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#518270 - 02/16/18 01:47 PM Re: recent surgery problems
AnitaC Offline
Member

Registered: 09/30/17
Posts: 25
Loc: Oregon
Hi,
I need advice. I had surgery January 3rd. It was laminectomy & dicectomy (sp?). My recovery went well at first. By the close of the month my incision site began to swell. Not hot, not seeming to be infected. I was going in for a follow up with the surgeon. I put my back brace on and went to start my car. That’s all I remember. My daughter found me in the car, foot on the gas, engine revving. Luckily it was still in park. When I came to, I was dizzy, tingly etc. taking off the belt helped but my head was pounding, chest felt like it would explode. Since then I have not been able to sit or lay with my back pressed against anything. My doctor ordered another MRI. Had a friend drive me there. I could not lay down for it because my head began pounding again, my eyes felt like they were bulging out of my head, chest tight, pain from intense pressure. Plus I am still struggling with intense sciatic pain.
Here’s my problem: my neurosurgeon says that my inability to lay flat or have pressure on my back has nothing to do with my surgery and or the incision site???
I’ve been to the ER because I was worried something significant was going on and my doctor was leaving on vacation and he told me if I as that worried....”go to the ER”.
All of my labs were good, my blood pressure was fine etc. so they called his colleague ho also said that my symptoms were not related to my surgery and to see my regular doctor when he returns from vacation. I have an appointment this coming Monday. What do I do? How do I advocate for myself when he is so dismissive?
Thank you to all who read this and respond. I really appreciate it.
One last bit....my vision seems a bit blurry especially when I move my head a certain way. Thank you!!! Anita

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#518282 - 02/22/18 04:49 AM Re: recent surgery problems [Re: AnitaC]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9755
Loc: Brittany, France (since Nov 08...
Anita - the problems sound like after effects from the surgery. I would suggest taking this further and, look to take a second opinion. Here are several links that you can look through - lots of information :-
https://www.google.fr/search?q=laminectomy+%26+dicectomy+-+side+effects&rlz=1C1PRFE_enFR702FR716&oq=laminectomy+%26+dicectomy+-+side+effects&aqs=chrome..69i57.21739j0j7&sourceid=chrome&ie=UTF-8

As for the eyes. Spine surgery and resulting eye damage are a known factor in spine surgery. Please go and see an ophthalmologist. Take care -
_________________________
MollyC1i - Riding OutAS

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#518286 - 02/24/18 12:14 AM Re: recent surgery problems [Re: MollyC1i]
AnitaC Offline
Member

Registered: 09/30/17
Posts: 25
Loc: Oregon
Thank you Molly. I appreciate the info and your response!!

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#518302 - 02/26/18 06:08 AM Re: recent surgery problems [Re: AnitaC]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Yes, get a second opinion. The doctor probably is afraid that he made a mistake and is avoiding correcting the problem. Doctors are not invulnerable to fear of incompetence and they will try to bury it. It happens often and they protect each other -- it's an "old boys club." I think that I posted a story about how a surgeon left my mother's arm broken for a year and managed to hide it by manipulating radiology reports. I took her to see a second surgeon and the cat came out of the bag. The second surgeon called the first surgeon and warned him that he had an irate on its way; the fire in me removed all awareness of any illness I had. You should have seen how cooperative the first surgeon was (he must have seen "murder" in my eyes!!). He passed on control of the case to the best surgeon available and her arm was quickly repaired.

On the other hand maybe your surgeon made no mistake but your body is reacting and creating scar tissue that is irritating or choking blood vessels or nerves. Inflammation could even trap nerves and blood vessels. Careful of postoperative infection. Physiotherapy to free up trapped blood vessels or nerves could help.

I have not had surgery but I have a similar head pain problem that developed from major inflammation at the base of the skull and in the cervical vertebra from what I believe to have been the establishment of a chronic infection from a scuba diving accident that happened in August 2013; sea water got into my left inner ear. That weak infection only took an opportunity to penetrate connective tissues that was damaged 22 years earlier with a bad chiropractic manouver. All that combined with a job that deprived me of sleep for a full year after the scuba accident created huge pain and inflammation in the base of the skull. Because of the pain I took NSAIDs that disrupted my microbiome resulting in a dysfuntional immune system and so all Hell broke loose and my whole body became effected for four months with my first full blown AS symptoms! Furthermore, there probably was a set of old stealth infections from wood tick bites that I had been supressing for perhaps 25 years. When it rains it pours!!

The stress of surgury could be your prverbial "straw" that broke the camel's back, yet the surgery went perfect! Something in your whole history might just be taking the opportunity of too much stress on your system.

My head pain is unlike a classic "head ache" or migraine. If I fall asleep on my back I will wake up with pain in the nasal area, the left maxillary sinus, left cheek, jaw, eye orbital, temple, part of the upper skull and the occipital bone in the back of the head. After sitting up upon waking the pain would reduce within half a minute. It doesn't matter if I am awake or asleep. All that matters is that I am lying on my back. Of course if I am awake I do not let the pain build. However if I am asleep it will build and I can wake up wishing I was dead! Some people sleep with a tennis ball tied to their back so that they sleep on their side. I still have the problem but it isn't as intense as it used to be; perhaps because I have trained myself to sleep on my side.

In December an internal medicine doctor suggested that it is trigeminal neuralgia but that could not explain all the symptoms or the quality of the pain. He also suggested "cluster headaches." Wrong!! Doctors need at least an hour of time to listen and think about the whole history and ask questions. Fifteen minutes is not enough.

Something about the posture seems to be putting pressure on blood vessels or nerves in the neck. I dug into the Internet and found an explanation for my case called "false trigeminal neuralgia" in which nerve irritation in the cervical area gets referred up into the trigeminnal nerve creating the head pain.

