I told you about how Fabgrandpa was feeling off balance for over a year last week. The day I showed him the website I found with all the side effects of the prescription drug he was taking, he quit taking it. We made a little video six days later to show how he was feeling. See for yourself:
Back in February of 2010, Fabgrandpa was going to the VA in Tuscaloosa, Alabama, getting all of his health checkups and tests done. One of those tests was a colonoscopy, done by a private doctor outside of the VA. They did not have a doctor who does colonoscopies at the Tuscaloosa location.
The doctor who did the colonoscopy also did an endoscopy, looking down from Fabgrandpa’s throat into his esophagus and stomach. Dr. Brown diagnosed him with Barret’s Esophagus, and prescribed Prilosec, or omeprazole, for acid reflux to prevent the Barret’s Esophagus getting worse.
As you all know, unless you are a brand new reader, Fabgrandpa started feeling off balance last year, and finally started going to a series of what seems like never ending doctors appointments, trying to find out what has been causing him to be off balance, walking like a drunk man, looking like he may fall any minute. His other symptoms include muscle cramps all over his body; ear pain without ear infection; sore throat; trouble swallowing; tingling in his feet, hands, face; headaches; anxiety; depression; just to name a few.
We saw the primary care doctor; and ear, nose, and throat doctor; a neurologist; and a vascular surgeon, who operated for an ulcerated carotid artery that was found while looking for the cause of the off balance feeling.
After all of those doctor visits, and tons of money out of pocket for the doctor visits and tests that were done, there has been no cause found for the off balance feeling, or any of the other symptoms.
Every now and then, when I can’t sleep, I search for causes by googling Fabgrandpa’s symptoms. Now, in all this time, I have only googled one symptom at a time. And with my google searches, I have ONLY focused on diseases that may be associated with the symptoms that Fabgrandpa has been having. There are many many different diseases that COULD have one or two or three of the symptoms, but I have not found any that could have them all. Things like Parkinson’s Disease; Multiple Sclerosis; to Ear Infection, to Toxic Shock Syndrome. But, he does not have any of these things.
Last night, I was googling yet again trying to find out what is wrong with my husband. I decided to type in this search: “off balance, muscle cramps, tingling, numbness, ear pain, anxiety“. The 4th search result was for this:
PRILOSEC: Side effects, ratings, and patient comments. After nine months of doctor visits, tests, and googling symptoms looking for a DISEASE, I found evidence of the problem being a reaction to a common prescribed medication that my husband takes. I’ll let you be the judge. Read the pages and pages of patient symptoms and notes from taking this drug. Leave me a comment to let me know what you think.
So, after going to doctors since September 3, 2014, the vascular surgeon we saw at the end of March performed an endarterectomy . Endarterectomy is is the general term for the surgical removal of plaque from an artery that has become narrowed or blocked. Normally, they don’t do surgery until the artery is blocked 90%.
Fabgrandpa’s artery was only about 65% blocked, but it had ulcerated. This means that part of the plaque had broken loose, and left a hole where it had been. Blood could pool in the hole, and form a clot. If that happened, and the clot then broke loose from the hole, it could cause a massive stroke. Dr. Whitney said that the risks of NOT having the surgery were greater than the risk of having the surgery.
April 2 was surgery day. We arrived at the hospital around 12:30 and checked in. They took Fabgrandpa back to prep him for surgery, and then Becky and I were allowed to sit with him until they took him back to the operating room.
They took him back to begin surgery around 2:00 p.m. They kept Becky and me informed about the progress of the surgery every hour or so. The surgery took about four hours to complete. When it was over, Dr. Whitney talked to us and explained what he did. He had to cut out a section of the artery, and replace it with a synthetic artery made of bovine pericardium tissue. The incision in Fabgrandpa’s neck was about 8″ to 10″ long.
That hole in the lining of the carotid artery was the culprit. If it had not been removed, Fabgrandpa would still be at risk of a massive stroke. He spent one night in the hospital, then was released to come home. The discharge instructions included no lifting over five pounds for two weeks; wear the support hose until the follow up with Dr. Whitney; and no driving until after the follow up.
Fabgrandpa has recuperated very well, and is doing fine. We went to a concert in Atlanta over the past weekend. While he was tired out after more than he normally would be, he was a happy man to still be here to see his favorite band perform.
Today, we had the three week follow up with the doctor. Dr. Whitney said he is doing excellent, and said that Fabgrandpa should be the “Poster Boy” for this type of surgery. We go back in six weeks for the last follow up.
