Surgery With Lipedema

Surgery with Lipedema and its co-occurring conditions can be both unexpected and quite difficult to navigate. Being properly prepared can mean the difference between a successful outcome and further life complications. I would like to share my experiences and learned lessons from two unexpected and three urgent surgeries I endured from 2020 to the present in the hopes it can help others develop a plan in case you find yourself in this situation.

BMI and Surgical Risk Assessment

Surgery of any kind carries a risk of complications. As a stage 4 woman with lipo-lymphedema and a body mass index (BMI) over 60, surgery carries even a higher risk of complications. Most surgeons won’t even consider performing surgery on someone my size unless it is a life-threatening situation. They use the BMI measurement as their first assessment to determine fitness for surgery.

The BMI number should NOT be the only criteria used to determine fitness for surgery. Doctors need to evaluate the status of your Lipedema, lymphedema (if present) and other identified medical conditions to ensure you are stable to endure surgery and won’t present any challenges post-surgery. Lipedema is NOT the same as obesity but does carry its own risks during and post-surgery. More training is necessary for doctors and the surgical team in working with people that have Lipedema and its co-occurring conditions, especially when in the later stages.

Medical professionals also need to validate your cardiovascular system, lungs and blood pressure to ensure all are within acceptable range to support anesthetization, the trauma of surgery and recovery. Your surgical team may also need to administer additional medications to help stabilize your system during the process. This should all be pre-determined through tests and labs performed as a pre-operative evaluation.

Planning is the best way to ensure a successful surgery. This can be particularly important should you need emergency surgery and cannot speak for yourself at time of admission. I will outline below key preparations and planning you should take now to best prepare yourself and family should a surgical need arise.

Personal experience: I present with a high BMI, very limited mobility with extremely heavy and deformed hips and legs from lipo-lymphedema. I also have several co-occurring conditions (MCAS, Celiac disease, POTS, hEDS, estrogen dominance, no thyroid, kidney stones and few other items) plus take several daily supplements. These are all carefully evaluated and planned for prior to surgery. Thankfully my heart and lungs are strong and my blood pressure is (usually) in a good range.

Planning

Planning is the most important thing you can do now BEFORE a crisis hits! Some details may not be determined upfront but there is much you can do now to make weathering the crisis a lot less stressful for both yourself and your family. Here are some helpful things to consider doing now.

Legal Documents

I sat with my mom in February 2020 and helped her complete her Advanced Directive, a Power of Attorney (PoA) and her Will prior to her starting chemotherapy and radiation treatments for cancer in March. As uncomfortable as it felt, she believed it necessary to be prepared should treatment not work out as hoped. It became necessary to use the PoA in May 2020 to run her daily affairs and sell her home. I then had to execute her will in August 2020 following her death.

Ironically, I found myself in the same exact position in December 2020, just 10 months later, completing my legal documents prior to surgery. As a single mother of two children with real property and physical assets, I needed to make sure all my affairs were in order should I not survive surgery or become incapacitated. I sat with my children and went over all the documents, their secure location, a list of assets and contact information for important family and friends.

If you do not have any family (or are estranged from family) you should entrust your legal documents to a very close friend, your legal counsel or upload all legal documents to a secure service where someone can locate and execute your legal decisions.

I would strongly suggest if you have not completed any of your legal documents that you plan to address this very soon. There is a peace knowing that if anything unexpected happens your family knows your exact wishes, can act on your behalf or know how to handle your assets! You may also want to consider uploading a copy of your legal documents into your health portal so they have immediate access to your Advanced Directive, POLST choices and PoA contact information.

Medications

Identify ALL medications and supplements you take on a regular basis as well as those you take as needed. Share this list with your doctor or pre-operative team to determine which ones they want you to stop ahead of surgery time. They may actually want you to bring in the original bottles for closer analysis.

Prescription medications are the highest priority and most can probably be taken up to the time of surgery. There are exceptions, such as blood thinners, opioids, NSAIDS, birth controls and other medicines that interfere with anesthesia or ability to clot. Your doctor will instruct you which ones to stop and how far in advance.

Supplements can be a bit tricky and also need to be evaluated. I was able to take most of mine up until the day before surgery (Vitamin C, D, magnesium, PQQ and a daily antihistamine). I had to discontinue COQ10 and Quercetin a week before surgery. Again, your doctor will review your current supplement list and advise which ones to stop and when.

As a precaution you may want to create a small laminated list of all your current medication and supplements. It may also be a good idea to list any allergies, special physical conditions (like Lipedema) and any special considerations you need for surgery on the other side of the placard. This would be useful should you be incapacitated when admitted and cannot verbalize all these items. Also let your family know where you are carrying the placard in case they are in possession of items at time of admittance.

Personal note: I use an online document service called Evernote where I keep various types of documents including my medication and supplementation list. The list is updated every time I add or remove a medication or supplement or change a dosage. This is shared with my family and best friend to reference for medical staff should I be incapacitated.

Care and Equipment

There are several questions you will need to consider in determining your pre and post surgical needs, especially if it will impact your Lipedema or lipo-lymphedema.

