How do people make it through waiting for surgical consult??

Posted by jorgy20 @jorgy20, Oct 27, 2022

I am curious how people deal with waiting for their surgical consult and then however long it takes to get to surgery?

I am on my 9th week of waiting and my consultation is now 2 weeks away, but I’ve been confined to my home, only able to work standing up a couple hours a day and going mad waiting. My job entails frequent travel to see our clients and that has been now 11 weeks off and no future travel planned. Im grateful that my employer is supporting me in this process, but always in the back of my mind is for how long….. I need to get this fixed and back to work. When I ask about the time all this takes I don’t ever really get an answer, so I thought I’d ask others in the same boat.

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@jorgy20 Dain,

Oh, I know how it is to wait and worry. The wait you describe is kind of typical when seeking a good specialist. This journey will take lots of patience because you can't hurry healing. Your body needs the time it needs. I understand being worried about your job too, but that is what medical leave is for. It sounds like your employer is somewhat accommodating in having you work from home as you can. This is your time to put yourself first to take care of your needs. You were offered an appointment because a doctor at Mayo thought they could help you.

For comparison... my situation was that I went to 6 surgeons before I found one who was willing to help me and he was at Mayo. The others misunderstood the symptoms and didn't want to take a chance on me. That took 2 years before I found help and was offered surgery. At that time, I was also taking care of my disabled parents and my dad was dying from end stage heart disease. That was incredibly difficult and I was in a lot of pain and doing physical work to assist them. I had cervical spinal cord compression and I would put a heat wrap on my neck and lay down. I was also grieving for my dad because I knew I was loosing him, and there was nothing that could change that. I would put on headphones and listen to music at night when I couldn't sleep. It helped me relax.

I know it's hard to be in pain. You can likely lessen some of that pain if you can stop putting pressure on yourself because you think you need to be at work with a demanding schedule. Now is your chance to stop, breathe deeply, relax and listen to music you love. Try to calm your mind and place your trust in your decision to seek care at Mayo. When you walk in the door there, you will be greeted by wonderful art that is everywhere because healing begins when you walk in the door and know that you are in a calm environment. For now, do the best you can to put yourself in a mental place like that. Distract yourself with thoughts of good things in your life that will help you escape the stress.

I got an appointment for a Mayo consult 6 weeks after sending my request because there was a cancellation. I had been told it would be about a 3 month wait to get in, but after 2 years of chasing doctors who were not going to help, that was worth the wait. I had my surgery 5 weeks later. Recovery after surgery is going to take time too and it is different for everyone. When you do have your consult, you can ask those questions about what they think your recovery time would be before returning to full duty at work with travel. There will be restrictions for lifting, twisting and bending after surgery.

What things do you like to do for fun and relaxation? Have you visited places on vacation that you're enjoyed? Looking at your pictures from past enjoyable experiences can help you now.

Jennifer

REPLY
@jenniferhunter

@jorgy20 Dain,

Oh, I know how it is to wait and worry. The wait you describe is kind of typical when seeking a good specialist. This journey will take lots of patience because you can't hurry healing. Your body needs the time it needs. I understand being worried about your job too, but that is what medical leave is for. It sounds like your employer is somewhat accommodating in having you work from home as you can. This is your time to put yourself first to take care of your needs. You were offered an appointment because a doctor at Mayo thought they could help you.

For comparison... my situation was that I went to 6 surgeons before I found one who was willing to help me and he was at Mayo. The others misunderstood the symptoms and didn't want to take a chance on me. That took 2 years before I found help and was offered surgery. At that time, I was also taking care of my disabled parents and my dad was dying from end stage heart disease. That was incredibly difficult and I was in a lot of pain and doing physical work to assist them. I had cervical spinal cord compression and I would put a heat wrap on my neck and lay down. I was also grieving for my dad because I knew I was loosing him, and there was nothing that could change that. I would put on headphones and listen to music at night when I couldn't sleep. It helped me relax.

I know it's hard to be in pain. You can likely lessen some of that pain if you can stop putting pressure on yourself because you think you need to be at work with a demanding schedule. Now is your chance to stop, breathe deeply, relax and listen to music you love. Try to calm your mind and place your trust in your decision to seek care at Mayo. When you walk in the door there, you will be greeted by wonderful art that is everywhere because healing begins when you walk in the door and know that you are in a calm environment. For now, do the best you can to put yourself in a mental place like that. Distract yourself with thoughts of good things in your life that will help you escape the stress.