We still haven’t found the reason for Fabgrandpa being off balance, but we are thankful that we kept looking for a reason, and that the doctors found this problem and were able to correct it. I hope that it means a healthier husband for me, and many more years for him to be around.
I will repeat what I have been saying for the last few posts about this: Don’t Ignore The Symptoms When You Are Just A Little “Off”. Your doctor may not find the cause for your symptom immediately, but they may just accidently find something that will save your life.
The first appointment with the neurologist, Dr. M, was on January 8, 2015. He had us bring in a CD of the MRI that Dr. G, the ENT, had done. He spent some time listening to Fabgrandpa’s symptoms, looking at the records from the recent visits to the primary care and ear/nose/throat doctors. Then he looked at the MRI and said it looks like Fabgrandpa had had a TIA some time in the past.
Dr. M decided to do several tests, most of which were done in his office. I am not sure what all of the tests were for, but one was to check for nerve damage in Fabgrandpa’s legs and feet. One was to test balance. One was done at the hospital, a CTA. Computed Tomography Angiography is used to diagnose and evaluate many diseases of blood vessels and related conditions.
After all the testing was done, Dr. M was on vacation for three weeks, while we sat and worried about Fabgrandpa having another stroke. Finally, we had our last visit with the neurologist on March 19, 2015. At that visit, we still did not have an answer for why Fabgrandpa was feeling off balance. However, Dr. M said that the CTA showed a blockage in the left Carotid Artery. Normally, they don’t worry about a blockage until it is about 90% blocked. But, this blockage also came with an ulcer in the plaque that was blocking the artery.
An ulcerated plaque is where some of the plaque has broken off, and gone with the blood flow through the artery to the brain. The place where the plaque broke off left a hole, or ulcer, in the plaque. The danger in that ulcerated plaque is that blood could settle in the hole, and form a clot, then come out of the ulcer and go to the brain, causing a massive stroke. He said he was referring us to Dr. Whitney, a vascular surgeon.
Our appointment with Dr. Whitney was on March 25, 2015. Dr. Whitney had already looked over Fabgrandpa’s medical records from all the other doctors we had seen. He was very blunt but to the point. Fabgrandpa needed surgery to remove the ulcer and clean out the carotid artery. We talked about the risks involved, what would happen during surgery, and how long he would be in the hospital. Then, Dr. Whitney scheduled surgery for April 2, 2015.
We went home from that visit with Dr. Whitney stunned. We had no idea that the surgery was that urgent. We also discussed how we have been going to doctors since September 3, 2014, looking for the cause for feeling off balance and stumbling when walking, and the doctors accidently found this other thing that could be life threatening. THAT is scarey.
So, I will repeat what I have said before: Don’t Ignore The Symptoms When You Are Just A Little “Off”. Your doctor may not find the cause for your symptom immediately, but they may just accidently find something that will save your life.
In my last post about Fabgrandpa’s health issues, I left off when we were referred to the Ear, Nose, and Throat Specialist, Dr. G. Dr. G was quite pleasant and to the point. We went in telling her that Fabgrandpa had been having some issues with being off balance, and other symptoms like tingling on the top of his head, lots of cramps (in his neck, chest, legs and feet), numbness in his legs and feet, and other things.
Dr. G said that a lot of patients have dizziness or vertigo due to problems with their inner ear, so she would be checking his inner ear for any abnormality or infection. Although Fabgrandpa has never called what he has been experiencing “dizziness”, every doctor we have seen so far has called it that. It is very aggravating to say “I’m feeling off balance” and have the doctor interpret that as saying “I’m feeling dizzy.”
So, on the first visit to Dr. G., she did a very thorough examination of Fabgrandpa’s ears, sinus cavities, and throat. After she was finished looking in all the holes in his head, she did an air and bone conduction assessment of hearing loss and speech recognition. In other words, she tested his hearing. He has some hearing loss, but he is a 65 year old man. That seems to be a normal thing.
Next, on the same visit, she did an assessment of eardrum and muscle function. This test is to measure how well the parts of the inner ear are working. None of these tests showed any reason why Fabgrandpa would be having a feeling of being off balance, or dizziness. So, Dr. G. scheduled an MRI.
We went to the hospital in Carrollton to have the MRI done, and a few days later we were again sitting in Dr. G’s. office. She told us she did not see anything abnormal about the MRI, and could find no reason for Fabgrandpa’s dizziness, or vertigo. She said she was sending us to another office to have some more testing done.
