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jlfisher56
@jlfisher56

Posts: 64
Joined: May 02, 2017

Chronic Back Pain for Years

Posted by @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

REPLY

@contentandwell

@lioness I am very happy to live here in the northeast, about 55 miles from Boston and now go there for almost everything, but I had no idea that in SoCal it wasn't good. My son's gf was a nurse at UCLA Medical Center before they recently moved to Denver and she always said how wonderful it was there. She had been around because before settling there she was a traveling nurse. I know it's not quite as high up in the ratings as some of the Boston hospitals but it is pretty high so I just assumed that other hospitals out there would be too. Of course Cedars is supposed to be great too.
JK

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@contentandwell Like most areas, where there are several major hospitals there are a variety of experiences. Here in Los Angeles area, besides UCLA Med Center, there is Keck USC, Cedars Sinai, Good Samaritan, Hoag Memorial, Huntington Memorial, and others. I think each has their own strengths. Myself, due to kidney issues, my preference is Keck USC or Cedars Sinai.
Ginger

@JustinMcClanahan

Ronnie, best of luck on your surgery. Please let the group know how things turn out!

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Hi, Hosta here…I don't know where you live or what time your surgery is to be! I would like to add my prayers for a successful surgery, Please let us know how you are!

Liked by grandmaR

@gingerw

@contentandwell Like most areas, where there are several major hospitals there are a variety of experiences. Here in Los Angeles area, besides UCLA Med Center, there is Keck USC, Cedars Sinai, Good Samaritan, Hoag Memorial, Huntington Memorial, and others. I think each has their own strengths. Myself, due to kidney issues, my preference is Keck USC or Cedars Sinai.
Ginger

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@gingerw this is true, they do each have their own strengths. For my knee replacement I did not go to MGH, I went to Brigham and Women's which is a "partner hospital" with MGH. My ortho there is wonderful and I wanted him to do the surgery.
Here I am, not that far from Boston, but I consider the hospital care here to be horrible after having been in there about 3 times prior to my liver transplant. I hope to never have to go there again. I told my husband if I was ever in an emergency situation to get me there and then have them send me by ambulance to MGH. Interestingly, I have been through the ER department there and I thought they were good. It's just their inpatient care that is sadly lacking.
JK

@contentandwell

@gingerw this is true, they do each have their own strengths. For my knee replacement I did not go to MGH, I went to Brigham and Women's which is a "partner hospital" with MGH. My ortho there is wonderful and I wanted him to do the surgery.
Here I am, not that far from Boston, but I consider the hospital care here to be horrible after having been in there about 3 times prior to my liver transplant. I hope to never have to go there again. I told my husband if I was ever in an emergency situation to get me there and then have them send me by ambulance to MGH. Interestingly, I have been through the ER department there and I thought they were good. It's just their inpatient care that is sadly lacking.
JK

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So true, @contentandwell
Each hospital in my area has their strengths and weaknesses as well. It takes time to find the best place.

@contentandwell

@lioness I am very happy to live here in the northeast, about 55 miles from Boston and now go there for almost everything, but I had no idea that in SoCal it wasn't good. My son's gf was a nurse at UCLA Medical Center before they recently moved to Denver and she always said how wonderful it was there. She had been around because before settling there she was a traveling nurse. I know it's not quite as high up in the ratings as some of the Boston hospitals but it is pretty high so I just assumed that other hospitals out there would be too. Of course Cedars is supposed to be great too.
JK

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@contentandwell yes the bigger hospitals are good but Im speaking of the smaller hospitals and more the problems are with my,not all, insurance systems Back east I went into the Pittsburgh hospitals and smaller ones where I worked . I would have loved to been a traveling nurse but didn't.I only moved to Ca after retirement no family left there ,my son,grandson drew me out here I still love the east Western Pa.

I have been suffering from chronic pain in my lower back (Sacrum area) and pelvic (entire pelvic from left side to right) for about 2 years. I have had several doctors check with zero source results. Since I have normal lab results little has been done.
One doctor seemed to question me as if I was an addict seeking prescription drugs. He did nothing more other than provide hormones pills which did not help.
Another doctor did exploratory surgery and found that my uterus was abnormal thus performed a hysterectomy (removed uterus, cervix and left both ovaries). It was a overnight change because the pain has decreased. Before the surgery I would have to lay my head on the desk, stretch, add pressure to my pelvic area, change my breath, etc to refocus and get back to work. Now, the pain still exists. It is at a lower pain level. It has been 5 months since this surgery.

I went into my primary care doctor who has been wonderful over the years for my family. However, he seems to have stopped trying to help figure things out with a comment of "we can do so much then have to leave it up to to the Lord". I agree with the statement but feel that chronic pain isn't normal and I should not have to live with each and every day.