• Do you need help obtaining or executing pre-surgery procedures at home?
• Do you need extra assistance getting to your surgery and home again?
• Will you have family, friends or professional healthcare to assist you at home? Or will you need to recover in a rehabilitation center?
• Will you need special mobility aids to get around the house from your surgery or impacts to your Lipedema?
• Will you be able to continue your daily Lipedema or lipo-lymphedema care once at home? Or will you need assistance performing those tasks (pumping, brushing, wrapping, etc.)?
• If you are unable to pump or wrap will you have someone available who could do MLD (manual lymph drainage)?
• Will you need (additional) medication to help with surgery pain or Lipedema pain?
• Will you need an antibiotic treatment? Do you take probiotics to help balance the gut damage of antibiotics?
• Will you need assistance making meals or doing basic housework?
• Will you need assistance making follow-up care visits?

Personal experience: after one of my surgeries I needed assistance showering while I supported the incision area. After all my surgeries it was several days before I could resume pumping and wrapping my legs. I either had to remain in bed or seated with my legs elevated most of the day to minimize the pain from leg swelling. Unfortunately, I did not have anyone who could perform MLD during this time. Family had to make meals and do light cleaning for at least a week. I was so grateful for my rollator where I could walk supported for very short trips and sit when needed. My doctor made sure I had opioids for pain but thankfully, Tylenol was sufficient for most pain.

Preparing for Surgery

Assessing Your Physical Condition

Outside an emergency, how ready are you for surgery? For Lipedema patients you need to asses the status of any open wounds and its current condition. Are they recent and still infected or are they closed and nearly healed? Are you taking any antibiotics or other medication for it/them?

Lipedema patients also need to alert their medical professionals of any rashes, especially those that are warm to the touch and red in color. This could indicate a cellulitis infection, which is very serious and may impact the decision to proceed with surgery.

There are also plenty of non-Lipedema based physical conditions you may need to evaluate prior to having surgery. These could include broken bones, respiratory issues, digestive issues, undocumented heart issues such as palpitations, rhythm abnormalities, or fluid buildup, frequent headaches and more. Make sure you alert and discuss these issues with your Pre-Operative Team.

Meeting With Your Pre-Operative Team

Your Pre-Operative Team should be the professional(s) that approve your fitness for surgery and document and special conditions required to ensure a successful surgery. They will review all your medications and supplements, indicating which ones to stop prior to surgery. They will also look at EKGs, image scans, blood pressure history, key blood work, known allergies and other tests to identify any areas requiring further analysis or disqualifying you from surgery.

You can also ask them to document any special needs you have for surgery. This could include ONLY taking your blood pressure on your lower arm (as they will have an automated blood pressure going during the surgery and post-surgery), any sensitivities to tapes and adhesives, body positioning on the table, the need for special medications during and post-surgery and required mobility assistance.

Working With Your Surgical Team

You will want to review the entire surgical plan with the surgical team before the actual surgery. Your surgeon or lead doctor will outline how they plan to move through all the steps of the surgery, which should also include any checkpoints where they may need to alter plans or abort the surgery. The surgeon will ask for any final questions or concerns from the team before proceeding.

*Note: not every surgical team performs the review. You should insist on the review, usually done in the operative room just prior to surgery but could be done just before entering the operating room, especially if you are a Lipedema patient or have special needs.

This is also the time they will review any identified special needs you have for accommodating your Lipedema, lymphedema or other co-occurring conditions. Your surgical nurse should be articulating the special needs along with the Anesthesiology team.

Talking With Your Surgical Nurse

You will want to talk with both your pre-operative and surgical nurses about special needs to accommodate not only your immediate surgical area but also needs you have related to Lipedema and co-occurring conditions. These needs may include:

• blood pressure monitoring on lower forearm only
• special positioning to accommodate large areas, folds or lobules on your legs or hips
• additional padding in stirrups to better support your knees
• the need to move legs during surgery, especially during a long procedure
• special bedding or covers for sensitive skin, including tapes and adhesives
• the need for socks or foot coverings for those with Raynaud’s or cold feet from non-movement
• some may also provide warm blankets for your legs, providing your surgery is above your hips

Personal experience: three of my surgeries were in stirrups and required extra padding to support the folds around my knees. They also used rolled towels to lift and support the large lobule on my left leg to minimize discomfort and damage to my lipo-lymphedema areas. My thyroidectomy was three hours long so I asked the team to rotate my legs to the outside and provide a slight lift to my knees and lower legs to accommodate the lobule and my hEDS (hypermobile Ehlers Danlos Syndrome). They did this while I was awake on the table so I could acknowledge my special Lipedema and hEDS needs were met.
This also happened during my recent eye surgery, which was four hours long. We used a special folding bed where we could elevate my legs as well as put pillows under my knees and lobule. My legs, knees and lower back were in better shape post-surgery!

Talking With Your Anesthesiologist

This is often an overlooked team who can certainly contribute to the success of the surgery. You will want to talk with them prior to surgery and then reaffirm your decision once in the operating room to avoid any unexpected outcomes.