I got an appointment for a Mayo consult 6 weeks after sending my request because there was a cancellation. I had been told it would be about a 3 month wait to get in, but after 2 years of chasing doctors who were not going to help, that was worth the wait. I had my surgery 5 weeks later. Recovery after surgery is going to take time too and it is different for everyone. When you do have your consult, you can ask those questions about what they think your recovery time would be before returning to full duty at work with travel. There will be restrictions for lifting, twisting and bending after surgery.

What things do you like to do for fun and relaxation? Have you visited places on vacation that you're enjoyed? Looking at your pictures from past enjoyable experiences can help you now.

Jennifer

Jump to this post

All good info and much appreciated. My relaxing activities are all really active: skiing, working out, running, playing with the kids, working around the house etc. so I’m pretty active. That I think adds to most of this, which may be why I’m not too sure what to do when laying here. I’m very sorry to hear what you went though. Makes my issue seem pretty easy in comparison. Thank you for sharing your story and responding, it does help. Thank you.

REPLY

@jorgy20 Am I right that your consult is in a few days? You must be getting ready an organized and maybe a little bit excited? I'm sure it feels good to know that you will begin a process to find an answer.

REPLY
@jenniferhunter

@jorgy20 Am I right that your consult is in a few days? You must be getting ready an organized and maybe a little bit excited? I'm sure it feels good to know that you will begin a process to find an answer.

Jump to this post

@jenniferhunter ive made it to Mayo! Medical evaluation bright and early tomorrow followed by surgical consult at 12:30. Very excited to get some answers and hopefully have a definitive (and short) time frame to get whatever they recommend done. Thanks for checking in! Hoping and praying tomorrow is the beginning of the end of dealing with this!

REPLY

@jorgy20 Enjoy the art while you are at Mayo. Often there will be people playing the piano in the Gonda atrium. It's nice place to sit between appointments. There is a nurse who usually plays around 2:30 in the afternoon after her work day.

REPLY
@jenniferhunter

@jorgy20 Enjoy the art while you are at Mayo. Often there will be people playing the piano in the Gonda atrium. It's nice place to sit between appointments. There is a nurse who usually plays around 2:30 in the afternoon after her work day.

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Full day, but they aren’t sure what’s wrong with me. So the search continues.

REPLY
@jenniferhunter

@jorgy20 Dain,

Oh, I know how it is to wait and worry. The wait you describe is kind of typical when seeking a good specialist. This journey will take lots of patience because you can't hurry healing. Your body needs the time it needs. I understand being worried about your job too, but that is what medical leave is for. It sounds like your employer is somewhat accommodating in having you work from home as you can. This is your time to put yourself first to take care of your needs. You were offered an appointment because a doctor at Mayo thought they could help you.

For comparison... my situation was that I went to 6 surgeons before I found one who was willing to help me and he was at Mayo. The others misunderstood the symptoms and didn't want to take a chance on me. That took 2 years before I found help and was offered surgery. At that time, I was also taking care of my disabled parents and my dad was dying from end stage heart disease. That was incredibly difficult and I was in a lot of pain and doing physical work to assist them. I had cervical spinal cord compression and I would put a heat wrap on my neck and lay down. I was also grieving for my dad because I knew I was loosing him, and there was nothing that could change that. I would put on headphones and listen to music at night when I couldn't sleep. It helped me relax.

I know it's hard to be in pain. You can likely lessen some of that pain if you can stop putting pressure on yourself because you think you need to be at work with a demanding schedule. Now is your chance to stop, breathe deeply, relax and listen to music you love. Try to calm your mind and place your trust in your decision to seek care at Mayo. When you walk in the door there, you will be greeted by wonderful art that is everywhere because healing begins when you walk in the door and know that you are in a calm environment. For now, do the best you can to put yourself in a mental place like that. Distract yourself with thoughts of good things in your life that will help you escape the stress.

I got an appointment for a Mayo consult 6 weeks after sending my request because there was a cancellation. I had been told it would be about a 3 month wait to get in, but after 2 years of chasing doctors who were not going to help, that was worth the wait. I had my surgery 5 weeks later. Recovery after surgery is going to take time too and it is different for everyone. When you do have your consult, you can ask those questions about what they think your recovery time would be before returning to full duty at work with travel. There will be restrictions for lifting, twisting and bending after surgery.