My symptoms are below.
1. continuous Sacrum pain that ranges from a pain level of 3-6 on a 10 scale. There are intermittent peaks that leads me to take tylenol & ibuprofen combination. It only tappers it.
2. continuous pelvic pains. These are difficult to describe. It ranges from feeling like a pains of an extremely full bladder without a need to urinate to heavy menstrual type cramps .
3. After going to the bathroom (either BM or urinate), the pain level increases about 2 minutes later
4. When getting up in the middle of the night to check on kids, by the type I get back to my room, it hurts to move. I sleep with a heating pad (automatic shut off). The heat helps me to relax enough to go back to sleep.

Symptoms I DO NOT have are below.
1. Do not have leakage when sneezing, laughing, etc
2. Out of commission because I remain active (mother of 3 is busy, work full time, and active home remodel projects)

I am uncertain of what to do next to try to figure out this pain. It never stops completely.

Has anyone experienced similar issues? Any ideas?

Liked by grandmaR

@living_strong

I have been suffering from chronic pain in my lower back (Sacrum area) and pelvic (entire pelvic from left side to right) for about 2 years. I have had several doctors check with zero source results. Since I have normal lab results little has been done.
One doctor seemed to question me as if I was an addict seeking prescription drugs. He did nothing more other than provide hormones pills which did not help.
Another doctor did exploratory surgery and found that my uterus was abnormal thus performed a hysterectomy (removed uterus, cervix and left both ovaries). It was a overnight change because the pain has decreased. Before the surgery I would have to lay my head on the desk, stretch, add pressure to my pelvic area, change my breath, etc to refocus and get back to work. Now, the pain still exists. It is at a lower pain level. It has been 5 months since this surgery.

I went into my primary care doctor who has been wonderful over the years for my family. However, he seems to have stopped trying to help figure things out with a comment of "we can do so much then have to leave it up to to the Lord". I agree with the statement but feel that chronic pain isn't normal and I should not have to live with each and every day.

My symptoms are below.
1. continuous Sacrum pain that ranges from a pain level of 3-6 on a 10 scale. There are intermittent peaks that leads me to take tylenol & ibuprofen combination. It only tappers it.
2. continuous pelvic pains. These are difficult to describe. It ranges from feeling like a pains of an extremely full bladder without a need to urinate to heavy menstrual type cramps .
3. After going to the bathroom (either BM or urinate), the pain level increases about 2 minutes later
4. When getting up in the middle of the night to check on kids, by the type I get back to my room, it hurts to move. I sleep with a heating pad (automatic shut off). The heat helps me to relax enough to go back to sleep.

Symptoms I DO NOT have are below.
1. Do not have leakage when sneezing, laughing, etc
2. Out of commission because I remain active (mother of 3 is busy, work full time, and active home remodel projects)

I am uncertain of what to do next to try to figure out this pain. It never stops completely.

Has anyone experienced similar issues? Any ideas?

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Hello @living_strong, welcome to Connect. You may notice I moved your discussion and combined it with one titled, "Chronic Back Pain for Years." I did this so your post would go to all of the Connect members already discussing chronic back pain and so you could read through some of their previous posts. You may also find the Women's Health group of interest, you can find that here, https://connect.mayoclinic.org/group/womens-health/. While we wait for other members to jump in, have you considered seeking a second opinion. That is not to say that your primary physician is not a good one, but many professionals think that second opinions are valuable as they can offer different insight and sometimes a more definitive diagnosis.

@JustinMcClanahan

Hello @living_strong, welcome to Connect. You may notice I moved your discussion and combined it with one titled, "Chronic Back Pain for Years." I did this so your post would go to all of the Connect members already discussing chronic back pain and so you could read through some of their previous posts. You may also find the Women's Health group of interest, you can find that here, https://connect.mayoclinic.org/group/womens-health/. While we wait for other members to jump in, have you considered seeking a second opinion. That is not to say that your primary physician is not a good one, but many professionals think that second opinions are valuable as they can offer different insight and sometimes a more definitive diagnosis.

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@ Justin McClanahan
Yes, I am planning to go to a 4th doctor. Since my pelvic area also has unexplainable pains it has been chalked up as a female issue. Now that I have had a hysterectomy, the new response is religion base. I do believe in God but know sitting back a waiting for a miracle isn't helpful.

Liked by grandmaR

@living_strong

@ Justin McClanahan
Yes, I am planning to go to a 4th doctor. Since my pelvic area also has unexplainable pains it has been chalked up as a female issue. Now that I have had a hysterectomy, the new response is religion base. I do believe in God but know sitting back a waiting for a miracle isn't helpful.

