Hi everybody. I'm 15 months out from surgery and 10 months out from chemo and radiation. My problem that seems to be hanging on is extreme dizziness. It doesn't always happen but it is very common. When I stand up I will get dizzy. I can sit down and wait a few seconds and try again and most of the time be ok. Then, there are times like this morning that I stand up and am ok, walk about 12 feet and it will hit. I start getting dizzy, everything starts feeling funny, my ears start to burn, my right leg will begin to twitch and I'm in real trouble. I called for my husband this morning and he got to me in time to help me get to the floor without falling but I sat/squatted at such an angle that I twisted my left leg right below my knee. I have spoken with all of my doctors about this and they assure me it's not from the surgery, chemo or radiation, that it's just my blood pressure and the blood pooling in my feet and not circulating like it should.

Does anyone else have any troubles like this after HN surgery? Any suggestions on what to do other than what we are doing now? I was advised to get support stockings. This I haven't done yet. Anybody use them and does it help?

I understand that this may be something I have to learn to live with but was just wondering about any input from you wonderful folks.

Thanks so much!

Any chance this could be a form of vertigo?

I do, all the time, and was commenting on it today. As soon as I stand, I have to go back back to my chair. I have chronic anemia, neuropathy, kidney disease, tinnitis so these maybe be an issue, and assume they tested your hemoglobin, creatinine, hearing. It can also be from surgery, and had a RND also, with the neck vein, nerve and neck muscle removed, so maybe there is lack of blood flow to the brain or something unrelated, like pain medication, sitting to long, other illnesses, so I haven't found out the cause several years later. I hope you find answers.

Yes, especially the first couple of months after treatment. I even passed out a couple of times and hit the floor. It's better now but still, there are times when I've been relaxing for a period of time that I get the same thing.

Docs say it's orthostatic hypotension. When your blood pressure drops when you stand up too quickly because it has pooled in the lower extremities of your body. My symptoms were aggravated by BP meds and I have had to lower my doses due to the amount of weight I lost during treatment.

"T"

Thanks all. I don't think it's vertigo. Mostly they say blood pressure drops due to pooling. I think I'm gonna try the support stockings/compression socks and see if that helps at all. Just really frustrating not being able to just get up and go when I need to.

Any other suggestions/opinions would be most welcome!

Thanks!

I do this sometimes, it seems my equilibrium is off. I know cisplatin cause cause hearing issues, I believe the ears can mess with equilibrium, I get a ringing in my ear very occasionally. I have been wondering if it has something to do with that.

And I did wake up on the floor of my kitchen once. Checked my BP and it was low. Most days I don't take my BP meds anymore, I guess that can be attributed to the weight loss.

Oh, and another could be blood sugar. I have diabetes too, so is usually high, but if I take too much insulin, it can drop too low, which happened yesterday, and know the feelings of it coming on, went to get orange juice, and fell back into my chair. I love that recliner lol. Could be a combination of factors.

Sandra,

The problem you describe is fairly common after chemo and radiation. Orthostatic hypotension as Mr "T" points out is the clinical diagnosis. Check the bp in your ankles immediately after it happens. You should see elevated bp with arm bp normal or maybe low. The problem is really from nerve damage created by chemo and much more so by radiation. Dehydration, electrolyte imbalance, especially potassium, exacerbates it. Checking bp in each arm, ankles can also help identify carotid issues from surgery early on and the carotid should be periodically checked.

With all the nerves in the neck it is difficult for the signals to get past the neck both coming and going. The nerve involved is the longest in the body and has two main branches, one down the left and one down the right. The right side senses the needed change in bp and heart rate then adjusts things as you get up and walk

If the dizziness happens almost as soon as you stand it is more likely a dehydration problem. Of it usually happens between 7-12 steps it is a lag in nerve impulses from radiation, chemo or any combination.

The easiest check for dehydration is taking bp standing and sitting. If it is much lower standing there is a high likelihood dehydration is the cause.

Another contributor to the problem is excess calcium and calcifications of veins. This is pretty common too after treatment. The natural process of cellular destruction/trauma is using more potassium while throwing off calcium. High serum calcium needs to be addressed as calcium plaque buildup has a lot of problems. It is often ignored unless over 11 with abnormal parathyroid hormone levels as the parathyroid glands regulate calcium levels.

Sounds like low BP. Have you had that checked recently?

I check my BP quite often, especially when I have these "spells". I've never checked it in my ankles though. I will definitely try that next time. The doctors say that they had to take part of the jugular vein in the left side of my neck when they did surgery, clipped several nerves because the tumors had wrapped themselves around them all. They thought the use of my tongue would be effected but it wasn't. My primary doctor told us that there are many receptors in that area and could be a major factor in my dizzy spells. I had high blood pressure, diabetes and cholesterol issues prior to the surgery but since loosing so much weight I have been able to stop taking meds for all of those issues. I drink water constantly so I don't think it is a dehydration issue. Go with a water bottle 24/7. Have it by my bedside at night and always take a drink if I wake up during the night.

Thanks all for the very helpful information and some I will be asking my doctor about when I go next. I feel my frustration level increasing each time I have one of the bad spells, just want to sit down and cry but know it won't help. Guess I will just have to get use to it?? What do you all think?

I had a few problems during the first year but nothing until year 8. It happens often but only in the summer. Last week was the first time in 2 years.

I also have the same problem. They even sent me next to a faint and fall clinic at the Unversity of Utah hospital. They did the blood persure check from seating to standing. It would fall after standing for a min. I usually can make it about 12 to 20 steps and it hit. Sometime I have to seat down at once or if a bad one I have to lay right down on the floor. Then I can get up and start moving. I hate when it hit when I get out of the car. A few times I have to lay my upper body on the trunk of the car bad hope the legs will not give out.
In six and half years I have 3 rounds of cancer and each time it's a different cancer. Round one was chemo and radiation, round two was 2 inched of the right back jaw removed and rebuilt anf the last round was the front part of my tongue removed and a skin flap done. Plus now all limp nodes have been removed from my neck.