About a week or so later, we were in yet another doctor’s office, having another round of testing done. These tests were doe abnormal eye movement; assessment and recording of balance system during irrigation of both ears; and use of vertical electrodes during eye or balance evaluation. I think by now they have done every test in the medical encyclopedia of ear testing. We had to go back to Dr. G’s. office for results of those tests. Again, she found nothing to indicate why Fabgrandpa should be feeling dizzy, off balance, have vertigo, or anything else they want to call it. While we were at that last office visit with Dr. G., she did an x-ray of his sinus cavities. Still nothing.
Just in case you haven’t been counting, we were now up to nine doctor visits, two medications, six tests, an MRI, and an X-ray, and still had no answer to why the man is feeling off balance. The first doctor visit was on September3, 2014, and the last one up to this point was on November 26, 2014.
Next time: We meet the neurologist.
YOU are your own best advocate.
YOU know when something isn’t just right. YOU are the one who has to keep telling your symptoms to another doctor when the one you are seeing is just not listening or just not getting it.
It’s hard to know where to begin, because I don’t know where the beginning is. So let’s just start in March, 2014. Fabgrandpa decided to quit smoking and drinking beer, and he did it cold turkey. He just laid them down and hasn’t picked them back up.
This was something that I have wanted to happen for a long time. He has COPD, and every cigarette he smoked made me sad. Sad for time I knew was being slashed off of his life. Time of his life that he would have to spend with me. So, yes, it was a selfish wish that I wanted him to stop smoking and drinking.
About a month or so after he stopped smoking and drinking, he started telling me that he felt “off balance”. Not dizzy, not like vertigo, just that he was having trouble with balancing his body. He started sort of “lurching” when he walked, a little bit of a veering off to one side or the other when he took the first step.
Other things he told me about were a tingling on the top of his head, a little numbness in his legs, cramps. Lots of cramps. In his chest, in his neck, in his legs, in his feet. Not being able to remember things. This man who could remember verbatim a conversation he had with someone in 1992 would forget to put his glasses on his face when we were going out to eat.
Then the anger started. He was angry about everything and anything. He screamed at me right in my face over the smallest things. I made a sandwich for him before he asked for it, and that made him so mad he pushed me.
That was the day I told him I was making an appointment for him to go to the doctor. Something had to change. I was not going to wait for him to hit me. The first doctor appointment was with the Physician’s Assistant at my doctor’s office. The PA told Fabgrandpa that he was depressed, and prescribed an anti-depressant.
After about a week on the anti-depressant, Fabgrandpa was calling the doctor to tell her that the medication wasn’t working, and that he did not think that he was depressed. She told him that it would take about a month for the medication to show any effect on the depression, and that he should continue to take it as prescribed. She told him to come back in three weeks.
At the four week mark on the medication, we went back and saw the PA again. She asked Fabgrandpa if the medication was working, and he said no, he didn’t think it was, and that he did not think he was depressed. He was still flying off the handle at times, but I thought I saw an improvement. I told the PA that I thought it was working some but maybe he needed a higher dose of the medication. Sometime during this appointment, the PA looked at Fabgrandpa and said “I thought you said you were better.” And Fabgrandpa said “NO! I did NOT say I was better. My wife said that, but she is not the patient.” She told him to try the meds she prescribed for a little while longer.
We left, and Fabgrandpa said he was not going to go to that PA again. He wanted me to make an appointment with my doctor, who we both like. So, I did. The Dr. told us that sometimes that medication that the PA prescribed just doesn’t work for some people, and she changed the prescription to a different medication, Dilantin. Dilantin is a drug used to help prevent seizures, but it can have the effect of calming a person who has anger problems. She said that she has some other patients, all older men, who have responded well to Dilantin for their anger. So, Fabgrandpa came home and started taking the Dilantin.
My doctor also referred Fabgrandpa to an Ear Nose and Throat specialist, because the ears play an integral part in balancing your body. She wanted to make sure there was no problem with his inner ear that would be causing Fabgrandpa to be off balance.
Next: We go to the ENT.
This photo of us was taken in 2010. Looking at this photo, I think I can see the first skin cancer even then, on the right side of his nose. A spot just a little darker than the rest of his nose. Maybe I’m just imagining it, because I know where it appeared first. He had the first basal cell cancer removed at the VA in Prescott Arizona on July 1, 2011.
Several months ago, we both noticed another place on his nose, this time on the bridge right in the middle. I asked him to go to the VA to get it checked out, but he said it was just a pimple. You can see it in the photo above. And yes, it did seem to go away, and come back, then go away again, several times. A couple of weeks ago, he had an appointment with a dermatologist at the VA in Birmingham. They did a biopsy on three spots, and all three came back as cancerous. There were two basal cell carcinomas and one squamous cell carcinoma, in a cluster on Fabgrandpa’s nose.