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Have you had an MRI on your lower back ? If not I would be asking for one

Liked by grandmaR

@gingerw

@contentandwell Like most areas, where there are several major hospitals there are a variety of experiences. Here in Los Angeles area, besides UCLA Med Center, there is Keck USC, Cedars Sinai, Good Samaritan, Hoag Memorial, Huntington Memorial, and others. I think each has their own strengths. Myself, due to kidney issues, my preference is Keck USC or Cedars Sinai.
Ginger

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@gingerw
Good Morning!
Just as we investigate and research doctors, we should do the same with hospitals.
Hospitals are rated, too.
If you find a doctor you like, they will also provide the hospital the doctor is associated with.
Don't assume that just because you know the name of a hospital, that it is good.
Many hospitals have areas they specialize in, just like doctors.
Good Luck!
Here's to a pain free day!
Ronnie (GRANDMAr)

Liked by gingerw

@hosta

Hi, Hosta here…I don't know where you live or what time your surgery is to be! I would like to add my prayers for a successful surgery, Please let us know how you are!

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@hosta
Good Morning,
I don't know when you had your surgery or when you will have it.
In any case, praying for a positive outcome.
Ronnie (GRANDMAr)

@living_strong

@ Justin McClanahan
Yes, I am planning to go to a 4th doctor. Since my pelvic area also has unexplainable pains it has been chalked up as a female issue. Now that I have had a hysterectomy, the new response is religion base. I do believe in God but know sitting back a waiting for a miracle isn't helpful.

Jump to this post

@living_strong
Good Morning!
It is always good to get an extra opinion. May I ask why you are going to your 4th doctor?
I am a little confused. Just because your doctor did a hysterectomy and they can't find anything, they are saying your issue is religion? Sorry, that does not make sense to me, unless I just don't understand.
I have a BIG problem when a doctor writes off a problem when they can't 'find anything.'
There are so many tests that the doctor can take.
Good luck!
Hope you are pain free today!
Ronnie (GRANDMAr)

@living_strong

I have been suffering from chronic pain in my lower back (Sacrum area) and pelvic (entire pelvic from left side to right) for about 2 years. I have had several doctors check with zero source results. Since I have normal lab results little has been done.
One doctor seemed to question me as if I was an addict seeking prescription drugs. He did nothing more other than provide hormones pills which did not help.
Another doctor did exploratory surgery and found that my uterus was abnormal thus performed a hysterectomy (removed uterus, cervix and left both ovaries). It was a overnight change because the pain has decreased. Before the surgery I would have to lay my head on the desk, stretch, add pressure to my pelvic area, change my breath, etc to refocus and get back to work. Now, the pain still exists. It is at a lower pain level. It has been 5 months since this surgery.

I went into my primary care doctor who has been wonderful over the years for my family. However, he seems to have stopped trying to help figure things out with a comment of "we can do so much then have to leave it up to to the Lord". I agree with the statement but feel that chronic pain isn't normal and I should not have to live with each and every day.

My symptoms are below.
1. continuous Sacrum pain that ranges from a pain level of 3-6 on a 10 scale. There are intermittent peaks that leads me to take tylenol & ibuprofen combination. It only tappers it.
2. continuous pelvic pains. These are difficult to describe. It ranges from feeling like a pains of an extremely full bladder without a need to urinate to heavy menstrual type cramps .
3. After going to the bathroom (either BM or urinate), the pain level increases about 2 minutes later
4. When getting up in the middle of the night to check on kids, by the type I get back to my room, it hurts to move. I sleep with a heating pad (automatic shut off). The heat helps me to relax enough to go back to sleep.

Symptoms I DO NOT have are below.
1. Do not have leakage when sneezing, laughing, etc
2. Out of commission because I remain active (mother of 3 is busy, work full time, and active home remodel projects)

I am uncertain of what to do next to try to figure out this pain. It never stops completely.

Has anyone experienced similar issues? Any ideas?

Jump to this post

@living_strong
Good Morning,
I know how exhausting and frustrating it can be when you know something is wrong and no one either believes you or can't find out what is wrong.
I've been going through something similar.
I have been suffering with back issues for years.
After seeing pain specialists for more than10 years, I realized that that route was now useless.
Those doctors did all they could.
2 of the 5 pain doctors I've see over the years told me that if the shots stopped working, then seeing a neurologist was next
I did that. My most recent pain specialist could not help me after 5]4 years, I decided I was done and needed to go further.
I did some research and found a neurosurgeon.
He did the standards, PT, shots, x-rays and MRIs, it kept showing the same thing, L4/5 was a problem and C5/6.
I had surgery, in February on the cervical spine.
However, the doctor was not sure why I had the symptoms I had in my lower back.
x-rays and MRIs, again, did not show anything new that would account for the issues.
Next, I took a MYLOGRAM CAT Scan.
Again, nothing. However, my doctor was not convinced and he did another search of the films and actually found something missed by the technician.
To confirm his findings, he sent me for a CONTRAST MRI.
Sure enough, it showed a cyst in the spinal canal.
If the doctor didn't go any further than the MRI (to save money), he never would have found the cyst.
Guess I am just saying, don't let a doctor write off