Your surgery may require just sedation or “twilight” sleep. This means you will not feel pain during the procedure and will be very drowsy, but not completely asleep. This is used for minimally invasive procedures. Sometimes this is preferred to allow you to breathe on your own and to avoid complications from general anesthesiology. The downside to this choice is the inability to react quickly if serious complications occur as you are not intubated.

Many serious surgeries will be done under general anesthesia where you are intubated and administered heavy sedative medication to keep you asleep during the surgery. The team will monitor all your vitals throughout the surgery and quickly react should any problems arise. The downside to this choice is usually a sore throat, grogginess for a couple hours expelling the anesthesia and possible nausea. (They usually give you anti-nausea medication prior to surgery to reduce this probability.)

Prior to any drug administration you need to discuss any allergies or special conditions that may affect the use of any drugs used during or post-surgery. If you have a histamine condition, such as Mast Cell Activation Syndrome (MCAS), you may need to have Benadryl added to your IV drip for the duration of surgery and into the recovery room. This may prevent severe reactions at the surgery site, blood pressure issues, irregular heart rhythms, oxygen rate fluctuations and possible anaphylaxis. When you find a set of anesthesiology drugs that work for you try to use the same drug set in future surgeries to avoid potential complications.

Personal Note: I need to have Benadryl in my IV drip during surgery and into recovery to avoid what we call “slow rolling” anaphylaxis, which I did experience during my thyroid surgery. I have MCAS and several medicine allergies so choosing anesthesiology drugs and mediating medications are critical for me! I also ask that any pills given to me just prior to surgery be given via my IV so there is nothing in my stomach. My stomach is VERY sensitive and liquid IV options work best for me.

Post-Surgery Care

Transportation

At some point following surgery you will need to navigate your way home. This can be a tricky adventure depending on the type of surgery and your mobility. Here are some questions to address. It assumes someone will be transporting you home and you are not driving yourself.

• Can you get into your vehicle from the hospital door?
• Do you need an ambulance escort home?
• Do you need to use public transit option that accommodates disabled persons?
• Are you able to enter your home and navigate to your room?
• Do you need special equipment available ahead of time to help with mobility issues (wheelchair, walker, rollator, cane, etc.)
• Do you have people available to help you get to follow-up medical appointments?

There is a possibility that some patients may not be going home but rather to a rehabilitation center to continue their recovery. You will need to anticipate that ahead of time and determine if rehabilitation care is financially feasible and the right solution for you. Factors in deciding this route may include the level of medical care you need during recovery, do you have enough family available to provide at home care at the medical level required, do you have children or pets to care for and can you hire temporary caregivers to provide that medical care at home.

Activities of Daily Living

Activities of Daily Living (ADLs) are the tasks you perform each day to care for yourself. ADLs include things like bathing, toileting, dressing yourself, cooking, feeding yourself, grooming, mobility and managing your household.

Prior to leaving the hospital someone from social services should meet with you to ensure you 1) have adequate transportation home or need to make arrangements to transfer to a rehabilitation center, 2) have the tools, medication(s) and devices needed to care for yourself at home during recovery, and 3) need to line up caregiving services to assist you with ADLs while you recover. You will need to determine how much care you need, if any, at home to recover. Be honest with yourself and arrange for caregiving services as you do not want to cause setbacks by overdoing your ADLs.

Caregiving service may be covered under your insurance or partially covered for a length of time during recovery. It is also possible you may have to pay out of pocket for full care. You can consider a professional service or arrange a care schedule from family members and close friends.

Follow-Up Care

Be sure to closely monitor your surgical wound for any signs of possible infection, abnormal bleeding or increased pain. Be vigilant for any medication side effects or unexpected symptoms and call for medical advice or your doctor’s office for guidance.

Attend any scheduled physical therapy services prescribed for your recovery. Be sure to keep all follow-up appointments for stitches removal, wound management, imaging services and other post-surgical care.

Surgery With Lipedema Summary

Surgery of any kind always presents a level of risk. Surgery with Lipedema and its co-occurring conditions can increase the level of risk. Sometimes surgery cannot be avoided and can even be unexpected. Medical professionals will be hesitant to perform surgery on those with higher BMIs, which places Lipedema patients in a precarious position. However, if your medical professionals agree that Lipedema (and possibly lipo-lymphedema) is NOT the same as obesity AND your other body functions are healthy (heart, lungs, immune system, etc.) they may proceed with the surgery noting the increased risks.

It would be prudent to do adequate planning and preparation ahead of time to increase the success of surgery and your recovery as well as provide legal documents for your family to use in unexpected times. Planning and preparation also includes reviewing any possible physical issues, allergies, or special needs you require during and post-surgery. Make sure you go over the entire surgical plan PRIOR to surgery with your team noting and special accommodations you need. Follow the pre and post-surgical medication and supplementation guide.

Ensure you adequate transportation home and to follow-up appointments. The hospital should make sure you have the medical devices, medication and care you will need during your recovery. Outline the need for caregiving services to meet your ADLs until you are healed to resume normal activities.

With proper planning and preparation you can successfully navigate a surgical event even if the surgery is unexpected. I hope this advice and my personal experiences can help you in planning for any future surgery.

To your improved health!!