What things do you like to do for fun and relaxation? Have you visited places on vacation that you're enjoyed? Looking at your pictures from past enjoyable experiences can help you now.

Jennifer

Jump to this post

Jennifer, thank you for all the information. I have a concern.
Two doctors want to do a cervical fusion on 3 & 4, The 3rd surgeon I saw said he would not advise it at this time. I am 78, my hands are getting worse, and hard to do some things. I am not in unmanageable pain. My question is: Will I cause my body more problems with my stenosis with myelopathy by waiting? Is it harmful to wait? I also have problems with 5 & 6 being bruised a few years ago. that is where I have the most pain.

REPLY
@bondar

Jennifer, thank you for all the information. I have a concern.
Two doctors want to do a cervical fusion on 3 & 4, The 3rd surgeon I saw said he would not advise it at this time. I am 78, my hands are getting worse, and hard to do some things. I am not in unmanageable pain. My question is: Will I cause my body more problems with my stenosis with myelopathy by waiting? Is it harmful to wait? I also have problems with 5 & 6 being bruised a few years ago. that is where I have the most pain.

Jump to this post

@bondar Many surgeons don't want to operate on levels as high up as C3, so you need a good one for that level for surgery. At the C3/C4 level, the nerves that exit the spinal cord there service the neck and shoulders, not the hands on the dermatome maps. If you have central canal stenosis causing myelopathy, that can affect anything below that level in your body. I had central canal stenosis at C5/C6. and I had trouble controlling my arms and weakness in holding them up to push a shopping cart or drive. It was exhausting. I also have thoracic outlet syndrome and some carpal tunnel syndrome, those also affect my arms and hands by compressing the nerves in other locations such as under the collar bone and in the wrist. Do you also have arthritis affecting your hands? Do you feel like the finger joints kind of get stuck and don't move right or is it more a coordination problem and weakness in the hands or arms?

When you bruised C5/C6, was that a spine injury? Did anything change on your imaging that may show some damage at C5/C6? That can affect the hands and arms if there is a problem at C6 through C8 compressing the nerve roots. There really isn't a C8 vertebra, but the way they name the nerve roots, there is a C8.

How did your imaging reports describe the problems.. mild.. moderate, etc? And where did it say the problems are? Why does one doctor advise against surgery? Does he believe it will make you worse and why? How active are you? Are you a 78 year old who likes to get outside and walk or does that tire you out? Do you have other health issues that pose a complication for surgery?

There just isn't a chart that says when a person is too old for surgery, but doctors do have statistics for people in your age group who go through various procedures. Some people are smokers with poor oxygen levels in their bodies and don't heal well or have diabetes and don't heal well. The heart and lungs have to be able to handle anesthesia. Sometimes it comes down to your own gut feeling about how well you would recover. I know I've heard that surgeons may consider a person too old for surgery in their 90's. (I asked once.) They have to consider quality of life and how long a person's life expectancy is. At 78, you might be a person who feels younger than another 78 year old who hasn't take care of their health.

As for the harm in waiting with myelopathy, it depends on how fast things are changing. A surgeon needs to answer that and base his answer on how fast things have changed already as evidenced by your imaging. Sometimes they can't predict it. I saw my bone spurs double in size in 9 months on consecutive MRIs, and was loosing coordination of my arms. I knew I would be disabled if I didn't have surgery, and I got to the point if I bent my neck, I sent a big electric shock down my body because the bone spurs were contacting my spinal cord. Myelopathy doesn't always cause pain. It caused weird pain for me, and 5 surgeons turned me down because they didn't understand it, but one very smart one at Mayo changed my life. Here is my story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
A lot of aging has to do with our choices and if we eat foods that reduce inflammation instead of increasing it. I kind of sense that since you are asking these questions of several surgeons, you may consider yourself as a person who's life can be improved with surgery. My mom went through surgery on her ankle tendons at 87 and she did fine. She was really sleepy and out of it for an extra day because of the anesthesia, and we got the hospital to keep her for another night with oxygen because of that, but otherwise, she recovered and went through some rehab. The problem with her ankle was the result of a fracture, and her not walking because of bad balance, and the tendons shortened up so that her foot was in a twisted position and could not be placed flat on the floor. By cutting and lengthening the tendons, she could have a more normal foot position. She doesn't really walk now, and uses a wheelchair, but she can transfer OK. If she tried to walk on her own, she would end up falling again and has bad osteoporosis. She had a spontaneous spine compression fracture a year ago at age 92 related to severe osteoporosis.