Good luck!
Hoping for a pain free day!
Ronnie (GRANDMAr)

@grandmar

@living_strong
Good Morning!
It is always good to get an extra opinion. May I ask why you are going to your 4th doctor?
I am a little confused. Just because your doctor did a hysterectomy and they can't find anything, they are saying your issue is religion? Sorry, that does not make sense to me, unless I just don't understand.
I have a BIG problem when a doctor writes off a problem when they can't 'find anything.'
There are so many tests that the doctor can take.
Good luck!
Hope you are pain free today!
Ronnie (GRANDMAr)

Jump to this post

@grandmar
I have been to a 2 GYNs because other doctors would not have anything to do with me until the female reproductive parts were checked out and cleared. The 1st doctor was the one who monitored me during an extremely difficult and life threatening pre & post pregnancy. Once I was better than before he said all is well and nothing more can be done.

The 2nd doctor was also a GYN who could not find anything. Since I was cleared by one doctor and he couldn't find anything, he started to question me as if I was a person seeking prescription pain medicine. He didn't seem to take into account that I had 3 D&C procedures in 2 months and it was several months post pregnancy. He gave me progesterone pills and said give it 3 more months to see if it helps.

It was the now retired nurse of my primary care physician who requested a referral for me to go to a 3rd doctor. The 3rd doctor is an Oncologist for women. He agreed to to exploratory surgery to get me off the "female issue band-wagon" so I could get seen by other medical specialist. It was after this surgery he admittedly told me that he too did not believe me until he seen that my uterus was not normal. Since, it wasn't normal he agreed to perform a hysterectomy with the comment that it could help. Since the source hasn't been identified for certain he said that it may not eliminate the pain.

Returning to my primary care doctor (whom we love and credit him to life saving responses for my husband) I was giving a clean bill of health and said that only so much can be done then it is up to the Lord. Granted I believe in God, but I also know that letting things sit and relying on religion is rarely an option.

I called 2 Pain Specialist Physician clinics and have been turned down because they do not explore pain sources or treat pelvic pain. They don't seem to think that maybe something in the back or elsewhere could cause the pelvic pain. It seems the work "pelvic" scares physicians away from females who suffer at various pain levels.

I have found an Internal Medicine clinic that I am going to meet with next week for a consultation. They know I am at a loss and am seeking answers. This could turn out to be a money pit. I have another clinic I am in contact with that is in a different state that I will attempt if the Internal Medicine place doesn't help.

Liked by grandmaR

@living_strong Telling you something that I have found important. I, too, have a faith base, and religious practice has been a big part of my life. Done many things with these 78.5 years. Pastor, truck driver, computer programmer, Real Estate loan and grant manager, football player, coach and official, teacher, restaurant bus boy, mechanic, professional student, seminar leader, etc. But I found my answer to my own disease, Hereditary Gelsolin Amyloidosis, in what I learned to do. I take care of the details of my health as best I can. After visiting 60-70 MDs, I started writing up my own story, which anyone can get free at httpjs://bit.Ly/1w7j4j8 under "Amyloid and Old Karl". But it was at that point I realized that the doctors I was seeing never looked at any of my records from their own labs. Mayo, OHSU, … any of them. So I started searching by going back and re-reading my old lab reports, writing down summaries of them, and doing a lot of thinking about what was happening in my life. And I found some sources of terrific material. I bought "Amyloidosis – Diagnosis and Treatment" by the Mayo- Rochester staff, bought it from Amazon as an E-book. And a bunch of other stuff I got free from Helsinki University Hospital, and NIH and other places. As I went along I found a few kernels here and there, and put them in an orderly stack. And guess what? Because there are so many forms of Amyloidosis, I may not have the final exact diagnosis identified, but I know in my gut I am very, very close. And I know a heck of a lot more about what is wrong in my body than do most of the doctors I see. Medicare will not accept my diagnosis, but they were not accepting the others, anyway. Now, I do not expect that I know what your body is doing, but in many ways it sounds like mine. But you might look at my stuff and see if you can get some ideas. And, as a next resort, try the NIH Undiagnosed Disease program. All you need is a doctor whom you trust and will actually write a letter to them to get you into the program. I just lost a Clinical Trial I needed because my doctor was too lazy to write a letter saying only "I suspect Karl has Amyloidosis." )*&^%^$

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