  • Mast cell issues  are common with EDS patients. Monitor carefully during surgery, as many of the initial signs of anaphalaxis are obscured during surgery. Refer to emergency protocol info provided*
  • Be very careful when intubating. Be mindful of how fragile the tissue is and avoid causing damage.
  • If neurological symptoms are present, allow the patient to wear a hard collar during surgery to protect the vulnerable cervical spine. An EDS patient’s neck should be protected at all costs.
  • Be very careful of the jaw when intubating.
  • Refer to the Emergency Surgical Suggestions listed in the Emergency Physician’s Reference from the EDNF

Joint Protection

  • Always be mindful of how fragile the joints are.
  • Allow the patient to place themselves on the operating table, before being sedated. If possible, allow the patient to awake on the table and assist in transferring themselves to a gurney.
  • Never pull on an EDS patient’s limbs or try to move them without their assistance. This is of particular importance when the patient is unconscious.
  • Dislocations are very common – allow the patient to reduce one themselves, as they are the expert. If they need help, they will ask.
  • Support the joints, manually or with pillows, whenever possible. Be careful when taking the blood pressure cuff off or with any seemingly simple action that stresses joints.

Skin Protection

  • EDS skin is very fragile and adhesives can be a problem. Be careful with medical tape removal – avoid adhesives if possible.
  • A cosmetic surgeon should be consulted for any (even minor) facial wounds, due to the tendency to scar
  • Incisions need to be closely monitored, wound dehiscence is common for EDS patients, as is infection and other complications
  • Assist the individual in moving if necessary, so as to avoid pressure sores. Remember to not pull on their limbs as you help them.

Pain Control

  • Refer to the EDNF Pain Management Medical  Resource Guide. http://www.ednf.org/documents/MRGPainManagementS.pdf
  • Develop a plan prior to surgery that will ensure the highest level of pain control
  • An air mattress provides the highest level of comfort and the best chance for recuperative sleep. EDSers routinely have problems with sleep, so this is a vital part of good pain control.
  • EDS patients live with high levels of chronic pain and they deserve the best possible pain control. EDS patients often metabolize meds oddly. Sometimes huge doses of meds will wear off quickly or be ineffective, other times they will be extraordinarily sensitive to tiny doses and it can even vary within one individual. Local anesthetics often do not work for EDS patients. If they say it hurts and that they can feel it, take them seriously.
  • EDS patients live in chronic pain and may not show ‘normal’ signs of pain. Remember, they have learned to hide their daily pain to spare family and friends; you will need to try to see beneath the mask they wear.
  • The pain scale commonly used by medical staff is woefully inadequate for chronic pain patients and EDS patients in particular.
  • Nausea is a huge  issue for many EDSers, take aggressive steps to treat it after surgery.

Mast Cell Complications

I haven’t totally finished this section, which is ok because it is probably the most individual of all. Check out http://www.tmsforacure.org/documents/ER_Protocol.pdf  This gives a ton of great info that I will be printing off to keep available to share in an emergency.There is a list of medications that should be avoided and a list of meds that are generally ok. This is a very individualized matter though, so keep a record of any medication reactions you might have had in the past.There is also a section on planning surgery, which would be invaluable when developing a plan for planned or emergency surgery. Also, if you have been diagnosed with masto or MCAS (Mast Cell Activation Syndrome) obviously discuss this with your specialist and get their recommendations.

Medical Team

  • Communication is key – listen to the patient, they are an expert on their own body and likely know more about EDS than any doctor who might treat them.
  • When there are medical decisions to be made, present the options to the patient and give them information to help them make a decision.
  • Never forget how out-of-the-ordinary an EDS body is. It can defy logic – the impossible is often very possible for an EDSer. They can dislocate with no trauma whatsoever. They can dislocate countless times a day. If they say they can feel a procedure when they shouldn’t, believe them.
  • Dealing with an EDSer requires out-side-of-the-box thinking. Lateral thinking rather than linear thinking. Search for solutions, include the patient in those discussions.
  • The condition of an EDS patient can change rapidly, monitor carefully.
  • Every EDSer deserves to be treated with respect and compassion.

Obviously, this is large amount of basic information and needs to be organized into something usable.  As I said, I will be customizing this for my daughter and will have it available at all times. Feel free to copy this and personalize it for yourself, adding and subtracting as needed, so that it works the best for you and your own system of medical information.  As always, feel free to share your thoughts with me!

My sources:

I took some of this info directly or in part from http://arthritisinsight.com/medical/surgery/eds.html  This was part of the material I referred to when I spoke of filing information away when I first started researching EDS. I don’t know where the original article is…

I also used the EDNF ER/Surgery booklet as a reference. I really wish it were printable.

A bunch of conversations on Inspire from various EDSers who have been through surgery.

And I incorporated a few suggestions from my readers – I greatly appreciate the contributions!

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Comments on: "Surgery/Emergency Tips Part 4 – A Plan" (4)

  1. Michelle said:

    Thanks so much for all the info Beth. My daughter is scheduled for gastric pacer surgery in July at Nationwide Children’s in Columbus. The info you have gathered here will be very helpful not just to us to to many others.

    Praying for a pain free day at your home and mine.
    Kymama- Michelle

    • Oh, I hate to hear that but hopefully it brings her some relief. I remember one of you mentioning it on Inspire so I knew it was a possibility.

      I really hope all of this info helps somebody -if you can use it, that would be fantastic! Em’s surgery turned out ok, but I don’t think it was because of anything I did – we were just really blessed. I do wish I had some of this written down instead of standing in the ER trying to remember everything. I would do anything to avoid that experience again and hope to help others avoid it too!

      As I was working on this series, I actually had readers contacting me to tell me they were going to use what I came up with, so I felt like I had to carry on. Thanks for the encouragement and I hope your daughter has a quick recovery from her surgery!

  2. Beth,

    This is absolutely awesome. Thank you so much for putting it together.

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