What are your thoughts?

REPLY
@jenniferhunter

@bondar Many surgeons don't want to operate on levels as high up as C3, so you need a good one for that level for surgery. At the C3/C4 level, the nerves that exit the spinal cord there service the neck and shoulders, not the hands on the dermatome maps. If you have central canal stenosis causing myelopathy, that can affect anything below that level in your body. I had central canal stenosis at C5/C6. and I had trouble controlling my arms and weakness in holding them up to push a shopping cart or drive. It was exhausting. I also have thoracic outlet syndrome and some carpal tunnel syndrome, those also affect my arms and hands by compressing the nerves in other locations such as under the collar bone and in the wrist. Do you also have arthritis affecting your hands? Do you feel like the finger joints kind of get stuck and don't move right or is it more a coordination problem and weakness in the hands or arms?

When you bruised C5/C6, was that a spine injury? Did anything change on your imaging that may show some damage at C5/C6? That can affect the hands and arms if there is a problem at C6 through C8 compressing the nerve roots. There really isn't a C8 vertebra, but the way they name the nerve roots, there is a C8.

How did your imaging reports describe the problems.. mild.. moderate, etc? And where did it say the problems are? Why does one doctor advise against surgery? Does he believe it will make you worse and why? How active are you? Are you a 78 year old who likes to get outside and walk or does that tire you out? Do you have other health issues that pose a complication for surgery?

There just isn't a chart that says when a person is too old for surgery, but doctors do have statistics for people in your age group who go through various procedures. Some people are smokers with poor oxygen levels in their bodies and don't heal well or have diabetes and don't heal well. The heart and lungs have to be able to handle anesthesia. Sometimes it comes down to your own gut feeling about how well you would recover. I know I've heard that surgeons may consider a person too old for surgery in their 90's. (I asked once.) They have to consider quality of life and how long a person's life expectancy is. At 78, you might be a person who feels younger than another 78 year old who hasn't take care of their health.

As for the harm in waiting with myelopathy, it depends on how fast things are changing. A surgeon needs to answer that and base his answer on how fast things have changed already as evidenced by your imaging. Sometimes they can't predict it. I saw my bone spurs double in size in 9 months on consecutive MRIs, and was loosing coordination of my arms. I knew I would be disabled if I didn't have surgery, and I got to the point if I bent my neck, I sent a big electric shock down my body because the bone spurs were contacting my spinal cord. Myelopathy doesn't always cause pain. It caused weird pain for me, and 5 surgeons turned me down because they didn't understand it, but one very smart one at Mayo changed my life. Here is my story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
A lot of aging has to do with our choices and if we eat foods that reduce inflammation instead of increasing it. I kind of sense that since you are asking these questions of several surgeons, you may consider yourself as a person who's life can be improved with surgery. My mom went through surgery on her ankle tendons at 87 and she did fine. She was really sleepy and out of it for an extra day because of the anesthesia, and we got the hospital to keep her for another night with oxygen because of that, but otherwise, she recovered and went through some rehab. The problem with her ankle was the result of a fracture, and her not walking because of bad balance, and the tendons shortened up so that her foot was in a twisted position and could not be placed flat on the floor. By cutting and lengthening the tendons, she could have a more normal foot position. She doesn't really walk now, and uses a wheelchair, but she can transfer OK. If she tried to walk on her own, she would end up falling again and has bad osteoporosis. She had a spontaneous spine compression fracture a year ago at age 92 related to severe osteoporosis.

What are your thoughts?

Jump to this post

Many thanks. I will carefully consider the excellent information. I appreciate you giving me so much time. I am truly grateful.

REPLY
@bondar

Many thanks. I will carefully consider the excellent information. I appreciate you giving me so much time. I am truly grateful.

Jump to this post

@bondar If you have other questions or thoughts you'd like to discuss, please ask. You can always tag me by typing @jenniferhunter so I will see your post. You may want to get a few more opinions from different surgeons. Do you also have a primary care doctor that you can ask? Even though, they wouldn't be a surgeon, they can help you with evaluating the information and recommendations from the specialists that you see.

REPLY
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