Fabgrandpa was referred to The Kirklin Clinic in Birmingham by the VA, because the VA did not have anyone on their staff who could do the MOHS surgery that was needed. We did not know anything at all about The Kirklin Clinic, but it turns out that it is one of the best cancer treatment clinics in the southeast. This is from their website:
With over 257 exam rooms and many nationally-ranked specialties, the Clinic’s staff combines clinical care with teaching and research to produce an environment that is in the best interest of the patient. In order to tailor our treatments to our patients and families’ needs, we collaborate and communicate with them to provide them with the ultimate patient experience and highest quality care
When we were checking in to our hotel on Sunday night, there was another couple checking in at the same time. She has breast cancer, and was referred by her doctor in Florida to the Kirklin Clinic. So, we felt that we were in good hands there.
On Monday, we took the hotel shuttle over to the clinic. We found out first hand that they really do take the patient’s best interests into consideration. There were four doctors, two of whom were students, and three nurses assigned to Mr. Fabgrandpa. They welcomed me to stay in the room while they operated, and must have asked me a dozen times if they could get me anything. They brought coffee and snacks, and still asked if there was anything they could do for us.
They got Fabgrandpa suited up in his open backed gown and on the table, then drew some lines and dots on his nose where they would be operating. Next, they started the anesthesia, which was shots into his nose. They did all they could to make sure it hurt as little as possible.
Dr. Huang was the doctor in charge. He and the other doctors perfomed MOHS surgery, which is “accepted as the single most effective technique for removing Basal Cell Carcinoma and Squamous Cell Carcinoma (BCCs and SCCs), the two most common skin cancers.” (from Skin Cancer.org website). In MOHS surgery, tissue samples are sent to the lab during the surgery, not after. The surgeon can know for sure that they have removed enough tissue right there while they have the patient on the table. Unfortunately, Fabgrandpa’s lesions were deep, so they had to take a lot of tissue to get all of the cancerous ones. Then, they had to take tissue from his upper chest to make a graft to close the two largest wounds.
Those skin patches will never match the color of his nose, but they look a lot better than the deep wounds that were there. When it heals, it will be just another sign of victory over cancer, and that is what counts for me.
If you suspect that you have a skin cancer, don’t wait to get it treated. There is a whopping 97% to 99.5% cure rate for basal cell and squamous cell skin cancer when treated with MOHS surgery.
The Skin Cancer Foundation recommends that everyone practice monthly head-to-toe self examination of their skin, so that they can find any new or changing lesions that might be cancerous or precancerous. Skin cancers found and removed early are almost always curable. Learn about the warnings signs of skin cancer and what to look for during a self examination. If you spot anything suspicious, see a doctor.
Because someone loves your cute little nose (or your big ol snozz!), do it!
Update January 2018: I wanted to add a photo of what Fabgrandpa looks like now, so you can see that even though the tissue grafts are a different color, you really can not tell he had surgery there is you don’t know.
I signed up a while back to participate in the A to Z Challenge, which is where you write one post a day for 26 days in April. On the first, you write about something that starts with the letter “A”, and so on. I was tied up yesterday all day with a sick hubby at the emergency room of our local hospital, so I am behind right away. Imagine that.
My husband, Fabgrandpa has COPD. In case you don’t know, that means Chronic Obstructive Pulmonary Disease. Symptoms of COPD include shortness of breath, coughing, and sputum production. It can include chronic bronchitis and emphysema. It usually gets worse the older you get, and is aggravated by smoking, pollution, dust, pollen, and other irritants. Any common cold can turn into bronchitis or pneumonia for Fabgrandpa quite quickly.
He has been coughing more than usual this spring, and the coughing has been preventing him from sleeping. He has been fatigued most days. The last four or five days has been worse than ever, with the coughing seeming to be out of control. He sounds like he is gasping for every breathe, like has been running a marathon during the night.
At the hospital, they gave him a breathing treatment and a steroid shot, and took him for a chest x-ray. There was also an EKG. Both the x-ray and the EKG were good, and when the breathing treatment was completed, Fabgrandpa was already feeling much better. He was discharged with four prescription medications: Prednisone, a Z-pack (antibiotic), a decongestant, and an inhaler that has a combination of things including albuterol. We have been through this before, several times, so we know what to do. Now we just have to wait while the meds do their thing.