It grew from chronic low-level inflammation in the spine and in the neck neck tissue. I have had MRIs of my entire spine however I have not had the time to translate it from Chinese. I did have an internist look at the radiology reports and she quickly asked me if I was having numb hands and arms. She was right. She had no time to explain the mechanism to me. I believe that it is stenosis through my whole spine from burning inflammation.

However more of my arms are involved now. All that started back in 2014, went away, then has slowly come back and gotten worse. Neurological symptoms have spread through my whole body and I have a strong feeling that it is stealth infection driven. They create inflammation.

I quit working 14 months ago and I have been poor at disciplining myself to stay physically active. I rapidly declined and that is when it spread from my spine and went into perifrial nerves. Since I believe that there are stealth infections in my body that are driving inflammation and symptoms of AS one hypothesis about how exercise slowed disease progression is as follows:

Running 5 km three times a week was a major benefit. In the age of the internet I imagine everyone knows that regular exercise boosts mitochondria populations. When mitochondria are stressed to produce ATP to carry energy the byproduct is hydrogen peroxide (H2O2). High concentrations of H2O2 in a cell triggers something called a reactive oxygen species cascade (ROS cascade) inside the cells. The combination of H2O2 and ROS is destructive to the cell structures but they are also destructive to pathogens that hide themselves inside body cells. Your body will repair itself from the oxidative damage from H2O2 and ROS but some of the pathogens will die! This is a good natural way to kill stealth infections that antibodies and macrophages can not get at when the microbe hides inside the cell. Also, stealth infection are able to modulate the immune system so that the immune system is unable to use antibodies to tag the cell for destruction that the microbe is hiding inside. Stealth infections are very difficult to detect and eliminate.

Lastly, there are many stealth infections that are associated with fibromyalgia/ME, MS, cancer, CFS, GWI, Lyme disease, Morgellons, etc. As time goes on more and more stealth infections are being found with diseases like the afore mentioned diseases and even some dementia, etc. It is important to get those stealth infections lowered even if they are not the cause. It seems that we can't get rid of them and the evidence is growing that antibiotics are not very effective; perhaps actually more harmful. The best thing to do is strengthen the immune system and not suppress it!

It is possible that stealth infections are innocuous until the opportunity for them to become pathogenic arises because of new colonizations that they synergize with or environmental toxin overload or system disturbance like antibiotic use.

Promote health so there is less need to combat disease.

I hope that this helps.
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#518303 - 02/26/18 06:23 AM Re: recent surgery problems [Re: Robin_H]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 258
Originally Posted By Robin_H


I have not had surgery



For someone who has not had surgery you write a damn long post about it.

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#518304 - 02/26/18 06:51 AM Re: recent surgery problems [Re: AnitaC]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 253
Loc: Hubei, China
Thanks Frederick. So you really get my point!

The head pain can be a billion other things that the surgery is not a direct cause of. The surgery is only the proverbial straw that caused a huge accumulation of other things to finally tumble.

Cheers!
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#518308 - 02/27/18 06:22 AM Re: recent surgery problems [Re: Robin_H]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 258
Originally Posted By Robin_H
Thanks Frederick. So you really get my point!

Cheers!


But your point is just too long and over technical.
We don't all have a Phd in medicine

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#518309 - 02/27/18 07:12 PM Re: recent surgery problems [Re: AnitaC]
AnitaC Offline
Member

Registered: 09/30/17
Posts: 25
Loc: Oregon
Robin, thank you as well!

So...I was able to get an MRI by laying on an inflatable donut. We got it from labor/delivery. It was done with contrast. Well, what do you know??? Turns out my inability to lay on my back or have any pressure on my incision site “IS” related to my surgery.

Turns out that the partial removal of the L4- disk was not enough. He said that he saw the tear on the inside of the disk but it looked to be healing so they only removed the ruptured part. Then the rest of the disk ruptured. I’ve been in horrible pain for over three weeks because of this. I will have to have another surgery to fix it which sets me back in recovery also. He says the fluid build up is a hematoma from the rupture. Hmmm. Too bad no one wanted to listen to me. I’m angry that he kept blowing me off. Now it will take longer to be back to work, I’m out of sick pay, vacation pay and this doctor could have helped me weeks ago.
He said I’m one of the 2-3% of people this happens to. Previously tho, he said my symptoms could not be related to my surgery??? Really!!
I’m glad that the arthritis was cleaned up during my first surgery but this really stinks! Anyway, thanks for listening and offering advice, I really appreciate it!
I’ll be glad to go back to just having AS, fibromyalgia and all the other stuff I have going on. I need this chapter of back surgery over. 👍🏽

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#518311 - 02/27/18 07:32 PM Re: recent surgery problems [Re: AnitaC]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9755
Loc: Brittany, France (since Nov 08...
Good to have got that cleared up. Makes one soooo angry at what goes on in these consultations. Grrrrrr.

Anita, how are the eyes. Have you seen an ophthalmologist ? With a second spinal ssurgery coming up... Would be good to obtain expert opinion.

Take care -
_________________________
MollyC1i - Riding OutAS

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#518313 - 02/27/18 09:40 PM Re: recent surgery problems [Re: AnitaC]
AnitaC Offline
Member

Registered: 09/30/17
Posts: 25
Loc: Oregon
Hi Molly,
I have yet to see an ophthalmologist. Since I am unable to drive it has complicated things a bit. My husband can take me when he has a day off. I just got the info about the hematoma and next I work on the eyes. Thanks for your help. I have many emotions about all things. I need to stay focused tho! 🧐

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